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.”