I am bored and scared. Sometimes I’m a bit more bored and a bit less scared and sometimes I’m a bit less bored and a bit more scared. Sometimes I’m really really bored and really really scared.
I’m bored because I’ve had enough of scans, immunotherapy, consultations with Prof; I’ve had enough of breathlessness, wheezing and chest infections (six so far this year), trying to talk to the GP and get the antibiotics and steroids I need urgently (“No, a GP call back tomorrow is not acceptable!”), I’m tired of needles, I’m tired of never knowing from day to day how I’ll be. Actually, that’s not entirely true; I know that I’ll be even more wiped out than usual in the three or four days after immunotherapy; I know that after talking with people or doing anything social in the garden I will be exhausted. I get so excited when people visit the garden but then I pay the price. It’s boring!
Lockdown has made things worse for everyone but has ensured we special and precious ‘extra vulnerable’ people are even more limited in our activities and social contacts.
And my cocktail of drugs can send me loopy. I was on a very high and slowly reducing dose of steroids for seven weeks in May and June and on occasions had intrusive and distressing thoughts and images of child and animal cruelty. I heard voices singing to me in bed. I saw faces coming out of the ceiling. I revisited questionable decisions I’d made in my life. I suffered guilt over selfish or bad or mean things I’d done in my life, including not being very nice to Debbie ONCE ……AT PRIMARY SCHOOL! But thanks to the steroids I could breathe.
I am normally a very ‘in-the-moment’ and mindful kind of person, particularly these last few years. I am not in the habit of dwelling on old stuff that can’t be changed. Let’s face it – all big decisions are questionable with the benefit of hindsight. Fortunately, I came out of this phase as the steroid dose diminished. But there are random days (two last week) with terrible headaches when I’m told that I am talking rubbish, repeating myself and forgetting what has happened two minutes ago. And weeping incessantly.
So, what am I scared of?
On 2nd June I found out that my immunotherapy was no longer working: my brain was stable but my lung tumours had grown in size and multiplied. There was new growth in my left shoulder and in one vertebra. It was a shock. Prof raised the topic of chemotherapy alongside immunotherapy.
YOU KNOW HOW I FEEL ABOUT CHEMOTHERAPY! I am scared of chemotherapy.
Prof also knows how I feel about chemotherapy. The drug he would normally recommend (Kadcyla) needed further investigation as he’d heard that it caused radionecrosis in the brains of those who’d had cyberknife radiotherapy. We met a few weeks later and he confirmed that it was contra indicated. Instead he recommended Vinorelbine. Without treatment I had ‘months’ (two? eleven?) and with vinorelbine he would consider six months a success. But then, as he keeps reminding me, I should have died last Autumn so anything could happen really.
I said I needed a few weeks to think about it and we agreed that I’d have fresh CT and MRI scans and then meet 28th July to agree the way forward.
I have spent the last three weeks trying to decide what to do.
I’m scared of what the scans might show. What if things have progressed very quickly? What if the brain tumours are growing again? There’s been no treatment for the brain since last October.
I am scared of vinorelbine. I have done lots of reading about it and Prof also arranged for me to talk to one of his patients who’d been on it for eighteen months. She described it as very ‘doable’. It is generally accepted as less toxic than many chemotherapy drugs. As with most chemotherapy regimes experiences on vinorelbine vary though: from mild stomach upsets and tiredness right through to debilitating diarrhoea and vomiting, joint and bone pain, neutropenic sepsis, blood transfusions, admission to ICU.
I’m scared of the possible side effects of vinorelbine. I’m scared of having to go through the A and E ordeal. I’m scared of being admitted to hospice or hospital with diarrhoea or neutropenia, not being able to have visitors, never coming out and dying alone.
I’m scared of possibly losing my hair for the third time.
I’m scared of not doing vinorelbine.
If I don’t do it the tumours might ‘flourish’ (Prof’s word) and I might deteriorate very quickly. Forget quality of life and bucket lists. And I will always wonder if vinorelbine might have been the one chemotherapy drug that I would have tolerated, that would have represented that elusive holy grail – shrinking cancer and life of a decent quality.
I’m scared of wearing my family out with my care. The anxiety about my treatment and its effects, my uncertain prognosis, my fluctuating wellbeing and mental health, the many hospital appointments all put a lot of pressure on everybody. At the same time my loved ones are dealing with their own stress about living through a global pandemic.
I’m scared of being a burden. It was honestly easier last Spring when we all thought I’d be gone by the end of the year. I am going slightly mad, knowing that I could die any day from Covid 19, or from chemo side effects, or just from the cancers……or I could just go on and on and on getting increasingly disabled and everyone will be fed up with me and my needs.
As I write I think I’ll give vinorelbine a try. I can always stop if it proves too awful. But I’m scared. People are always telling me that I’m ‘brave’ and ‘strong’ and ‘amazing’ which is very kind of them. But it’s not true. I’m so scared.
There are many good days when I can write and crochet and do some admin jobs and chat to people in the garden. With the Things I laugh a lot, play card and board games, go for short walks or drives (not to the hospital). And we talk. One wonderful thing to come out of this awful lockdown is that I’ve had time to talk with the Things who have been looking after me. Since the Things left home at eighteen and seventeen we haven’t had so much time together. It’s a privilege for me. Tough for them though. What great people the Things are. They’ve really stepped up and I’m so proud of them. I also thank God for my McMillan nurse who understands me, can joke with me about the darkest subjects and is a voice of reason amidst the madness.
Despite everything I’m still interested in people. I still get the giggles. I can still recite poems I learned at Primary School, much to the delight of my companions.
I’m still me.