Walking forwards

With my thyroid operation behind me, it feels like I’m standing at a crossroads.  I’m nearing the end of one particular road, whilst beginning another.  However there has been a little, and hopefully final, unexpected twist at the end of that first road.

I went back to hospital 3 weeks after my operation for my follow up appointment.  This was booked in so I could be given the results of the pathology report on my thyroidectomy and to monitor my thyroid levels to make sure I was on the right amount of medication to replace my thyroid function.  Mr Smellie was away so instead I met the new registrar.  She was happy with my thyroid levels for now, but asked if anyone had spoken to me about the pathology results.  When I answered “No” she told me that the results showed that I’d had follicular thyroid cancer.

It feels like my thyroid has had a story all of it’s own, and is one which has run from quite early on following my bowel cancer diagnosis.  When my friend Michelle and I met my oncologist for the first time in February 2016,  she asked me if I wanted to become part of a study run out of UCL Hospital in London.  It involved me having a longer than usual MRI scan.  In it they would scan my whole body rather than focusing on one particular part of my body like they usually do.  At the time I really wasn’t keen.  I’d hated my first MRI, but both Doctor Ahmad and my friend gently persuaded me that it might help and give more information as to what was going on in my body.   At the time I had no idea that regular MRIs would become part and parcel of my life.

This MRI was the first scan that questioned a nodule in my thyroid.  I had had no adverse symptoms but the report flagged up that it should perhaps be studied in more depth.  So near the end of my radiotherapy treatment I had an ultrasound and biopsy on this nodule.

Initially, the biopsy results appeared to show that the cancer had spread from my bowel, but this seemed unlikely as I had no signs of secondary cancer in my liver or lungs, so I had another biopsy and a few weeks later I was told it was primary thyroid cancer.  However by August, after more experts had studied the biopsy it was concluded to be benign.  By this time, I had been referred to the specialist Mr Smellie and he was always convinced we needed to remove the whole thyroid because of it’s link to my genetic mutation.

So although I knew the thyroid always had to come out, by the time I waltzed up to my follow up,  I was convinced it was benign.  So to hear it had been cancer all this time was a little bit of a shock.   However the doctor quickly resssured me that it was nothing like my bowel cancer experience.  The type of thyroid cancer they had found had not been invasive and it was now all gone.  She seemed to think I wouldn’t need anymore treatment.  Nevertheless she felt it was important to see the consultant again when he was back in clinic.

Three weeks later I was back seeing Mr Smellie.  Whilst he reassured me that the tumour was now all gone, he told me, he felt it was prudent that I had some follow up treatment in the course of a one off radioactive iodine treatment.  I’m booked in to see an oncologist back at the Marsden, in early June,  when he will prescribe that treatment.  As far as my understanding goes,  it takes part over two days.  I’ll be staying in an isolated room where I have a radioactive tablet and we wait as it processes through my body.  It helps ensure that there is no risk of any spread to my neck.  Once I’m not radioactive anymore I can leave.  Mr Smellie advised me to take a couple of good books so any recommendations are greatly appreciated!

On a serious note,  I think it was better to discover I had cancer in two parts of my body at the same time after I had my thyroid out.  It’s all gone now and I feel very fortunate to have had such good care from Mr Smellie and his team.  It’s made me reflect on the mutation that I was born with.  Because it did not run in our family I only discovered I had the gene in my mid 40s, and in some ways I think I’m glad of that.  Many people discover they have the gene mutation in their teenage years and perhaps live with the shadow of the disease and it’s side effects for longer.  For me, I lived my life blissfully unaware until I was diagnosed with my cancer.  Of course the flipside of that is that I developed a tumour but it seems I would have had to have 3 big surgeries anyway.  Mind you I would have avoided radiotherapy and chemotherapy and I wouldn’t wish those treatments on anyone.

So here I am.  Nearly at the end of that first road.  I’ve been on it for 2 and a half years and I’ve weathered many twists and unexpected turns.  I can’t tell you how grateful I feel to have reached this point.  Grateful to the many wonderful health care professionals who have looked after me with such care and warmth and grateful for the amazing support from my family and friends both near but also from far and wide.

However now I’m standing at the beginning of a new road it’s a strange feeling. I’m excited for the future of course,  but I don’t always feel as euphoric as I’d imagined I would.  That’s probably because for so long my life has been made up of hospital appointments, treatments and surgeries.  I was always primed for the next step, eager to get to the next stage.  Now I’m so nearly there, at times, I’m not quite sure what to do with myself anymore. That sense of purpose gone.

When you’re sick you are constantly seeing your nurses and doctors but in my experience when that ended I felt strangely bereft.  I wanted to switch back into old life routines but somehow it’s didn’t always feel that easy.  It’s so difficult to articulate to others because you’re not quite sure it makes sense.

However there are great support networks out there, and I’ve accessed one such support group that’s run through a charity based at my local hospital.  Personally,  it’s really helped me to reach out, listen and share with others who have had similar experiences.

For me, the reality of life post cancer is that it can be a challenge.  Whilst I feel proud and positive of my two stomas, I’m still adjusting.  Warm weather with a high stoma output can be difficult.   I really have to make sure I drink the right kind of fluid to keep hydrated.  If I drink too much normal liquid, ironically I can be in danger of dehydration and that requires more thought in the spring and summer months.

Since my Whipple procedure I have lots of scar tissue around my ileostomy stoma so some foods can cause me some discomfort when being processed.  I just have to be a little more careful of what I eat.  Of course, over time, this will become easier and I’m pretty determined to live as ordinary a life as possible, but at the moment my stomas are never far from my mind.

Like many others who have gone through various treatments , I struggle with fatigue.  I’ve always been a fit and active person but the truth is that I won’t ever be quite the same again.  I try and take life day by day, approaching a new kind of normal.  I’ve never been a fan of the phrase but the more I walk forward, the more I realise there’s more than a little truth to the saying.  I have discovered that keeping active does help my mind and body.  I’ve recently begun a couch to 5km programme and that’s been great.

Please don’t misunderstand me though,  most days I feel really positive.  Indeed I feel fortunate to be standing here at the start of something new.  I realise there are so many people affected by this awful disease who would give anything to be standing here too.  Like many others I have lost close friends whilst going through treatment.  One of my best friends, Lisa,  died at the beginning of March last year, weeks before my pelvic exenteration, when her soft tissue sarcoma finally overcame her lungs.  Recently another friend,  Alison, passed away when her breast cancer returned with a vengeance.  Both of them were wonderful people who died years before their time.

When I’m having a difficult day I think of them and what they would have done to be standing here too.   Despite being dealt the most difficult of hands,  I learnt so much from both of them.  Even in the darkest of times they lived life as fully as they could.  Determined and dignified, and always thinking of others.   They might not be here in body anymore but they’re with me in spirit.  I feel like I’m walking that road forwards for all of us.

 

 

 

 

 

 

 

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Thyroid

It’s been a little while since I put pen to paper.  Although it’s only been a couple of months, it feels like a lot has happened.  I’ve had some really fun times but there has been a little bit of hospital action included too, so I’ll round that up first.

In mid February I returned to the Marsden to see Mr Rasheed in clinic.  It was great to catch up.  Although pleased with my progress, it was time for new scans to be ordered to see that everything was as it should be, in both my pelvis and liver.  We were fast approaching the one year anniversary of my big operation and I was also due to see Mr Smellie, my thyroid surgeon, a few days later,  to get a date booked in for my thyroidectomy.

These scans took place in mid March.  An MRI and CT scan, and on the assumption that these would be all clear,  Mr Smellie booked me in for an operation with him on 27th March.  The reason he felt that my thyroid should come out is due to an oncyltic nodule I had in it.  Whilst not being cancerous yet,  he was convinced that due to the genetic make up of my rectal cancer, it would eventually turn that way.  So best to get it taken out before anything nasty appeared.  I asked him how long I’d be in hospital? “24 hours” he replied “ it’ll be like a walk in the park compared to what you’re used to” he reassured me.

The feedback from the scans was positive. Mr Rasheed has ordered a couple of extra scans to double check something but these had no bearing on the thyroid operation so I was free to go ahead with that as planned.  So my friend Katy and I headed in early on the day of my operation, ready for my 7.30 am check in.

Once again the staff were all lovely at hospital and both the anaesthetist and Registrar put me at ease when they talked us through the operation ahead of me. It would take about an hour and I would only need to be in hospital for a couple of days at most.  I was third on the morning list so I went down to theatre at about midday.  However there was nearly a slight delay.

When I was in hospital for my Whipple operation, I was tested for Carbapenemase Producing Enterobacteriacease (CPE for short) and was found to be a carrier. At the time,  I knew nothing about this either, but have learnt much a little more. In very basic terms, this means that certain bacteria live harmlessly in my gut.

However it also means that I now have to be isolated when I’m an inpatient.  My gut is resistant to certain antibiotics but they know this and can use other drugs if necessary.  However the bacteria can be very dangerous if it gets into the bloodstream or bladder of others and can cause infection,  so the hospital staff have to be extra careful to not cross contaminate other patients.  When out and about in ordinary life,  it’s not a problem, it’s just in hospital that we have to be extra vigilant.

I had told both Mr Smellie and the nurse in charge of my pre op appointment of this colonisation and indeed the nurse spoke to the Marsden to confirm this, the day after I saw him.   However,  as I lay on the trolley awaiting the next steps,  I observed some concerned looks as the nurse and anaesthetist’s assistant looked at my notes online.  Something told me, this was to do with my CPE.  A few minutes later the theatre was informed and the registerar came out to talk to me.  “There’s been a change of plan” she told me.  “because of the CPE, we need to put you to the back of the list and get on with everyone else.  We will need to deep clean this room first and if we go ahead with you, we will get really behind time.”

To say I was disappointed is an understatement. I’d been nill by mouth for 12 hours already, was all prepped for the operation, and was really tired.  It felt, that through no fault of my own, I was being penalised.  I’d kept my side of the bargain and to the best of my ability had made sure that hospital staff knew of my status before this kind of situation arose.  I wouldn’t have minded if they had told me to come in for the end of the afternoon list, because then at least I could have eaten breakfast.  But they hadn’t.

It’s horrid having this condition anyway.  You notice the differences straight away when you have to be isolated because the nurses tend to try and restrict their contact with you.  They have to gown up before they enter your room and obviously have to be more mindful of cross contamination, but speaking as the patient, this can help to make you feel very alone.   To be fair to the registrar, she admitted that the change of plan was probably her mistake, but it didn’t make me feel much better.

She returned to the theatre to discuss the situation some more and in the meantime, my nurse was really sweet and empathised with my point of view.  Bless her, she really cheered me up.  However a few minutes later, there was another change of plan.  My operation could go ahead as planned.  They’d found another theatre to move into for the rest of the day’s list. “thank goodness” I thought. “ put me to sleep and let’s get on with this!”

A couple of hours later I began to come to.  It took me a while to work out that I was in my very own recovery room with a specially assigned nurse.  In fact my recovery room was the theatre they’d used to operate on me in! My nurse was fantastic and we chatted a little bit in between my sleeping.  After a while the doctor came to see me to say I’d done well and that I could have a cup of tea.  Hurrah!

