Well, I’m on the home stretch now; the finishing line very much in sight.
Nothing is quite as expected, though. From early on I had made my wish to die at home be known but here I am in a bed in the Alexandra Unit, which provides palliative care and is the nearest thing we have in Dumfries & Galloway region to hospice provision.
Anyway, the change of plans was my choice. At home, although they would take every possible care to have the drugs I would need when the pain became more severe, I wasn’t going to have someone 24/7 with the key to the locked cabinet. I didn’t want to behave all undignified if I couldn’t get my drugs!
I was mentally preparing some funny stories to share with you (like the woman who wanted a cleaning job but not when she was a bit busy near Christmas) but it’s late and I need to take my ‘breakthrough’ morphine dose (learning the lingo!) which I’ve delayed to get this wee post out there. I’ll try to remember them – not that I’ll be seeing my house again, dirty or otherwise.
My son is home. He came down after my weekend flight and decorated the Christmas tree and made such a lovely job I realised I should have had him doing it every year! I think I issued a challenge to him and his partner to a game of Rummy. And my sister’s dog is wondering why she’s never been invited on hospital visits before now. Patients have treats hidden all over the place!
Wishing each and every one of you a happy festival time and many thanks for all your support and love.
After my last post recording my decision not to go for further cancer treatment I really did intend to post an update a bit sooner than this. I should have remembered the unpredictability of cancer and not made assumptions things would tick over just the same.
The couple of weeks before my last post were busy seeing friends, doctors and the dentist (another emergency – broken filling)! I had an online consultation with the palliative consultant and she changed some of my medication. I’d been on a combination of codeine and paracetamol to try to suppress the constant cough and it was making me feel nauseous most of the time which rather put me off eating.
The consultant prescribed morphine instead, both a tablet and a liquid form. The tablet creates a slow release background dose to provide pain relief, help the breathlessness and suppress the cough and I could take the liquid stuff when required. The pain is something fairly new; a difficult to describe sharp pain along my right shoulder.
Then, the weekend after friends we met in Pakistan thirty years ago came to visit. Usually, they would stay with us and we would never go to bed the same day we got up. This time they booked into a hotel which, although not how I wanted it to be, was incredibly thoughtful. I could come home in the afternoon to have a nap before meeting again in the evening – but my goodness did it not make me feel horribly old to be the person who needed to nap!
Other friends had, unbeknownst to me, had been plotting to arrange a flight for me in a two-seater Piper Pup plane – something I didn’t know was on my bucket list.
Wow! Despite the less than elegant scramble getting in and out of the aircraft, it was absolutely amazing. The sun shone, the flight was stunning and, at the risk of upsetting my friend Beetley Pete, I think it really was awesome. I am so, so glad I went and it happened when it did. I seriously doubt if I’d manage to get in the plane now.
Things went downhill after the weekend. I thought at first it was a result of doing too much and a few days of rest would put me right again. Deciding to have a bit of quiet time, I cancelled engagements, apart from my appointment with the palliative consultant – this time, a face to face consultation. We also cancelled our planned trip to Aberdeen to visit our son at the weekend. That was a good call as it was the weekend of Storm Arwen so travelling would have been a mistake.
Concerned about how breathless I’d become in case there were blood clots in my lungs the consultant organised a CT scan for the next day (the next day!) and upped my morphine.
No blood clots to be seen, which was a relief but nothing else pointed to a cause of the breathlessness. In case it was a return of the pneumonitis, I was put on steroids. Remembering how fast they took effect before I was looking forward to feeling much better after the first couple of doses over the weekend. Unfortunately, I wasn’t.
The GP called me on Monday evening after seeing the scan results and suggested an antibiotic as there was a suggestion there could be an infection. I’m over half way through the course now without any improvement.
I had my first home visit from a Macmillan nurse this week. She further increased the morphine medication, assuring me I am still on a very low dose. We discussed the difficult topics of putting in place DNR (do not resuscitate), which actually isn’t so difficult when you understand your heart stopped because we’re all done here and breaking ribs to re-start it – possibly very briefly – isn’t a great idea.
I have an appointment with the consultant at the beginning of the coming week. I have to say I am very impressed and very glad of the support network which has, seemingly seamlessly, appeared in place.
I’m tired in a way I’ve never been tired before. Chemotherapy made me tired, radiotherapy wearied me deep in my bones but this – this is something else again. In the morning I make and eat my breakfast then go back to bed with a cup of tea. It’s stone cold when I wake up. Talking makes me cough. A short chat on the phone leaves me breathless, coughing and exhausted. I’m a talker – this is hard. I’m hoping further tweaking of the meds will help to relieve some of these symptoms, at least for a while.
I would like to do some writing – there’s still the Goldfish blog to convert into a book and there are poems to be written and edited – but it will depend on my energy levels and focus. I apologise for not reading and commenting on as many of your blog posts as usual. That takes stamina. I will try to respond to as many comments on my blog as possible – it’s always been a cardinal blogging rule for me to engage – but if I don’t please don’t be offended. I’m just a wee bit knackered right now.
The last couple of weeks haven’t been easy, not least getting my head round the fact the increasing amount of medication I’m taking is not going to make me better, but there have been some wonderful highlights which I’ll enjoy remembering.