In my post entitled ‘On living and dying‘ in March this year, I wrote about what living meant for me at that time. The other side of the Living coin is of course, Dying. They’re completely connected and integrated for me and I feel okay about both. At the time I wrote the earlier piece, I couldn’t find the right words to say more about dying and I felt frustrated at not being able to express my thoughts and feelings clearly. I said I’d come back to it at a later point, so here we are. Let’s see if I can do it justice this time. I don’t doubt that I’ll come back to it a few more times before I’m done.
When I was first diagnosed and I asked how long I might have, I was told 5-10 years. In my head, I lengthened this figure to 10-15 years, mostly due to denial. Not a denial of the diagnosis, but of the real meaning of an early death. With the uplifting effect of the steroids (not to be discounted at all!), I felt very positive – ten years seemed a decent length of time… long enough to have the time to do the things I wanted to do and short enough to motivate me to truly live, to prioritise and cut the crap. Yes, I now know that the Pollyanna effect was all steroid-induced.
Additionally, but this came later, it seemed possible that new treatment, if not a cure, might be discovered in the intervening years. After my auto transplant, Prof told me they have a patient who is 15 years post-transplant and living well, who I think is the same woman as my friend’s mother, who lives only a couple of miles away from me. I also recently heard of someone who is 17 years on, so it is a real possibility, but these cases are the minority.
However, the relapse in December rocked that sense of possibility for me. It prematurely ended that first period of remission, taking away some possible years of living, and ending one layer of treatment. Actually, it took away another layer of treatment, as the option of undergoing a second auto transplant, for which they had saved some of the stem cells they collected in June last year, is no longer viable. There is no point doing a second auto transplant when the first one failed.
I had a similar sense of loss of options when my father died some years ago. I didn’t have a strong feeling of grief as we were not close, but I remember the feeling of being half orphaned, of moving into the next generational level – the one that will be the next to die, like being next in the line of fire. I felt I had taken a step closer to my own mortality. But I really didn’t expect it to come quite so soon.
After the initial shock reactions to the diagnosis, I took on board a shortened life expectancy and accepted it, even, dare I say it, welcomed it. I considered older age as not having much to recommend it… frailty, illness, pain, disability or lack of mobility, dependency on carers whether paid strangers or family, fatigue, loss of energy, loss of taste, loss of desire, jadedness and boredom, loneliness, state pension and savings dwindling or having the money but not the energy or desire to do the things you thought you’d do in retirement, seeing one’s friends die, and so on. Like many, I have probably been influenced by our youth-obsessed culture, but I also have some elderly family, friends and neighbours and have seen how hard it can be, even for the most upbeat and vigorous folk.
So, I figured that if I die around 60, I could avoid those negative aspects of old age. When I’ve dared to say this out loud, people have reminded me that I may not feel quite the same when death is looming. I’ll probably be begging for just a few more months, days, minutes.
I don’t feel scared of death itself, as I believe it will be like a very deep sleep (without the snoring 🙂 ). No awareness, no dreams, no tossing and turning and no waking up. The main emotion I feel about death is sadness; it’s the end of all possibilities. Even if one doesn’t grasp all the opportunities available, even if one doesn’t live to the fullest, the choice is still there… there is still the possibility that one might, there is still the chance to fantasise or dream of things one might want to do. There is still the chance to see and feel another sunny day, another terrifying thunder storm, experience another kiss or smile or tear, learn something new, be surprised, feel and express emotions, or simply appreciate the smallest, most ordinary things, like a dandelion daring to poke through the pavement. Once death arrives, those options are gone.
So, in my denial, I figured I would live till whatever young age and then die, and I felt okay with that. I didn’t think much about the actuality of dying, or the process leading up to my death. But it came to me quite recently, like an unpleasant knock on the head, the realisation that I probably won’t be exempt from all those unpleasant aspects of old age… just that I will most likely experience them at a younger age. D’oh!
This realisation saddens and frightens me – yes, it’s the dying bit I’m scared of. But as one fellow MM blogger, Lonnie Nesseler wrote: “Fear often leads to bad decisions: its acid eats away one’s quality of life.” (Sadly Lonnie died earlier this year, after living with myeloma for almost 15 years). So most of the time, I have to live as most people do, with a degree of denial, but also a bigger impetus to sieze the day. If I keep myself constantly aware of the proximity of dying, I may as well be dead already. Nonetheless, the insistence on making the most of each day, each moment can actually be quite stressful. What irony!
I already have the sadness of seeing people die – people I’ve come to know, people who’ve become friends or simply clinic or blog/internet acquaintances. Some much younger than me, some with more complex issues, while one in particular has quite shocked me. Paul seemed to be doing well after his auto transplant but died from an infection that his body couldn’t fight due to a compromised immune system. He was only 40 and only diagnosed in August last year. He enjoyed walking, so he was quite fit too. This could happen to any of us at any time; this is our reality.
As for frailty, illness, pain, disability or lack of mobility, dependency on carers, fatigue, loss of energy and taste – I’ve been there already and I dare say I will again.
So far, apart from when I’ve been at my lowest with depression, I’ve not experienced a loss of desire, nor any more boredom, jadedness or loneliness than before. And I am very thankful that up till now I have been able to claim welfare benefits and know that I have financial support from my family if necessary. But these are the possibilities I may face along the way, especially I suspect towards the end. I’ll let you know on that one.
But no matter how long I may have, whether I have ten years or two, the disease will almost certainly return and it is highly unlikely that I will see my 70th birthday. That is a reality that for the most part I accept and can face honestly. The difficult bits are what happens in between – the further treatments, the gradual or sudden deterioration, and the waiting.
I find it unsettling and upsetting when people try to talk me out of the idea that I probably will only have 10-15 years. When someone tells me I could have much longer, I wonder whether they are trying to make themselves feel better. It doesn’t make me feel better; it actually makes me feel quite wobbly. It raises false expectations. And no, I don’t think I’m being overly morbid. I think I’d rather have an expectation of less, make the most of a short time and maybe be delighted to have it over-reached, than be encouraged to think of a long future ahead only to be dashed down by an unexpected early relapse. So please hold back the cheery glib comments about living longer than I can reasonably expect and think how it might feel from this side.
Undoubtedly, whenever the next relapse comes, I will feel dashed down, devastated and fearful. A sense of another layer being stripped away, but it also removes the stressful element of waiting for the relapse news. As time goes on, clinic appointments will reduce till, if I get there, I will only be having yearly checks. Given that for 18 months I’ve felt that the hospital is like my second home – a bit like the bar in Cheers – “a place where everybody knows your name”, going so infrequently will probably feel quite strange. And I imagine they may start to take on a level of anxiety, which I don’t currently experience. I am sure that this question will be flashing like neon in my head: will this be the blood test that shows the myeloma has come back? I have no idea if this feeling will get stronger as time goes on, or if I will be able to relax year on year…?
This is such a strange journey – full of surprises and unexpected taboos – not only about genital warts! So, please let me go through it the way that seems to work for me and which I will change when it no longer works for me. Please don’t try to persuade me of a long life, which has a high probability of not coming to pass.
In the Jewish tradition, we say to someone grieving after a death “I wish you long life!” I think I prefer to be wished a good, creative, loving, appreciative life over a long one.