It is difficult to find adjectives that do justice to the turmoil in my life during September October, November and December of 2018. Life has been tough enough for our family while dealing with my situation, but when you consider the emotional challenges created through the death of someone so important to our family, our lives have become almost unbearable.
Sophie does a fantastic job of putting on a brave face, sometimes to her detriment. While Val was ill, she spent every moment she had to be with her while trying to hold it together for us as a family; she had no time for friends or socialising as all her energy was taken up caring for someone she loved so dearly.
Relationships become interesting; sometimes the people you expect to be there, just seem to disappear, and those you never expected to step up, deliver the support, tolerance, patience, and compassion you need, holding no expectations other than pure friendship and love for you
I can’t imagine how tough this is for her and I am grateful for her continued support. That is not to say we have not had a difficult time over these months, I would say some of our most challenging as our emotions have boiled over on a regular basis, trying to deal with the grief and sadness. But through a deep desire not to let this situation tear us apart, we have come through the other side and are closer than ever.
I seem to be tolerating this chemo reasonably well so far, although the neuropathy seems to be building – it’s really weird. I can’t touch anything cold without my hands going in to a sort of cramp – maybe arthritis is like this, it’s really weird? I was holding a cold can of drink the other day – after a few minutes, my hand froze – I couldn’t move it! I also get sinus problems now, it can be quite painful – apparently its related to the same part of the nervous system that the drugs attack.
We celebrate my boy’s birthdays – the big 21 for Oliver, and Charlie’s 17th – so he can now drive! Scary stuff. Any events like these are so important now – I have all their important birthdays and milestones mapped out. Moments I need to be alive for.
After pleading with my lovely oncologist (about time I gave her a name – Nicola), I managed to get a week off between cycle 3 and 4 as we planned on going to Cowes for the week. It ended up being a weekend, but we had a great time. Despite the crappy weather (Force 5/6), I managed to take my boat across to Cowes. I’ve never seen my pal Jon look so terrified as we headed out of Portsmouth Harbour; “are you really sure you want to do this?” he repeated, about 6 times! It was a little lively, and totally exhilarating; you really know you are living. At one-point we were cruising beside the ferry that our friends were on, including Sophie – we got some great video footage.
I met with Nicola at the end of November because she had been testing me for a couple of things; do I have the hereditary gene and is my cancer applicable for the latest bowel cancer immunotherapy, Nivolumab. Another reality check – Nivolumab won’t work. This is pretty shit. It rules out another potential option. I’ve already exhausted one option now. I guess I’ve got to hope I can keep going long enough for them to find something that will work! To be fair, although immunotherapy is hailed as the paradigm shift in western treatment for cancer, it still only has had limited results so far…
I don’t have the hereditary gene – which I knew already but wanted to make doubly sure. Still, good to know given the ramifications this has for my boys. Whatever happens though, they will need to get themselves screened earlier than normal. A friend of mine who had it in the family started aged 40.
Chemo cycles 5 and 6 always seem to feel worse – there is a cumulative effect, and this seems to affect my mood. I keep going, trying to be positive but I’m feeling lost. I’m missing work, missing the routine, the purpose, the reason to get out of bed in the morning. I really didn’t think this would happen – you sometimes dream about not working, the ultimate goal; the reality is not all it’s cracked up to be. This is when I start to think about what I can do to give my brain occupied. Giving something back somehow is an obvious one, maybe I could share my story and try to help other people that might be struggling – and so I finally got around to building the website. There was only one snag, I can’t build websites! So, I turned to a man who can, Ian Stone, Sand Dog Design. It was a difficult phone call; I don’t like asking for charity, but Stoney was a true gentleman, and has really stepped up, designing and building the site for me. I can’t thank him enough.
As I put the words down, trying to make sense of it all I am filled with trepidation and anxiety – I’m a really private person. I have Facebook but never really do much on it. I hate people knowing my business. And I’m thinking about exposing my thoughts and experiences to the great unknown? But if I could help just one person? Has to be worth it, doesn’t it?
The first stage of this started on December 1st when I signed up for Bowel Cancer UK’s Decembeard challenge. Fairly self-explanatory – grow a beard, no shaving until January. I put it out to Facebook, as did Sophie and I have to say I’ve been overwhelmed by the response, we’ve already raised over £2000. Thank you so much.
At the same time the toughest moment of my three-month cycle looms – the scan. I simply cannot describe how this feels – it really is a life or death moment, every bloody time. I wish I could shut my mind off – remove it for a few weeks – or train it somehow? Maybe I’ll head East and learn to meditate!
Nicola was a bit surprised I wanted it done before Christmas – she said most people preferred to wait. I get that, but I have a few ideas and possible travel plans for the New Year, so I’d rather get it done, good or bad. CT on Monday 17th December and an appointment with Nicola on Friday 21st.
I’m really struggling with the diet. The last scan really knocked me. I’m just thinking “what’s the point, its cancer, nothing can help, who am I kidding?” It’s not helpful thinking – but I really struggle with the terrible dichotomy I have in my life; quantity vs quality. Can I have both? Quality to me equals drinking alcohol and eating “nice” food. Quantity means being a Saint. I’ve never managed to equate good times with healthy living. I’ve settled into a kind of 70:30 way of life – I am mostly good, but I just can’t seem to abstain from the food and drink I like. It should be easy, a no brainer, cancer feeds off sugar – so no sugar then? I just find it so hard, and after the knock at the last scan, I’m questioning everything.
I felt so good when I was being strict. I need to try and change my thinking.
And so, Christmas approaches. Funny time of year for my family. It will be the first one without Val. I wonder if it will be my last.
The break is nice and relaxed – we spend Christmas Day at my sisters with my family, and we host at ours on Boxing Day. Sophie’s family are in France so not with us this year. It passed without a hitch, obviously emotional due to Val being deeply missed, and also because my Mum passed away on Boxing Day. I still miss her so much.
We managed to spend a night away with friends, boys playing golf, girls… not sure what they did actually. Just nice to get away. And then New Year’s Eve – the usual aggro working out what to do but we had a great time; Vinyl Party. Fancy dress. The theme? You had to dress up as the title or artist of the record that you had to bring along! Everyone made an effort; I dressed as a large strawberry. I was a Juicy Fruit. Mtume.
Now I have a break and I want to make the most of it. I start to put a not very well thought out plan into action – go to Nepal and live in a Buddhist Monastery with a Monk. I have the Monks’ name – he is happy to host me. That’s all I know. I just want to see what I can find, and let my instincts take me. I figure that learning how to be calm, really calm, will help my body to heal. I book a flight on 7th January to Kathmandu, and a return 4 weeks later. This is so unlike me. I’m a control freak for God’s sake.
As time draws nearer the enormity of what I’m about to do sinks in. I don’t even know where this place is. I have no idea what to pack! I’ve not really thought about illness – I’m not on chemo, but the last one was only two weeks ago. There could be a risk? I’ll be alright won’t I? Won’t I?
I have know idea what to pack!