I didn’t get up to my room until after 7pm, and after visiting hours,  but I was pretty shattered anyway and after a late dinner I fell asleep.  As usual sleep was pretty disturbed with my heart rate and blood pressure being taken fairly regularly but I slept well in between.  The next morning  and a little while after my breakfast, the doctors came to see me on their morning rounds.  I was very happy to be told I could go home once my meds were ready along with my discharge notes.

My friend Katy returned to hospital to pick me up and we left just after lunch.  I felt pretty good considering.  Just a little tired and my throat was a little sore but nothing too bad.  It felt so good to be able to eat and drink as I liked so soon after my operation!

Since coming home I’ve had my stitches removed and thyroid function tested in my local surgery.  I will return to see Mr Smellie in clinic next week for more blood tests. I’ll be on thyroxine for the rest of my life which are tablets that replicate what my thyroid used to do.  I’ll be well monitored for a few months to make sure I’m on the right dose but it feels good to have the operation finally out of the way.  It’s always felt like just over the rainbow to me.

It’s quite amazing because it’s the third operation I’d had in a year.  I’m so fortunate to have been placed under the care of three fantastic surgeons. And I’m enormously grateful to the NHS.  Although there have been a few hiccups along the way I’ve felt so cared for by everyone who has looked after me.

Away from hospital the highlight of the past few months was undoubtedly my trip to Dublin to receive my Irish Women’s rugby cap.  Back in another life, 25 years ago, I had recently graduated from college and was living and working in Newcastle where my Dad and step mum lived.  One day, my friend Annie and I,  who also played rugby at our local club, Novocastrians, saw an advert in Rugby World magazine to trial out for a newly formed Irish side.  There was a first international planned for Valentines Day the following year, up in Edinburgh against Scotland.

Both our mothers were Irish so we thought why not!  My mum died from melanoma when I was a baby but for 7 of my formative years I had been brought up in Holywood, (also home of Rory Mcllroy ) outside Belfast, by my beloved Great Auntie Gladys.  Despite moving back to live with my Dad when he remarried,  I spent all my Easter and summer holidays with her, my grandmother and step Grandfather and a host of close family friends, the same age as me.

If truth be told, it was a bit of a girls own story, as we couldn’t actually play at our first trial match at Sale Rugby club, due to rock hard frost covering the pitch but we played a trial game in January over in Belfast. I’d only played for 3 years and mostly at inside centre.. but I always felt I was better suited to scrum half so I played there instead.

Back in those days not that many women played rugby back in Ireland, so certainly for me, not so for Annie, I think I made it into the starting line up due to having more experience than Orla my opposite number.  Nevertheless we were overjoyed to be picked and on February 14th 1993 we stepped out in front of a 1000 strong crowd at Raeburn Place.  I’ll never forget the day and the thrill of playing in front of so many people, who included players such as the wonderful Doddie Weir who so tragically has been diagnosed with MND recently.

Despite losing 10 -0, I think we all played well and the celebrations and party afterwards are the stuff of legends.  The next year at more trials, the word had got out and a nippy little scrum half from Charlton turned up in Belfast.  She played in the premiership for Blackheath, and was infinitely better than me!  This meant that I am a one cap wonder, but sure,you’ll never be able to take that non existent (until 25 years later) cap away from me!

So in early March of this year, and due to tireless work from some amazing women, the 107 ( I think) players who never received a cap whilst playing between 1993 and 2006 players were finally invited to the Aviva stadium to receive our caps.  The day took on extra signifance for us “pioneers “ as it took place on the day Ireland played Scotland.  And indeed we went to the ground and supported the girls in that match before our meal and cap giving ceremony.

The day took on an even more special feel for me personally as my youngest niece, Helen, was playing for Scotland.  She played so well and even scored a try in a winning performance.  It was so fantastic to see her play so well and I felt very proud.

We were able to take a plus one with us and it was fantastic to be able to take my great friend Kirsty with me.  She’s been such an amazing support throughout the last year and I was so happy she could join me.  She has no idea about rugby, but had a wonderful day,  as she met some of the brilliant  women I’ve met and played rugby with over the years.

It was a big moment for me as I was able to let my hair down a little bit.  A few people there knew of my diagnosis but most didn’t.   It was just so lovely to be able to be “me” and talk about rugby days and ordinary subjects.  In the past few weeks I’ve become increasingly confident in both my stoma bags,  and despite needing to limit normal fluids as much as possible, most days,  so as to minimise the output on my “wet” ileostomy stoma,  I was able to relax a little and enjoy a few glasses of wine.

A few weeks ago I busily told one of my stoma nurses of my plan to limit normal drinks to a litre per day.  However, whilst understanding this perspective,  she reassured me that with the help of loperamide and osto sorbs sachets in my ileostomy bag which absorb the effluent nature of my output,  I could live a little without always having these restrictions.  “Otherwise,” she asked me “ why have we done all of this?” She pointed at my body and bags.  As long as I keep hydrated there’s no reason why I can’t enjoy a night out from time to time.  It was great advice.

Slowly but surely I feel like life is beginning to return to a sense of normality and non hospital life.  If I’m honest it’s a pretty strange feeling.  Whilst feeling enormously fortunate, when so many others aren’t so lucky, it’s taking me some time to adjust to these circumstances.  It’s a subject I’m sure I’ll return to in other blogs but I’ll leave that for another day.

On a final note, April is Bowel cancer awareness month.  With this in mind I urge you to familiarise yourself with the symptoms  of the disease.  A change in bowel habits lasting over 3 weeks, feeling lethargic and having a lack of energy,  unexplained weight loss, blood in your stools and on occasions pain in your abdomen.  I unconsciously ignored these signs for a few months before diagnosis. If you think you have any of these symptoms then visit your GP.  In most cases it will be nothing but there’s no harm in checking.  If caught early Bowel cancer is eminently beatable.

 

 

A new year

I write this latest update in a reflective mood.  That’s probably because its a little over two years ago since my diagnosis and nearly a year on from my life saving operation.

Towards the end of last year I had quite a fright.  Whilst in hospital being treated for dehydration I was sent for an ultrasound scan on my liver.  There were, apparently, some abnormalities that needed further investigation.  The word cancer was mentioned.  Could it have spread there as well?  Thankfully a few weeks later a PET scan and a guided biopsy by ultrasound confirmed that there were more benign adenomas on my liver.  Not more disease.

As my friend Kirsty and I celebrated over brunch, it dawned on me that finally,  I was inching closer to a life where hospitals weren’t the centre of my world.  One of the ways I’ve learnt to cope with my diagnosis is to not get ahead of myself and plan too much for the future.  Now all of a sudden I could allow my mind to wander.

A little bit later I spoke to my brother to give him the good news.  “It must be such a huge relief “ he told me “ You’ve had quite a year. “ All of a sudden,  my emotions caught up with me.  I found myself choking back the tears.  “Yes” I answered “ it really has.”  In that moment I realised there was no need to rush back into “normal life.” I may have negotiated through the majority of the physical obstacles put in my way but psychologically my mind was only just beginning to catch up.

Mr Rasheed had encouraged me to get away in the early part of this year.  He wouldn’t need to see me for a couple of months.  “Don’t go too far” he said “ France or Spain” he suggested.  With that thought, a seed was sown.  Perhaps I could go and stay with some family friends in Spain for a week in early January?  I rang my Dad. “ Would my step mother’s childhood friends, sisters,  Sonia and Hermoine,  be open to me going out to visit them for a week?” I wondered.   As it turned out, not only were they more than happy to have me,  but they invited him too.  This was perfect.  I hadn’t seen my dad since the summer.  This way I got to spend time with him, but also in a warmer climate.  I couldn’t wait.

Sonia and Hermoine have lived in Spain for over 50 years.  They live in the small town of Estepona about an hour up the coast from Malaga.  They have forged a wonderful life over there and live in their beautiful villa on a hill overlooking the town.  I think it’s a slice of heaven.  We were blessed with the weather too.  22 degrees for most of the week.  “ Don’t expect this every January, if you come back!”Hermoine told me.  “This is quite unusual even for us!”

Our holiday was fantastic and we had the most wonderful of times, relaxing in the garden, eating breakfast and lunch in the sunshine most days,  and exploring the surrounding area.   Our hosts were so kind and did everything they could to make us feel welcome.   As well as having 3 cats and 2 outside cats, they have 2 very cute dogs.  Both of them have come from abusive backgrounds.  Bourbon, the younger of the dogs is very shy but once he takes a shine to you, he’s the most affectionate of creatures.  I wanted to put him in my suitcase and take him home with me!

Over the weekend we planned to take a road trip to explore the mountain nearby and the surrounding villages.  However I woke up early on Saturday morning with stomach cramps.  At first I thought I was slightly dehydrated, but in my heart I knew I wasn’t.   Once up and about I tried to shake off the increasing cramps and focus on helping with the picnic preparation.  I mentioned the cramps to Sonia and Hermoine but insisted I would be fine for our trip.

Unfortunately within twenty minutes of our drive, we had to turn back.  The cramps were very painful.  I realised that my stoma hadn’t really worked all day.  It was lunchtime and it was unusually inactive.   Sonia decided we needed to go to hospital.  The nearest local hospital is in Marbella, half an hour away, so she and I headed there.  I was a little scared because I didn’t know what to expect but also safe in the knowledge that Sonia spoke fluent Spanish.

We were seen in triage very quickly, and met a consultant shortly afterwards.  An x-ray of my bowel was taken.  We then met a lovely surgeon, who spoke a little English.  He explained his plan to us after telling us the results of my scan.  He told us that my x-Ray wasn’t too bad, but warned me that I may well have to spend the night in hospital whilst they waited for my bowel to start working again.  He also told me they would use an enema to try to help get my bowel working again.  I had no real time to process any of this because it all happened pretty quickly.  I don’t think the enema really worked but it didn’t seem to matter because as soon as they had finished,  I was whisked away to a room where non critical patients were observed.  Sonia could only stay for a few minutes before she had to leave.  Visiting hours had just ended for the day.   It was now about 8pm.  The day felt like a blur.

It didn’t take me long to realise that I was probably going to end up spending the night in hospital.   Much to my initial dismay I realised that this would be in a reclining chair rather than bed.  However I was in a fair amount of pain and discomfort and after being sick for a second time I passed out hooked up to IV fluids and anti-sickness drugs.  When I woke up,  a few hours later, I felt much better.  The room was also pretty full.   It had been half empty when I had first arrived.  There was a fair amount of snoring and activity.  However the room soon settled down.  The lights went down and the whole room including the nurses went to sleep! I smiled to myself, this was certainly an experience!  Thankfully I slept pretty well through most of the night and was really quite comfortable underneath my hospital sheet.

By early morning the room began to come to life again.  Much to my amusement I realised there were 3 or 4 other British patients there, so it was a relief to share stories with them.  More importantly, my stoma had begun to work again.  My cramps were almost gone too.  I rang Hermoine and she told me that Sonia and Dad would drive up to see me at lunchtime.  Meanwhile the nurse said that as soon as the doctor came to see me and had spoken to the surgeon, I could go home.

Fortunately this all happened fairly quickly and about 2pm I was discharged and we were on our way back home again.  My Spanish hospital experience had lasted for about 24 hours.   I was so relieved to be out and it was such a glorious day too.   We spent the rest of the afternoon relaxing in the garden enjoying the sunshine.  The next day we were able to go on our drive which was fantastic.  I was so glad we were able to go on our tour and it was a perfect way for Dad and I to finish our holiday.

