What’s life after chemo going to be like? Hang on to your pelvic floor and get ready for what the future might hold.
You meet all sorts of people at all sorts of stages of treatment at chemo clinic. There is a man who is there every time I go, and seems to spend all day every day hooked up to one drip or another. One woman I met had been and gone, seemingly forever, before the IV line had even been inserted into my recalcitrant vein. Last time I was there an elderly gentlemen confided in me that he’d been ‘coming for eight years’. Chemo clinic can be encouraging and depressing in equal measure. Once treatment’s done, will you sail off to enjoy many cancer-free years, or will you have a recurrence in a few months’ time? Of course one tries to banish negative thoughts, particularly since people are queueing up to tell you how ‘positive thinking’ has untold health benefits. Realistically you can’t erase thoughts but there is a balance to be struck: an acceptance that cancer and thoughts of it are likely to be the subtext of your life now you’ve had it. It’s a bit like the death of someone you love: you’re never going to forget that person but as time passes the pain diminishes and the joy of having had that person in your life resurfaces. I’m sort of hoping that’s what will happen for me post cancer treatment. Don’t get me wrong, I’ve not lost my zest for life – in fact my appreciation of it has probably increased – but cancer has certainly been a dominant presence since my bowel cancer diagnosis in October 2015.
Three things started me thinking about how life will be when I finish chemotherapy. First, my final cycle of chemo (that’s number eight of eight) starts with an IV infusion (infusion makes it sound like a nice cup of tea; it isn’t) this Thursday (21st July). Woo hoo! Second, I found myself asking my husband ‘do you think I’ll ever feel like me again?’ I meant mentally as well as physically: chemo and cancer do such weird things to your sense of self and your perceptions of your body. Finally, an article earlier this month by a fab young woman, Laura Regan. Laura, a former head girl of a local school here in Berwick-upon-Tweed, was diagnosed with cancer as she started her degree. You can read Laura’s words in Huffington Post here and check out her blog here. In looking towards life after cancer treatment, I have come up with five things that may help with the uneasy transition from cancer patient to (I hope) post-cancer patient.
- Face the fact that there will be fear: while you’re in treatment, no matter that it’s pretty ghastly, you have a strong connection to the medical profession: you’re like a work in progress and you feel people are keeping an eye on you. But I remember the words the oncologist said as I started chemo: ‘Once you’ve finished with us, we throw you back to surgical’. I’m guessing that means as long as my post-chemo scan is clear, I become a name on oncology’s books rather than a patient. I’ve slightly mitigated against this by agreeing to go on to the Add-Aspirin clinical trial. This means I keep contact with the oncology unit for five years and, hopefully, contribute to better treatment for future cancer patients. Meanwhile the surgical team will no doubt be calling me in for regular check-ups. Groan. That’s more cameras up the bottom, and more drinking ghastly ‘emptying’ fluids. These drinks make you feel like Dumbledore in “Harry Potter and the Half-Blood Prince” when he drinks the Potion of Despair. But, hey, it’s to ensure you’re well, so suck it up. Literally.
- Start doing things that you used to do but put on hold: this is a tough one. I am fortunate because I have no financial worries and I have a partner who has been superb at supporting me and gentling me through. Many people have to try to (or choose to) slog on: working, looking after small children on their own etc. Back in November, I stepped down from all the committees I was on, stopped writing my column for the local paper and the various other bits and bobs of writing and reviewing that I’d been doing, and I pretty much stopped socialising (this was practical, too, since when you’re on chemo there’s a constant fear of getting infections and viruses which will set you and your treatment back). I continued trying to run the home and be a mum to my teenager and I opted to stick with my Open University module which I’d just started. I am so glad I did: what a sense of achievement to successfully complete that module! But I realise that a lot of the time during this year I have been, not filling in time exactly, but sort of waiting. Waiting to see what happens, waiting to see how I feel after treatments, waiting for inspiration, for energy… This has taken the form of activities such as little sewing projects, pottering in the garden (you should see my lettuces!), and volunteering one afternoon a week in the fantastic HospiceCare Northumberland Wear & Care shop (something I intend to continue doing). Then it dawned on me how hard it was going to be to re-enter the real world. So, despite exhaustion and an overwhelming desire to sit on the sofa watching Netflix and eating crisps, I’ve started committing to things. I’ve been writing a few pieces for online local paper Voice of the North; I shall be blogging for the Berwick Literary Festival in October; I’ve gone out to a party or two and fought the urge to antibac my hands and cheeks every time someone moves in for a hug – at least until they’ve moved on!
- Consider how you’ll deal with body changes: I’ve put on weight since I started chemo: a blend of steroids and comfort eating. Food has always been a great love and in many ways I’ve been fortunate to keep my appetite and not to suffer greatly from nausea. In fact, cooking delicious meals has been another coping mechanism for me. I’ve tried to keep walking and getting out in the fresh air (see gardening above) but jogging, tennis and the gym have felt a step too far, and I’m not a big fan of swimming. So, like naughty twins at bedtime, my fitness and waistline have disappeared. Considering all that’s happened in the last year, these seem trivial things to get upset about – but that’s real life. Of course there are other things to deal with. I am truly grateful that my drugs mean no hair loss, but I do have sore hands and feet and weird neurological side effects which may or may not completely go. Also, I’m a woman of a certain age. Even before treatment my pelvic floor was no longer the ebullient trampoline of my youth. However, despite rigorous pelvic floor exercises, I discovered the elastic was even saggier than I thought. At a friend’s party, we rather wonderfully all traipsed onto the beach to play rounders at around 9pm or so. Girls v boys. I am notoriously competitive: we had to win. I whacked the ball and set off to achieve our first rounder. All I can say is thank God for long skirts and sand! I am now even more focused on pelvic floor exercises. We did win, though.
- Plan (or at least talk about planning) something special: a holiday, a day out, a party, lunch or a night out, a special walk or visit to relatives, time with your partner, your first bike ride. Even though you want to hold your breath and wait to make sure you’re all clear, it’s fun to plan and to look ahead and, whatever the news or outcome post treatment, some of the things you plan will probably be both possible and enjoyable. I decided I would try a gentle knock of tennis during my seventh cycle. I was terrified that it would be too much. In fact, it was wonderful and is now one less thing to wonder if I’ll be able to enjoy again. Nudging myself to reconnect to certain activities even before the end of treatment has been really positive.
- Remember how having cancer made you want to let everyone know how much you love them and why? Keep telling them: I also find myself saying pretty much every morning: ‘Hey, I’m still here! Thank you God!’.
You should definitely go back to/continue writing – so easy to read (I have said that to you before) and please make some vocal appearances on Lionheart….would love to have you back on our/my show.
Re the pelvic floor….post twins I went back to netball without realizing ‘things had changed’ and wet myself during the ‘star jump’ warm up!! Post 50 I resorted to tena lady and then wen I was on to super extra large found a good ‘physio’ for up there!!!! Pretty steady now ….just required a bit of re-training….I’m ‘doing it’ as I write this.
Keep that chin up and take care Mrs K
You do make me laugh Yvonne! I can’t wait to come back to Lionheart. Thanks for the kind words. Keep doing the pelvic press ups and see you soon! Love Jax x
Tearing up and laughing, and by the way – re No 5 and our recent conversation I LOVE YOU and I do thank g-d you’re still here!!!! xxx
STEPHANIE CLEAK07967 637979
Date: Tue, 19 Jul 2016 15:04:07 +0000 To: email@example.com
Love you too, Steph! xxx