Part 14: Don’t Stop Thinking About Tomorrow

I began writing this post in my chemo chair whilst a slightly reduced dose of Oxaliplatin (due to the neuropathy in my feet) clicked and whirred its way through my veins, kicking off chemo cycle 7. 15 days of Capecitabine, 5 days of G-CSF injections and 3 days Dexamethasone followed and before I knew it, I was facing up to cycle 8 (blood test allowing). My last round for now - and I hope, forever.

The previous Friday had been my 37th birthday and I hadn’t been looking forward to it at all. Not just because the cycle before had brought with it infection after infection, unpleasant G-CSF side effects and 5 days of painful acid reflux ensuring that I wasn’t even able to enjoy my birthday cake or the Thai takeaway we had been lusting over for weeks prior. Oh Lockdown, how you have made us relish these little indulgences we once took for granted!

Eating birthday cake despite acid reflux and my first step out of isolation with a socially distanced birthday bike ride.

The main reason I wasn’t looking forward to my birthday was that I just don’t want to be another year older: it highlights for me just how much this year that cancer has already stolen from me has and will cost. It brought all my fertility fears, only ever slightly buried, to the surface. It also makes me worried about the impact having a year out will have already had on my career. It makes me panic over the size of my pension and question where I am in life, muse over the things I have missed out on and the milestones I still haven’t reached…

Being another year older reminds me that my opportunities are more limited than they were, and that time is against me, especially as a woman. And please, if you are older than me, don’t patronise me with platitudes - especially if you already have a family (or have made a conscious decision not to) and own your own home!

It is recommended that you do not become pregnant within 3 years of cancer treatment: at least one year for your body to recover and your toxicity levels to return to normal, and another two to be sure the cancer truly is gone. Recurrence is more likely within the first three years and further treatment will endanger and harm a foetus. Another three years takes me to 40. IVF is only covered by the NHS till 41. And then I question the ethics of becoming a first-time mum over 40 and the risk that entails. I know there are hundreds of happy stories out there, but there are also hundreds of less happy stories. And again, my luck to date has not been that great, so please forgive me for thinking this way.

And this, of course, makes me think again about the other ‘what ifs’ my future holds. Fictional and imagined meetings with my oncologist play out continuously in my mind: where he tells me that my treatment has been unsuccessful; that there are new tumours in my bowel, and this time also in my lungs. I feel that lurch in my guts and weight in my chest that I felt back in September when I first heard that word ‘cancer’, now, just as strongly as I did then. And that’s because back then, my gut told me that something was wrong. And sometimes, my gut tells me the same thing now. For some reason my brain refuses to play out that same meeting with a positive ending.

I’ve listened to a lot of cancer ‘survivor’ stories – I’m not sure how I feel about the term ‘survivor’ but we’ll use it for now. PTSD is a common by product – often developing months, even years, after a patient has been declared NED (no evidence of disease). And I wonder to myself, listening to their stories, feeling the fear in my own chest, if I’ll ever trust my body again.

I am on a cancer support Whatsapp group for younger people (20s and 30s) managed by Trekstock. Sometimes it’s a really positive tool – we can ask questions, share experiences, get advice from people who have already experienced what we have – and other times it sends me into panic. Last Friday’s topic was fear of recurrence – discussion topics develop very organically, based on what we choose to post about at any given moment. This particular topic was triggered by someone sharing their recent discovery that their breast cancer had travelled to their lungs. Initial diagnosis was Stage 2 with one involved lymph node: she was diagnosed in February 2019, had chemo, radiotherapy, surgery and preventative chemo. Despite this, a node appeared in her lung in May 2020.

The negative side to this was that her story sent my mind into overdrive – I am Stage 3, 14 involved lymph nodes. If someone can go from stage 2 to Stage 4 just like that, surely that makes Stage 3 to 4 even more likely?

The positive side to this was that I learnt that day just how endemic fear of recurrence is within the cancer community, especially amongst younger people who face a very possible long future of living with this panic and trauma. One of the group’s members told us of a course she took that focussed around how to deal with this fear. I think I will look into it…I haven’t yet…but I will. She wrote passionately about how she couldn’t bear to think that she might worry about her cancer coming back forever – she is only 28 and worries that if she doesn’t learn to control these thoughts now, she will have wasted her life. I understand this completely – but it seems impossible right now, that I will ever get to a place where that worry is controlled.

Other recent discussion topics have surrounded the impact cancer has had on other ‘normal’ things that non-cancer people take for granted (just as I used to), like buying houses or taking overseas holidays. Many in my support group have struggled to have mortgages approved as they are unable to get life insurance anymore; many found that companies would not offer them travel insurance -all because they have had cancer; even if they have been NED for many years.

Today’s topic surrounds working and cancer – we are all epic over thinkers it would appear. Many people have talked of how they struggled to get back to work, or settle in on their return. They felt lost and alone. There seemed to be a common experience amongst the group of returning to face the overwhelming attitude that ‘you’re back now, so get on with it’. The reality of living with and beyond cancer makes this difficult.