The next afternoon we waved farewell to our amazing hosts as we jumped aboard our coach back to the airport.  It had been a fantastic trip and I’ll be forever grateful to Sonia and Hermoine for all their kindness and hospitality.  It really was the most fabulous holiday and better than anything I could have wished for.  Unfortunately our trip home ended up being a little more challenging than I would have liked. As we approached the airport, it looked as if the surrounding area was filled with smog.  It was a gorgeous day and seemed out of context.  Dad seemed to think it was smoke from the burning of wood close by and I didn’t really give it too much extra thought.

However an hour or so later and after I had made sure Dad was safely at his gate, I headed for my gate.  It was there that I realised it hadn’t been smog,  but deep fog that now engulfed the airport.  I noticed that my plane from Gatwick hadn’t even landed yet.  A few minutes later we were told that our flight was delayed for at least two hours.  I really could have cried.  I’d been feeling slightly anxious about my journey home anyway,  because I’d been having a few issues with my ileostomy bag leaking whilst on holiday.  I just wanted to get home without any accidents and so this couldn’t have come at a worse time.

Ultimately I think I dealt with all of this pretty well.  I spent most of the time with Dad because obviously his flight was delayed too.  Although he had assistance I was worried about him.  Fortunately there were some other really nice assistance passengers on his flight and they were looking out for him too.  Around 9pm my flight was cancelled from Malaga but re routed from Granada.  This meant that we had to travel up there on a specially charted coach.  This all happened very quickly and I had to say goodbye to Dad not really knowing what would happen with his flight.  I felt pretty emotional saying goodbye but the lovely people assured me they would keep an eye on him.

On our trip to Granada, I met a friendly English guy called Rob who now lives and works in Spain.  He was so kind to me and made sure my case was safely on the coach and we sat together and chatted for most of the trip.  It really helped my confidence.  We eventually took off about 11pm.  It meant, of course, that our flight would land very late back at Gatwick.  I’d planned to catch the train home from there but instead booked a cab, and it was so reassuring that the cab driver was there to meet me when I landed.  Finally at 3am I arrived home.  It had been quite a journey.

The next day I found out that Dad had spent an extra night in a fancy hotel in Malaga and they flew home at lunchtime that day.  I think he got the better deal! Although I would have preferred a more routine journey home,  with the benefit of hindsight I’m so proud of myself because I proved to myself that I could deal with everything thrown my way whilst on holiday,  even when I had concerns about one of my stoma bags.

About 48 hours after my return home my stomach cramps returned signalling the warning signs that my stoma was obstructed again.  By the late evening a friend took me up to A&E of my local hospital.  I didn’t really want to go but the pain was excruciating.  Fortunately we were only there for a few hours.  The treatment plan was pretty similar to Spain, but it wasn’t felt necessary to keep me even when my stoma had not yet begun to function again.

I spoke to my stoma nurses the following day which happened to be Friday.  They told me that I was in for an uncomfortable weekend but that the stoma should start to work again.  I was advised to keep to a soft diet and to keep hydrated.  They were right and my stoma begun to work again by Saturday afternoon.  It was a pretty uncomfortable few days but I got through it.

I recently saw Mr Rasheed and he told me the obstruction would have been caused by adhesions I have on my bowel.  I’ve lots of scar tissue so sometimes food can get stuck and it’s a matter of my bowel disentangling.  However he told me that the treatment for next time is stop eating and only drink a little.  If after 5 hours my stoma does not start working, then I should go to A&E and ask to be put on IV fluids.  This is because I’m at risk of becoming dehydrated.  If the stoma still doesn’t work then an NG tube needs to be put in.  At no point should I be given an anenema!  He told me that in 5 out of 100 cases he may have to operate due to the obstruction.

Since then my stoma has been working well.  I’m a little more wary of what I am eating.  On both occasions I’d eaten pork which is quite unusual for me, so perhaps it’s a meat that’s a little too tough for my bowel now.  And I make sure to chew my food properly.   Another ongoing challenge has been my ileostomy bag that had begun to leak fairly regularly.  This was a result of my stoma habits changing after The Whipple.  It’s now much more active and effluent in form.  However my stoma nurse has been brilliant and I’m now using a new type of convex bag, similar to the type of bag I use for my urostomy, and this seems to be much better.  This is a huge relief and my sleep is gradually improving as I began to relax a little more.

The weekend after my trip to Spain I managed to go away again.  This time it was up to Edinburgh to see my nieces and nephew and to attend a fantastic evening celebrating the 25th anniversary of the first Women’s Rugby international match played between Scotland and Ireland.  It was a match I played in and one of my proudest moments.   It was wonderful to see so many friends again and reminisce about that amazing day.  Once again the trip went really well and it filled me with more confidence for further trips away.

Infact as I write, I’m very much looking forward to my next trip away.  I’m flying to Dublin next month to receive a cap for that match back in February 1993.  It should be a fantastic day as there are so many of us going to receive caps that were never handed out when we played.  I’m so happy that I will be well enough to go.  Although it’s been a really positive year so far, it’s not always been easy.  But I’ve negotiated all the challenges I’ve faced and I’m really proud of myself for that.  I remind myself that I’ve come so far and it puts a little more spring in my step.

 

 

 

 

 

 

 

 

 

 

 

 

 

Stoma Stories Part 2

Coming home after my discharge from my unplanned 2 week stay in hospital in early November was fantastic.  It was such a relief to come home and I was determined to get back to where I was back in September.  However I’d be lying if I said that adjusting to my new body has been easy.

As you’ll know from previous blogs,  I now take a supplement called creon with my food.  Essentially this is because my pancreas no longer creates enzymes to break down the fats in my food.  This has been a fairly easy adjustment.  I just need to remember to take a tablet with each course during a meal or with snacks.  However the habits of my ileostomy have changed fairly dramatically and this has caused quite a lot of adjustment and soul searching.  To understand a little more it’s perhaps useful to explain what happens in the normal digestive system.  I’ll quote from the handout given to me when I first left hospital back in May.

“The gut starts at the mouth and ends at the anus.  After entering the mouth, food is chewed, swallowed and enters the stomach.  Here it is mixed with gastric juice and prepared for release in small quantities into the duodenum.  The digestion process continues here with the food being mixed with more digestive juices including bile from the liver, and pancreatic juice from the pancreas.  The fluid then enters the jejunum, the next part of the small intestine.  The process of digestion is completed here with more fluid being released from the jejunum, and then the ileum, absorbing nutrients into the blood stream in order to feed the body.

The remaining fluid that has not absorbed will pass into the large bowel (colon) which absorbs water and sodium (salt).  This is then passed out of the back passage, usually as solid stool.  The amounts of fluid used in the digestive process are vast.  Every day, approximately 0.5 litres of saliva, 2 litres of gastric juice and 1.5 duodenal/pancreatic/biliary juices are pumped into the upper bowel.  By the time the colon has been reached, up to 10 litres of fluid has been pumped into the small intestine at some stage, although much has been absorbed back into the body when the various different types of fluid have done their job in digesting food.

If the effective length of the short bowel is shortened, it becomes possible that more fluid emerges from a stoma than the person has drunk in the first place. This fluid is particularly rich in salt, and so people can develop salt and fluid depletion.”

All of this explains how someone like me, who has had a large part of my intestine removed, can easily become malnourished and dehydrated.  Therefore it’s really important to keep my nutritional and hydration intake up and when I didn’t manage this back in October, is why I ended up back in hospital for two weeks.

Now I was home again and feeling much more human I really wanted to pick up where I’d been earlier in the year.   Sure, I may find certain foods didn’t process as they had pre Whipple but it couldn’t be that bad could it?  I was particularly passionate about not becoming dehydrated again.   Although I was discharged on that Friday,  there had been quite a lot of discussion between different teams about whether it was right to let me go,  and I was sent home with the express advice of making sure I always had a drink in my hand.

Over the next few weeks I was fastidious about my fluid intake.  I went through bottles of squash like it was going out of fashion.  I was pleased because I felt really hydrated most of the time.  However at the same time I noticed that my ileostomy output was much higher than before my second operation.  Ideally you do not want to be emptying your bag more than 5 times a day.  However now it was up to 12 times a day.  On top of that, I was having to empty my bag several times a night.

Although this was disheartening,  I wasn’t completely surprised because one of the stoma nurses had told me that having a whipple can send the ileostomy a bit mad.   Although it was higher,  the output wasn’t particularly effluent in form which I thought was a positive sign.  You want to avoid having a liquid effluent output if you possibly can.  This is harder for someone with an ileostomy but eating certain foods can help you avoid this.

However, as time passed I began to notice a pattern.  Despite taking the necessary steps to slow my bowel down each day,  my stoma output would nearly always turn effluent in form by the end of each day.  As well as this being annoying, it also always made me feel anxious about becoming dehydrated again.    In an ordinary person it is fairly easy to rectify dehydration,  you just up your fluid intake.  However it’s not so easy for someone like me with two stomas.  I have to be careful because in this instance, actually the more ordinary fluid I drink the less it will be absorbed.  And it will instead flush out of my body in my ileostomy output.  At the same time I will become more thirsty because sodium (salt) has been flushed out and I will become more dehydrated.

In this instance, after taking my loperamide, rather than drinking more squash or water,  I turn to a salt supplement drink which has been especially designed for people like me.  It’s called St Mark’s Solution.  Essentially it’s made up of 6 tea spoonfuls of glucose powder, a tea spoonful of salt and half a tea spoon full of bicarbonate of soda.  This is then mixed up in a 1 litre jug of water.  To make it a little more palatable you can add some squash to it.  Because the drink is high in salt it moves more slowly around my body rather than flushing straight out and it will help decrease my ileostomy output whilst rehydrating me at the same time.

I’d met up with the consultant dietitian a couple of weeks after my discharge.  She was happy with my progress. She felt happy that as long as I kept going along the same path I’d put weight on at a reasonable rate.   At the time I felt my drinking habits were good and I told her I only used St Marks when something disagreed with me.  However as the weeks progressed and I began to notice the trend of my output always becoming more effluent in the evening,  my perspective changed.

I began to include a jug of St Marks Solution in my every day diet.  This definitely had an impact on my Ileostomy output but I suspected that I might have to also adjust the amount of normal fluids I drank too.   I found this period of time very challenging.  Although there are plenty of people who have an ileostomy I couldn’t find many who have had a whipple as well.

This is quite a lonely place to be, because you don’t have anyone to compare notes with.  I did manage to find a couple of people through social media.  One of these was an American man who has the FAP mutation as well.  He had his ileostomy surgery in 2011 and his whipple in 2015.  Whilst not being on social media himself,  his wife was, and she very kindly answered a few questions that I had to ask of him.  When I asked if he’d noticed a change in his output after his whipple and he answered yes, I could have cried.  She told me that he said that it does get better after a year or so and this was a huge relief.

A few days later, in my efforts for more information, I spoke to a nurse at St Marks Hospital in Harrow.  This is where I may well have ended up being treated at, if we’d known I had my mutation as a child.  She confirmed that including St Marks Solution  in my daily diet would help me.  Whilst realising I was receiving amazing care, she suggested a new way of taking in my salt supplement.  Her hospital had recently launched an oral powder called Glucodrate which I could order on prescription.  This is basically St Marks Solution but rather than making the formula up myself,  it  comes already made up.  I just have to add a litre of water to the sachet of powder. It also comes in Tropical fruit flavour so it’s much more palatable.

