Hello
I thought it was far past time for a little catch up – but where on earth to begin. I guess we go back to Christmas, which already seems a long time ago. I was in for treatment over Christmas as well as an oncology visit and, even though those of us in the thick of it already knew, it was here that the words were said aloud, ‘treatment isn’t working.’ Despite three months of weekly chemotherapy, the cancer still spreads, the cancer still grows.
Even though I knew this was the case, I find new tumours on an almost daily basis and feel the very real growth of those already present, the saying of it between me, my darling husband and oncologist just made it too real, it felt like all last bastions of hope dashed on the cruellest rocks. And I fell into a huge hole of all-encompassing grief.
When someone dies you have to say goodbye to that person. When it is you who is going to leave, you have to say goodbye to everyone. The heaviness of this is just too much and it breaks my heart on a daily basis. There is a lot of help, a lot of information and organisations out there to support people when they are about to, or have, lost someone. There is very little, if anything, to help the person it is happening to. And so, although I have a most amazing group of very close people that I know are always there for me in every way, this feels a very lonely process to be trying to learn to negotiate. Some days I feel I do okay, others, I really don’t.
On the physical side my days are now largely spent revolving around pain management and then managing the side effects of pain medications. Having been dealing with cancer for seven years now, but it previously being quite a different thing, I wasn’t prepared for how much pain would be at this stage and it has knocked me sideways a little, not least because I am somewhat spacey a lot of the time from medications.
Oh, and I’ve recently had a suspected mini stroke – you know, just to add a little more spice to things.
So there is a very brief outline of things at the moment. Hard, difficult and sad…
But I still believe there is so much good and love and joy to be found, even among the worst days.
As such, I have reprised my nature diary podcast, Swallows on the Wire. It shall be intermittent because I have had weeks where I’ve been in hospital more days than not and so keeping up with the daily entries has been impossible. But there really is something so magical about looking to the small beauty of nature that is just there for all of us, that I hope in whatever format these mini recordings can bring a little joy, for others as well as myself.*
I have found that being open about the fact that my cancer is incurable, I have often been asked my advice on life. For anyone who follows my musings you will know that I do do a lot of thinking about all sorts of things and share thoughts when I can. I have many and they will follow but today I’m going to be really boring with what I think is an important thing… peers over glasses…
‘Sort your paperwork and have the difficult conversations now.’
We all have to-do lists, whether we write them scribbled on backs of envelopes, enter them electronically on various apps or devices, make beautiful artworks of them in bullet journals or just keep a vague running commentary at the back of the brain. And they generally consist of things such as, washing, shopping, pay tax bill, call dentist etc etc.
Well, my list looks more like this: attempt to access decades old pensions to update, write a will, plan funeral, expression of wish form, DNR disclosure, get a lasting power of attorney. As you can imagine, several of these things lead on to…have those difficult discussions with those closest to you.
I cannot stress enough how much better to do all this before you need to. I wish I had so I wasn’t trying to do it at the same time as negotiating treatments, emotional fallout and exhaustion. I would rather be spending my time painting, writing or pottering in the garden than battling with pension companies asking for details I cannot remember from over twenty years ago.
As for the difficult chats well, that is something that I am having to gently, but a little more firmly, instigate. I could just make all decisions myself to be read when the time comes, but to me, it is important to know the wants and needs of my husband and family and have those things reflected in the decisions and preparations I make. But I am aware I am asking my loved ones to have to think of things they don’t want to. No one wants to think about these things but I really feel that we all need to have these conversations, however hard they are, before any situation arises where they are actually needed.
I find I am having to learn to be a bit more selfish in thinking about what I need and to try to find ways express those things. I’m not talking practical help, I am stubbornly trying to do as much as I can still, although my independence has been further thwarted by not being allowed to drive at all due to the possible mini stroke. I am talking about recognising things I need to say and want to know even if others may not feel quite ready yet.
I can only ever speak of my own experience and the things I am learning about what I need and want as we progress through this very strange time. Here is something that it seems I need to reiterate all too often: I want everyone to still be having fun, to enjoy life, to do fantastic things, go places, have experiences, laugh. And I do not want anyone to be feeling guilty about doing so. More to that I want to know about these things too. I can’t bear it when someone tells me they felt bad because they were having a good time when I am going through this. That just makes me feel awful. ‘Is that how you see me?’ Is what I want to ask, as someone who wants others to be miserable? I am not having that at all.
In the spirit of trying to be truly honest in a not much talked about situation I will tell you of one of my biggest wants right now. I can only ever speak about my own experience as I am navigating my way through things but I see so little of what I feel being talked about. I want a stake, however small, a glimpse into the futures of my closest loved ones. I won’t be here to see or join in with so much and it just adds to my grief. And so I want to hear of their plans and hopes and dreams, I want to know what holidays they will go on, whether they will move house, go travelling, whether my husband will continue growing vegetables…I want with all my heart to have just a tiny fraction of feeling like I can see them a little in the future and feel connected to them there.
So what’s the plan? Well, we plod on taking each day as it comes. I will be adding in another chemotherapy starting next week and if everyone could cross everything and have a word with their deity of choice about it actually having a positive effect, that would be simply marvellous, thank you. I will be tackling a lot of paperwork it seems and trying to write a little more frequently.
I will leave you with a word which keeps coming to me. I am not sure why yet, these things generally reveal themselves with time so maybe by the next time I write it will have made sense to me, but I keep getting called to the word, ‘softening.’ It feels important somehow. I shall let it percolate.
In the meantime I urge you all to slow, to look for the little joys, hug rather than niggle, cry when needed, laugh whenever you can. Soften.
You can listen to the first two episodes of Swallows on the Wire, a nature diary wherever you get your podcasts or click here