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.




















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.






















Going home

Going home after such a big operation was for me bittersweet.  Don’t get me wrong,   I really wanted to get home and begin my new life.  But at the same time it meant that “all of this” became scarily real.  When I say “all of this” I guess I mean my new body and all that comes with it.

When you’re in hospital a nurse or health care assistant is just around the corner.  You can ask for their help if you’re facing difficulties changing your bag.  A doctor will come and see you twice a day to see how you’re going and there are even dieticians who can help you understand and choose the right kind of food that you’re  gut will be able to tolerate.  When you get home all of a sudden you can’t really ask for help because friends probably won’t have changed a stoma bag before and they will know as much as you when it comes to diet and stomas.

Of course, the hospital isn’t going to send you home if they don’t feel you are ready ; the Marsden unlike most hospitals is not under such huge pressure to make beds available; and they tell you that you can always come back,  but ultimately you have to bite the bullet and leave some time.  In my case I was actually given the choice.  I thought I was going home all weekend but unfortunately there were a couple of obstacles still in my way.

Unlike a colostomy, the output from an ileostomy is naturally quite liquid like in form.  Despite this, my output was still too high for the doctors to feel happy enough to release me.   As a result of this I was also losing a fair bit of potassium. However, the effluent levels were reducing and on the Sunday evening it was decided that if my blood tests showed my potassium levels were rising then I would be released the next day.

When the results came through on bank holiday Monday,  they showed that although my potassium levels weren’t normal just yet, they were on the up and if I felt well enough then I could go.   I also agreed to pop into see my GP later in the week for another blood test and in this way I was still being monitored.

Making the decision to go home was hard because if truth be told I was a little scared,  but I also knew I had to start somewhere and now was as good a time as any.   It felt strange as my friend and I packed my stuff up.  I felt pretty emotional and sad to say goodbye to the wonderful people who work on the ward but fortunately there was a skeleton staff on shift and transport came through pretty quickly,  so there wasn’t enough time to get too upset.  Besides, they insisted I come back and see them in the coming weeks.  They like that.

One of the perks of having a big operation was that I not only got transport home, on a stretcher, in an ambulance,  but also for all follow up appointments in the coming weeks.  I said goodbye to my friend and was whisked home to be met by another friend back at the flat.   Walking into my flat was strange.  It had only been a month since I’d been home but it felt so long and so much had happened.  I’d been warned that it would be an emotional time and I felt the tears well up inside me.  “This is it then” I thought and my friend and I hugged each other tight.

Over the next couple of days I eased into my new life at home.  I had a lovely birthday, spending time with fantastic friends.  And I enjoyed some quality time with one of my best friends and her baby boy who came down from Newcastle to visit me for a few days.   We didn’t do too much but it was so reassuring to have her around if I had any problems,  especially for the first few nights I was out of hospital.  She was able to help around the flat especially in preparing food and doing the little chores that needed to be done around the place.

When she left I was sad but I continued to be supported by amazing friends.  One fantastic friend came round every day for months,  helping me with everything. From cooking, to shopping, to chores and even picking prescriptions up from the chemist for me.   Nothing was too much.  Other friends took it in turns to stay over, pop over, prepare meals for me, make cakes for me, buy groceries for me, send me cards, or to be simply on the end of the phone.   In the most difficult of times the kindness of others has always shone through.  For that I will be eternally grateful.

However, Mr Rasheed’s words proved to be prophetic over the course of the coming weeks.   Initially I felt very weak.  I had lost a lot of weight in hospital and although I realised I needed to eat and put some weight back on,  it was not plain sailing.  The dietitian and stoma nurses had given me some practical advice on all of this when I left hospital.  Amongst other things  I was to concentrate on getting as much sugar and salt into my diet as I could,  avoid whole grain foods, avoid raw vegetables such as salads and fruits with skins and pips,  eat little and often and to eventually phase different foods in gradually.

