A few weeks ago I reached a landmark. It was the 2nd anniversary of being able to leave hospital cancer free. Unknown to me at the time I still had a follicular carcinoma in my thyroid, but thankfully this was dealt with fairly easily a year or so later when my thyroid was removed as a precautionary measure due to my FAP diagnosis and it’s association with Thyroid cancer. But still the main horribly invasive cancer was gone.
Anniversaries are a big deal in the cancer world and more specifically when you have been fortunate enough to reach a place where the cancer has been removed. I’m incredibly grateful to be able to be one of these people. I’ve come so far. And yet the last couple of years have also been two of the most challenging of my life.
A couple of months ago I met up with a group of old rugby friends who I hadn’t seen for a while. One of them asked me how I was. I was torn between giving an honest answer and glossing over the truth. I realise of course that I’m not unique. You don’t have to have had a cancer diagnosis to feel this way. However it’s a question I sometimes struggle with because whilst I feel incredibly grateful, the truth is that life is very different for me now.
I answered honestly and told her that I was doing well but that life was pretty tough. My friend was really surprised but caring in her response. The reason I write about it is that I suppose it shows that even 2 years on and being “cancer free”, life just doesn’t return to how it was before again very easily. In my case I desperately want to tell people that I’m doing well, and although for the most part I am, the truth is that on a day to day basis I have so much more to manage than I ever did before and life can be challenging.
It’s the same for all of us post cancer survivors ( for want of a better phrase). Not only do you have your post physical treatment scars (in my case I now have 2 stomas), but you also have your mental battles. For example there is the insomnia or the fear that can creep up on you when waiting for new scan results, scan anxiety we call it.
Added to that, personally I haven’t really ever been able to leave the hospital world behind for too long. My genetic mutation which lead to the cancer diagnosis has also left me open to a whole new world of complexities and conditions. Although the cancer has gone I still face different battles with my body. Indeed it sometimes feels like my body is imploding in on itself. This leaves me feeling lost. I don’t have cancer anymore but yet I don’t feel like I completely fit into the world of someone who is 2 years post cancer because there always seems to be another medical obstacle in my way. First of all it was pre cancerous polyps in my duodenum which resulted in a big operation followed by being readmitted for severe dehydration. Then it was a suspected secondary cancer in my liver, followed by a diagnosis of thyroid cancer after a full thyroidectomy and now I have benign aggressive desmoid tumours which affect my abdominal wall and bottom.
My main daily battle is managing my nutritional and hydration needs. A few weeks ago I saw the Intestinal rehabilitation team at St Marks Hospital. Professor Clark had referred me to them just to help keep an eye on my weight and associated issues. I was fortunate enough to be seen by the consultant, her registrar and one of the dieticians. I’m a little different to most people with ileostomies because I have a condition called shortened bowel syndrome due to the extent of my surgery which means I have to be particularly mindful of what I eat and drink so it was a good idea to be put on their watch list.
We began by exploring my diet. I told them that on the advice of the Marsden I stuck to a low fibre diet and included protein with every meal. They reminded me that it was best to also limit vegetables to a small portion per day because too much will add to the output of my ileostomy. Ideally you want to limit your ileostomy output to emptying your bag 5 or 6 times a day at most and I was exceeding this.
They also told me to limit my intake and type of fruit that I eat. I tend to stick to bananas although I treat myself to a handful of strawberries a day with my porridge. Berries are high in fibre though so I need to keep these to a minimum. I also need to avoid fruit with skin on so I tend to only eat fruit like apples in crumbles now. One little bonus is that I can eat full fat yoghurts and cakes and biscuits because I need to try and add weight, not lose it. I take full fat milk in my cups of tea too. When eating carbohydrates I have to stick to white rice, pasta and bread but I can still eat sweet potatoes as well as ordinary white potatoes.
I had forgotten a few things so it was good to be reminded of the possibility of eating tinned fruit and also that I should try and add salt to all my savoury foods. I actually lose a lot of salt through my output, so I need to add it in to my diet rather than limiting it. Because I have a lot of scar tissue and adhesions from my surgeries I have to be careful when eating certain meats so I tend to get most of my protein from fish, eggs and a little cheese.
I told them that I understand that I need to limit my normal liquids to under a litre a day and supplement it with at least a litre a day of a specially made up drink called St Marks which helps replace vital electrolytes and minerals. However by the middle part of last year I had reached a point where I could stretch the boundaries a little and drink a little more than that on some days without it really affecting my output too much.
This was a bonus because it meant I could feel a little more “normal” when out and about with friends. To help manage my output I just upped my medication to help slow my bowel down. However as the months have progressed, this hasn’t been as easy. First of all we had a very hot summer which meant I would start most days feeling quite dehydrated anyway and then my desmoid tumour began to grow underneath my ileostomy thereby squeezing the space for extra liquid. This had a knock on effect of making my output higher. This obviously means the bag needs emptying more frequently and it becomes more effluent in form, which is only made worse if I keep on drinking normal fluids and leading to potential dehydration if I’m not careful.
The team reminded me of how important it was to try and keep to this drinking level because it will help me absorb all my nutrients, keep on weight and limit the risk of dehydration. They were so kind and understanding that it actually just made me want to cry. I understand the rationale of their advice but in reality it’s pretty miserable. A litre of fluid over a day doesn’t actually end up being very much. It almost made it worse when the consultant admitted that she knew how difficult it was because she had tried it once and couldn’t do it.
