An Unexpected Entry
The Cancer Diary continues
ON THE DAY
When all the faces
all my blue skies
turn to grey.
When hope alone
is not enough,
dreams and wishes
When all the talking
has been done,
all the races
lost… or won.
When there is nothing
left to do,
and I am there
to stand by you.
Will you be there
to help me
Will you be there
I need you.
Well this is weird…. As you will have read in my last entry I was expecting to be dead and gone by now. I should add that all my medical team also think I should be. That I’m not, is something of an enigma. Perhaps I should explain how we reached here.
3rd July 2017
After leaving Derriford Hospital for St.Lukes Hospice, we were shown to a beautiful private room with en suite. Lesley was told she could stay overnight, also our dog was offered the same facilities. The staff were beyond helpful. Clearly we were in a state of shock, this had all happened so quickly. Our family were playing catch up, it was tears all around.
Several medical things were going on, I was wired up to a syringe driver pumping me full of various drugs and pain killers to keep me calm. It became clear that there was to be no going back, I was here to die; not to be made well. I was no longer being treated for my cancer; no longer a patient.
I found this very hard to take. Having always been a fighter I wanted to hear that there were options, not that they had all run out. Sadly this was the information I was given. We settled in to a watch and wait routine….they all watched me and I waited.
I was able to walk around with the aid of a stick or Lesley; the gardens were beautiful with sea views, designated areas to have some quiet time. There was a well-equipped café along with rooms you could just sit in and chat with friends. Clearly if you had to die somewhere this wasn’t a bad place; I just wasn’t ready to.
Lots of stuff wasn’t happening. No solids by mouth, water and soft drinks only. They were going to starve me to death as well. Lesley quickly asked about soup, could they blend soup down….they could. Could I eat ice cream, custard, pulped fruit and sorbets….yes. Things started to look up, small victories can mean a lot in these circumstances. A few days went by and I was settling in to the place, I just didn’t feel any different. I wasn’t pooing, I put that down to the diet; or lack of one. They said my tubes were all blocked by the cancer, and nothing but small amounts of liquid was getting through.
Lesley was staying with the dog twenty four hours a day now, lots of visitors…some more welcome than others. The stress was overwhelming at times, having to explain to well-meaning friends and extended family. Lesley took the brunt of most of this, I wasn’t capable due to the drugs and a general lack of understanding; I think I was getting a bit bad tempered. After a while they were restricted to phone calls only. The girls and their partners, along with my grandchildren had unlimited access as you would expect, this was very hard for me; they were the love of my life.
This routine carried on day after day, the nurses came and went filling up my syringe driver, checking I was comfortable etc. On the 10th July we had a visit from the doctors, I was asked to move into a ward; give up my lovely room…give up Lesley and the dog staying with me….Why?
It turns out I wasn’t dying quick enough, in fact I had stopped dying at all. I had stabilised according to them. My lovely room was wanted for someone else to die in.
As you may have guessed this was music to our ears, we packed up immediately, buggered off home within an hour with the promise of a care plan the following day HaHa! It was like a prison break despite the surroundings. To be stood outside our house, our front door was so emotional. I hadn’t bargained for the feelings sweeping through me. I wept openly, I almost collapsed. I had never expected to see it again. For Lesley it must have been worse, I was too far out of it to see that at the time.
As promised the following day Devon Doctors turned up to start the care package going. It was basically the same routine as at the Hospice….but I was home. The nurses were wonderful, came every day at 11am to do the driver thing, asked questions as to how I was feeling in myself; I was feeling good to be honest. There were injections necessary as I was still on ‘no solids’; tablets were excluded as well. Then the poo pains started again.
It felt as if I was completely blocked with constipation. I decided to literally ‘take matters into my own hands’. On went the rubber glove… and I did the nasty. I’ll say no more other than I haven’t had a problem since then. After this things started to improve.
The Devon Doctors Nurses were our contact with treatment, they were truly brilliant, always had a great sense of humour; nothing was too much trouble for them. All were working long hours for shit money, true dedication. We were beginning to wonder how long this was going to carry on, after all I was supposed to only last a few weeks at the most. The nurses didn’t have that kind of information; if they did they weren’t saying. A phone call from my consultant arrived asking would I be able to meet with another consultant, he would come to our house on the 26th July…talk things through. Correct me if I’m wrong, but you can’t even get a G.P. to do house calls….a consultant? Oh well send him around, maybe learn something.
The day arrived and sure enough so did the consultant. He was a nice guy, a little embarrassed I think at first; probably not used to people’s front rooms…or someone like me HaHa! We had a full and frank discussion as we tried to figure out what had happened; in the end we were not really any wiser; for whatever reason I had stopped dying…if only for the time being. He suggested that maybe we should reduce the drugs intake, cut back on the pain relief and get me off the syringe driver. I liked this man. Devon Doctors came and did just that, it was fantastic to be able to sleep and shower without worrying about the alarm going off if I pulled it. I’d been carrying it around in a home-made ‘Man Bag’; I looked a complete twat. Without the need for the driver we didn’t need the nurses either; this was a little scary, but it was also another victory. Another meeting was arranged for a couple of weeks’ time; he was off on his hols…see you when you get back Doctor.
I was due to visit my regular consultant Sarah on the 2nd August at the hospital; this was bound to be a bit traumatic. We hadn’t really talked since she told me I was going to die. I owe this lady so much, and I’m sure she had as many reservations about this meeting as I did. I’ll spare us all the details, just to say a big hug was called for at the end. Apparently I’m a ‘one off’.
After all this doctor stuff it was time to say bugger it… get back to trying to live any life I had left to the full; so we did. We started going out again, not just dog walks, but pubs, friend’s houses. Even went to a local music festival, never for too long, just enough to get a little action. I get tired easy, I walk with a stick. My walks are planned with pit stops for rest and comfort breaks; so what… I’m out there. I’ve started driving again, been up on Dartmoor, down along our coast roads. It’s truly incredible. We’re not stupid people, we know it’s not gone; I’m still on terminal watch, but what the hell, I’m not going to just sit at home and wait; it will have to come and find me.
It’s been seven weeks now since that dreadful day, we are living in the now again…and loving every minute of it. I’m sure if you were to ask Lesley, she would tell a different story; I see her looking at me sometimes. I’m in awe of her ability to hold it all together. I just try and do good things to keep us up there in happy world.
I may not write anymore to this account of my cancer, I think I’ve said enough, don’t want to get boring. There is a move to get it into book form by friends and family; sounds like a plan. Best wrap this up and get on with it.
15th August 2017