Because my ileostomy effluent was prone to be fairly liquid in form I needed to take loperamide  (Imodium) first thing in the morning,  half an hour before any food and to eat half an hour before I took on any fluids.  People with stomas take anti diarrhoeal drugs in a different way.   They help slow our digestion down and thus are used to help us absorb the nutrients if food is passing through too quickly.  This system was to be followed in the evenings and indeed used at any point during the day if I noticed my stoma output was rising.

Although I needed to keep hydrated I was advised to avoid drinking at meal times as it would help my bowel absorb as much as possible, and would help reduce my output.  And it was better to take regular sips throughout the day rather than have large amounts quickly.  I was aiming for a porridge like consistency to my stoma output and to empty it between 4 to 6 times a day.   The dietitian had also sent me home with a big order of build up protein fuelled drinks.  It’s a good way of absorbing nutrients and adding calories.

I felt quite confident in my understanding of all of this.  The problem was that I hardly had any energy and often despite being hungry,  when food was put in front of me, I felt pretty ill again.  Even the build up drinks were a challenge.  It was beginning to get me down,  Around this time I met my stoma nurse Rose.

Every patient who has a stoma is assigned a stoma nurse.  Although she is based at my local hospital, she works out in the community too and visits patients at home until they feel well enough to visit her in clinic.  As soon as I met Rose I knew we would get on.  She has a lovely way about her and instantly put me at ease.  It really helped to discuss my diagnosis, treatment, surgery and how I felt in that moment.  And some of the things she said helped me begin to make sense of my recovery.

She pointed out that the reason I became so tired so quickly was because the energy going out was more than going in.  It seems so simple in hindsight but it helped me begin to understand that if I felt sick after my shower and changing my bags it was my body’s way of telling me it was tired.  Slow down, have a rest and then think about eating.  She also suggested types of food to try and told me to concentrate on little and often.  To not concentrate so much on meals because that would probably make me feel ill again.  It’s exactly how I felt.

We changed my bags together and so she got a chance to see my stomas for the first time. I’m lead to believe that my stomas are really neat and quite small compared to some and she was happy with how the skin looked around them.  I’d been using a specific brand of bags since hospital but we agreed to try out different brands and see which ones suited me best.  It’s a whole new world out there and as with everything, everyone is different so we will all have different preferences.  Looking after your stomas and stoma bags is a subject I’ll return to another time.

In the weeks following my release from hospital I was in a fair bit of discomfort.  I had a few wounds, all perfectly normal for this type of surgery, around my sacrum and perineum, and so these needed looking after and in some cases dressing.  The hospital put me in touch with my local district nurses.  I can’t tell you how wonderful and kind these nurses are.  They would come and see me every day.  I think I’ve met most of the nurses now and all of them have been brilliant.  They were always so interested in me and so encouraging.  So even if I didn’t feel particularly well that day,  by the time they left, I’d had a little boost and felt empowered and that I could do this.

Slowly but surely my appetite has returned.  I’ve been back to see one of the dietitian’s at hospital in the last few weeks.  I’d managed to put on a kilo on when I saw her so we were pretty happy with that.  It seems ironic that after years of trying to eat well so I can keep my weight down,  I’m now trying to put weight back on. However I’m looking and feeling much better now and whilst it’s still challenging to find the right foods to eat, I’m getting there.  Encouragingly,  she advised me that in time she didn’t see a reason why I couldn’t eat the same sort of things as before my surgery.

Unfortunately, everyone who has a stoma reacts differently in terms of what they can and cannot eat.   The only way to work out what’s good for you is by trying things out.   To keep a record of what you are eating and how your body reacts.  I’ll have to keep on taking loperamide for the rest of my life and I definitely seem to be more prone to having a higher output but I’m beginning to have more of a sense of what works for me.   It can be tiring but you just keep on going.

It’s now nearly 16 weeks post surgery and when I reflect back on the 3 months or so since I’ve been home I realise so much has changed.   I’m now much more capable of doing things for myself.  I’m back doing all my own cooking and whilst still relying on friends for many chores and big grocery shops,  I can do quick shops around the smaller supermarkets.  I get out most days and have even managed to get to Wembley to see Adele and to enjoy a day out at Wimbledon.