This topic came almost spookily at the right (or wrong) time for me as I approach my final cycle and begin to make plans to return to work myself after nearly a year on sick leave. And I am scared. And nervous. And a little lost.

In the introduction to my blog I wrote about how at time of diagnosis I had just started working at a sixth form college, teaching my first A Level Literature class – a long term career goal having taught GCSE English re-sits in FE colleges for 10 years.

I had been pretty unhappy in my job prior to this point, and had been applying for all sorts of positions within and beyond education. My teaching timetable had become so monotonous and unrewarding that I was starting every week, every day with a feeling of dread – and getting through each felt like a treacherous mountain climb. I was counting down the hours till the end of the day, the days until the weekend, the weeks until a half term break: in essence, I was wishing my life away. This was making me miserable and this new job had renewed my enthusiasm and motivation.

So, really cancer came at the worst possible moment career-wise. By now, I should have a year’s A Level teaching experience under my belt –enough to add to my CV - but instead I am no further forward. My timetable for the next year has reverted back to a full time GCSE re-sit teaching. I have lost my A Level hours completely with another whole year to wait before I will get the chance to build that skill set and thus improve my CV once more. In relation to my career, cancer has stolen 2 years from me so far – and bearing in mind that I am yet to take any maternity leave, it is easy to see why I am so scared of being left behind.

But luckily, as I’ve written before, cancer has taught me the importance of making the most of life. So I will reset, recompose and restart. Somehow. I refuse to go back to that same place where I was counting down the hours, days and weeks and wishing my life away. Because time is precious and should be savoured, not hurried! At the very least, I now refuse to feel guilty about taking all the holiday I am owed before returning!

Making the most of every moment when I am well: Mountain Biking with my Steve in North Norfolk.

I am also prepared to make big changes if my scan results in October bring any unwanted information.

And it is not just the impact these results might have on the rest of my life that worries me, but the impact Covid might have on them too. The cancer community is reeling from the huge numbers of scans, treatments and operations that have been cancelled and deferred already. And because of this, lives have been lost. Young lives.

From left: Lauren Mahon aka 'GirlvsCancer', Deborah James aka 'Bowelbabe', and Steve Bland aka 'mr_blandy' and widow of broadcaster Rachel Bland aka 'bigclittleme', founder of the successful 'You Me and the Big C' podcast who died from breast cancer in 2018.

Panorama recently broadcast Britain’s Cancer Crisis, hosted by Stage 4 ‘bowlie’, Deborah James aka ‘Bowelbabe’. The documentary explored the growing crisis in cancer care that was triggered by Covid. It also told the story of Kelly Smith, or ‘kickasskel’ as she’s known within the virtual cancer world. Kelly, initially diagnosed with Stage 4 bowel cancer in her 20s, had her treatment ‘paused’ for 12 weeks due to the pressure caused by Covid-19. She didn’t even make it to six weeks: left unchecked, the disease quickly took hold and her cancer reached a point where, after years of holding it back successfully, became untreatable. Kelly was convinced that if her treatment hadn’t been paused, her story would have been very different – her cancer would never had been able to gain such a stronghold and she would have had many more years to live life to the fullest, bringing up her young son. Kelly passed away far earlier than she should have, aged just 31. Her family are now campaigning hard to have cancer services resumed so that other people may be saved their heartbreak, in the hope that her death will not be in vain. Please help them by signing their petition here, bearing in mind that experts are warning that as many as 35,000 cancer patients could die unnecessarily as a result of the impact of the pandemic on cancer services.

Kelly Smith, aka 'Kickasskel' with her young son.

Now, I appreciate that my story is very different to Kelly’s. I am currently stage 3, not stage 4. My treatment has not been paused or affected so far. The chance of my treatment leaving me NED is exponentially higher than Kelly’s ever was – a factor that made my treatment a higher priority sadly. But despite these differences, her story still fills me with fear, especially now that the end of my scheduled treatment is so close. Because what if it hasn’t worked? What if I do have new tumours that need further operations? How long might I have to wait for those? What treatment options would I have to face next, without the private health cover that many incurable and advanced cancer patients seem to need in order to stay alive?

I don’t want to die.

Now, my Steve would argue that these are all unknowns and not even worth thinking about until we have to. But my brain just doesn’t work like that. I’m a worrier, a fatalist, a catastrophiser. And maybe there’s some value in preparing for the worst – it hasn’t done me so badly thus far. This is a reality that I have to be prepared for on some level, maybe not this scan, but maybe the next one. Or the one after that. Or even in ten years’ time. It will always be there.

Regardless of all of this - all these worries and fears and niggles about my career, my fertility, my home owning abilities and eligibility for life and travel insurance, my own death - I am determined to enjoy the weeks post cycle 8, where I will be free, for a time: free from chemo and free from the burden of knowing – either way – the effectiveness of my treatment so far. Even if it’s just for a little while.

Here I am, feeling pretty pleased with myself, after finishing the 9 week Couch to 5k programme during chemo in just 16 weeks!