My new normal
April was bowel cancer awareness month and Bowel Cancer UK ran a social media campaign to share people’s stories #thisisbowelcancer. They asked people to share a word to describe them and I chose GRATEFUL. Not grateful for cancer in any way, but grateful despite it. I’m particularly grateful for my family and friends, and for the amazing medical team who look after me. And I’m grateful that today I have life, whatever the future may be bring.
I started writing this post last month when I was settling into a ‘new normal’; returning to a semblance of normal life between fortnightly treatments with very little to update on. Then things all kicked off again. But that in itself is my new normal; constant uncertainty, unexpected obstacles and changing plans. So here’s my latest update, followed by what I really wanted to make this post about, living with a chronic yet largely hidden illness. It’s a topic little talked about and one I feel strongly needs to be discussed more openly.
After the positive news in February that I was responding well to chemo and my tumours had shrunk, we started to discuss future treatment. Unfortunately we know that at some point the cancer is highly likely to become resistant to chemo so it will stop working. This period of time varies hugely from person to person, but is, on average, a few months to a couple of years. As surgery isn’t an option for me given how widespread the cancer is, this means that, even with a good response so far, my prognosis isn’t great. Once chemo stops working, the options are alternative chemo drugs, which have a similar problem, or clinical trials for targeted drugs or immunotherapy which in the most simplistic sense, tackle specific mutations in the cancer cells, or work on correcting problems in the immune system that have allowed the cancer cells to grow. We know I have the KRAS mutation which, although fairly common in bowel (and some other) cancers, there is currently no treatment or clinical trials available for. However, we have always known that my cancer is a little odd; there is no primary tumour (so we can’t be certain where the cancer started), and metastasis to the bone is unusual in bowel cancer, so my oncologist agreed to run some extra genetic tests on the tumour.
The results gave us some really interesting, potentially very positive, news! The tumour tested positive for the HER2 gene mutation which means it has high levels of a protein called human epidermal growth factor receptor 2, which promotes rapid growth of the cancer cells. This mutation is unusual in bowel cancer but much more common in breast, oesophageal and stomach cancer, and the exciting part is that there are targeted drugs available to treat it! They work by blocking the effects of HER2, thereby slowing the cancer cell growth, and encouraging the immune system to attack and kill the cancer cells. Success rates in breast cancer, for which the drugs are widely used, are good, but they have not been widely tested for bowel cancer given how uncommon the mutation is. There have been two very small trials that I’m aware of (only 20-30 people each) and success rates were good, but unfortunately this isn’t enough to enable the drugs to be approved for use for bowel cancer by the NHS. This means we need to work out a way to self fund them (at a cost of £1000s per month). Sadly we were turned down by the drugs companies for compassionate use (where they agree to give them for free), and more frustratingly, by the NHS for exceptional use funding. The argument is that as HER2 is found in around 3% of bowel cancer patients, it’s not an exceptional case!
Despite this discovery, chemotherapy remains my treatment until it stops working, so my fortnightly regime continues. There is no point switching to new drugs which may or may not work while I’m on ones that are working, but it’s amazing to have a new option for the future.
All was going fine, until last week when I started to feel rather unwell. To cut a long story short, I ended up in A&E where they discovered a large amount of fluid around my heart. This was causing me extreme discomfort and breathlessness and putting the heart under pressure. Cue blue light ambulance ride across London to St Barts (which doesn’t have an A&E but is a specialist cardiac centre) where they proceeded to drain 640ml of fluid from the area around my heart. I was kept in hospital for a number of days to monitor whether fluid would re-accumulate. Luckily for now it’s stable, but if it returns they will cut a small hole in the sac around the heart so the fluid can drain off continuously. All a bit of a blow when I’d been feeling so well. Chemo has been delayed until I’ve had a CT scan, incase this is a sign that chemo has stopped working and the tumours have grown. Fingers crossed that’s not the case…
Living with chronic illness
Which brings me back to my ‘new normal’. This is a topic I feel it is important I write about, as I want to raise awareness of what it is like to live with a chronic illness or hidden disability. It’s something that I rarely see discussed, and I know that I for one, really didn’t have an appreciation of the true impact such issues can have on day to day life. Here’s a little confession; I used to be genuinely surprised by people doing things like getting a bus for just one stop. Why not walk, it would take only a few minutes?! But now I appreciate that I don’t know their full story. Just because they look able, who knows what hidden difficulties people may be dealing with. I often get told, with surprise, that I look really well. I take this as the compliment it is meant to be, and quite a lot of the time I feel pretty well too, but the truth is that cancer takes a physical and mental toll on me every day. I have constant stiffness in my back from surgery and my right hand and arm are still partially numb with limited functionality (likely to be permanent). Then there is chemo. Chemo wipes me out for about five days a fortnight. It makes me tired; not just ‘in need of an early night’ tired, but at times, totally and utterly exhausted. My limbs can feel like lead, or jelly, or both, and climbing the stairs in our three storey house sometimes feels like running a marathon. The drugs and pump and even dressing over my portacath have a smell I hate, and this, combined with a horrid taste I get in my mouth, make me feel a little nauseous and I tend to lose my appetite. And of course, with my immune system well and truly battered, I have basically had a cold for the entire time I’ve been on chemo! I think the best way I can describe how I feel on chemo is that it’s like jet lag and a hangover and a head cold all at once. Some rounds aren’t so bad, but even with a good round I feel exhausted and generally blurgh for a few days.
But despite all of this, I’m looking pretty healthy, particularly in my non chemo weeks when I really do feel much more like my old self. I’ve put back on about half the weight I lost, and I’m doing regular small amounts of exercise, which together are making me look and feel stronger and fitter. My hair has thinned a lot, but some has started growing back recently, and whilst it looks a bit of a mess, with a headband on, anyone who doesn’t know me wouldn’t think anything of it (and I’ve been lucky to keep my eyebrows and lashes). I am of course, very glad of all this, and don’t want to look like a cancer patient, but sometimes I find it hard not having visible signs of my illness. I constantly find myself apologising for ‘a problem with my hands’ as I fumble with my wallet, drop things, or can’t fill in a form etc. I have a ‘cancer on board’ badge which I’ve worn a couple of time on the tube when I’m feeling especially tired and may want a seat, but it makes me feel so self conscious and it’s not something I actually want to advertise! These are all little things, but combine to knock my confidence and get me down from time to time. I’m so much more accepting of and patient with people these days; when I was rushing around in a busy job I would get frustrated with people walking really slowly or taking ages to do simple things, but now I see people differently. I hope by sharing my story it will make others see people in a slightly different light too.
Finally, on a positive note, I’m so excited to have my new website up and running! It was in the planning when I was diagnosed but I felt I had to put everything on hold then. Now I’m thinking more about the future, it was something I wanted to go ahead with, and it feels like a really exciting step towards my new career and building a life with my ‘new normal’.