These trips out have been fantastic and provided a welcome distraction to the ongoing follow up trips I have had back and forth into hospital.  Most of these are part and parcel of follow up clinics following my surgery, but it’s also because we’re beginning to work towards my next operation.









It feels like an almost impossible task to write about my time at the Royal Marsden in early spring time of this year.  That’s because in part it was one of the most challenging times of my life,  but it was also one of the most life affirming.

I was admitted into hospital on Thursday 30th March.  The day before my surgery.  Once I had checked in, it all began to feel scarily real.   I met my specialist nurse Philippe for the first time.   He went over what to expect in the coming days.   I then met my stoma nurse Jackie, who drew stoma dots with marker pen on my body for Mr Rasheed to use as guides when he came to operate.   Finally,  I met up with my CNS nurse, Katy,  who took me down to my ward.   Whilst the bed was prepared, my friend and I sat outside the ward,  idling away time.   We met up with Mr Rasheed and his team and I signed all the papers explaining that I understood all the risks ahead of me.  ” See you in the morning bright and early” he said,  “have your shower and be ready for 8am as it’s a long operation and we want to get going as soon as possible” “Ok” I said and big hugs were given all round.

The other reason for getting me in the night before was because I had to go through some bowel preparation.  For anyone who has had not had the pleasure of going through a colonoscopy think minimal light food, laxatives and emptying your bowels frequently!!  As one friend departed, another appeared, and she stayed with me until it was time for bed which was much appreciated.

In the morning, I was up, showered and gowned ready for 8am.  Shortly after that I was taken down to theatre.  I actually felt strangely calm on that morning after a decent night’s sleep.  I was nervous but I also knew I was in good hands.  The last thing I remember is being given the anaesthetic.  The anaesthetist, Mr Oliver, is a bit of a character.  He sat me up, due to an epidural that would be put into my back after I was unconscious and told me he thought it was time for my rather large gin and tonic!! And that was that.

The next thing I remember is waking up a couple of days later in the Critical care unit (CCU).   This is standard practise after any major operation and I was due to be there for as long as they thought necessary.  I found out a few days later, when I was a little more aware,  that the operation had gone well.  However it had been a little longer than anticipated because they had decided to take the large gastric polyp out of my stomach as well as everything else.  I think the operation had lasted for about 17 hours.

Mr Oliver had told me in my pre assessment that I would be sedated for at least the night following my operation,  because there would obviously be no point in waking me up too soon after such a long operation and at night.   However I believe that after the operation,  Mr Rasheed told my sister and best friend that it could be for a few more days depending on how I responded.   I can only imagine how anxious this time must have been for them.

Despite knowing I would probably be asleep,  I was adamant that I wanted two of my closest friends to come in and see me the day after my operation.  When they arrived on Saturday afternoon,  the nurse told them that I was doing so well that they were going to bring me round.    And although I have no memory whatsoever of their visit,  apparently when I did wake up,  the first thing I said, was ” Oh no mate, it’s not ideal! ”

On Sunday I was a little more conscious of the visit of two more close friends but I still went in and out of consciousness.  Unsurprisingly much of my time up in CCU is a blur.  I remember the kindness and care of the specialist nurses,  the visits of the different teams involved in my surgery to see me on a daily basis, and the pain.   I can’t actually remember the physical pain but I can remember being in pain and of how it was unlike anything I’d ever experienced.  ” On a scale of 1 to 10 how much pain are you in?” they would ask, “11” I would answer!!  So they would tell me to press my pain controlled analgesia otherwise known as my PCA.

