Home but Feeling Deserted By The NHS

Thursday 10 July 2025. So yesterday was my first full day at home. I had so much to do: seemingly a thousand boxes of pills to sort out and work out when each needed to be taken...

The house insurance was due and the company had decided to cease operating so I had to phone up and sort that out. I also tried without success to sort out an appointment with the District Nurses. The best they could offer was in 3 weeks.

So this morning I need to ring the walking centre apparently. They will only book appointments for the current day. It is now the 4th day since my legs were redressed.

We did an online grocery order. I went out with Miss Franny to admire the display of roses in the garden. Getting out of the front door was a bit testing but I got out and back in without mishap. I did the same with the back door to have a look at the apple tree and express surprise at the juniper tree - a new home gift from Janet and Graham, six years ago. Early on the wind broke the trunk in a winter storm and I had to tie it to a cane. It looked like it might not recover for a couple of years but now it's climbing 3/4 up towards the garage roof...

Then a much needed relax. Fran made lunch and we watched the first of many recorded episodes of The Footage Detectives from Talking Pictures TV. Then a much needed nap before Grace popped in on her way home from school.

We were in bed early, but spent an hour or two watching yet more recordings on the telly. The remote upstairs must be powerful because as I switched off the Sky box upstairs we heard a noise from downstairs where the main Sky box had come on, in turn switching on the downstairs TV...

Friday 11 July 2025. Sorry, today's report may be short. Trying to get any aftercare, specifically having the legs redressed has been an absolute nightmare. Between the District Nurses main line, the doctor's surgery and the walk-in centres at Blackpool and Fleetwood I've been told to ring the next service until I had gone round in a circle twice...

I tried the Discharge Team back at Clifton but they could only advise the same three options. Fleetwood walk-in centre only offered a ray of hope in that if I phoned back first thing in the morning I could make an appointment but they had no trained nurses and would only be able to change top or wet dressings... How that turned out is a tale for tomorrow...

For Heaven's sake is there no written policy specifying who has final responsibility for this? And as one friend commented: "And that’s why A&E is collapsing... It becomes the last resort."

Saturday 12 July 2025. So yesterday....I phoned the walk-in centre first thing and got an appointment for 11.00am. I was warned that all they could do was change any wet bandages, not the dressings beneath, so back on the merry go round with no further success. By the end I was so distressed I was shaking both with anger and distress.

I got a call from one of the nurses at Clifton who had treated me and he said I needed the legs redressed fully twice a week but the hospital couldn't help with that.

We got into a taxi and went to Fleetwood. The nurses there went berserk. They weren't fully trained nurses. They apparently had a long history of this sort of thing with my particular surgery.

Whilst one took off the wet bandage on my right leg and wound a new one around, her colleague with steam coming out of her ears went off to get her boss to ring the surgery and play hell. She was spitting about total breakdown of duty of care.

I've no idea what was said but I got a call from the surgery whilst in the taxi home and then a further more detailed one not long after we got home. The legs will be fully redressed twice a week at the District Nurses downstairs from the surgery where I'd been going before.

The GP Receptionist had the nerve to ask how I felt. So I told her. I felt totally let down, angry and upset. Unbelievably she ended with "have a good weekend ". Grrrr...

Cancer and Leg Ulcers Index
Family Memories: Personal Index

I'm Home!

Tuesday 8 July 2025. It's going to be a bit of an emotional roller coaster again, sorry but bare with me...

It started first thing in the morning with a text message from granddaughter, Grace: "Grandad come home". Seven o'clock in the morning and I couldn't stop staring at and re-reading those three words. Sobbing, tears streaming. Just couldn't stop. Tears again just writing this...

A nurse came in to do my early morning tests and uttered a sound of dismay, "John, what's the matter?" I couldn't speak. I just showed him the message. I calmed down for a bit but those three words kept going through my brain and I'd set off again.

I was late therefore getting down to the Day Room. Only one of our gang of three was there. 'T' turned up a bit later. His daughter was coming to take him out for lunch.