If I enjoyed St Marks a little more then it wouldn’t be so bad, but the truth is I’m not a big fan. However it does work and although it doesn’t feel quite the same as a cool glass of water when I’m thirsty, it actually does work better in the long run. The thirst I feel now is way beyond how I’ve ever felt before and it takes some will power to stop myself downing too many cold hypertonic fluids when I’m thirsty rather than my St Marks.
The idea is not to drink it too quickly, but to sip on it throughout the day interspersing it with a couple of ordinary drinks. It does taste a little more palatable when very cold so the team suggested putting ice cubes into my daily jug that I make up even when it’s sitting in the fridge and sucking on ice cubes when I’m feeling thirsty. I told them I enjoyed sucking on ice lollies rather than drinking squash because I felt sated for longer and they agreed that too was a good idea.
The team also upped my medication so I now take a bunch of tablets 4 times a day ideally half an hour to an hour before food. They told me that if I followed these instructions as much as possible then we could get my output down to a reasonable level. We agreed to meet up again in 3 months time to see how this plan had worked. The consultant told me that whilst she was happy for now, we needed to take a wait and see approach. She didn’t rule out the possibility of moving me onto intravenous fluids and nutrition if necessary in the future if my weight and BMI begin to drop to the underweight markers. I still have my port infusion device from chemotherapy days so it would be relatively easy for them to arrange.
In the days following our meeting I felt very sad and down. I’ve always enjoyed 3 or 4 cups of tea a day on top of my daily intake of 2 litres of water. I enjoy going out socialising and although I rarely drank alcohol at home, I’d enjoy the odd week night out with friends in a restaurant or bar where I might have a couple of glasses of wine or a couple of pints of lime and soda. Weekends were big socialising times too. Going out for coffees ( always tea in my case!) and although my late night partying days were on the decline, meeting up in pubs or restaurants for dinners and drinks.
I can still do the socialising of course, but the difference now is that I don’t have the same freedom. If I’ve had a couple of cups of tea in the morning then come a Saturday afternoon in the pub for a 6 nations day for instance, then I’m probably looking at no more than a pint of lime and soda for the rest of the day plus one more small drink later that evening. If I exceed this limit then at some point during the day, or usually early evening, my stoma will suddenly go into overdrive and I’ll need to keep running to the loo to empty my bag as it fills up with excess liquid. This is not only annoying and not good for my body but also leads to worries about potential leaks.
People often ask me if I can still drink alcohol and the answer is yes. However I have to be careful in my choice. Beer and cider is a no/no. I can get away with a small glass of wine but the go to drink for me now would probably be something like a gin and tonic or a glass of pimms on a sunny day. The truth is that as time has gone on, I realise I don’t really enjoy drinking alcohol anymore. If I do drink I can only really enjoy one drink anyway and I would rather use my allocation on something else. I’ve no doubt that if I could still drink in the same carefree way then I would be drinking alcohol but somehow it’s lost it’s attraction which I suppose is actually a positive. I always gave myself such a hard time the next day if I over drank the night before and it saves me a good deal of money.
I struggle more with the feeling of isolation of having to be so mindful all the time. I feel frustrated that I don’t have the capacity to be able to enjoy even 2 pints of soft drinks on a night out without having to worry about the effect on my stoma. The most difficult part is feeling thirsty and trying not to over drink whilst watching everyone else drink the drink of their choice and not feel resentful of the situation I’m in.
Friends and family are supportive but I can’t really expect them to understand in the same way because it’s such a rare condition and how would you know how it feels if you’re not in that position. As Doctor Donnelly told me, there are people out there in a similar or worse situation than me but it’s pretty rare to have desmoid disease and shortened bowel syndrome. About 1 in a million apparently! So I’ve been a little unlucky.
However as the weeks have gone on, I’ve settled into a new normal again. For the most part I try as much as possible to keep to my litre a day of ordinary fluids. This usually comes in the form of 2/3 small cups of tea a day, a little cheeky soft drink, a tiny amount of fresh orange juice with my supplement tablets in the morning and the orange squash I pour into my St Marks to make it more palatable. This has helped bring my output down. Obviously weekends away and night outs are a little more complex so I’ll probably go at least half a litre over my excess but as long as it’s not for too many days in a row I can get my output down to a more normal level within a day or two when I’m back home. I savour my normal drinks in a different way now. My morning and late afternoon cup of teas are so important! As long as I can still enjoy them then it helps set up and finish my days!
I realise of course that there are worse situations to be in and people have been dealt a much more challenging time than me but hands down this for me is the worst side effect of all the treatment I’ve had. I’m so glad to be alive but it’s tempered with a sense of regret and a hankering for times of the past.
I hope this blog has given people a small insight into how complex life post cancer can be. I don’t think I’ll ever fully get my head around my new new normal. On some level I think I’ll always battle with it but all I can do is take it day by day and take some focus away from it. So with this in mind as well as attending my own counselling sessions I am back doing some core training at my counselling agency where I’m due to start counselling young people again soon. I also have an interview for some part time work which will fit in nicely with this kind of work and schedule. Life has its ups and downs but I’m determined to keep on moving forward.
A complex case 