A few days after speaking to my GP and before the hospital referral process could kick in, both I and one of my lungs collapsed. I was lucky to have my friend with me at the time, otherwise, I would not now be here writing this.
I was admitted to hospital. Worryingly, via the resuscitation suite.
Once on the ward, they drained a massive build-up of fluid from around my heart and lungs, by the simple expedient of sticking a needle through my back and into the fluid. Not exactly comfortable, but it gave me instant relief from the months of back pain.
They also did a needle biopsy in the CT scanner. The needle is not precisely fine, they do not put you to sleep and if they have to wriggle the needle once inserted into the lung, it does hurt like hell. I was diagnosed with incurable lung cancer, ‘stage four plus’. On all the available scales for grading and staging cancer, I scored the worst. It was at this point I signed the DNR, so that should my heart stop, they will not use CPR or waste an intensive care bed to try to bring me back when my heart can no longer cope.
Still officially a carer and employed, I was signed off work for two months. Another two would be added later… with the unlikelihood of ever returning to my job making itself felt. My options were limited. Radiotherapy and surgery were not possible, which left only chemotherapy and immunotherapy with which to attempt palliative treatment in the hope of extending life of a decent quality.
Chemotherapy has been around for a while, but immunotherapy is relatively new. It does not work for everyone. The only thing you can predict with any certainty is that the side effects are going to be as unpleasant as, and very similar to, chemotherapy. They include, but are not limited to nausea, vomiting, sleeplessness, oedema (swelling), mood changes, hair and nail loss, digestive problems, liver and kidney damage… the list goes on. It is extensive and appalling. You need a really good reason to put yourself and your loved ones through that.
Because of the COVID-19 situation, I was categorically told at the time, both in writing and over the phone, that I could have no-one with me for the appointment when I was to be told all this; no hand to hold, no shoulder, no moral support. I was later told that this was wrong, that I could have had someone there… but as with much of this COVID debacle, by then, it was too late. Once passed, you do not get these opportunities back.
So, alone with the oncologist, the nurse and more information than a stunned mind can process at once, I took the difficult decision to go for the chemo/immunotherapy combo. This entailed having intravenous drugs dripped into my bloodstream on three consecutive days every three weeks… three drugs on day one and another dose of each chemo drug on subsequent days. These drugs are so toxic that only the fact that they can conquer cancer makes them acceptable. Veins which had always cooperated until this point ran away and hid, so each session also ended up needing several attempts at inserting the cannula into a vein, and arms that were black, blue and swollen. My stomach was little better, as each cycle of chemo sessions was followed by seven nights of giving myself injections in the belly. Thankfully, I have no fear of needles… just of runaway veins…
The first month wasn’t too bad, aside from the inability to sleep and the constipation caused by the drugs which caused both much merriment and severe distress. I hadn’t been sleeping well for months because of the pain I had put down to my back. But the side effects are cumulative and towards the latter end of the treatment, the ‘good’ days between treatment cycles were few and far between.
By this time, I was so grossly swollen and breathless that I was sent to Emergency for further scans and tests to make sure I did not have blood clots, blocked veins in my lungs or some other unforeseen horror. Nothing was found and it seems I just have to live with looking like a fat, over-inflated caricature of myself, with mole-like eyes that occasionally disappear, a reddened face… and completely bald too, apart from the ‘Tintin-esque’ fringe that seems to have survived so far.
It is all very depressing. And, because, behind the masks it is less easy to read people by the normal cues, I am now judged as a fat old woman and treated accordingly… and you would be surprised at how much of a difference that makes to people’s attitude towards you. That too is depressing. Of course, as I have what is officially classed as ‘breathing difficulties’, I officially don’t need to wear a mask… but try that and see how you are treated then… That is just way too depressing.
Just days before Christmas, I finished the chemo, although the immunotherapy (and, I fear, the injections) will probably go on for the rest of my life. I had tried to maintain good humour, but I often failed… Being exhausted and yet unable to sleep made it worse and I got snappy, I cried a lot in private, set off by the smallest of things, and was desperate for a hug. Then would come the days when I would catch up, like it or not, and sleep for eighteen hours…usually on the sofa and with the door open for the dog.
Sometimes, I really wondered if I had done the right thing. It was unlikely I would have made it till Christmas without the chemo. But, maybe it would have been better to just slip away quietly… die quickly and solve the problems for everyone… except those you love. Or maybe, I thought with more hope, after Christmas, I would be able to spend time with friends and family, get out into the land, just have bought enough time to compensate for the three months lost to COVID restrictions.
Because love was the reason I was doing all this. Not time.
Yes, another decade would be nice. Okay, even a couple of years would be good… but I knew that was unlikely to happen. Only one in five people with this type of cancer (SCLC) who are diagnosed at this stage will live for a whole year after diagnosis. I had done plenty of research.
We have been in a similar situation before too. My late partner, who my sons had thought of as a father, had died of cancer. Even so, his death at that point was unexpected and I had only been able to watch my sons suffer as they grieved.
I just wanted enough time to be able to spend with the people I love… to play with my granddaughters, to be with my sons and my partner, to hug friends and family and make memories. And maybe, being able to spend that quality time in love and laughter together, we could all grow used to the idea, at least a little, and it might make my passing just a touch easier for them with every temporary ‘goodbye’ and ‘see you later’.
At least, that was the idea…
(To be concluded tomorrow)