I’m fortunate to have a lovely GP and she very kindly prescribed me this new powder.  I was due to see my dietitian again a few days later and I would run it by her too.  In the meantime I also had a follow up with Mr Rasheed who I’m now back under for regular surveillance on my bowel.  He told me that it’s not uncommon for an ileostomy to be affected in the way that it had been after my whipple operation.  He advised me to up my loperamide intake per day.  You may remember that by using these pills 30 mins to 60 mins before food, it slows my bowel down.

He was really happy with how well I was looking and he suggested that I get away for a short holiday before I saw him again in mid February.  I also asked him if I could start to exercise again.  He answered yes, but obviously to build up slowly and to also be aware of keeping hydrated throughout.

A couple of days later I was back to see the dietitian.  She was really pleased with my progress because I’d managed to put 4 kilos on in the 6 weeks or so since I’d seen her.  When we discussed my fluid intake I described my growing awareness of the impact of liquid intake on my ileostomy output.  She confirmed that drinking a litre of St Marks Solution per day would really help me.  When I told her about the Glucodrate, she was really impressed because she was about to suggest I take some sachets home to try.  We agreed that we couldn’t believe how tasty it was and that it was almost unbelievable that it contained all the ingredients I needed!  She also confirmed that by limiting my ordinary drinks to 1 litre a day as well, I would really begin to notice a change in my output.

She advised me that I could drink more Glucodrate per day if necessary.  Obviously during the summer and in hot climates I will sweat more so I need to be aware of this and monitor my drinking habits even more closely.  The same is true of exercise.  Even if I’m just going for a short walk I need to stay well hydrated.

Although this has been a difficult period of my life,  I finally feel like I’m getting a handle on things again.  I still have to empty my bag more times than I would like and I’d be lying if I said it didn’t get me down, but at least I understand what’s happening now and I’m up considerably less at night.    I no longer suffer nightly episodes of my output turning effluent like in form and that’s been a really positive development too.

All of this has reminded me of how unique my situation is because when I reflect, being discharged and told to drink constantly, actually wasn’t the best advice.  Less is sometimes more for someone like me.  Certainly of ordinary fluids.  The dietian agreed with me when I raised the issue and told me it was important for me to feel empowered to explain what I needed to do if I ever ended up becoming dehydrated and in a health care setting again.  The problem in this instance was that I was discharged by the upper GI team and stoma care is not in their expertise, unlike being in under Mr Rasheed’s team where it is.

I’m buoyed by my increased understanding of my situation and also in the knowledge that things will improve.  As one nurse explained, the body will adjust.  It is an amazing beast. It’s just that’s It’s been working one way for a number of years, and so it’s going to take some time to time to re learn and adapt.    I’m determined to get on with my life, and not just that,  live it fully.  I’ve been through so much and finally I have some time away from hospital,  and so I’m going to enjoy it.

I’ve taken Mr Rasheed’s advice literally and have booked my first holiday abroad for 2 years.  I’m off to Spain to stay with family friends.  My dad is flying out to join me too so it’s going to be fantastic to see him again and to both have some R&R time.  I’ve also begun to train for my next sporting challenge.  I’ve decided to enter in the Marsden March 2019 where I will walk from the Fulham Marsden to the Sutton branch 14 miles away.  It’s giving me something to aim for and at the same time it’s going to feel good to be able to give back to an institution that I’m so grateful for all that it’s given to me.

 

 

 

 

 

 

 

 

Parallel Universe

When I was given my official diagnosis of Bowel cancer in February 2016 I went into a state of shock.  Of course I didn’t see it that way at the time.  I felt it just confirmed what I’d suspected for the past few weeks.  My family and friends will tell you how calmly I gave them my news, almost with an air of “I told you so”.  Hell, I’d have told the bus driver if I’d had the chance, such was my sense of justification.

It wasn’t until a few weeks later whilst having a particularly bad day during my radiotherapy treatment, that I perhaps began to accept the full horror that was my new reality.  I began to learn a lesson that I am still learning to accept now.  That is that nothing would ever be the same again.  “Normal life” would look a little differently from now on.   I say this not with bitterness but as someone with the benefit of hindsight and the experience of living life with a cancer diagnosis nearly two years on.

As many people with a similar diagnosis will tell you,  there can be many twists and turns on a road like this.  No two people with the same diagnosis will have the same experience.  This is because until you begin treatment no one really knows how your body will react and it is only when a tumour is removed that it can be properly analysed.  Whilst the physical challenges are many,  the psychological obstacles cannot be underestimated either.

I was speaking to a specialist cancer support worker the other day.  She told me that other patients had told her that sometimes living life with cancer can make them feel like they are living in a kind of parallel universe.  I really identify with those words.  For me, as much as you attempt to go on living life in a similar way to how it was before, you can’t.  Although friends and family are amazingly supportive,  for the most part, their world continues as before.  However the person with the diagnosis has to learn to accept, adapt and live a new reality.

This can be enormously challenging.  If you’re not able to work or go out much anymore, your world can seem to shrink.  You can struggle adjusting to “normal” conversation in social situations because you can’t remember how it works.  You find it hard to identify with things in the same way as others.  I’ve definitely struggled with these issues and that’s why centres like Maggies where you can meet up with fellow patients and talk in an honest and unfiltered way are so important.  However I’m determined to not let this diagnosis define me.  I’m still the same person underneath it all and I’ll be the same after, but perhaps with a slightly different perspective on life.

When I was diagnosed I was midway through a midlife change of direction in terms of my career.  I had spent the previous four years working in a media company as a scheduler whilst re training to become a counsellor.  Once qualified with my diploma I took the decision to give up my job.  The intention was to carry on my work as a voluntary counsellor at my agency for a few months whilst I also added to my CV volunteering as a school counsellor in the Windsor area.  I had recently been accepted to begin working with a well established agency,  counselling children and young people in my local borough.  I would return to full or part time work in a similar field in the new year.

Ironically, at the time of my diagnosis, I was probably as physically fit as I’d ever been. Exercise and sport has always been a huge part of my life.   I was attending boot camp at least twice a week as well as having weekly personal training sessions.  I loved it.  I loved the feeling of pushing my body in a diffferent way.  I’d taken up running when I’d finished playing rugby and had loved that too but I’d relished the opportunity to meet new people and train in a completely different way.  I’d never felt confident enough to train with kettlebells before and I loved the feeling of endorphins as I pushed myself out of my comfort zone.  I loved the effect of training on my body and felt as good in my skin as I’d ever felt.

Whilst I’m not able to work as a counsellor at this moment, that’s still the plan.  I had planned to go on various courses whilst going through treatment but unfortunately the timings never quite worked out.  However I’ve been fortunate enough to have come into contact with many fantastic people because of my diagnosis.  These range from nurses and doctors to support workers and fellow patients.  I’ve also continued to have my own therapy at various stages of my treatment.  In recent months, writing the blog has helped me process the last couple of years.  I believe that all of these experiences can only add to my learning and make me a better therapist in future years.

In the early days after my diagnosis I continued to exercise.  Although I had to quit for a while during radiotherapy I returned to it in the summer months before chemotherapy began.  Halfway through my treatment, with the support of my nurses I began training again.  Just once a fortnight with my trainer.  I’d been advised by my nurse, and this was backed up by the wonderful cancer support workers at my local Maggies Centre, that keeping active during treatment helps people deal with the side effects of treatment better.  Also apart from anything else it helped keep me sane and provided a welcome release for any stress I felt.

In the weeks leading up to my surgery with Mr Rasheed,  I trained as much as I could. You’ll remember he told me to get as fit as I could.  For a few weeks I felt like the old me again.  Maybe not quite as fit anymore but you can’t keep the competitive edge out of someone like me for long.

However in recent months that whole world seems like a lifetime away.  There is no way on earth I could train these days.  I remember one of my friends coming to visit me in hospital after my Whipple’s operation.  She was on her way back from a nasty broken leg injury,  looking forward to training again.  She wondered if I missed exercise.  I told her that I’d had to make my peace with not being able to train anymore a good while ago, and that is the truth.  Of course I’d love to be able to put on a pair of trainers and go for a run or go down to boot camp and try my hand at kettle bells again.  But that is just not going to happen for a long time.  With the amount of abdominal work I’ve had done and with two stomas, weight training might not be my go to exercise anyway, but for now that all has to go on ice.

These days a walk down to my local high street is exercise enough. I love it, especially on a cold, beautiful winters morning.  I’m looking forward to pushing it some more and perhaps having a gentle stroll in Richmond Park.  Stairs are a still a wee bit of a challenge because I lost so much strength and muscle in my legs so that raises my heart rate a little.  It’s a good indicator of where I’m at right now.   These days a lot of thought and energy goes into what I’m eating.  Rather than looking at losing a few extra pounds, I’m more concerned with putting weight on, and feeling well and healthy.  And it’s working.  I’ve put a kilo on in a fortnight.  Not bad for someone severely dehydrated just a month ago.

That positive energy is one I attempt to live life with on a daily basis.  Life does seem very small right now and in many ways keeping it that way is ideal.  I tend not to make big goals or plans but keep it small and as realistic as possible.  Although I’d love to be out and about some more,  doing too much can drain me very quickly.  I don’t want to run before I can walk.

Although I haven’t been away or done too much lately,  I’ve been feeling so much stronger.  I’ve loved spending time with good friends, chatting, putting the world to rights or just laughing at really bad TV and hanging out.   The fact that I can make it down to my local high street for a cuppa has been fantastic.  I’m back in contact with a local charity and am on the waiting list for some holistic treatments.  I’ve got a trip up to Richmond Park booked in with a friend and this weekend I’ll be out for lunch with a bunch of good friends.   Life might not quite be so big right now but it’s still good.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Hiccup

Recovery after a major operation is always challenging.  I already knew that from previous experience.  Recovering from a second one six months after another was always going to be a real test.  Add into the mix that each of them are two of the biggest operations a person can have and that both are on the abdominal area,  then it was quite an intimidating prospect.

However the first month at home illustrated this for real.  I was so happy to get home a couple of weeks after my operation.  Of course I didn’t feel fantastic physically but that was always going to be the case.  Unfortunately any feelings of euphoria quickly evaporated.

Psychologically I found it incredibly difficult to face the prospect of rehab again.  Yes I had done it all before but in reality the fact that I once again, had little to no appetite was really challenging.  I had thought that once I was home where I could eat little and often of what I wanted would encourage me.  I had even pre prepared freezable foods and some lovely friends had done the same.  I had a very similar small group of fantastic friends who live locally who also brought food round and cooked for me.  But somehow it didn’t seem that easy.  Not that it was ever easy.

Once again friends came round and helped with household chores and more.  This time I had no district nurses  (who I missed terribly ) and so when one of my scars from where they opened me up around my torso bled, it was difficult to put my stoma bags on properly.  Kind friends took it in turns to help me put my bandages on and make it easier for me.  But there were times that I had to change bags several times a day.  When you feel exhausted it’s the last thing you want to be doing.

The same amazing friend as last time came round almost daily.  Doing anything that I needed.  My gratitude knows no bounds.  Other friends both old and new spoilt me with home made cooking and coming around to help with chores.  The support as always was fantastic.  However there were times when I felt quite alone.  Weekends could seem long without not too much to look forward to.

