So after a week or so of this bloody painful shoulder and arm, it got to the point where I couldn't walk very far - nothing wrong with my legs - it was my arm. It was too "heavy" for my body. I was walking around with it permanently held up across my chest in the typical sling position. I would have to stop and rest it on random walls and fences as I walked around town.
I went to the GP. The GP looked at my shoulder and diagnosed "frozen shoulder". She gave me some stronger painkillers and a physio leaflet. The idea was to take the painkillers, and, when they stopped my arm from hurting, do the physio. I think I managed a week of the physio before I broke down crying and said I couldn't do it any more. It hurt too much and it was making it worse.
I self-diagnosed lymphodema, looked up a lymph draining massage and gave it a go. No joy. It felt nice for a few minutes but then the pain reminded me it was there.
I went to the GP again. This time I saw a different one. I mentioned that I felt as though there was something in my armpit that stopped my arm from moving. She considered a bone spur in the shoulder and sent me for an x-ray. At last I felt things were moving. The x-ray was clear.
The GP changed my co-codamol to tramodol. They didn't help but by the tenth dose, I was clock watching, itching for it to be time for my next dose. When they ran out, I went back to my GP and asked her to put on my notes that I never wanted them again. I enjoyed them far too much. She put me back on the co-codamol and sodium naproxen and I muddled along, sometimes unable to wash my hair, sometimes unable to pull up my jeans after going to the loo.
I spent every night with a hot water bottle pressed to my chest - it was the only thing that brought the slightest relief. Alcohol helped too, but I was wary of going there.
When I realised that I was at the stage of being unable to brush my teeth or wash my hair without it being a carefully timed to coincide with painkillers operation, I said I'd had enough. It was affecting my life too much. I am left handed - the pain was on the left side and I couldn't even sign my prescriptions. My finger and thumb were numb.
I went back to the GP and begged for help. I told her that the pain was in my arm, my scar, my shoulder, - she referred me to the breast unit. I quickly received not one, not two, but THREE identical letters cancelling the appointment.
A month later, I went back to the GP and again begged for help. I was in tears - telling her that it was ruining my life. I was now spending every night with a neck cushion - the U shaped one - under my armpit so that my arm didn't touch my body. She thought an injection into the shoulder might bring relief. I agreed and she arranged for me to return the next day to see a GP who was trained to do it - she,was not trained to give this particular injection.
I went back the next day and saw the different GP. He looked at my shoulder and said the injection wouldn't help. He suggested that I stop wearing my prosthesis as it was too heavy - stop using my arm when it hurt and he said that I was using my muscles incorrectly. These things combined was the source of the pain.
I gave up. I had tried and tried over and over again to get the GPs to listen to me. I started to think it was in my head - after all, an x-ray had shown nothing wrong. Physio hadn't helped.
I continued with my painkillers, hot water bottle, U cushion and carrying my arm up against my chest.
The year 2019 arrived and I put in a repeat request for my naproxen. That's an anti-inflammatory. The GP refused to issue any until I had a blood test - Naproxen can be quite hard on the stomach and liver. So I had the blood test and, the night before I went for the results, spent a little time on Google. I discovered something called "post mastectomy pain syndrome" and made a mental note to discuss it with her. Apparently there were tablets that could block the nerves - my fake electric shocks and phantom itches were, I was sure, some sort of nerve thing. I decided to ask her if this could be the answer.
The minute I got in the surgery, she told me the blood test was fine and I could have my Naproxen. She wanted to look at my shoulder so I took off my top. She then wanted me to lie on the couch - this was strange. Normally when a GP wanted to look at my shoulder, I remained standing and was told to do things like walk my hand up and down the wall, stretch as high as I can - that kind of thing. I was never asked to lie down.
As I lay down, I mentioned the syndrome and the nerve tablets and she immediately agreed it was a possibility and that she would prescribe a tablet that was an anti-depressant, but in low doses, could change the way the brain felt pain from nerves.
She pointed out my chest/scar was swollen and that I had a lump in my armpit - the same lump an earlier doctor had mused could be a bone spur.
She gave me my prescription and a referral to the hospital. I looked at the letter when I got outside. It said "suspected cancer" and put me on the two week pathway caper.
So ended the first week of January, 2019.
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