Letter from Treliske 30th Oct, a testing Time
A testing time
When we left Treliske on Friday (the day of the accident) they said we had an appointment with the Ambulatory Care Unit at 9.30am on the following Monday. My understanding was that this seemed to be a follow-up after the accident and for a biopsy to be taken. It seemed like we were the first to arrive at the ACU that morning and we were taken to a small side ward where the usual tests took place (temperature and blood pressure) and then a consultant appeared and we told him all that had happened including that we understood that a biopsy had been booked. He went to check this and no, it hadn’t. Fortunately, he was able to get one arranged which took place later that morning.
Whilst this unit didn’t address gender directly, they did ask what I wanted to be called. I said ‘Bean’ and that is how they addressed me and introduced me to others. In addition, compliments on how I was dressed showed, to me, that they were comfortable with how I presented myself and my ambiguous gender.
The next stage of the process was to check my tummy, I believe to see whether there were any other suspicious lumps and bumps, and for this I had to remove my top and camisole.
Putting on and removing clothing is an extraordinarily tortuous process when not only can you not move your right arm, but any twitch is excruciatingly painful. It is surprising how standing up, sitting down, moving your left arm tugs on the right-hand side. Surprising, that is, until someone installs pain sensors and then YOU KNOW”.
When I was 22 I broke the big toe on my left foot. The joint itself is still locked. Again, it’s only when it doesn’t work you discover how useful it is when you walk and you need to re-learn. I am learning very quickly what is connected to my ribs and collar bone – there is a lot, including breathing and as for coughing (which is, apparently, essential for lung health), that’s great fun (not).
So, it had taken us an hour and a half that morning for me to have a basic wash and get dressed and we didn’t make the best choice of top, pretty but difficult to get on and (as we later found), off… Subsequently we made sure that my tops always had buttons up the front. However, with Teresa’s help, and a lot of fuss, I was able to get dressed in the morning and remove the clothing in the side ward. So there I was, sitting on the bed with my cerise knickers (dark pink, for the boys, though they weren’t boys knickers ????). One of the nurses offered me a standard hospital gown to cover me up while we waited. This was a considerable step up from my previous experience of such gowns. It didn’t feel fragile and the ties let it close completely at the back.
My tummy was then palpated and I was told I could get dressed again. I REALLY did not want to go through the whole undressing, dressing thing again so I asked if I could keep the gown on and just put my skirt over the bottom of it. They were quite happy with this and, as it turned out, it was a good move.
So now it was waiting time until they were ready to do the biopsy. They were going to take a biopsy of the enlarged lymph node they had seen in my right shoulder and to do that they use an ultrasound scanner to be sure they are aiming at the right spot. Consequently, we were summoned to the ultrasound unit and I was offered a wheelchair but I fancied the exercise and so was escorted (with Teresa) to Radiology. After a bit of a wait, in we went in and then had to find a compromise between how flat I laid and what I could tolerate because of the pain. In retrospect I should have asked for some Oromorph before I went down. The radiologist proceeded to give me a local anaesthetic and warned me I’d feel a prick and a scratch. She seemed to be concerned that I would be worried about the pain from the local anaesthetic. I had far bigger pain worries than whatever she was doing and I think she could have used a red hot poker and I wouldn’t have noticed. I didn’t see the actual biopsy being done but from what I felt and heard, and what Teresa describes, it was a bit like having your ears pierced except with a much, much, much, bigger needle. She took two samples and whilst I felt the pressure of the sample gun being fired, I didn’t feel any pain at all – other than the intense pain I was already in.
When I was doing my PhD, it was using Ultrasound technology that was 40 years behind todays, real time ultrasound scanners are the norm now, they didn’t exist back then (ditto CT Scanners). As well as everything else going on in my life at the moment, my love and interest in technology has not waned.
A small plaster over the wound, and that was that.
I later noticed blood all over the shoulder of the gown and I was glad I was wearing a hospital gown and not my pretty top.
The radiologist’s assistant offered me a wheelchair to return to the ACU but, as I had arrived under my own steam, I wanted to go back the same way, so I politely declined.
I headed back towards the ACU but hadn’t got very far before I was hit by intense waves of pain from my collarbone and ribs and had to lean against a wall to support myself. We were right by the reception for the radiology unit so I asked Teresa to organise a wheelchair, please. That seemed to be taken as an unreasonable request by the reception staff who said they hadn’t got one and couldn’t possibly help. I could tell that Teresa had gone into major protective mode and was ready to have a major wrangle with them and it was quite likely she would make them carry me if they couldn’t find a wheelchair ????. However, the pain subsided to a dull roar and I couldn’t tolerate any fuss so I just set off walking back to the ACU and, once Teresa realised I’d gone, she came after me. At the speed I was moving, catching me up wasn’t exactly a challenge.
I have to say this was the worst attitude I encountered. Most of the staff were helpful and supportive, some officious but ok; this lot were just belligerent and really could and should have tried harder.
Once I was back in the ACU I asked for some more of that Oromorph stuff. We were now back to waiting for another CT scan, this time of my abdomen. After some hours we were told by a junior doctor that they were too busy and we would be sent a letter in a week or so, notifying us of when my appointment would be. I wasn’t happy about this because I wanted the test done as soon as possible. Fortunately, other staff on the unit agreed with me and were able to organise a scan for 9.00 the following morning. I was very grateful for this, and for the biopsy being arranged and this confirms how I felt on the Friday when I could see that most staff did their best, sometimes in spite of the system, some went more than just “the extra mile”.
And so we went home, me still wearing the gown. I was in a lot of pain when we got home and could not face removing the gown, so that was my nightie for the night.
