Decision made

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.

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A difficult decision

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.

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I don’t have eyes in the back of my head

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.

Another day another ward

Back in July I told you how after a few days at home I had to return to hospital for intravenous antibiotics to fight an infection. After five or six days it was back in an ambulance and home.

Unfortunately a week or so later I succumbed to another infection and it was back in the ambulance to A&E. They were again very thorough in examining me and taking blood etc. and eventually I was sent up to the Respiratory Ward. More scans (ultrasound and CT) and the conclusion is that I have an abscess on my lung which needs a longer course of antibiotics.

After consultation with microbiology a set of oral antibiotics is found to replace the intravenous ones so there is a chance for me to go home. First though a couple of blood tests to make sure they are doing their job.

Away from the needles (it is becoming increasingly difficult to find my veins – as soon as the needle punctures my skin they run away) Liz suggested that I should write my life story. I wasn’t sure but decided to give it a go. So I have started. I am on the second draft at about 19 pages. If I were to include full write-ups of our trips to Africa, Australia and Antarctica as well as various jobs etc it  would run to hundreds of pages.

Daily routine, home and back again

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?”

 

 

 

 

Home

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.

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How things have changed

Just a few weeks ago I was able to walk and take care of myself but gradually I became less active with walking becoming more of a struggle. There was no obvious reason and we did not address it.

Then on the fateful Friday I collapsed. I am now lying on a bed with restricted movement. I can move my arms and head but sitting up is a challenge – I  can really only do that with the help of the bed. I can hardly move my legs which are very heavy. With assistance I can be dragged off the bed and stand up with support but not for long. Sitting anywhere (other than lying on the bed) is painful because of swollen accoutrements. Various bags empty various organs!

What I don’t understand is why. Apart from the reducing mobility I was finding eating difficult often throwing up and with no appetite. We’re these unrelated or not? What was lurking in the background but I had forgotten about was the prostate cancer. Was that the cause of all my ills?  Or how much was down to the pneumonia or sepsis or my diabetes going out of control?