Earlier this week I had the absolute pleasure of attending #innopints4 in Totnes. This was the first night off, and night out, I’d had in some time. During the evening I made a throw away comment to @phillirose about not being able to commit to meeting up on a particular day, because I wasn’t sure of my plans for the next while. Later on that evening when checking out how people had found it I noticed this tweet from @oerthepond
I was a bit confused, we were sat at the same table in the same pub and Kathryn hadn’t asked what I meant by the comment, but maybe the opportunity didn’t arise or she didn’t feel comfortable to. I read a certain incredulous tone in that tweet, maybe it was just the hmmm, maybe it was the question mark, maybe it wasn’t there at all, but I thought I’d use this post as an opportunity to explain further.
I can’t actually remember the last time I confidently planned something and didn’t allow a thought to flash into my mind that it might not happen for some reason. I can’t remember the last time I decided I would go away for a weekend or book a holiday or arrange a night out, without considering the consequences for other people if I had to bail at the last minute. My Dad has been living with cancer for four years and ten months now. He has been told he has months to live on five occasions, he has had a terminal diagnosis for the past couple of months and has been receiving palliative chemotherapy since April, the absolute last treatment they can give him to try and keep him alive, or dying well. This week his consultant agreed to continue his chemo for two more courses (6 weeks), his scan results suggest that it seems to be stopping his tumour from bleeding as much and none of them have got any larger, it also discovered a blood clot that they’d normally treat with warfarin but can’t given his other meds/blood loss they’ll just leave it and hope it doesn’t cause any problems. The hope is that he will live long enough to meet his second grandchild that my sister is expecting in six weeks. Knowing what my Dad is like with a target he may even manage that, I hope for him he does, but I wouldn’t be betting on it myself.
In an old post I tried to explain the cancer rollercoaster:
There are so many unknowns and so little certainty, the immediate reflection is that it can feel overwhelming at times. It’s like a constant faulty rollercoaster ride that you can’t get off, occasionally it slows, in fact sometimes it stops just long enough for you to feel rational/balanced/normal again then it’s like it flies off again, throwing any sense of equilibrium out the side of the ride with you…Then of course there is a continual, constant balancing act of making the right call around priorities in life. The hard thing about knowing someone you love is terminally ill is that it provides a lens of constant reflection, every decision (if you allow it) could take on a significance of monumental proportions. Well maybe I’m being a little dramatic, perhaps not every decision, cocopops or muesli for breakfast shouldn’t have a massive effect, but knowing whether to visit tonight or wait until tomorrow could.
Of late life has got even more complicated, my 94 year old grandfather is in hospital. Mogs has been ill, insignificant an issue you might think, but trust me trying to put ear drops in a cat single handedly, or being around regularly to give him five pills twice a day, alongside the five trips to the vet, has been a bit of a pressure. Work is work, which means it is invariably busy and there are never enough hours in the day. In addition to that Dad’s health is very up and down, he has had almost as many emergency admissions since he started palliative chemo as he has routine trips to get the chemo, he also still has to have regular blood transfusions and his picc line flushing.
The reality is that I do feel like most of the time I’m living on quicksand. It seems that the minute I take one step forward, something more happens that drags me down or back. I am beginning to feel exhausted with the uncertainty of life, and worse still I’m starting to feel it rubbing off on other people in my life, rarely in a helpful manner. It is incredibly debilitating not being able to plan or consider a future longer than a few hours away. The simple fact is that I can not plan more than one day at a time, sometimes more than a couple hours at a time – of course life isn’t that simple to live in such a way, so I’m left with one of two options, plan and risk the plan being disrupted, or don’t plan and don’t worry about letting anyone down. I find myself juggling those strategies all the time, at work, in my life, with friends, and certainly I don’t really feel like I have a life blueprint for anything past the immediate future.
What that means in a literal fashion is that I’m wary of making long term commitments, I’m increasingly wary of making short term commitments too. I’m meant to be at my OU Residential School next week and only booked my train tickets today – sacrificing affordable travel for the security of not booking tickets I then wouldn’t get to use. I have no holidays planned, although I have got a weekend planned in London in a couple weeks thanks to the awesomeness of FB who organised it, and I do have two days booked off work for one of my closest friend’s weddings in August. That said I’m sat looking at the hen night invite and toying with going or not – I don’t want to let them down, I don’t want to promise to go and then have to cancel at the last minute, that said it could be the dressing up as a flight attendant that is putting me off committing to that decision too!
Someone said to me today that you couldn’t make my life up at the moment, if you wrote it as a script for a soap opera you’d be told it was too dramatic and too unrealistic, no-one would believe it would happen like this. What that means of course is that when I make a commitment I have to trust that the people I’m making it with don’t mind if I cancel, or that they have an understanding of the pressure that I am (and by association some of the closest people to me are) under all the time. The great thing about #innopints is that @martinhowitt @carlhaggerty @fergusbisset @phillirose and @markbigsw are all such brilliantly generous and empathic people that while the last thing in the world I’d have wanted to do was cancel, I felt safe that they’d understand if I had to.
Support like that isn’t always easy to come by, this week they were my lifeline in the quicksand. Thank you lovely people.