Just as we thought we'd caught up with all the changes in the last 3 months they've changed again.
I had a second assessment with the palliative care team on Friday & the Consultant said there was a significant difference in a week. My OH has been struggling to manage.
I'm losing my upper body strength which makes transfers very challenging and sometimes feel unsafe. I've now got a hospital bed in the therapy room, commode and a bath lift. I'm going to have 2 carers for an hour in the morning and evening and can also have help with a bath 2 or 3 times a week. I haven't managed to get on top of the pain since Friday and it's so draining. The amitriptyline is being increased slowly so I'm still on a very low dose & knocking back the oramorphine every couple of hours.
My sister and I have cancelled our week in Scotland in early June. I'm heartbroken and relieved in equal measure. The travelling alone would be a huge challenge and a remote Scottish Island not a good place for me now.
I'm not ready. You'd think by now I would have learned to expect the unexpected but I would just like more time to spend with family and friends.
So, just need to sort out pain control and make the most of this lovely therapy room. I've got this. xx
It is annoying when drugs are not prescribed quickly for you especially like pregabalin whch takes a while to work,
the plus side is your pain is better controlled now and you are able to see a few people briefly and enjoy the sun a bit,
I am enjoying doing what I can and having lunches and drinks out I go home and rest afterwards.
llove xxx
Ruth
It is annoying when drugs are not prescribed quickly for you especially like pregabalin whch takes a while to work,
the plus side is your pain is better controlled now and you are able to see a few people briefly and enjoy the sun a bit,
I am enjoying doing what I can and having lunches and drinks out I go home and rest afterwards.
llove xxx
Ruth
Hi Tinalay, so sorry to hear of the troubles you have been having, I hope that the pain is brought under control and stays there. I an glad that you were able to stay home. Your therapy room sounds great.
Best wishes
Sarah
Dear Tinalay, Hope you are coping with the pain better than you were. Sending you my thoughts and prayers for a good outcome for you. X RD
Hi @Tinalay,
You have been silent for several days now, hope you are ok. I realise you may be too tired to respond, but just to let you know you are in mine ( and am sure) others thoughts.
x
Hi Tinalay
As OBS says, you are in our thoughts. Love and hugs xxx
Sarah
Hi, I wholeheartedly agree with you Stuart and I hope they are happy memories Tinalay. Thinking about you.
Love Annette x
Hi Tinalay
I want you to know that I think of you a lot and I hope you're resting a lot. I've had a 10 day stay in hospital myself and the whole 10 days I was receiving strong antibiotics 4 times daily.and before that I had a few hours of being surrounded with ice stuffed pillow cases to try to reduce my body temperature from 39°C to somewhere near normal. A very unpleasant experience.
I hope that you are as comfortable as possible now.
Tvman
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007