The PCA is made up of a syringe filled with a pain relief drug such as morphine, which is fed intravenously through to you via a canula.  As the patient you have a hand device which you can press at measured time gaps and it pumps out carefully controlled pain relief into your veins.  There, is of course, a lockout period so you can’t overdose on it,  but it took me ages to work out how long I could wait in between pressing the button.   I also remember being staggered that the physiotherapist came to see me so early after my operation.  She came on the Monday, and I’m sure a few swear words were muttered under my breath as she helped me walk round the bed!!

Although I wasn’t really conscious of it at the time,  I was also nil by mouth,  except for a few swabs of water on sponge sticks every so often.  I remember dying for more water each time I was given some.   The reason for being nil by mouth is that the bowel and gut take time to start working again after such a huge operation.  The doctors need to monitor you closely to see when it’s safe to begin eating again.

Much of my time up there was on my own and spent sleeping,  but I also had joyful times with my sister and her husband and with some of my good friends.  On the 7th day I was well enough to be transferred to Ellis ward where I would stay for the rest of my time in hospital.   Although there would be some very tough times on this ward,  it’s a place that will be close to my heart forever.

I think much of the reason that this ward is so close to patients and nurses hearts is the whole environment of the place.  It was shut down and given a proper makeover a few years ago.  This was paid for by the family of a former patient who sadly passed away,  but who had spent much time there,  and who wanted to give something back.  It feels warm and safe as a result.   However for me it was also the kindness, love, respect and care I received from all the staff there.  They see you at your weakest,  but are always there to help pick up the pieces,  to make you smile and give you a shoulder to cry on.   I also made countless new friends.  There is something about being on a ward with patients who have a diagnosis of cancer.  You all have your own stories but you find strength, love, laughter and friendship even in the darkest of times.

When I reflect back on my first couple of days on the ward I realise they too are quite vague.  I gradually began to become aware of my two new stomas.  I also had various tubes and drains coming out of me.  One of them was what is called a nasogastric tube, otherwise known as an NG tube, sitting in my nose.   Although it sits in the nose,  it goes down through the throat to sit in the stomach draining excess fluid.  It sits there for as long as the doctors feel is necessary.  In my case it sat there for just over two weeks as my gut and bowel took quite a while to wake up,  which in retrospect isn’t a surprise seeing as I had, had so much taken away.   To begin with,  I had no idea what the tube was.  Indeed,  such was my confusion that I even tried to pull it off one night before my nurse explained what it was.

I could not lie on my back for the whole of my time in hospital,  this was because they had carried out a myocutaneous flap reconstruction in the operation.  Essentially this means they created a new pelvic floor for me, with the aid of muscle and skin from my buttocks.  Post surgery it would be about 10 weeks until I could lie on my back again.  The nurses would change me from side to side at regular intervals during my time in hospital.

A big physical challenge whilst on the ward was my first shower.  I found it exhausting,  but my nurse was amazing and she also changed my stoma bags with me for the first time.  So, in this way,  I was gently put on the path to recovery.   As time went on the nurses subtly gave me more autonomy.   Together with help from them and my stoma nurses I learnt to empty and change my bags myself,  and I began to be able to shower on my own.  I continued my work with the physiotherapists and spoke to different teams about any issues that came up.  My team continued to monitor me and on the Wednesday before Easter I was finally allowed to try to start taking on clear fluids.

Although I had not physically eaten for nearly two weeks,  I was being fed intravenously by a method called TPN.  However the thought of proper food was exciting.   The NG tube came out and I was able to consume clear soups, jelly and ice creams before being moved onwards to soups such as tomato soup and tea with milk.   Anyone who knows me well will realise how excited I was by the tea!   On Good Friday the doctor on shift decided I could move onto more substantial foods.  I thought this was great news.  I managed a bite of some chicken, a little mashed potato and some ice cream for dinner.   I felt a little full after eating but generally felt fine.

