I was picked up early Friday from home by the North Wales Ambulance Taxi to take me to the Royal Liverpool hospital. Arrived about 9:45 ish. I had to go up to 10z first before going to G-Clinic. 10z is on the the tenth floor and G-Clinic is on the Ground. I only had to wait about 30 minutes in 10z to get my bloods taken. I was waiting for with someone else called Robert who I had a good chat with. I was encouraged when he asked me how long ago it was since my transplant, when I told him and his wife, they were shocked and thought it was about three months ago. He said that he was much worse than I am when he came out and he was similar to me and didn’t have any infections or sore throat/mouth. So that made me feel a bit better.
I’ve still been in a lot of pain with my shoulder and explained that to the nurse at the hospital, but they can’t really do anything and I needed to discuss it with the doctor when I got to see them in G-Clinic later.
The nurse took my blood and then gave me the vials and paper work to take down with me to G-clinc. So off I went down in the lift again to G-clinic. registered in and handed over my bloods, which were promptly given to a nurse who took them straight over to the department to get the results. This process normally takes about an hour for the results to come back, so I went and sat down and started to twiddle my thumbs knowing that I was in for a wait.
Robert came down about 20 minutes later and I saw some other familiar faces, I managed to catch up with Marilyn, who if you remember was the person I had my extraction process with, she was also having her engraftment at the same time as me, although she went in a week earlier. She came into G-Clinic after me and was seen before me as well, so was Robert and goodness knows how many other people came and went and I was still waiting. I asked the nurses if my blood results were back yet, but they were still waiting. There was one point were the doctors couldn’t see anyone as the blood results weren’t back. The nurses were trying there best to chase up where they were, even going down to the department with a list of names that they were waiting for.
The time was ticking away. The ambulance taxi driver and already informed me that he had to go and do some other jobs and had text me to let me know that he would be picking me up at 1pm. Plenty of time I thought, but looking at the time it was creeping towards 12pm, keep in mind I hadn’t had anything to eat or drink all morning as well, not that I was feeling up to eating much anyway, I couldn’t eat my breakfast in the morning as I felt a bit sick.
So by this time my thumbs are quite sore from all of the twiddling that I was doing. If I had the energy to get angry I would have done by now as even the people that hadn’t had their bloods returns and lab chased up had been seen. I’d received a phone call from Tony the ambulance man saying that he would be with me in 5 minutes. Yes it was 1pm now! I told him I shouldn’t be too long now as my folder was the last one on the desk so I had to be going in soon. He was shocked that I hadn’t even been seen yet (not as much as me).
I finally got in to see Gillian, who is the registrar (a specialist doctor assisting the chief specialist) and I complained to her about the 3 hour wait. She apologised and agreed it was ridiculous and explained that the lab had misplaced my bloods and showed me a printout that she had been given. They don’t normally get a printout, so she knew something had gone amiss. I knew it wasn’t her fault though as I was aware of the nurses trying desperately to find the results for myself and the other patients. It’s just typical though that mine had to be the one they completely misplace!
Anyway my bloods are OK and I didn’t need to have any blood transfusions, which is good, as I’ve managed to avoid them up to now. I get on well with Gillian as I have seen her a number of time and she was the one who took my Hickman line out and stitched me up (literally) afterwards. She has a good sense of humour and will always try and find out what is causing the problems. She’s also the one who made me the soup while I was in hospital. She asked me about the pain in my arms. It’s got worse, it isn’t so much both my arms now, but my right arm is very painful. She examined me again and did the usual pushing and pulling test. She was concerned that I now have no feeling in the top of my right arm and she didn’t think it was anything to do with my myeloma or the transplant, but that I may have a trapped nerve. I had to do some test with moving my head up and down and left and right to see if that caused me any pain, which it didn’t. She is arranging for me to have an MRI scan as I haven’t had one before and it will show up any problems. The normal course of action it to have an x-ray prior to MRI, which she wanted me to have then, which would mean another wait. I told her the taxi was waiting, but I agreed that if it needs to be done then he will have to wait or arrange to collect me later.
I also went through a list of questions that I had, one of them being about the stitches being removed. She said she would do it, but she didn’t have the equipment with her so would I be able to go back up to 10z and ask someone there to do it. I also need some more tablets which she gave me a prescription for. I’m going to be trying the Septrin tablets again, if you remember these were the ones they thought were causing the rash and itchiness, but actually it was the allopurinol. If I start to come out in a rash I obviously need to stop taking them. Not sure if I need to keep up with the pentamidine now though if I am taking the Septrin tablets, I will need to ask that next time.
Anyway …. So I was supposed to have x-ray, get stitches removed, get a prescription made up at pharmacy and explain to the ambulance man that he would have to wait! Thankfully Gillian changed her mind about the x-ray. It is a formality she said as she would be asked why she has arranged an expensive MRI scan without having an x-ray first, but she said she would deal with that. So that made it easier for me.
So after getting my blood forms for next Friday and handing in my forms to the receptionist to arrange next appointment I went upstairs to the pharmacy. Bumped into Tony the ambulance taxi drive and explained that I wouldn’t be too long (I hoped) dropped off the prescription, went down the escalator again, jumped in the lift (ok walked slowly) back up to 10z, didn’t have to wait too long, about 10 minutes, but felt like 20. No problem with stitches coming out, stung a little with one of them, but only slightly. Then back down the lift, up the escalator, nipped into smiths to buy a drink, before I collapsed. Picked up the prescription and back down escalators to meet Tony outside in the Ambulance car park.
Phew at last on the way home. Drank my drink in the car and chatted to Tony. Found out that they are all voluntary and they just claim back their expenses for petrol and tunnel fees. They do it because they enjoy helping others and meeting people. How wonderful is that, it’s good to know that there are still some kind genuine people out there.
Got home and Pilar (sister in law) made me some soup and a coffee. I was definitely ready for that! Fell asleep on the sofa for a couple of hours as I was totally shattered. Had some tea and took some more pain killers before trying to go to bed.
I woke up at 3am in terrible pain again, the tablets had worn off. Went down stairs and took some more. Sat around for a about 15 minutes as I was in too much pain to do anything else. I felt a bit sick as well, not sure if that was because of the pain or just because of the treatment, as I felt sick in the morning with my breakfast. I needed the loo, so decided to go back up stairs. As I was feeling a bit sick, I decided to take up one of the grey cardboard bowls that I got from the hospital (I took two home with me in case I was sick in the car on the way home). No sooner had I sat down on the toilet as I started to throw up, quite a bit! Charito got up and made sure I was ok and after cleaning up and brushing my teeth, sat on the bed for another 15 minutes or so, decided to try and lie down again. I couldn’t take any more pain killers, as I wasn’t sure how much my body had absorbed from the last lot I took before throwing them back up.
Didn’t get much sleep and got up and had my shower at 7am, came down and took some more pain killers. At the moment I’m feeling OK and as long as the pain keeps away, I’m doing really well.
If it is a trapped nerve, I’m hoping it will move out soon, not sure when the MRI appointment will come through, but Gillian seems to think it will be after next week. Until then I will just have to keep taking pain killers and putting up with it.