Another week in hospital!!
I went to bed after everyone went home as not surprisingly, I was very tired but I had also developed a lot of liver pain and general back/hip pain so took oromorph. dihydrocodeine and diazepam and slept. Not that I felt much better when I woke - yes, it is possible to wake up after that combo and only after about 3 hours as well!!!
The liver pain was worsening and going up my back and as for the nerve effect on my bladder and bowels, I could delay no longer and phoned the chemo helpline and of course, got admitted straight away. Well, I was once we'd got over a miscommunication problem over who was taking me to hospital and who was looking after the children!!!
We arrived at the hospital about 530pm and got a bed in the cancer ward I'd not been in for the last 2 years. All the staff had changed but the reluctant to refill toilet hadn't. I went down for an urgent MRI later that night that showed thankfully, that there was no nerves being crushed by a collapsing spine or any further growth in any other vertebrae which was a relief. So this lump I feel when I sit/lay down in the bath is just my tailbone(coccyx)!! I never have felt it before until recently but then the last time I was this weight or even a stone lighter, I was very fit so I must have been sitting on muscle and now I've got a peculiarly shaped, flat, floppy bum instead of a large, rounded one with muscle and later on fat!!
I saw the junior doctor who eventually managed to get all my tablets written down correctly apart from only prescribing a very small amount of oromorph. Makes sense - come in with worsening and uncontrolled pain and then being prescribed less painkillers than I was having at home!!! Suffice to say, I did not sleep well that night.
Saturday and about 4pm, I eventually saw a registrar who just about glanced at me and my notes and that was that.
Sunday - saw no medical staff at all but was referred to the physio, pain team and dietician.
Monday - saw no doctors, physio, pain team or dietician. I went into the chemo clinic to ensure I didn't get forgotten about and had my chemo on thursday and reassured that it would all go ahead as planned. Really making progress here aren't i!!
Tuesday - hurray - I saw the physio and the pain team who put my pain killing medicines back to what I was taking at home and increased my oromorph to a level that would work. Then the registar from my team came who had just returned from 6 months maternity leave so lovely to see her but a lot has happened to me in 6 months. She said that I'd been admitted under the neuro team on friday and although on a cancer ward, they'd forgotten to refer me!!! I did have an xray of my tummy and they gave me 16mg dexamethasone to reduce the pain and swelling in my liver. The xray showed I was constipated - I knew that already but never mind.
Wednesday - the dexamethasone (steroid) has definately improved my liver pain and swelling and don't even feel manic. Was seen by one of my consultants who specialises in radiotherapy and have only one very small dose of radiotherapy left for my spine so don't want to use that option up now. Reduced my dex to 8mg so pleased as steroids have such awful side effects and to be on reducing doses. Saw the dietician who was pleased with my blood results and weight and muscle gain but said I needed to have at least 1 fortisip/forticreme a day and not to have a low fat diet but just a normal one but have high protein foods. I can eat the forticreme things as they are a bit like a mousse but the drinks make me feel sick and I'm sure I now have developed a milk intolerance as pain etc worse if have too milky foods.
Thursday - chemo day. Saw the breast care nurse who would be in clinic, the chemo sister, the pharmacist and the receptionists and told to go down about my appointment time of 11am. I went down and was told to go back to the ward as the team would see me on the ward and have the chemo on the ward. Went back again about noon and 130pm and 230pm and told the same thing. The ward nurses were also told the same thing. By 330pm, I was getting worried and anxious. I knew the clinic finished about 2pm and the doctors go onto meetings about 3pm and unless the chemo drugs were authorised by the someone at registrar level or above by 3pm, pharmacy wouldn't make it up and the nurses would run out of time to give it to me. So guess what happens - nothing!!! Apparently, I was told at noon to sit in the waiting room and I would be seen next and then I disappeared. That was not what I remembered hearing and anyway, I was only 100m away round the corner in the ward and they have telephones so could have checked if I was around so why did they leave it?? Mum and I got very distraught but nothing could be done so had to wait until friday.
Trying to look on the brightside, the pain team came back and have now changed to 60mg slow release morphine (MST) and they wanted me to stay in the night to make sure i was OK on that dose so even if I'd had the chemo I would still have needed to stay in!!!
Friday - I saw my chief oncologist first thing. He said I was the first person at my hospital to have weekly taxol after the gem/carbo as usually women were too poorly to tolerate anymore chemo so I was a bit of an experiment. We had a good discussion about how herceptin has got me this far and how well I was doing and they hoped I would get to the 18 week mark and then review. He had no idea why I was having the problems I was having but plan to continue on the lower dose I've been having for the last 2 weeks. He had no idea why I wasn't seen yesterday but said usually if on ward then aren't seen in clinic!!! I just gave up.
After being told to go to the clinic area and then stay on ward to have chemo, at noon, they called me down to the day chemo ward which meant I had a bed to lie on and I got my ward dinner rather than manky sandwiches. Eventually had my chemo and came home so now only 6 days between chemos. Pain seems better anyway.
Sorry for the delay in letting you all know what happened in the last 2 weeks - I had asked Magnolia to let you know where I was but think she was busy at college or something!!!!!