However late that night my stomach decided it wasn’t quite ready for me to eat properly just yet.   At regular intervals and well into late morning on Saturday,  I continued to be sick.   And when I say that,  I mean I threw up a lot.  As another patient put it,  who else outside the medical world knew that you can throw up bile for days without eating?  I was learning the lesson the hard way.  This of course had to be dealt with swiftly.  The nurses waited it out for as long as possible,  instructing me to only take sips of water every so often whilst we went back to square one again.   Unfortunately,  ultimately this also meant the NG tube had to be put back in,  but this time whilst I was conscious.  All I can say is that sounds came out of my body that I didn’t know existed!!   It was not a fun time,  and physically and mentally I was at a very low ebb.

However,  despite finding the next few days extremely difficult,  I got through them  with the love and support of fantastic family and friends both on the phone and in person,  and of course with the support of the nurses,  who reassured me that this time would pass.   They of course,  had seen it all before.  Perhaps it was a lesson for me.  My body’s way of telling me I wasn’t ready to go home yet.   Indeed,  when I saw Mr Rasheed again, back from his holiday,  he told me that unfortunately he wasn’t surprised to find me still in hospital.

I think it’s very common for anyone who has gone through such a major operation to go through highs and lows and I was no different.  On one hand I went through waves of feelings of euphoria.   I couldn’t believe I had got through the operation,  and the sense of gratitude I felt towards Mr Rasheed and his team were indescribable.  However I also realised how much I’d been through in the year leading up to the operation and there was grief for friends who had been less fortunate than me.  All the nurses had warned me that these feelings would come and of course they were there to help pick up the pieces.

Towards the end of my time in hospital my mood dipped again.  This was truly,  the most difficult experience of my life.  Although I was very able to walk and move from side to side in bed,  I felt pretty ill physically and psychologically the challenge of learning to eat,  once we started up again, was hard.  Through it all,  the support was amazing.   Not just from family and friends,  but also from my team and nursing staff.   Mr Rasheed would tell me that my appetite would gradually come back and more importantly to keep on drinking so I was well hydrated.  I was able to get out to a local coffee shop and even sat outside a pub one afternoon with some friends drinking orange juice and nibbling on crisps.   Slowly but surely I would get there,  he reassured me.  “You’ll have good days and bad days,  when you get home, but gradually the good days will outweigh the bad”  he told me.

A few days later,  I was deemed ready to be discharged.   Whilst not feeling that great I was ready to face the next chapter.   I’d spent the whole of April in hospital and was realeased on 1st May, the day before my birthday.   On the evening before my discharge Mr Rasheed came to see me.  “I was going to tell you this in clinic in a couple of weeks”  he said, ” but I thought you’d like to know now.   “I got it all.  We got clear margins and of the 40 nodes we took,  there were no traces of cancer”.   That truly was the best birthday present I could ever have been given.   I knew I would face more challenges and going home was in some ways only the beginning,  but it also felt like we were at least finally closing a chapter.

















The Human Spirit

There are pros and cons to writing a blog reflecting on difficult times.  I plan to catch up and write in the present as I go forward,  but I felt it was it was important to catch up properly first.  So back to the pros and cons.  The pros in my case are that I can reflect back and know I got through the difficult time of the wait for the surgery.  The con is I forget how challenging it was.  I’m a glass half full kind of girl but sometimes I need to be honest with myself and acknowledge that life isn’t always easy.

I did get through that time though.  In no short part thanks to my amazing family and friends.  Telling people you love difficult things is challenging because you don’t want to hurt or scare them, and because it upsets you, but they were brilliant and were so supportive and encouraging.  It really helped.  In the days after our meeting I kept much of the details of the surgery to myself save for family and close friends.  It also gave me some more time to process my own thoughts.  I knew that ultimately I was going to get through, but I just couldn’t imagine what life would look like living with one stoma let alone two.  I really didn’t want to lose my bladder.

However one of the many amazing things the Marsden did for me was to arrange for  me to speak to a former patient who had a very similar operation to me with the same surgeon.  I can’t tell you important that was for me.  I first spoke to her on the phone in early February.   She’s about a year and a half ahead of me in terms of surgery , so near enough to remember what it was like but far enough ahead to tell me of how life can go on.

