Feeling a little broken

So I started this post Saturday night – well in actual fact i started several posts in my head over the last few weeks but just haven’t had the energy to turn on the laptop and write it down properly. I haven’t even had the energy to watch tv or films!

Monday 11th February I was admitted to hospital with a high fever. i had literally been to the hospital the day before for platelets, I was very neutropenic, but my infection marker (CRP) was in the normal range and up until Monday i had felt fine. Luckily I hadn’t had any nasty side effects from the chemo other than fatigue and my blood counts dropping. I had still been managing to walk 2/3 miles most days and do most of my normal activities (as long as not too early in the morning!!)

I was admitted for the night, shoved full of antibiotics and all the standard tests done to check for infection sources. After a few days my CRP was still creeping up but i didn’t have any real symptoms to find the source of infection other than hideous fevers (4 times a day, rigours, usually peaking between 39.5 and 40.4). It wasn’t until thursday/friday that I started with some acute stomach ache (it might have built up but i suffer from indigestion so just ignored it) and horrific joint/muscle pain. This led to an ultrasound scan of my belly to find my gall bladder was inflamed. Swift change of antibiotics and this seemed to calm down.

Then I noticed a few weird spots turning up on my body. It wasn’t until the on call consultant on sunday saw them that we started to suspect something else was going on. They apparently looked a bit fungal like – so we added some antifungals to my cocktail of meds and a CT scan was ordered and finally done on Wednesday!! My consultant hung around till 7pm to get the report so he could put me on a stronger dose of the antifungals.

So I’ve been on the treatment dose of antifungals a few days now and no obvious huge improvments. Still fevers 3/4 times a day with up to a peak of 40.6 degrees. This is leaving me with minimal appetite and exhausted – both mentally and physically. My CRP is bouncing around and showing no improvement. And to finish that off I’m a little bit scared as fungal infections are scary!! They take a long time to treat. So tomorrow is bronchoscopy day………. I’m not going to go into this now as it scares the sh*t out of me and my doctor told me to try not to think about it too much!! HA!!!!!! But will try and update in a few days. Hopefully I will be able to update on a few more of the funny stories of my 2 week stay, but for now this simple update is all my fever fried brain can do.

P.S. 3 days to type this out!!! No apologies for typos!

 

 

 

 

Life on the bay

The waiting game ended on Tuesday afternoon when I found out I had a bed on a four bed bay to start my chemotherapy. Now given how much time I have spent in hospital you might be surprised to know that I have never had to stay in a hospital bay before (I had a double room once for a few days but that was it). I always had my own room, usually down to being neutropenic (low immune system). (To be honest I’m still not convinced being post 2nd transplant that I should have been allowed in a bay – I know I’m not currently neutropenic, but my immune system is still greatly compromised after all the treatment I have had.)

Being in a side room can sometimes feel a bit lonely, but being on a bay feels like the complete opposite!! There are the other patients to chat to. There are always hospital staff coming and going. And between 4 patients someone always seems to have a visitor. At the start of the week this was quite nice way to pass the day, after a few doses of chemo I very much changed my mind!!

If you have been reading my blog a while then you will know that I’ve never really appreciate loads of visitors whilst I’m in hospital. I find chit chat hard work when I’m feeling poorly from infections or chemo. So I usually have very minimal visitors so I can just rest between being harassed (treated…) by nurses/doctors. The time I like to have visitors is when I get home, as it can always get a bit lonely then.

However on the bay I couldn’t choose what went on with the other patients. I had to endure all of their visitors and all the nurses coming to see other patients as well as me. By my final few doses of chemo I was getting headaches, etc and I just wanted to rest but being such a light sleeper it just isn’t possible with all that going on!! Luckily the doctors/nurses arranged that I could have home leave over night so thankfully I was able to get a decent nights rest at home at least. I think I would have lost the plot if I was here over night too!! (Sleep is so precious to me and I really struggle to sleep when sharing a room with friends, let alone a room full of strangers!! I’m a very light sleeper and pretty anxious sleeper – lately at home I have been using quite a lot of sleeping tablets to help me drift off)

Also there is no privacy on a bay!! I know all about bed 17’s drama with loose stools combined with a colostomy bag….. bed 15’s hallucinations……any private conversations involve doctors/nurses pulling the curtains round but I really don’t understand the point in this?? We can still hear every word that is being said! No matter how hard you try not to listen!

But anyway…as I type this my 5th dose of cytarabine is pumping its way into my system. I am very grateful that so far I am suffering with minimal side effects. I’m getting tired and achy and suffering with some headaches…… so kind of a hangover type feeling. The anti-emetics are so far doing their job and I’ve not even really suffered with any nausea so far. My eyes are starting to get a bit gritty and I’ve got some eye drops to help with this. But so far so good!! I’ve even managed to get out for a 2/3 mile dog walk most days which helps keep me sane too!!

Fingers crossed the treatment remains kind to me. One more dose tomorrow morning and then I’m done! Then its the waiting game again to see what other side effects will creep up on me and trips to Kings for clinic and DLI!