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.

 

 

 

 

 

 

 

Hospital

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 cancer.net  “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.

 

 

 

 

 

Thought for the day

So it’s not really a poem. But this is what the nurse photocopied for me and which i refer to when things become a little too much.

There are two days in every week about which we should not worry, two days which should be kept from fear and apprehension.  One of these days is yesterday, with its mistakes and cares, it’s faults and blunders, it’s aches and pains, yesterday has passed forever beyond our control.  All the money in the world cannot bring back yesterday.  We cannot undo a single act we performed, we cannot erase a single word we said.  Yesterday is gone beyond recall.

The other day we should not worry about is tomorrow, with its possible adversities, its burdens, its large promise, and perhaps its poor performance.  Tomorrow is also beyond our immediate control.

Tomorrow’s sun will rise either in splendour or behind a mask of clouds, but it will rise.  Until it does we have no stake in tomorrow, for it is as yet unborn.

That leaves only one day – TODAY – Anyone can fight the battles of just one day.  It is only when you and I add the burden of those two awful eternities, yesterday and tomorrow, that we break down.  It is not the experience of today that drives us mad; it is the remorse or bitterness for something which happened yesterday or the dread of what tomorrow may bring.  Let us therefore to live but one day at a time.

 

The Moment

“So it all comes down to this”, that’s how I felt as I sat waiting with my friend in the small consulting room on that January afternoon.  It was nearly a year to the day that I been unofficially told I had cancer.  Of course it didn’t really just come down to this meeting. If we had been given a different answer to the underlying question, “Can you operate to remove my tumour now?” , then I would have gone back to my lovely oncologist and we would have come up with a different plan.  Perhaps more chemotherapy, a different cocktail this time, or we could have looked at clinical trials, the private option, what is on there that I can’t access on the NHS? Or maybe a second opinion. London hospitals first and then perhaps The Christie in Manchester? But the importance of this moment was not lost on me. As my oncologist prepared me after inconclusive scan reports the week before, she was positive. She had to be really. Although there looked to have been very little response to the treatment, my tumour had not grown and importantly there was no sign of metastatic cancer ( secondary cancer, when the original cancer mutates to a new site). ” They have to take you” she said “because if they don’t then we are kind of running out of options..” Her words encapsulated my deep seated fear, we both understood that although my cancer is treatable, I need this operation for a curative outcome. The problem with my tumour is not its size, it’s the location. The tumour ( after all this time I really need to name it) is very low down in my rectum. One of its edges is very close to the iliac artery which is hugely important because it helps supply the blood to the legs and pelvis. When surgeons go into operate they are looking for clear resection margins which in layman terms means they need clear edges of non cancerous cells around the tumour so that they can be sure of taking the cancer out and not leaving any behind. Five weeks of chemotherapy tablets and pelvic radiotherapy at the same time in the spring time of 2016 followed by six months of horrid intrusive IV chemotherapy later in the year had not really made much impression on shrinking the tumour away from that edge. So when people asked me what date or when the operation was going to be, they were blissfully unaware that there was a very real possibility that there could actually be no surgery. That can happen. A surgeon is only going to operate on a patient if they can see a possible positive outcome. They had sent me away before who was to say it could not happen again. And so it was that we sat waiting on that January afternoon.

The weeks leading up to the meeting had been been challenging. When I was first diagnosed I understood I was going to face a physical challenge but I had no idea of the psychological challenge ahead. As one of the many wonderful patients I’ve met during this period of my life once pointed out “ Cancer challenges you to be at your most psychologically intelligent when you feel at your weakest physically” I’ve identified with those words many times during the past year. In some ways I find times of treatment easier to navigate. You have your treatment plan in place. You know where to be at different times on different days on different weeks. You go through the motions, doing all the things that are asked of you in the hope that the radiation or the poison that is being pumped into you is working its magic. Killing the bad cells even if the good cells take a battering too. However it is the time between treatments, waiting for scan results and then whether they will be good enough for another hospital to operate on you, that I’ve found the most difficult.

One of the ways I’ve learnt to deal with the mental challenge of living with cancer is by trying to live my life in a more mindful way. I’m still learning new skills and I certainly don’t profess to being an expert on this but it’s amazing how living life in the present without focusing on the regrets of yesterday or the potential for tomorrow can help. Whilst in treatment one of the many amazing nurses in my chemotherapy unit shared with me a poem that another patient had given to her. It was all about living life in the present. He told her it was the only way he had managed to get through this treatment. The poem moved me greatly and so I asked her to photocopy it for me and it now sits proudly on my bookshelf. It was a timely reminder of how being mindful can help you in times of adversity. So in the week proceeding my meeting I concentrated on staying as much in the present as I could. Controlling what I could control, which was how I dealt with this situation.

So when the moment came, although I felt nervous I also felt strangely calm. It helped that the consultant was the same surgeon that I had met for the first time in June. He is without doubt one of the most amazing people I have ever met. Not only he is clearly one of the best surgeons in the country, he also has a real holistic approach. He sees you as a person not just a patient. We caught up on how I had found my treatment, how I had managed my life through this period and my genetic condition that pre disposes me to the cancer. He talked me through my response or lack of it to the treatment and why my tumour in particular is located in such an awkward place. When at last I was able to ask the question that had been sitting with me for so long he gently took his glasses off and looked me straight in the eye “ Yes we are going to operate on you”. “Finally” I thought, “ I can begin to look forward.”