The nurse in charge of Breakfast Club made me some toast, poured me a box of cornflakes and gave me some milk, butter and marmalade... The Three Musketeers can make breakfast last a long time...

Someone squatted at my side: "John I'm from the Discharge Team, we're sending you home today." Multiple emotions again: shock, relief, hope, panic, joy... Nurses assured me they would ensure that all my stuff would be bagged up ready. It would be in the afternoon.

One of the Physios came over to ask how I felt, was I ready, was I worried about anything? Blimey, how long have you got? But that was a knee-jerk reaction. Mainly any concerns were around the differences between the methods followed by the surgery District Nurses and that of the hospital. Let's not forget that one had been treating me for ten months with only limited improvements and I've been in hospital for nine weeks and the improvement has been astonishing.

Another update: "You're going this morning." Well I wasn't... Dinner came and went and one of the nurses took me walking round the garden and once more through the poly tunnel. Judges from Britain in Bloom were expected.

It was getting towards teatime. Apparently the transport team were in the building, we were waiting for the pharmacy to dispense my meds - an unbelievably huge bag of boxes when it arrived. Lots of goodbyes. Nurses of all ranks, the musketeers...

Loaded into the ambulance for a trip along Blackpool prom. Lovely weather, lots of people, a bit of a traffic jam going past the Tower.

Home. Miss Franny. More tears, quickly stifled as the Care Team were already waiting with more equipment. They had me walk to and sit on the downstairs loo, get up again, climb upstairs, same with the upstairs loo, onto and off the bed, going downstairs he stopped me and showed me how to come down more sideways like a crab holding two spindles rater than the balcony and my stick. I tried it, it was definitely easier.

A long talk and they left and it was time to hug and be hugged. A few more tears but now they were tears of relief and happiness.

Gill and Grace came. So good to see them and to see the obvious relief on Grace's face.

We were in bed early. I was exhausted. I talked Miss Franny through all the pillow placements, a rolled one under the knees and a flat one under my feet to keep my calves lifted off the bed as much as possible. Maneuvering myself on the bed was a bit difficult- no safety bars to grab!

I'm home. No: even better than that... I'M HOME!

Cancer and Leg Ulcers Index
Family Memories: Personal Index

Mind Going Haywire - More from 7 July 2025

Monday 7 July 2025 - the bits missing from the last entry, unless they contradict anything in which case who knows when I'm writing about...?

Well Monday passed without me hearing the term "Piano John" again so it was short-lived nickname! After the usual 5.30am pill and blood pressure tests etc I must have really dropped off again. My phone alarm warned me it was time to ring Miss Franny but then once again I fell asleep for another hour.

Down to the Day Room. The nurse who had recorded the video showed it to me but said she would have to get permission to pass it on as there was a strict rule about nurses having access to patients' phone numbers. It was almost nearly approaching good though...

Anyway one of the nurses took me outside during the morning. It was beautiful and sunny but cool because of the breeze. She held my hand as I was still a bit wobbly walking with just the walking stick and we went through the poly tunnel, a half tube of plastic material acting as a greenhouse.

They grow cucumbers, herbs and tomatoes of epic size. Some look more like small pumpkins...

We came out the far end to some chairs and I gratefully took one, it had been a long walk for me and whilst I could tell I was walking better as we came through the tunnel, a rest was very welcome.

So now I was a bit tired and a bit proud that I had managed and all other emotions, wondering when I'd be home, whether I'd cope, what had caused the fall etc. As we talked the nurse hit one of those nerve points and tears suddenly started.

She was lovely, she hugged me and talked me through it... perhaps too quickly, sometimes you need to let these emotions out and I'm one of those who has to be there for everyone else. I always have been. So it's a strange experience for me to need that sort of support myself.

Anyway she said she would bring me out with the sketchbook after lunch and we went back in just as lunch came round. Afterwards someone from the discharge team came to see me. It looks like I'll be home mid week! Fingers crossed.

True to her word the nurse took me back out with the sketchbook after lunch had been cleared.

