Hello ladies, in particular Em44, Irene and Ritbred. Sorry I've been out of touch for so long - I posted before I had my first post-treatment scan on 3rd April. This is going to be a very long post and I hope you will feel able to read it all. You will be familiar with the lack of support or help from the hospital and I'm adding an excerpt from a report I intend sending to CQC:
Somewhere around the 12th March I decided to join the Macmillan Cancer Support Group online and found the anal cancer online forum. This forum has been my lifeline ever since. The help and support I’ve had from people in the same position as me, has been so helpful, the ladies have given me tips on how to manage the swing between constipation and diarrhoea, my mental health and how to manage my life in general. It has literally been a life-saver. Some of the ladies on this forum are two years on, some less, but all say the same thing - the pain after the radiotherapy just goes on and on, generally for many months, some of them still experiencing pain passing stools two years on. I’d like to know why my doctor was unaware of this - perhaps she ought to read some of the comments on this forum - she might learn a thing or two.
I have to say that in general I have been let down, firstly because there was no aftercare of any sort, and when I have phoned and asked for help have been passed off with comments like, oh that’s normal, etc. These people have absolutely no idea of the agonising pain I have suffered and am still suffering if things get out of hand.
I really can’t imagine that I am alone in this matter, or that I’ve been singled out for such cavalier treatment, or lack of treatment or help and sympathy - in my opinion the entire Oncology department needs an overhaul and some properly qualified staff put in the OAU who are capable of understanding what cancer patients go through, not just the pain, but the entire terrifying journey, all the unknown after effects which just keep rolling on.
26th March 2023
Here we are on 12th May. Things have not improved at all, in fact the pain is worse. I’ll fill in what’s happened since 26th March.
On 3rd April I went for an MRI scan and had an appointment with my oncologist on 17th April to discuss the results of the scan.
On 6th April we phoned the emergency line as I was in such pain I was crawling round on the floor, shouting. I spoke to a nurse and she said to come in straight away. We went in and a young nurse looked at my bottom and told her it was what the nurse had suggested, moisture lesion. She then brought in some cream and squirted a large amount into the area. The instructions actually say to only use a very tiny amount and if the skin feels greasy, it’s too much. The cream was running down my legs, on my clothing and making a mess everywhere. It might have helped if she’d read the instructions before using it. Sophie sat in the office, eating her sandwiches and didn’t see me at all. She had assured me on the phone she would email the district nurses after Easter and someone would come and see me.
On about 13th April The nurse phoned me to apologise for not contacting me, but she’d been unwell all over Easter. On Wednesday 19th the district nurse office phoned me and a nurse came to see me. She inspected my bottom and said a lot of the things I’d been using were totally unsuitable, despite being given me by the hospital. I told her about my experience with my doctor, which is detailed below and she said she would see me the next Wednesday to hear the result of the phone call. She was shocked when I told her, but added that as my skin seemed intact, she wouldn’t need to come and see me again.
On the 17th April I went in to see my doctor who asked how I was getting on. I said I was still in a great deal of pain and one of the nurses suggested it was nerve pain and the oncologist agreed, but just gave me some more steroid cream. She then said that the Radiology Department “hadn’t had time to look at my scan and report on it”. Well why on earth did she get me in there for nothing? My journey down to Poole has to be accomplished by me lying down in the back of the car and I’m in a worse state by the time I get home. My doctor and the nurse said they were having a meeting with Radiotherapy on Thursday and the nurse would phone me after the meeting. I have to say Peter and I have no faith at all in the doctor.
The nurse duly phoned me on Thursday 19th in the afternoon about 4ish and said they’d had the meeting with Radiology, but they couldn’t see anything because there is so much inflammation, which was what I thought they would say. She was clearly in a hurry and when I mentioned a district nurse had suggested I perhaps had an anal fissure the nurse snapped “how would she know, she’s not a doctor!”. She then said she had a meeting and rang off, she was on the phone about three minutes.
I then, out of the blue, had a telephone call from my GP surgery, saying a Dr X would like to see me to discuss my medication - such a pleasant surprise to be invited for a discussion. I had also been to see our own GP, as my stomach was giving me awful trouble as I’d taken paracetamol, knowing it disagreed with me, but I was desperate with pain. We saw my GP and he was surprised at my level of pain when walking to his room. I was unable to sit down and stood during the consultation, except when he examined my stomach. He said I was constipated and must take Laxido, which I did. He then instructed one of his employees to phone me a few days later to see how I was feeling - to me this was just so good, after the sort of treatment I’d received at the hands of people in Poole Hospital.
I duly went and saw Dr X on 26th April. She again could see the high level of pain I was in and straight away said “I’ve got to sort out this pain for you”. Again, I stood up for the consultation. She had asked me in to discuss the Sertraline (anti depressant) I was on and had it helped and had I had any side effects. I said it had literally been a life-saver and she was pleased and put it on repeat prescription for six months for me. My original doctor should have checked this with me on 17th April and put it on my notes s she had prescribed it for me, but didn’t bother.
Dr X then asked me about the morphine I’m on and asked if it helped the pain. She said it was nerve damage, hence the awful pain. I said I won’t take a lot of morphine because it blocks me up, but does help with the pain to a degree, but takes a long time to work. I take 5 mls of morphine and Dr X said to tackle the pain I of course needed a higher dose, which would then cause constipation. So she then suggested I change to Gabapentin, which is specifically for nerve pain (and epilepsy), and I felt that at last we were going to get somewhere. She did say it would take some time to start working, about three to four weeks and I’d need to keep taking the morphine if the pain was too bad. She made me an appointment to see her in three weeks to see how I was tolerating the Gabapentin and if it was helping.
Well, it’s now 12th May and things are really much the same, except I do think the pain isn’t quite as bad as it was. It’s quite hard to judge really, but my bowels are quite regular now, I take prunes and Laxido at night and that seems to work fine. I’m always sore after opening my bowels, but the actual going is less painful, which is an improvement. I am still unable to sit, except for short times with a proper “donut” pillow which someone gave me. I either stand or lie down.
I am booked to see Dr X next Thursday, 18th May, to see how I’m getting on and I’m going to ask if we can increase the Gabapentin now to see if the pain can be reduced. She has been so helpful and caring, I now feel confident again in the knowledge that someone is looking after me and monitoring my progress.
I feel very strongly that the treatment, or lack of it, at Poole Oncology Assessment Unit is disgraceful when you consider how frightening a diagnosis of cancer is and the lack of aftercare, support or information on what to expect, or what might happen after treatment is totally unacceptable.
12th May 2023
There we are ladies - I hope you are all keeping all right and I look forward to hearing from you. Bee xx