Treliske ACU – Take Two
The following morning, we were up again at 6.00 am and went through the same painful process of getting washed and dressed, except this time with a buttoned-up blouse. It didn’t quite match the skirt, the blouse being coral (orangey pink, for the boys) and the skirt a dark pink. I wasn’t happy about that, but needs must, and I did apologise to the staff on the ACU when I arrived having been complimented on having a matching top (and knickers) on the previous day. The knickers today were purple, but at least they toned.
We arrived at the ACU in good time, had the usual tests, and were taken down to the CT scanner. However, this time I asked for some Oromorph first, and for a wheelchair. The scanning process was exactly the same as Friday, although this time as well as the ‘taste’ and warmth in the crotch, I felt a warmth in my chest area as well.
I wouldn’t say that the taste in my mouth was unpleasant, but if I were an autistic with taste sensitivities (which I’m not) then I could imagine it being deeply unpleasant and distressing, especially being unexpected, and I do wonder whether, as well as asking if we are allergic to the contrast or the chemicals in the contrast, they might check whether we have taste sensitivity issues.
Teresa wheeled me back to the ACU and a different consultant on the unit told us not to bother hanging around for the results as there wouldn’t be any information and we should just go home and wait. This was the first time I had a real sense that the oncology unit has its own way of doing things and some people weren’t altogether happy that we’d worked around some of their processes. The biopsy results would take a week or so and the Multi-disciplinary Team (MDT) (to decide what it meant and what to do would) would meet once they had all the data.
As it happens, we got a call from the ACU consultant on Thu/Fri telling us that the biopsy indicated the cells in the shoulder were from the kidney and that was likely to be “the primary” and they would expect the MDT to take place the following week and we should hear by the end of that week about what would happen next. In fact we got a letter on the morning of Friday 10th telling us that we were to go to the oncology unit on Wednesday 22nd November.
The Aftermath – and Visiting the Ailing Blossom
Since we were finished quite early (about 10.30) and I’d had a message from my garage saying that they’d collected Blossom from where she had been towed to, I decided I wanted to call into the office to say hello and then across the road to the garage to see what state Blossom was in, and so off to Penryn we went.
Fortunately, our Human Resources man was in and he was able to walk me through the whole sick note/sick leave process which meant that I now knew that I had to go to seem my GP to get a sick note because that is required after the first six days.
It was nice going into the office and Teresa came in with me. I know it’s a good company to work for but I think Teresa was surprised by just how friendly, supportive and caring they are and she told me that as she went round the office with me, she felt she was going round with royalty the way everyone stopped to say hello and ask how I was.
It was then off to the garage and you will already have seen a picture of Blossom, this one shows my exit route, just remember the driver’s door side was on the road and the windscreen (well where the windscreen used to be) vertical!
Goodness, she was a mess and would need a complete body transplant. I know just how she felt. We then headed home and by this time I was tired, in pain and somewhat away with the fairies. I don’t really remember much of the rest of the day.
I am pretty sure that I tried to book an appointment with my GP on the Tuesday afternoon but our doctors have a system where you ring at 8.00 am on the day you want your appointment. On Wednesday morning Teresa was off to have her hair done at 9.00 am so on the principle that I wanted to get to the GP asap I decided that if I could get an appointment while she was at the hairdressers I would accept it, rather than wait for her to get back, and if it meant I had to wait for her to get back from the hairdressers before I went home, that was all right by me. So, for the third morning in a row we went through the washing and dressing routine.We were getting quite good at it by now, and could do it in about 45 minutes.
We rang the GP at 8.00, got an appointment for 9.30, and Teresa dropped me off at the doctors in St. Just on her way to the hairdressers in Penzance. What I didn’t want to happen was for Teresa to cancel her appointment. This is likely to go on for a long time and I want Teresa to still have her own life, not just be my nursemaid and servant. I have seen (too many) females in my (and other) families being exhausted by males demanding 100% of their time. I will do as much as I can without help and encourage Teresa to do as much social stuff as possible. I want to care for her wellbeing as much as she does mine.
I don’t remember a lot of the doctor’s appointment, but he organised a sick note and changed the pain medication to something that should work better.
So as prescribed by the hospital it was
- 1000 mg paracetamol, every 3 hours
- 500 mg ibuprofen, every 4 hours
- 5 ml of Oromorph as required (but no more than once an hour).
This was changed to
- 1000 mg paracetamol, every 4 hours but I do it twice a day to fit in with the others
- 500 gm Naproxen (morning and evening) this is supposed to be better than Ibuprofen as an anti-inflammatory
- 50 mg Tramadol morning and evening. The Tramadol is a slow-release opiate and should keep the pain under control all of the time. His expectation was that I would start with 50 mg twice a day reducing the Oromorph and after three days go to 100 mg twice a day and no Oromorph. Another advantage of the Tramadol is it doesn’t produce constipation and I could stop taking the laxatives.
I had to wait around at the doctors for about 45 minutes for Teresa, I just couldn’t face the hassle of a taxi, and then we went home. I have to say that that the new drug regime is brilliant and although I have had some bad pain episodes since, in the main it has controlled it very well.
On the CDU I was given a sling that’s clearly meant to be comfortable and easy to put on and take off – something like this. By the Saturday I was starting to get itching in the crook of my arm and a week later I had rash from my wrist all the way up to my shoulder and all the way down my right-hand side to my waist. Clearly, I was allergic to this new-fangled style sling. I can’t take anti-histamines as they conflict with my blood pressure pills, so I needed to get rid of the source. Teresa and I constructed a temporary replacement using a scarf. More on scarves and slings in next weeks thrilling instalment ????.
And so the first week comes to an end…
I am not suggesting my pain meds are ‘right’, but they work for me. I suspect doctors vary with what they think is best so the info above isn’t a recipe, just an explanation of what worked for me.