On Tuesday, I had an appointment with the specialist nurse at the hospital. The friend who normally accompanies me wasn’t available, so I drove myself.
I was told that my neutrophil count is now within normal range, so it’s ok for me to go out in public without a mask, although probably best to avoid crowds. I can also wear contact lenses again, as long as my eyes don’t feel too dry. They don’t! And it’s ok that I’m not taking some of the medication prescribed. The ones I need I am taking: Penicillin, Aciclovir and Omeprazole. As far as I’m concerned the less medication I need to take the better.
I asked about the possible length of remission following the SCT and was told it’s generally anything from 18 months to 5 years. If/when the relapse comes, there is further treatment available – Velcade injections. Nonetheless, such a short time only increased my sense of gloom.
I asked about feeling depressed and Sarah said that it is quite common and as I get back to my normal life, I will start to feel better. I just don’t feel I have the energy to do the things I would normally do, but I dare say that will come in time.
We arranged for the Hickman line to be taken out next week, and I will see the consultant the following week.
On Wednesday evening, I went to the movies to see The Guard. I didn’t find it as hilarious as the hype suggested, but it was ok and I was just glad to go out.
On Thursday, I went in search of a new shower riser rail, as the bracket on mine had broken while I was in hospital. I found one at the second shop I tried. When I got home, I felt quite tired and a bit shivery. The shiveriness continued all evening, so when I went to bed, I took my temperature and it was 38.2. Following instructions for if my temperature is over 38, I called the Haematology Bleep number. The nurse took all my details and went off to speak to the Registrar. She called me back a few minutes later and asked me to come into hospital, to the Specialist Receiving Unit. Oh no!!!!!! I SO didn’t want to go back into hospital. 😦
I got dressed and packed minimally, but made sure to bring my laptop. My friend drove me and stayed with me for some time while the nurses came and went with questions and doing observations. I just wanted to sleep.
Despite having a Hickman line, because I wasn’t on a Haematology ward, there was no one trained to use it. They said they could ask for someone trained to come, but it could take quite some time if they were busy and it was important to get the antibiotic into me as soon as possible. So I had to have a cannula in my wrist. Fortunately, the nurse who inserted it was very good – she managed to get it in first time and I barely felt it.
They’ve given me IV antibiotics and I was monitored through the night with hourly observations for the first few hours. Interrupted sleep does not make me a happy bunny.
It’s Friday morning and my temperature is back down to normal. I am now waiting for the Haematology Registrar to come and see me and really hoping they’ll send me home today. I’ve had more than enough of being in hospital for quite some time. I can’t bear the thought of having to come back if my temperature spikes again.
I had a visit from Prof Russell (a bit more than a Registrar!), who was quite charming, but told me I will definitely be staying in overnight and possibly through till Sunday. Bugger! He also said they’d do their best to get me moved over to one of the Haematology wards, but so far there isn’t a bed available.
Later on I had to go for an x-ray. I let the porter take me in a wheelchair, while my friend walked alongside us. After the x-ray though, I wanted to walk back, pushing the wheelchair so I had something to lean on. They let me go as my friend was with me. It’s quite a way, so after the long corridor and lift, my friend insisted I get back in the chair. We had a laugh as she pushed me fast along the final corridor. We didn’t manage to run anyone over… Shame! 😉