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.
Having been home a fortnight I settled into a daily routine until yesterday (but more of that later). In hospital routine is governed by medical needs – consultants rounds, regular “obs” etc.
At home it is the carers who set the routine coming in at 7am, late morning, late afternoon and between 9 and 10pm. They check my drainage bags (catheter, and nephrostomies), give me a wash and do anything else that is needed. Following a couple of sessions with the physiotherapist they have helped me get out of bed and into a chair. A District Nurse also visits in the morning for injections and a check up while the Ian Rennie Nurse also checks in regularly. Quite a cast supporting me.
That that doesn’t include Liz, family, friends and the dog. I am totally reliant on people putting things within reach. How can I repay them?
I mentioned the dog. For a couple of nights she tried to get into Liz’s room during the night then early Saturday morning she went into her room and got onto the bed to wake her up. Liz was not impressed (until later). When she got up she found I had rigor. This eased off but returned when the District Nurse arrived. Although I felt fine all the indicators said otherwise – high temperature etc. Clearly I needed antibiotics and preferably intravenously (which act faster).
So the Nurse called 999 and I was soon on the way back to the hospital. I had blood tests and the other usual checks and was put on IV antibiotics. I also had my catheter changed (ouch). From the muck that came out it seemed that this was the source of the infection. So yet another ward at SMH but hopefully a shorter one this time.
But the question I want the answer to is “Did the dog wake Liz because I was unwell?”
A week or so ago we discussed the possibility of me going home with the medics. (I mean discussed with the medics, not going home with the medics). We had a long and serious discussion with the registrar who made it clear that the decision was up to me. The ward seemed to be full of people who would go home if their homes were suitable for them in their condition. Our house was suitable, it just needed some equipment, Liz wanted me home, I wanted me home, so the decision was easy.
Continue reading “Home”