Meanwhile the pain from the scar tissue at the bottom of my abdomen was excruciatingly painful.  Of course I had painkillers but during the night the pain seemed to increase.  I found it difficult to muster up much energy but put this down to low haemoglobin again.  Simple things like showering were a daily battle.

I spoke to one of the dietitians on the phone  back at hospital at the end of my first week back home.  At the time I felt pretty confident.  She sounded pleased with my progress.  I knew what to do.  I remembered from last time, the foods and rules I should be following.  Little and often, including lots of protein.  She enquired about the state of my stool.  Not such a random question.  You may remember there was a large possibility that by losing part of my pancreas would mean that I would lose the function of enzymes breaking down fat normally.  This would mean that food would not process properly through my gut and my output would look differently to how it usually did.  Unfortunately the signs are not as obvious if you have an ileostomy and I wasn’t sure.  Eventually we would find out.  Losing weight quickly is a big sign.

I had a follow up appointment in Mr Khan’s clinic on the Tuesday, the week  following my discharge.  Before it, I was weighed by the nurse.  I had lost 4 more kilos.  The tell tell signs were apparent for all.  I was immediately put on a drug called creon which replicates the work of the enzymes.  Although there was fantastic news,  the pathology had shown all polyps were benign,  rather than be referred back to Mr Rasheed’s team for my regular follow up scans on my bowel, I was kept on,  for the time being with Mr Khan, whilst they monitored my weight.

The next week or so were really difficult but I muddled through.  However it was a great boost when my sister came down from Scotland to help care for me.  My appetite increased and it was just lovely to spend time with her.  We managed a visit to my doctor who as always was very kind and supportive.  She also gave me the flu jab.  However around that time I began to feel nauseous.  We put it down to lack of energy and perhaps even ironically picking a bug up whilst out and about that day.  The scar tissue pain had mercifully gone by then but I wasn’t too sure I liked its replacement.  I couldn’t seem to shake this nausea.

In fact I had begun to actually be sick every so often. It might only be once a day.  However it didn’t follow a wave of nausea.  Sometimes it was just after a creon pill or a build up shake.  I didn’t worry too much though.  I find the taking of lots of pills when recovering difficult.  I had also heard that creon could affect people this way. They are fairly big tablets.  My sister left towards the end of the week but we’d seen my stoma nurse by then and put more plans in place.  My friend Kirsty came round daily with small portions of food left over from family meals. Perfect.  If I could just weather this storm I would be fine.

However during the following week my condition deteriorated.  I had begun to really struggle to be able to eat anything and even more importantly the little I was drinking decreased too.  I realised how important it was to keep hydrated but somehow I just couldn’t face it.  I spent much of my time in bed trying to sleep it off. I wasn’t well.

I had never established a relationship with Tatayna my CNS nurse and at that point I didn’t remember the fantastic advance nurse specialist on the team called Nuala.  I’d only met her once briefly in hospital because it was her first day back from maternity leave.  So I contacted my brilliant colorectal nurse Katy.  I knew I needed to go back in.   The thought of packing, organising a cab and the journey back to the Marsden was terrifying but my fantastic friend Kirsty did it all for me and of course came too.

One of the many great things about the Marsden is that you avoid hours sitting in A&E and they also already know all about you.  Once we arrived Kirsty arranged for a porter to wheel me, at a breakneck speed, I felt like I was on the dodgems,  not great when you are feeling sick,  to our appointment.  Poor Kirsty struggled to keep up, as he took us to the clinical assessment unit muttering all the way because he had misunderstood where we were going.  If I hadn’t felt so awful it could have been a sketch from a comedy show.

Once in the unit I was immediately given the choice of bed or chair.  No contest.  Within minutes my port was accessed and bloods taken.  I was put on fluids and various doctors came to poke and prod me,  in the kindest possible way.  My stomas were checked but there was no issue there.  I then met my new doctor from the upper GI team, called Dr Snieder.  Tim, has now moved on to a new rotation.  He couldn’t see anything specific that was causing me such discomfort.  We needed to wait for my blood tests.

It was around that time that Nuala came to see me.  As soon as Katy had mentioned her name on the phone to me, I had remembered how incredible she was.  I told Kirsty as much whilst we waited.  In my mind I still felt that I had caught a bug and that a short stay in hospital over the weekend would sort me out.  Nuala came, and immediately took control of the situation.  What I like about her is that you can sense how much she cares for you, but also of how good she is at her job.  We both struggled not to weep as she told me “Darling you’re so dry you look like a crisp” I was very dehydrated. Something that the friends around me had suspected for a day or so.  They too were desperate for me to get to hospital.  Not for the first time in my life my stubborn nature had played it’s part in my lack of awareness.

Over the next few hours it became apparent that I was much sicker than I had thought.  Nuala told me I would be in hospital for at least the whole of the weekend and following week.  Severe dehydration is not good for anyone, let alone someone with two stomas.  Different types of blood tests had to be carried out to gain more information.  Thank god my friend was there to hold my hand.  Eventually she had to leave but we knew I was in the best hands.  And my nurse Anna was so kind.

Nuala found me a bed.  Once again it would be a private room as I was still classed as an infection risk.  I didn’t mind.  I knew I would have the best care and I was beyond making conversation with anyone.  Anna took me up a few hours later via a CT scan and I was settled into my new room.  The next few hours and night are a blur but various anti sickness drugs were given to me as well as antibiotics and fluids.  The nurses were fantastic as always.

I still felt ill most of Saturday but by Sunday day time I had begun to feel more human again.  However over the next few days the nausea persisted intermittently.  There were various anti sickness drugs that helped but I felt anxious that it was always in the background.  I kept my admittance into hospital deliberately low key.  I made sure my family and close friends knew but I also realised I needed to rest and get better.

This time out also really helped because by the afternoons on most days,  I was shattered.  Week day mornings in hospitals are busy times with breakfast, meds, cleaning of rooms,  doctors on their rounds,  stoma nurse visits etc etc.  Although my progress was improving my ileostomy output was way too high.  I had been advised to drink when I was thirsty on one weekend evening by a lovely outreach nurse because I looked very dry.  I must admit there was a red flag at the back of my mind. Without much food in my gut there could be a payoff and this would increase my stoma output adversely.  And it did.

As a result we played catch up on that.  I had to be rationed on normal squash and the St Marks solution that helps someone like me reclaim all the salt and electrolytes I was losing.  It’s pretty horrid stuff but it works.  I had massive input from the dietitian.  I wanted to eat but I still had a tiny appetite.  They gave me great support and advice and we implemented other things to help build me up again. Little and often on the food front.  And one of the stoma nurses helped out with good stoma foods.

Towards the end of that week we began to get a handle on my output.  My doctor was impressed and asked what I had done? I told him now I felt better I had gone back to what I knew.  I’d learnt so much about my new way of life in the six months previously.   Because I had now begun to feel human again I had simply reverted to what I knew.

I had welcome visits from Katy and Fillip from the colorectal team. They are both so kind and good at what they do and they helped reassure me.  I also had a late night catch up with Mr Rasheed on Friday night.  He listened to what I had been through, at one point, telling me to call an Ambulance in a similar situation if there is a next time.  There won’t be but it was what I needed to hear.  As always he talked so much sense and we chatted long into the night.

Although I was much improved I needed to be kept in for a further week whilst I was put on IV foods again.  TPN.  This helps add nutrients and calories to a person.  I began to reclaim some of the water I had lost in weight.   My team also put me in touch with the symptom control team.  They were invaluable in my understanding of my symptoms.  They shared the fact that my nausea and vomiting was a result of my dehydration.  When they explained it in the way they did.  It really helped.  Of course.  It all seemed so simple now.

I had begun to suspect that my continued nausea could be slightly psychosomatic.  It was a reality of course too.  But by expanding on the subject and explaining how different drugs worked in different ways,  it helped my anxiety and understanding so much.  My Sister and brother in law came down for support for my middle weekend and that was really great.

By the middle of my second week the doctor hinted I could go home on Friday.  Although I felt a wee bit anxious, I also felt that I was so much stronger and ready for it.  Nuala would keep me on a tight leash and I would have to be extra vigilant and have repeat blood tests at my GP the following week,  but on that Friday I was indeed discharged.  This time one of my best friends was on hand to collect me and take me home in her car.  She also kindly stayed in my spare room on both Friday and Sunday night with another friend coming over on Saturday too.

However I genuinely feel so much better now.  I’m back eating properly and have no problem energy wise.  I can look after myself in terms of self care and cooking.  There is no need for over night visits from friends.   I’m drinking lots and lots of squash and when foods do go through me I know the steps to take to resolve the issue.  Unfortunately it’s going to be back to a process of elimination in terms of learning what works with both my ileostomy and creon.  However I’m back to see my dietitian at the end of the week.

I still have to rely on friends for help in helping buying and carrying groceries and with household chores but I’m much more confident in getting out and about and taking little walks.  Small steps but I’ll get there.  The fatigue is immense but it’s something that I’ve been learning to live with for a good few months now.  As it is for anyone who has been touched with this disease.   It truly is good to be home.

 

 

 

 

 

 

 

 

 

 

The Whipple’s Experience

Monday 11th September came around pretty quickly once I had the date.  Unlike my previous operation I had the luxury of spending my last night before it at home free of any bowel preparation and simply nil by mouth from midnight.  I had to report to the Marsden for 7.30am so one of my friends and I left home fairly early to make it on time.

After being signed in we were shown to my cubicle where once I had my temperature, blood pressures, height and weight taken, I was asked to change into my lovely theatre gown and socks.(!).  Shortly after that I met my anaethetist for the first time.  She went through what to expect and answered any questions I had.  Towards the end of the conversation she took a call from my surgeon who was driving to work and struck in traffic, so I realised I had a little time yet to wait.  Another reason for being even more grateful for my friend giving up her morning to support me.

Shortly after she left, the registrar for Mr Khan, Tim, came to see me.  He talked us through the operation that they were going to perform later that morning.  I had a slightly amended whipple’s operation planned (pancreaticduodenectomy).  This is where the head of the pancreas is removed plus the duodenum (where my polyps were), the gall bladder and part of the bile duct.  However I wouldn’t lose anymore of my stomach.  As regards the liver resection, they were going to make a decision on whether that was needed during the operation.

He told me they expected the operation to last between 3 to 4 hours but that it might last a little longer because of scar tissue from my previous operation.  We discussed that although there was a small risk that I could develop type 1 diabetes after the operation,  the chances were only 1 in 10 or as Tim said “If you look at it the other way then there’s a 9 in 10 chance you won’t develop it!”  I thought that was a good way to look at it.  As I signed my consent form he told me I was 3rd on the list but that the 2nd operation planned looked like it wouldn’t happen, so it wouldn’t be too mouth longer to wait.  He also took both my friend and Sister’s numbers to phone them to let them know when I was safely out of theatre.

A few minutes later we had a lovely surprise when Mr Rasheed and his team came to say hello.  I’d been in touch with him earlier in the week and he said that he would come and see me.  It was so good to see them all again.  They are such a great team of people.  Nikhil reassured me that I wouldn’t really feel the epidural I was due to have in the anaesthetic room before being put under general anaesthetic, because the anaethetist would use local anaesthetic before giving me the epidural.  Last time round I was already asleep when they gave it to me so I felt quite anxious about it.