It wasn't a scene I would have picked myself but I gave it my best.

After tea I was flagging. I went to bed early and zonked. I woke guiltily at 8.00pm, convinced it was morning so deep had been my sleep. I phoned Miss Franny, confusing her no end by apologising for missing two calls when really I was still an hour to go before I was due our goodnight call at 9.00pm...

Zonked again... So now was awakened at 5.00am for first pill and wide awake! If I'm lucky this now refers to Tuesday 8 July...

Cancer and Leg Ulcers Index
Family Memories: Personal Index

Cancer and Emotions 2022 and Onwards

Following on from yesterday's article about me finding out that I had cancer on my liver, I wanted to say a few words about the emotions this might cause anyone with a similar diagnosis in the hope it may help or support others through a very difficult time.

First of all a slight disclaimer re the photo - I posed for it this morning. Not that I didn't have any emotional times... despite what some will tell you I am human and despite what I might tell you, I am only human! It's just that at the times when I had an emotional interlude, I wasn't quite able to think: "this would make a good shot for the blog..."

I don't tend to look on the darker side of life and after the first possibility of cancer was mentioned we took the stance that until it was confirmed then it wasn't worth worrying about. Not that it didn't cross my mind a bit and this is an important point to make. No one can tell you how to react to such news. If you need to let tears out, let them out. It's far better for you than trying to be macho. Better again if you have a sympathetic someone there with you. Either just willing to listen or to share the emotions. I'm told that the MacMillan organisation are good at that but personally I've not had the need to call them. Other people have been good at listening and most times that's all I've needed. Advice, encouragement and support I can find helpful, sympathy I've not looked for and it can actually make things worse sometimes.

You will find that all sorts of emotions and thoughts might affect you. The "Why me?" thoughts can either make you feel let down by life or make you very, very angry. It's not logical to be surprised perhaps when we are told that one in two people will get cancer and this ratio seems to keep growing. I'm not sure why, but if you try to connect to your wi-fi on your phone or computer you will see an entire street's worth of routers listed all of which are blasting some sort of radio waves through you as do Sky, Netflix, Apple and other entertainment channels whether you subscribe or not, your own and nearby mobile phones, God knows how many SatNav and other surveillance satellites etc etc. In the 1990s we wondered whether mobile phones would damage our health in any way - perhaps we are getting the answers now...? In any case logic has very little to do with you getting angry or not. I hardly ever lose my temper yet I had spells in those early days after my diagnosis of finding myself having to bottle my anger lest some poor innocent should find themselves being shouted at.

I half touched on another thing in the previous article that can make you intensely angry. That is thoughtless comments or actions by others who either think they are helping or who simply have all the empathy of a well-cemented brick... A few examples are:

No, don't get up... I'll do it...
No... you haven't got cancer, [then either] you've got all your colour in your face [or] you don't look ill.

For me the unbelievable doozy came when I mentioned to someone, within a week of being told I had inoperable and incurable cancer, that I didn't know how long I had left to live (the fact that I was low enough to broach that subject should have been a clue to be kind). No, instead I got the response (delivered in an annoyed tone): "Well no-one knows how long they've got - I could fall under a bus tomorrow!" Oh man - you've no idea how good it would have felt to smack your nose right through to the back of your head just then... Luckily I'm not that sort of guy - just don't give that response to anyone else!

If there's one main message to give in this article it is this. Emotions are very personal. And you are allowed to have them. If you need to shout your anger out then do it. Try not to make the life of someone close to you a misery though. It's not their fault. And there's a message there for partners, family and friends. A person trying desperately to hold onto their sanity after a diagnosis may act in extreme ways. Be there for them when they are able to be helped. Give them space when they are flinging blame or anger about. As I've said already: there's no logic involved in such emotions. And lastly Good Luck in holding it together.

In the next article I'll explain what to expect when having a scan - whether it be an Ultrasound, CT or MRI scan.

Cancer and Leg Ulcers Index
Family Memories: Personal Index