Whilst being very honest,  for which I’m eternally grateful for,  she was amazingly positive.  Almost the most first thing she said to me was that she owed her life to Mr Rasheed and the staff at the Royal Marsden.  She said she’d been given a second chance and that she was now more active than she’d ever been.  This, by the way,  is a lady in her early sixties.

At the time I wasn’t sure what exactly she’d had done so when I mentioned that I was probably going to lose my bladder, she said “Clare, I’ve had all that done too.. ” I could have cried.  Here was a woman who was living a full and active life with two stomas.  If she could do that then surely so could I.   We spoke a little about what to expect in hospital but also of what to expect when coming home.  This was something I really appreciated.   I’m pretty independent and it took our conversation to help make me realise this was a time I really did need to lean on family and friends in a more practical day to day sense.

She told me that she thought it was important that we meet so I could see her.  So we met up a few weeks later when we both had clinic meetings.  It was so lovely to meet her and ask more questions.  Nothing was off limits and we even sneaked to the ladies so she could show me her stoma bags and how discreet they can be.  She told me half of the waiting room probably had stomas too.  I would never have guessed.  We shared stories of diagnosis and treatments and plans for the future and agreed to stay in touch.  She told me that I could always contact her.  No question was too much.  She’s been true to her word and we plan to stay in touch always and indeed will meet up again soon.

Clinically, things were managed fantastically by my nurse,  and I met all the various teams who would be involved in my surgery.   They were all very patient and supportive as they explained what they would be doing.  I was particularly proud to hear that the plastic team thought I had very strong stomach muscles too!!  Thanks to my boot camp and PT trainers… those core exercises paid off!!   In terms of the bladder, meeting the urologist was very important.  It seemed that even if I did get to keep my bladder then it could still be problematic and I might eventually lose it anyway.   I think that’s when I began to accept that life was not just possible with a urostomy but that I could flourish too.  He told me of patients of his who were marathon runners!

I had my day procedure with my surgeon in which he performed the colonoscopy and OGD.  It went well and it made him even more confident of getting all of the cancer.  However he did take biopsies of polyps in my duodenum which is part of the small intestine.  I already knew of these as they had shown up on earlier MRIs, but because they were not considered urgent no action had been taken.  Mr Rasheed wanted to make sure that these were benign before moving on.  If it turned out to be cancer then i would need other treatment before my surgery.

The short story is that they are benign.  However at the time it was an anxious wait.  Although the biopsies proved him right, ideally he wanted them out before surgery. This meant I was was referred to a gastroenterologist for another Endoscopy,  only for him to rule that they were too big to be removed in an endoscopy which meant yet more surgery.   Whilst being not cancerous his investigations concluded that they were the type of polyp that would eventually turn malignant.  Another gift from my FAP diagnosis.  He also found a large gastric polyp in my stomach.  This left the team with a dilemma.  Could they perform a resection on my duodenum at the same time as everything else?  Ultimately they decided it would be too much in one sitting.

At the same time  I’d been given a date of 30th March for my operation.   However in a twist of fate, a surgical audit was scheduled for that day, so no surgery would go ahead.   By this stage I just wanted to get on with the operation.  Waiting was excruciating.   I’d love to say I used mindfulness to help ease my anxiety but in reality those last few weeks were full of uncertainty and questions.

I was able to distract myself by going back to boot camps and catching up with friends.  I was able to go out a little and let my hair down and to speak to family and friends about how I was feeling.   With their support alongside my amazing cancer nurse specialists,  I was able to rationalise that I would eventually have the surgery.  And all of a sudden I realised it was indeed going to go ahead.   The week before surgery I had my CT and MRI scans.  This was a good sign, and indeed on the same Friday I was called in early to meet with Mr Rasheed before he left hospital for the day.   As I got my notebook out ready to write notes he told me I wouldn’t need to write down what he had to tell me.  “I’ve got a date for you.  Are you ready for this? ” ” I think so” I replied.   “Next Friday” he said.   “Yes” I thought.  “I’m ready”.