After that it wasn’t too long before the nurse came to say they were ready for me in theatre.  She was really kind and let my friend walk down to the no entry sign with me which helped ease my nerves.  Once in the anaethetist room, it wasn’t long before I was being set up with canulas and heart and blood pressure monitoring.  I was amused to see that these both seemed quite regular until I was asked to sit up and get into position when the anaethetist entered the room.  I had to swing my legs to one side of the bed and hug a pillow.  At this point my heart rate raised quite a bit so I tried to concentrate on breathing normally.  Fear of the unknown I guess.

However whilst not exactly being my favourite experience it was fine and it wasn’t long before I was lying on my back again and being put to sleep.  The next thing I vaguely remember is being woken up in High Dependency unit (HDU).  This is a step down from CCU, and it is standard procedure to be taken there after a whipple’s.  To be honest the whole of my time up there is a complete blur.  I would have been brought round early evening but I don’t remember much of that evening really, apart from various people around me looking after me.

I remember slightly more of Tuesday.  I remember Tim coming to see me, and that he was really happy with the way the operation had gone.  I also remember having a fantastic Australian nurse who was a lot of fun.  One of my friends came to visit which was lovely and I remember being told that I would be kept up in HDU for a second night simply because of the amount of surgery I’d had in the last few months.  At some point I was moved to my own room and another friend came to see me there.  At that point I was aware of the pain and nausea but it was only during Tuesday night that I felt that the pain became unbearable so my nurse upped my morphine dose on my PCA.

By Wednesday lunchtime they were ready to move me to my ward.  I’d really hoped I would be placed back on Ellis to see the nurses again but Wilson ward was the only one that had a bed available for me at that time. I must admit I had a minor strop.  I’d so wanted to be back with the nurses I already knew on Ellis but it didn’t take me long to get over myself and accept that I’d receive fantastic care on Wilson too.   Once down on the ward an hour or so later, I was safely settled in.  The nurses couldn’t have been kinder and I warmed to them immediately.  By this time I think I’d become aware that the operation had in fact lasted 7 hours due to the amount of scar tissue the surgeons had worked through to get to where they wanted.  I also knew that they had decided that the liver resection wasn’t needed so that was a bonus too.

The next couple of days are pretty hazy.  I had a few visits from lovely friends but I spent a lot of time sleeping.  Although the pain was quite high I could manage it fairly easily with the PCA.  If anything the nausea was worse.  A side effect of morphine.  Thursday night was a particularly bad one for that but the nurses were great and did all they could to aleave it.  Eventually,  I was changed onto a different drug which doesn’t carry that side effect, you just have more vivid dreams on them. I’d take that option right now.

A few friends popped in and out  during those days, but most of the time was spent sleeping.  I had a really nice student nurse who would help me wash each morning but even that was a real challenge.  I had a lovely surprise early on Thursday morning when Mr Rasheed popped by to see how I was doing and he came back again on Friday afternoon with his team.  I told him how sick I felt, and he reassured me that he understood and that all the drugs I was on were contributing to that feeling too, but it would pass.   I also had a couple of visits from one of the amazing stoma nurses, Lesley, who had really helped me when I was learning how to use my stoma bags last time round and who I had grown really close to.  People are so kind.

However on Friday afternoon, Carla, my nurse for the day told me that unfortunately, due to them suspecting I may have contracted a virus,  I had to be moved to a private room for the rest of my stay.  Whilst I would be fine when I got home,  they obviously needed to play it safe and protect other pateints.  I believe that it’s the kind of virus that is hard to combat with antibiotics and if pateints are already ill then it could be dangerous.  As everyone who knows me, will testify, being cooped up in my own room wouldn’t be my first option,  I understood.  I just felt gutted that I had to be moved.

At the same time I felt so weak that I was beyond getting too upset.  I wasn’t moved until late Friday night when the bed was finally ready for me.  That night was probably my lowest in hospital.  Whilst being transferred from my bed to the wheelchair my NG tube pretty much came out.  This, if you remember,  is the tube they use to drain excess bile and liquids produced by your body whilst the gut and bowel wakes up.  It helps you to not be sick from it too.  The tube is usually inserted, through your nose into your stomach, when you are under anaesthetic.  I realised it would need to go back in again and of how much I hated it last time.

As we went up to my new room in the lift, I told my nurse how sorry I felt for myself. “that’s ok to feel that way though, isn’t it” she answered.  I had a little cry and pulled myself together.  Once settled in my room.  My new nurse explained that we would have to reinsert the tube.  To be fair,  I managed it fairly well.  However ironically, a few hours later, I woke up to find that it had somehow come out again! So about 2am she had to put it back in again.  Thankfully it went pretty smoothly and I fell back to sleep.

Over the weekend I settled into life in a private room.  I was still very tired so I slept most of the time.  Not even having much energy to watch TV.  A few friends came in to visit which really helped keep my spirits up and the nurses were of course as wonderful as ever.  I connected particularly well with Jenny, my nurse on Sunday.  She had time to sit and talk to me and help put the world to rights.  The night before I met her,  I spiked a temperature and so on Saturday evening I was taken down for a chest x-ray.  Nothing really showed up but by Sunday when an advanced nurse specialist listened to my chest,  it was clear I was quite wheezy.  She asked me to try and cough it up which was difficult because it really hurt to do that.  But she was right, that was the problem.  I used a nebuliser for a little while which helped to fix it and my temperature returned to normal.

Over the next few days I began to perk up and in between visits from friends and sleep, I watched a little TV and met more nurses.  The doctors were really pleased with my progress and it soon became of matter of time before the NG tube was removed.  I was already on free fluids so this would mean that I could move onto a soft food diet. I was a little apprehensive because of my experience post NG removal last time round but at the same time I felt ready.

After my last operation I had to drink fortisup build up drinks to help add calories to my diet and I hated them because they were far too creamy but this time around there were scandi shakes available which were much more palatable.  I was still being fed intravenously but the idea was to gradually wean me off that and I could be discharged as soon as the dietitian felt it was safe.  On Wednesday afternoon,  I was told that a private room had become available on my beloved Ellis so I was to be moved sometime on Thursday.

Although I was told I would be moved around midday it was about 5.30pm that I was finally able to move.  Unfortunately this was during the dinner order run and that night my dinner somehow ended up with someone else! So I was left with egg mayonnaise sandwiches.. you can only smile.  However it was so good to see the nurses again and whilst not wishing to see me under those circumstances,  they were all really happy to have me back.  It was great to see them again as I’d grown a little weary of meeting a new nurse almost every day.

The downside, was of course that I was cooped up in my room and en suite bathroom.  I’d been able to go on little walks with the physiotherapist whilst on the private ward so I felt a little lonely.  Of course friends continued to come in to see me and the nurses would come to chat to me on their breaks or when they had time so that really helped lift my spirits.  Health wise I felt pretty well considering but I found it challenging to eat again.  It felt like Groundhog Day.  I wanted to eat more but nothing really tickled my fancy, even with food brought in by friends.

On Friday morning the doctor hinted that I might even get home over the weekend so I felt really excited.  However by Friday afternoon the dietitian had confirmed I would infact be kept in.  I was disappointed but realised it was for my own good and at least I was being looked after. It’s just that I longed for space and my own home again.  Still, I was shattered and on Saturday I slept most of the day.  Being required to eat when you don’t have any energy is so difficult and I felt quite anxious every time meal times came around.  Nothing seemed to work.  However I managed what I could and on Sunday the doctor on call noted that now I was eating more, they could take me off the TPN and so it looked more and more likely that I would go the next day.  I was ecstatic.

Monday morning came round and Tim came to discharge me. He came back a little later with my surgeon Mr Khan who told me I’d done very well and that they would see me in clinic in a weeks time.  A nurse took my staples from my wounds and after that all that was needed was to wait for my medications.  These duly arrived and a cash taxi was ordered for me to take me home.

As I waited in reception for it to arrive I reflected on my 2 week stay in hospital. It had, at times been challenging but as always I’d been cared for so well.  I couldn’t actually believe that in a little under 6 months I’d had 2 major operations.  I still have one operation to go early in the new year but that is again preventative and won’t be on my gut or bowel.  I felt proud of myself for getting through it all,  although I felt very sore and absolutely shattered.  I knew only too well that the hard work started now.  But I’d done it once so I could do it again.  I was ready to go home.

 

 

 

 

 

 

The calm before the storm

The weeks before an impending operation are always an anxious time.  On the one hand I feel a certain level of excitement and anticipation that I have a definite date and that things are moving forward again.   But on the other, there is a certain level of fear and anticipation of how the operation will go and what life will feel and look  like in the weeks and months post surgery.

In the weeks leading up to my holiday I had a number of hospital appointments to attend.  I saw my oncologist Dr Ahmed in early August.  Essentially she signed me off for the rest of the year, happy in the knowledge that I was being well looked after at the Marsden, but available at any time if I felt like I needed her support.  I also saw Mr Smellie again… I know such a great name… who is the thyroid specialist at Chelsea and Westminster Hospital.  Again he signed me off from him for a while.  “Come back and see me next year” he told me “January?” I asked ” No, February” he answered.

I also saw Mr Rasheed and his registrar Nikhil again.  I’d had my repeat MRI scan on my pelvis a few days earlier so I was relieved to hear that the scan showed that the fluid issue was healing up well.  However,  I told them that I felt my haemoglobin levels were dropping again.  You may remember that I’d had a blood transfusion in early July so I was a little concerned and curious about why I would feel this way again so soon after.    Although Nikhil told me that my previous blood test had been fine,  I told him that had been taken a few weeks earlier, and that I felt like it had dropped again since then.

Sometimes it’s difficult to know the difference between general post surgery fatigue and anaemia.  However,  I’d noticed how breathless I’d felt when I walked up the stairs to my MRI scan a few days earlier and that for me was a big red flag that my HB levels were dropping again.  They agreed that I should have a blood test on my way home and also organised for me to have an iron infusion the week after.  They also decided to speak to Mr Khan’s team and ask them to organise a gastroscopy (this is where they put a flexible telescope about the size of an index finger down your throat into your oesophagus, stomach and duodenum to see what’s going on down there)  in the next few days to see if they could pick up a cause of the anaemia.

Initially my plan was to have my holiday and then spend a week or so with one of my best friends who was due to be home for a few weeks from New Zealand.  Mr Khan’s team had very kindly agreed to delay my operation for this.  However the more I spoke to Mr Rasheed the more I realised that the sooner I had this new operation the better.  “I realise you more than anyone needs a holiday” he told me “but I just want you to be able to get on with your life.”

Although the whipple’s operation and possible liver resection is a smaller operation,  it’s still a big operation and I was beginning to realise that it would add a significant amount of time to my recovery and rehabilitation period.  The sooner we got on with it, the earlier I could begin that recovery.   Plus I had begun to feel a little anxious now I realised that the polyps in my duodenum could be the cause of my anemia.  By the time I left the clinic we had agreed I could have my holiday but the operation would be brought forward by a few weeks.  Indeed a few days later the operation was conformed for 11th September.

I had my gastroscopy a few days after our clinic meeting.  No significant changes were picked up since my last one which was back in early March so that was a relief.  But the blood test had proved my suspicions were right, and so the iron infusion the next day was well timed a few days before my holiday.  The holiday itself was a welcome distraction.  It was fantastic to get away and forget about everything for a week or so.  I had the opportunity to catch up with my Dad at home in Newcastle as well as some good friends over in Belfast for the Women’s Rugby World Cup.

