One of my friends left the BBC today so I should be enjoying a glass of bubbly at his leaving party, instead I’m sat in bed sulking and feeling pretty miserable. I’m back in the same hospital and the same ward as I was 18 months ago when I was fighting cancer.
..Oh my god, the guy on whatever BBC antiques programme that’s currently on TV at the moment looks like Vladimir Putin. Poor bugger…
Anyway.. I’m in because I’ve been hit down with a nasty infection which my doctors believe have caused a multitude of other issues.. Think ‘buy one, get one free’. I have renal infections so we’re talking kidney and bladder here. I also have a low haemoglobin count which meant I’ve had nasty headaches and constant tiredness, I also have e-coil and cloudy vision in both eyes. All the above has caused nasty temperature spikes as well and the inability for me to sleep very much. My symptoms started over a week ago but has really ramped up over the last few days. At the moment, I’m on a 24/7 fluid trip and twice daily IV antibiotic drip.
Feeling quite miserable and extremely tired. Today I woke up with a very sore neck, shoulders and back due to the uncomfortable bed. My sleep was broken up with trips to the toilet as I have constant fluid being pumped into me and at 3am I was woken up to go for a CT scan of my brain and head. I’m also bored still and desperately hoping I can go home soon but I have a feeling I’m here for a few more days.
When I was admitted, I was absolutely distraught. I’ve managed to stay out of hospital for nearly 18 months and hearing the news depressed me. When I got to the ward, it felt like a nightmare. I remember every single thing about the ward – the sights and clinical smells brought everything I felt when I was in here in 2012 and 2013 back. It was like having horrific flashbacks. I have an amazing view from my room, I can see The Shard, the London Eye, St Paul’s Cathedral etc but this view has haunted me ever since I got here. Over 18 months ago I was desperately ill, unable to leave my room and stared at that view – I felt like that person all over again.
As as the nurses here are great and the facilities are world class, it’s a place that’s full of ghosts. It made me realised how much my time here still torments me.
So please send me good thoughts and pray I’m allowed home soon.
I’ve been meaning to blog for a couple of days, but the last few days, focus has been a huge issue and fatigue is still with me. I’m still exhausted today but I really must let you know how I’m doing.
If you’ve read Ade’s comments on my last blog, you will know that my counts and my neutrophils actually came up a day after I published. I went from have 0 neutrophils to 0.39. The day after, they went up to 2.25, yesterday they were up to 7.39. Today they have dropped down to 4, but this is completely normal and still excellent. The doctors and nurses were amazed and we’re delighted. This means that the donor stem cells are grafting and producing all my new cells. It’s still early days and I’m still at risk of Graft V Host Disease, but this is a great start.
Yesterday, one of the transplant doctors came to see me and he explained why I need to remain in hospital for the time being. They need to ensure my counts stay up and above 1, and also to monitor the Cyclosporine (immunosuppressant) in my body. He also wanted to make sure I don’t need any more drugs through IV. As of now, all my drugs are in pill form and my levels seem ok. The doctor also said that if my progress continues, he can’t see why I shouldn’t be discharged by the weekend. If I am, it means my hospital stay would only be 3 and a half weeks instead of the predicted 5 weeks – which for a allogeneic (donor) transplant, is somewhat of a record. To say I’m delighted is an understatement but at the same time I don’t want to get my hopes up in case something goes wrong and I have to stay in.
Apart from that, I’ve been bored stiff. I have books, messages, emails to catch up on but I’m finding it hard to focus. I’m not sleeping very well at night either. Last night I managed about 3 hours sleep on and off which was better than the night before where I actually saw every hour, it’s extremely frustrating and leaves me even more tired during the day. I’m ready to go home and sleep in my own bed. My fluid retention has got better too, my face and hands still feel a little swollen but hoping in a day, everything will go back to normal. I’ve been taking regular walks around the ward too to get my legs moving and it’s incredible how that takes so much out of me, but I have to persevere and do this so I can get some independence back a bit quicker. I couldn’t cope with going home and having to have everything done for me but at the same time I need to know my limits and maybe ease up on my stubbornness and accept help.
When I know when I can go home, I’ll write again, but in the meantime, here’s a shameless plug! My husband is taking part in the Tough Mudder this weekend to raise money for a charity that has helped me so much – Lymphoma Association. If you can even spare a quid, please sponsor him! He’s doing this insane challenge for an amazing cause, plus he’s an amazing man who has stood by me and been my rock from the moment we got that awful news. Thanks in advance and here’s the link:
Love to you all!