Ihad a good weekend here at FNH. Nothing spectaculr happened but Liz had the opportunity to do jobs she couldn”t when I was at home. Such as sanding the end of the lounge ready for the final coat of paint as my son applies the finishing touches to the kitchen etc.
We did a bit of talking over the weekend and with the doctor today and decided not to go for radiotherapy but to stay here and at home. It would have been a lot of upheaval and discomfort for possibly no benefit and plenty of downside.
My right leg had swollen up again and this time my left leg was trying to join it, Getting out of bed was increasingly exhausting and difficult. Liz rang the Ian Rennie nurse and discussed it. The upcome was that the Lymphodemia nurse from Florence Nightingale who came and gave me a pressure sock and put a pressure bandage on my upper leg, For those who don’t know Florence Nightingale is a hospice on the Stoke Mandeville site while Ian Rennie provides similar care in your own home. You may remember that we supported the Florence Nightingale midnight walk fundraiser.
Continue reading “A difficult decision”
I have told you that after a month in hospital I was allowed home with a package of carers and nurses put in place, but after being home for a week or so I went back with an infection. This seemed to be sorted so home again. A couple of weeks later and I was back with another infection. After loads of scans and blood tests they concluded that I had an abcess on my lung and was put on long term IV antibiotics. I couldn’t go home unless they found a tablet equivalent, which they did so I was able to go home.
What is particularly frustrating is having to rely on every one else for getting everything that is not within arms length. So I am having to spend time reading watching TV and writing. I have my laptop set up by the bed and have a small keyboard on my lap. So far have written my life story – something for the granddaughters to read one day (it’s only about 20 pages) although my brother-in-law has been lapping it up.
In addition to having to have everything within arms length I can only see things in front or the side of me; I have no idea what is happening behind me, Possibly the greatest annoyance has been that I have completely lost any strength in my legs, so with help I attempt to stand up by the bed a few times a day which is exhausting.
I had an appointment with the oncologist and an ambulance was ordered but then they discovered that the Cancer Unit cannot cope with patients on stretchers so I had a phone conversation with him. Also had conversations with the Ian Rennie and district nurses. A lot to mull over.
I have been visited by various lovely people who are arranging for me to go home. A hospital bed will be set up in the lounge and I will have nurses coming in to help. Short term outlook improved long term who knows. More of that anon. The staff here at SMH have been brilliant. I will tell you more about the strange events that have affected me over the last few months another time.
Sadly perhaps 100yards away from me in a hospice the other side of the hospital my granddaughter’s other grandfather passed away last night. This is the granddaughter who was having her hair cut off for charity and she had managed to bring the haircut forward to tonight so that we both could see the result. Sadly it was not to be. But she kept her promise and her hair is a lot shorter! (I am not allowed to show photos). The cut off hair will be made into wigs for cancer sufferers while money she is raising will go to the Hospice and cancer research. I hope this will also provide some comfort for my granddaughters.
If you want to support them there is a link below or kind words (which I will pass on) are welcome.
How many times have I heard that phrase over the past few weeks? But today I am going to leave the words to my granddaughter. Please read them.
The other weekend is all a bit of a mystery to me from Friday morning onwards – at one point I thought I was in a storage closet except that among the clutter were a couple of beds. Oh this is where people go to die I thought before I drifted off.
Nearly a fortnight later I am lying down unable to get out of bed. It amazing how quickly you lose muscle tone and what difference fat legs make. I was weighed the other day and was almost 10kg heavier than normal. All liquid in my legs and elsewhere I think. This meant that I am very restricted on where I can put my legs etc. Then when I try to stand up I need the help of two physios or nurses and a frame or rotastand which I can hang on to to get from bed to chair or back. I shall have another go later but at least I’m not in the broom cupboard.
Having been batted back to oncology from urology I fortunately had scheduled review imminent. I told my oncologist about the traumas of the past six months. He was of course aware of my raised PSA. He is a man with a calm and reassuring manner and a voice to match. As expected he added another tablet (bicalutamide) to my list and proposed a two scans so that he can get a better idea of what is happening. The first was a bone scan which I had last week. As before I went in to hospital for an injection of a radioactive tracer then home to drink plenty and let it do its work (gathering in hotspots in the bones). Three hours later it was back for the scan itself. Continue reading “Mildly Radioactive (Again)”
I left you in the Urology ward waiting over the weekend for an ultrasound scan (KUB – kidneys, ureter and bladder). Saturday came and went with an extraordinary rugby match – England 31-0 up after 31 minutes, Scotland then leading 38-31 at full time and England nicking a draw in the dying seconds. Sunday I should have been having another TWOC (Trial WithOut Catheter) but this was postponed. Had my last meal at midnight in case I needed to go down for surgery after the ultrasound. Continue reading “Urology to oncology”
Following my listing for a TURP I got a letter asking me to go for a Pre-Op Assessment. Where I had to go was not entirely clear – it mentioned a Pre-Op Assessment and it mentioned Urology so I headed to the Urology wards. “No we don’t do Pre-Op Assessments here, you need to go the old building. My colleague will show you the way“. So off down a series of corridors across a bridge between building, down more corridors and eventually into a small waiting room. Continue reading “Two weeks to go (and dogs)”