Within a couple of days being home I was back in hospital.  This time it was for the pre assesment for my operation.   It was pretty much the same routine as last time.  I saw the health care assistant for bloods, blood pressure, height, weight and lung capacity test and the pre assesment nurse for information about what to expect on the day of my operation, but this time I also had the cardiopulmonary exercise test as well.  I didn’t have to go through this test before my last operation but it seemed to make sense to have it this time,  so my new team could use it to help them assess my care whilst in hospital.

The CPET test involves the patient cycling on an upright bicycle while breathing through a mouthpiece that is attached to a face mask to assess their level of fitness. An ECG is also recorded, before, during and after exercise to look at how the heart responds during cycling.  In addition the pateint’s blood pressure is tested every few minutes along with the level of oxygen in their blood using a finger tip sensor.

Although you appointment lasts about 40 minutes you’re only really on the bike for 10 minutes or so.  The team ask you to cycle at a comfortable speed throughout the test and as long as you can as you gradually cycle up a hill.  Being fairly competitive (!) I was intrigued to see how I would go and especially because I hadn’t really done much exercise in the past 6 months or so apart from gentle walking.  I think this was quite amusing to the anaesthetists monitoring my progress because as soon as I was off the bike I asked how I’d done! One of them responded that it was important to remember that it wasn’t a simple pass or fail test! I must have been fine though because they told me that I was a low to moderate risk for the operation which seemed pretty good odds to me.

However the blood test that I’d had with the healthcare assistant showed I was fairly anaemic again so I was booked in for another iron infusion the next day.  Although this wasn’t a major issue it only helped reinforce my feelings of wanting to get on with my next surgery as soon as possible.  Although I was apprehensive I realised once again that in the Marsden I would be in the best place.  I was aware that my time in hospital would be challenging and even more so when I went home, but I had got through a much bigger operation already and knew that I had the mindset to do it again.

The weekend before my operation I had the privilege of watching one of my best friends getting married and to catch up with old friends again.  It was such a gorgeous day and to see them both looking so happy was so lovely and a great way to take my mind off the impending stay in hospital.  Come Monday morning I felt in the right headspace to return to hospital and tick one more thing off the list.

 

 

 

 

 

 

Stoma stories

In the weeks leading up to my operation I realised I faced the prospect of adjusting to a new body and a slightly different way of living.  Mentally I was prepared to accept this, but in reality you don’t really know how you will feel or how you will adapt until it becomes a reality.   The most obvious changes to my body are my two stomas.  I realise I’ve touched on this subject in previous blogs but I thought it might be interesting, and helpful for some,  if I write about them in a little more detail this time around.

For the uninitiated, and that was me until not so long ago,  stoma is the Greek word for mouth or opening.  In medical terms it is a surgically created opening between the skin and a hollow viscus.  Abdominal stomas are used to divert the flow of faeces or urine outside the body where it can be collected in a stoma bag.  The three abdominal stomas that can be created are a colostomy, ileostomy and urostomy.  In my case I have both an ileostomy and a urostomy.

There are two types of ileostomy, an end ileostomy and a loop ileostomy.  I have an end ileostomy which is where the whole of my colon and rectum have been removed.  The end of my ileum has then been cut and brought to the surface to form my stoma.  A specially designed bag is then put round it where my waste, which would usually pass through my colon, rectum and back passage, passes into instead.   In usual circumstances an ileostomy would be placed on the right side,  but because I have a urostomy,  it’s on my left.

A urostomy is a surgical procedure which diverts the normal flow of urine from the kidneys and ureters to the bladder into a specially created stoma instead.  To make the stoma the surgeon isolates a small piece of the small intestine and from that makes a tube or spout, otherwise known as an ileal conduit.  The two ureters are plumbed into the spout which is then brought to the surface of the bowel and the urine passes through this into the stoma bag.   My bladder has been completely removed and because the flow of urine is continuous, it flows naturally into my stoma bag.  The stoma bag has a tap at the bottom of it so I can empty the urine into the toilet bowl as and when I feel it is necessary.  At night I can hook it up to an overnight bag which saves me getting up and down every few hours.

In a similar way, I have little control on the timing of the release of my output into my ileostomy bag.  The output isn’t as constant as urine but what I eat and drink can affect the consistency of the output.   So for example, I’ve learnt that porridge is a really good start to my day.  It’s slow releasing and tends to take a few hours to go through me.  This means that if I eat breakfast at 8am it could be around midday before I have to empty my bag for the first time of the day.  It also means that my output will be the kind of consistency you aim for.   On the other hand, fizzy drinks and certain vegetables such as tomatoes and asparagus, go right through me.   Although I can indulge in cups of tea,  this too can pass through me too quickly depending on the time and what else I’ve consumed that day.  Other wind inducing foods like broccoli and onions will puff the bag up so I might have to go to the bathroom and gently let some air out it if this happens.

When food or drink passes through me too quickly,  my bag will fill up with a more  liquid type effluent and I’ll need to empty the bag more regularly.  This is not an ideal scenario since the higher the output,  the more prone to dehydration I am.   If I find this is happening then I take an antidiorreal tablet.  I also up my intake on sports energy drinks to reclaim lost electrolytes and make sure I eat and drink separately.

Last week I met up with the dietitian again.  She’s really happy with my progress because I’m gradually putting weight back on and my BMI is in the healthy range. When studying my diet,  she’s asked me to concentrate on increasing my protein intake to hope repair muscle and heal up wounds.  She’s also advised me to stick to low fibre carbohydrates such as white pasta and rice because she says high fibre foods will be a little too much for my gut right now.  I’m concentrating on eating little and often because my body finds it too challenging to consume too many calories at once.  The feeling of fullness I have after eating too much is very uncomfortable.

During the first six weeks a stoma shrinks in size.   This means that the first stoma bags you use have to be sized and cut to fit your stoma on a regular basis.  Anyone who knows me well,  will realise how difficult I found this part.  Practicality  is not my strong point!  Fortunately,  the stoma nurses and nurses helped me out in hospital and once I got home a fantastic friend became an expert in cutting stoma bags for a few weeks!!

Once your stoma has shrunk to its natural size it will stay that size forever.  A copy of the template used to cut the bags can then be sent to the stoma company who provide your stoma bags, and all new bags will be cut and sent according to this template.  I receive a new batch of stoma bags from a particular stoma bag company once a month.  This service is provided for by a free prescription in which the company liases with myself and my GP so the correct prescription is ordered and delivered on time.    I am provided with 30 bags for each of my stomas once a month, along with overnight bags for my urostomy bags.  I’m also provided with sprays and wipes to help remove bags and clean my stomas and skin around them, plus perfumed bin bags to dispose of the used bags discreetly.

Ideally I change my ileostomy bag once a day and urostomy bag every couple of days.  Leaks can of course take place,  so there are some occasions when I’ve had to change bags more frequently,  but encouragingly that’s beginning to become a thing of the past.  Initially, the Marsden stoma care nurses provided me with a particular brand of bags.  However,  in recent months I’ve learnt that there is a wealth of stoma bag brands out there, coming in different sizes and with various features that might work better for your body than others. It’s a whole new world out there!

Over the past few months, with the support of my stoma nurse,  I’ve been trying out new bags for both stomas.   After trying out several types I’m now pretty content with the stoma bag I use for my ileostomy.  It’s the same brand that we used in hospital but slightly smaller.  However it’s only now that I think I’ve settled on the type of urostomy bag that I want to stay with.  This is because I’ve had more issues with this bag leaking.

I have had some comedy leaks.  One in particular taking place as I received a phone call to tell me my prescription of new bags would be late.  As I sighed at the irony of the situation, and finished the call,  I ran into my bathroom to tear my clothes off and change my bags.  Unfortunately my urostomy was going mad so it was a juggling act trying to get the stoma bag on in between my urine spouting everywhere!!   I was also reminded that multi tasking isn’t advisable when changing bags.  Change the bags and then clean up the mess!

Unfortunately most of the urostomy bag leaks have happened during the night.  It’s always a little upsetting when you’ve had a leak because although it doesn’t take long to change your bags and strip your bed,  it’s not very nice waking up and realising you’ve had an accident.   I find myself going round in circles working out why it’s happened  and worrying if and when it’s going to happen again.   So it was encouraging when I recently spoke to one of my stoma nurses.    She reassured me that leaks are unacceptable.  Yes, they may happen but they shouldn’t be a regular occurrence.  She told me we would find the right bag for me.   She’s stayed true to her word and it looks like we’ve found that bag.

When I reflect back on the last few months I realise that in a little under 5 months I’ve achieved so much.  I’ve gone  to 3 concerts,  a day out at Wimbledon and 2 weddings.  And now I’m about to go away for the first time.   Although there have been a few minor mishaps,  my quality of life is really very good and I’m sure it will keep on improving as time goes on.   Its a good place to be.

 

 

 

 

 

 

 

 

 

 

 

 

A Rollercoaster

Over the course of the last few weeks I’ve been adapting to life at home after major surgery,  as well as preparing for the next stage of my particular path.

When you are initially released from hospital a follow up appointment is made for you to return and see your team a couple of weeks later,  to hear the pathology results and generally see how you’re feeling.  Usually this would be an anxious time for a patient but in my case Mr Rasheed had already given me the good news that my operation had been a successs.

Although I saw him briefly, this clinic meeting was with Nik his registrar, who is also one of life’s good people and a really lovely person.  Whilst I still felt pretty weak, I was adapting to life as they expected and there was no reason for concern.  However I told him I was experiencing a little bit of discomfort in my pelvic area and I seemed to be have developed a slight discharge that needed to be investigated.  I think this is a fairly common occurrence after this type of surgery but it needed to be cleared up so I had a blood test on my way out, and an MRI was ordered to take place within the next few days.   An appointment was made for me to see the team in 2 weeks time, where we could discuss the findings and my ongoing care.

A couple of weeks later I was back in clinic seeing Nik again.  He told me that I did indeed have a collection of fluid sitting in my pelvic area.  He reassured me that this could happen sometimes and was probably the result of a “communication issue”.  We had a couple of choices.  Either I could be admitted for a guided CT procedure where the fluid is drained off or we could watch and wait to see if the issue resolved itself.   Our decision would partly be based on what happened next.

As far as I was concerned I was going to be referred onto another surgeon called Mr Khan, also based at the Marsden.  He is the man who will perform my next operation.  This operation will be preventative rather than curative.  The duodenal polyps that I have,  as a result of my FAP diagnosis, need to come out. Whilst not being cancerous yet, there is a strong possibility they will turn malignant.  Sometimes these polyps can be removed during an endoscopy but in my case that’s not possible because they are too big and there’s too many of them.

However Nik threw a curve ball at me.  It turned out that at their Multi disciplinary team meeting (MDT),  it was decided that I would first be referred back to my oncologist at West Midd/Charing Cross Hospitals for more chemotherapy.  Although this can often happen,  it hadn’t really ever seemed to be on the agenda for me.  Whilst understanding the rationale, a kind of belts and braces approach, I was gutted.  To me it just seemed to add yet more time to an already long hiatus from ordinary life.  Rationally I understood it wasn’t a step backwards, emotionally it felt like it was.