The Plan

I’d learnt pretty early on following my diagnosis that I would eventually lose my colon because of the genetic mutation that predisposed me to the cancer.  I guess at this point it helps if I give a little bit of background information to give more context to my story.

On the same day that my tumour was diagnosed in early February 2016 my gastroenterologist informed me that they were 99% certain that I had a fairly rare condition called Familial Adenomatous Polyposis or FAP for short.  No me neither… although I’m much more knowledgeable now of course.

I’d ended up at hospital following a visit to my GP in which I told her about my change in bowel habits, coupled with my extreme tiredness when out running.  This was soon confirmed as anemia, courtesy of a blood test organised by her.  On the back of that she sent me for an urgent colonoscopy and endoscopy at my local hospital to find out what was going on. Thank goodness for a very good doctor.

During these procedures the gastroenterologist not only found what he suspected was a cancerous tumour in my rectum,  but also hundreds of polyps in both my large bowel and my upper GI tract.  This is very unusual.   Although the general public at large have never heard of FAP, experts in the field come across it relatively often and the number of polyps he saw were a big red flag.   His suspicions were confirmed a few weeks later following a special blood test and once I’d had my diagnosis.

According to the website  “FAP is diagnosed when a person develops more than 100 Adenomatous colon polyps.  An Adenomatous polyps is an area where normal cells that line the inside of a person’s colon form a mass on the inside of the intestinal tract. The average age for polyps to develop in people with FAP is their mid teens.  More than 95% of people with FAP will have multiple colon polyps by the age of 35.  If FAP is not recognised and treated there is almost a 100% chance that a person will develop colorectal cancer.”

FAP is a genetic condition and is usually passed on from parent to child. As the website goes on to explain, the APC gene is linked to FAP and when a mutation occurs  in it then “it gives a person an increased lifetime risk of developing colorectal cancer or other cancers of the digestive tract”.   In simple terms a child with a parent who has the mutation has a 50% chance of inheriting the mutation.  A brother, sister or parent of a person who has a mutation also has a chance of having the same mutation.”

Because it is a genetic condition most people will be screened for signs of FAP with regular colonoscopies from a young age and they will be advised to have their colon removed by their late teens or early twenties. Whilst this obviously means learning to live life with a stoma,  it avoids them developing colorectal cancer.  Left undetected there is no real sign as polyps don’t really do much in the meantime.  I’ve learnt since being diagnosed that there were signs I had the mutation from an early age.  These included such conditions as having ostomas which are non cancerous benign growths usually on the jaw line, I had one removed from my jaw line when I was about 9, and epermoid cysts,  I’ve one of those on my ear that we always thought was from the pressure of playing front row in the scrum in my rugby days.  But back then no one would have been the wiser.  Indeed the gastroenterologist thinks I’d had my polyps since my early teens.

We have no history of bowel cancer in my family and subsequent genetic testing has proved that my immediate family do not have this genetic mutation.  This is of course is a huge relief because it means my first degree relatives and their children are safe,  but it begs the question how can I have the mutation?  My genetic counsellor has however told me that there is a 25% chance that a person diagnosed with FAP can simply be unlucky enough to develop this mutation without any family history.   So I guess it’s pure bad luck in my case.  One silver lining is that it will live and die with me as I don’t have children.  However,  It also makes me a pretty complex case because it’s fairly rare for individuals to be diagnosed as lateas I was, and also because it makes me more susceptible to other complications.  But more of that another time.

In June of last year following 5 weeks of chemo radiation at Charing Cross hospital and follow up scans back at my local hospital I was referred to the Royal Marsden in Fulham.  The surgical team at West Middlesex hospital felt I was ready for surgery but saw me as a challenging case and so referred me on to the Marsden.  When discussing the likely surgery ahead of me I was told that it would most likely be what is called a panproctocolectomy.  This operation involves removing the entire colon, rectum and anal canal and would also mean I would have a permanent stoma.