If we were to go ahead with more chemotherapy then this fluid needed to be dealt with imminently.  However we agreed that he would review my MRI images with a radiologist.  Nik would write to both Mr Khan and my oncologist and I would no doubt see each of them in the coming weeks.   I realised chemotherapy wasn’t necessarily a forgone conclusion.  My oncologist might not agree.  I had already gone through 10 cycles and I’d learnt through speaking to her and her colleagues that sometimes it was felt that could be quite enough.

Early, the next week I spoke to one of my amazing Cancer nurse specialists (CNS).  I’m lucky to have 4 of them at different hospitals and they are all fantastic.  We discussed my feelings and she encouraged me to contact my oncologist, Dr Ahmad, to see what she thought.  I felt a little anxious about stepping on anyone’s toes, I’ve been told not to worry in future, and my nurse probably sensing that,  instead contacted her for me.  It turned out that my suspicions were right and Dr Ahmad didn’t feel that I needed any more treatment.   However she booked me in to see and discuss the matter with her a couple of weeks later.

In the meantime Nik called to tell me that they were going to hold off on the CT procedure as the fluid was shrinking itself.  I told him that I didn’t think I was going to be given more chemotherapy.  He was happy with this.  You soon learn when you go through a cancer diagnosis that everyone has their different areas of expertise and they don’t necessarily always agree.  However the surgeons obviously understand that oncologist’s know more than them when it comes to treatments and in my experience defer to them if needed.  We agreed we would reconvene in a few weeks time.

A couple of weeks later I was back at the Marsden to meet Mr Khan for the first time.      Although I didn’t meet him for long I get the impression he’s a slightly different kind of character to Mr Rasheed.  He’s certainly not quite as engaging, but I hear he’s an amazing surgeon and I suppose at the end of the day that’s the main thing.  After an initial few minutes with him, where he established a few details he left to be replaced by his registrar Tim and CNS Tatjana.

They both seemed really nice and infact I’d been seen by Tim whilst he was covering Mr Rasheed’s team over both bank holidays, when I was still an inpatient.   In this meeting he went over their plans for me.  Initially I was to have a CT scan where my duodenal polyps would be re staged ( in FAP terms not cancer) and then once everything was confirmed we could move ahead with surgery plans.  He told me they were looking at a date of sometime in August.  When I explained I had a holiday booked, he was very accomodating and reassured me that because my polyps were not malignant they could work around me so we proposed a date towards the end of September instead.

He told me that the operation would most likely be the whipple’s and that Tatjana would go through things in more detail.  My friend and I were then left with my new nurse.  She explained a little more about what the surgery would involve and answered the questions we had that arose from this.  We learned that the Whipple’s is principally used in operable pancreatic cancer.  During the operation the surgeon will remove the head of the pancreas.  He will also remove the lower end of the stomach,  the duodenum, the gall bladder, part of the bile duct and surrounding Lymph nodes.

However, she also told me there is a possibility that I could have a similar operation instead,  which would be the pylorus preserving pancreaticoduodenectomy (PPD).  In this operation none of the stomach is removed.  The stomach valve  (the pylorus) which controls the flow of food into the duodenum, is not removed either.  The tail of the pancreas is joined to the small intestines or stomach.  Regardless of which operation I have,  it’s likely that my digestion will be affected and that I will probably need pancreatic enzyme supplements to help digest my food.  There is also a risk of diabetes.

I had heard that this operation could last up to 10 hours but she reassured me that Mr Khan performs them in 4 to 5 hours which is obviously still a long time but it was a great relief to learn it wasn’t as long as I’d expected it to be.   I asked how long I would likely to be in hospital for and she told me it would be 10 to 14 days with a couple of nights in intensive care again.

This was all obviously quite a lot to take in.  However the way I’ve tried to deal with this whole process is bit by bit.  For instance, I would prefer not to become diabetic,  but if I do then I will deal with it, if and when it happens.  There’s no point worrying about something that I can’t control and certainly not before I even know the date of my operation.  I took her card and she told me they would be in touch with the date of the CT scan.

The next day I  popped in for a catch up appointment with my GP.  Whilst discussing my ongoing care, she mentioned that she thought I looked pretty pale again.  Was I anaemic ? To be honest it was really difficult to answer because I was feeling very fatigued but I had put this down to general tiredness after my operation.  She knew I was seeing my oncologist a couple of days later so she suggested phoning the surgery the next week if I didn’t have a blood test at hospital.  Just to double check.

My oncologist Dr Ahmad is quite a character.  It’s safe to say that once you’ve met her, you won’t forget her.  Think larger than life, posh, engaging, kind, and slightly chaotic and you have an idea!  We’ve always got on well and I’m very fond of her because ultimately she’s very good at her job and she cares.  She’s also nearly always running horrendously late in clinic!  This isn’t always ideal when you are anxiously waiting for an oncology meeting but fortunately this time I already had an idea of what she was going to say.

True to form I got in to see her nearly two hours after the appointment time but any feelings of irritation I might have felt quickly evaporated as she greeted me.  It was very touching because she took the time to ask me about my close friend who had passed away recently, and who she had also met.  We discussed my surgery and how I felt and then she told me that she did not see that there was any point in me having any more chemotherapy because I had had so many sessions up front.  “The Marsden always recommend this” she told me “but there’s no evidence to show that it works”

We  went on to discuss the staging of my tumour when it was removed,  as well as my original diagnosis which seemed to back up her decision.  However,  she wanted to review my scans in more detail so we arranged to meet again in early August.  She seemed pretty certain there would be no treatment so I was very happy.  At the end of our meeting, I mentioned my GP’s observation to her and she agreed that I looked very pale and so I had a blood test on my way out.

At the beginning of the next week I had my CT scan back at the Marsden and the next day I received a phone call from Dr Ahmad.  It turned out my GP’s suspicions were correct.  I was very anaemic. My HB levels were at 7.9.  The average woman should be around 11.5 and I was diagnosed at 8.1 so I was really quite low again.  She reassured me that this can happen after big operations but as a result I needed a blood transfusion.   Unfortunately she couldn’t get me in to have it done at my nearest hospital, West Midd  but I was booked in for that weekend at Charing Cross instead.

I had my blood transfusion on the following Saturday and it was fine.  I feel a bit of a pro now as it was my 3rd one,  albeit if I don’t remember the last one because I had it when I was unconscious after my operation.   The worst part is the boredom. I had 2 units given to me and it took most of the day.  However a fellow patient friend popped over to say hello after her scan and another friend kindly joined me for the last few hours so it wasn’t too bad.

On the Tuesday I was back at the Marsden, thank god for free transport,  for my follow up appointment with Mr Khan regarding my CT scan.  This time it lasted only a matter of minutes and was with Tim again.  He told me that the staging of my polyps was as they expected, my bowel looked fine,  but that an adenoma, which is a type of a benign polyp,  that I have in my liver,  had grown by 1cm since it was last scanned earlier in the year.   He told me that whilst they weren’t particularly concerned about this, they might decide to now take the adenoma out in my operation too.  They were going to have to discuss this at their next MDT and to help establish what to do, they needed me to have another scan. This time an MRI on my liver.  “Now go” he told me, “you spend far too much time at hospital as it is!”

I had my MRI on the Monday of the following week but I’m yet to discover if they have decided to remove the adenoma as well.  Tatjana was away on holiday for a couple of weeks after my scan and although she’s back now and chasing up the team’s decision for me, she’s really busy.  Hopefully I’ll hear soon, but at least I know there’s nothing really to worry about.  She’s reassured me that the scan showed that the adenoma is benign and I’m sure I’ll find out when I meet the team again.

Later that week I had an appointment at Chelsea and Westminster Hospital.  This time about my thyroid.  Right back at the beginning, when I was originally diagnosed,  Dr Ahmad asked if I wanted to become part of a trial.  Basically, the trial involved me having a whole body MRI scan up at UCL hospital.  Following that,  for the next year I would be sent questionnaires every 4 months to complete and send back.  Whilst not officially being on my file,  she suggested that it might be a good idea because it would give us even more information on my body.  Initially I was pretty reticent.  I’d hated my first ever MRI because I had felt so claustrophobic.  However both she and my friend persuaded me it that it would be worth it.

As a result of having this scan, a nodule on my thyroid had shown up.  Unbeknown to me, cancer of the thyroid can also affect people with the FAP gene.  So once the scan results came through in late April of 2016,  Dr Ahmad sent me for an FNA, otherwise known as a fine needle assesment, and ultrasound.  These results came back around the same time that I was due to see her again in a follow up clinic following the end of my chemo radiotherapy trearment.  When I initially saw her, the doctor who had completed the pathology report told her he thought it indicated secondary bowel cancer.

This was obviously quite a shock, especially since there was no change on the scans of either my liver or lungs,  which are the more usual places for bowel cancer to spread to.   She asked me if I would be willing to have a second biopsy and referred me on to see a specialist at Chelsea and Westminster hospital.  I had the second biopsy at West Midd in June of last year and met my new specialist for the first time a few weeks later.   Just before I met him the second biopsy results came back.  Now they said it was primary thyroid cancer.

I met Mr Smellie, yes I know, brilliant name!, in late June of last year.  He’s another character.   He reassured me that if anything this was primary cancer, so  not great, but in the great scheme of things,  better than having it spread from the site of origin.  However, there was still great debate over the pathology results and they had been sent on to another hospital for closer reviews.  He told me that the best thing would be to eventually remove the whole thyroid but that my bowel tumour was the primary concern.  If the thyroid did turn out to be cancer,  he told me, it would grow very slowly.

Eventually late that summer,  the nodule was confirmed to be a non cancerous nodule that would probably still have to come out.  But we postponed any follow further up appointments until after my bowel operation.  So when I returned to the hospital a few weeks ago, it was my first visit for nearly a year.

Initially, this time around, I did not see Mr Smellie.  However, my case is so complicated that eventually he had to join the poor junior doctor and I for the meeting anyway.   “So you’ve had your operation?!” he exclaimed “well this changes my decision because last time I spoke to them”, “them” being the West Midd surgeons, “they didn’t think they were going to be able to get your tumour out!”  Even though I’ve always been aware of his opinion, his bluntness still took my breath away  Mind you in some ways his honesty is also quite refreshing.

To cut a long story short I’m pretty sure he has now decided that I should carry on with the whipple’s operation and that he will perform the thyroidectomy afterwards,  probably in February of next year.  “How long do you think I’ll be in hospital for ?” I asked as he rushed back to see his patient, ” A week” he answered ” it’ll be like a walk in the park after what you’ve been through!” he smiled as he left the room.

My week of hospital appointments wasn’t quite over just yet.  At the end of the week I was back seeing Nik at the Marsden again.    It’s always good to see a friendly face and after we had caught up on my news,  It turns out that he knows Mr Smellie, we discussed what we would do next.  We agreed that he should organise a follow up MRI on my pelvis to make sure it was healing, and that I should also have a follow up blood test before I saw him back in clinic again a couple of weeks later.

I suppose this blog gives a little bit of an insight into what’s been going on for me over the past few months.  The other day I worked out that I’d had 14 hospital appointments since my operation.   Later this week,  I have both my MRI scan and follow up clinic.  Next week I’m due to see Dr Ahmad,  the dietitian  and my stoma nurse.   The week after that I’m back to see Mr Smellie again.   However after that I’m checking out for a couple of weeks.  Sometimes I feel like I’m on a bit of a rollercoaster.  Never quite knowing what’s around the corner.  So I think it will be do  me the world of good to get away.  Switch off from it all for a while.  Energised and ready for whatever comes my way next.