Although I realised this was a huge operation and indeed life changing, the way I always looked at it was that it was life saving.  Plenty of people live full active lives with stomas and I was going to be one of them.  I’ve had the opportunity to connect with so many people in this part of my life who for whatever reason have not had this type of lifeline to feel any other way.  However after their own MDT (multi disciplinary team meeting) The colorectal team at the Marsden felt I needed more treatment before surgery.  Hence the extra 6 months of chemotherapy to shrink my tumour later in the year.

So when my friend and I came back to the Marsden in late January of this year that’s the operation I was expecting, if they said yes at all.  However I was soon to discover that it was to be much bigger operation than I had antipated or planned for.

Once we had composed ourselves, as I must confess there were more than a couple of watery eyes in the room after he confirmed the surgery would go ahead, my consultant, Mr Rasheed explained more.  With the aid of diagrams he explained how the latest scan showed that the tumour had gone to the pelvic floor area and invaded the back wall of the vagina so it was impacting on the urethra/bladder.   He also suspected that the new polyp showing in another part of the colon was a new cancer.  This was all explained with the use of diagrams in which it became obvious how close our internal organs are to each other.  Because of this,  he gently explained he was not only going to have to perform a panproctocolectomy,  but he was also going to have to remove my womb, posterior wall of the vagina and possibly my bladder too.  Although this would be decided when they were operating.  I would also need to have a new pelvic floor made up and there were several ways this could be done but once again this depended on decisions made earlier in the surgery.

He went on to explain that this was the biggest operation that someone could have, telling us it made having open heart surgery look like a walk in the park.  He also told us that he was one of only 10 surgeons in the country who could perform the operation, although amazingly he said he performed one weekly.   It would last up to 15 hours and I would be in hospital for around 3 weeks.  There was an 80 to 85% chance he would get all of the cancer and he would be looking to operate in March sometime which gave my body time to rest from all the chemotherapy.  There would of course be a team of surgeons including himself, the Urologist, Gynaecologist and the Plastics surgeon involved in the operation.

He explained that in the coming weeks he would see me for a day procedure where under general anaesthetic he would perform a colonoscopy and an OGD where he would also check my upper tract.  This was to make sure everything was as he expected.  I was also to meet all of the other teams that would be involved in my surgery so they could fully explain their part in my operation.  Finally,  not long before surgery I would have both an MRI and CT scan to make sure there was no change.

In the meantime he told me to get as fit as I could because what he was going to put me through was like doing 15 rounds with Mike Tyson!  He was amazed but encouraging that I wanted to return to boot camp saying it would definitely help!  He then outlined his priorities as being safety, removal and avoidance of further complications.   Finally,  he explained that in 6 months to a year I would be back to 80 to 90% of how I was currently.  I would never be quite the same but it would be the new normal.

For me what sets my consultant, Mr Rasheed apart,  is that this was all explained to me in a way that I could understand and in a way that showed he cared.  He was aware that I was so relieved that I was going to have the operation that I was only really taking in about 10% of what he told me.  Although it seemed huge and of course it was and is, he told me of other patients who had the same or similar operations and of how they were living full lives now.  If I needed to meet a patient who had had the operation before then they could arrange it which i certainly did. He was also very aware that they were going to look after me physically but that he wanted to make sure I was supported emotionally too.  If I had any more questions then I could come back at any time to see him or speak to one of his amazing team.

My friend who was a wonderful support and I left the meeting feeling pretty shocked.  My over riding emotion was one of one of shock but I also had complete trust in him.  I really didn’t want to lose my bladder because the thought of living and dealing with two stomas seemed extremely daunting,  but at the same time i had this inherient belief which stayed with me always that this was a man who was going to save my life.  My friend actually reflected my feelings very well in her brilliant notes on our meeting later in the day.  She said she came away thinking that the next few months were going to be extremely hard for me but if I ever wanted to have somebody in my corner then it was Mr Rasheed.

She wasn’t wrong.