Sorry I’ve been a bit quiet of late, I’ve not been feeling myself both physcially and mentally. I’ve found being home quite exhausting and then I got readmitted to hospital, which all led to me not really wanting to talk to anyone! I will try and update you of the highlights over the near 2 week period…..This might be quite a long one, and with no pictures either! Sorry! But I will give headlines so you can skim through!!!
First week back at home
So what have I been up to? I’ve been pretty well restrained as I’ve been quite tired. Just kind of bumming around the house, going for short walks, starting the unpacking process and trying to get settled.
Physically I’ve found my appetite is fairly erratic, I won’t feel like eating anything all day and then suddenly by the evening I’m starving. Also the hardest thing I finding is to drink water, although my Gran’s advice is just to guzzle it down and get it done! Instead of water I’ve taken to drinking coconut water which just feels so much lighter in my stomach, just need to be careful I don’t OD on potassium!! But at least I’m getting some hydration. I’m really tired, and have been sleeping for hours but also find myself just gazing for hours not actually doing anything, but I guess this is to be expected.
Thursday I traveled to Kings for a blood test and NHS wig appointment. Minus getting my wig (will post a picture once it’s been styled) it was a total waste of time! Waited nearly 3 hours just for a blood test by which time the results wouldn’t get back in time to get the doctors to review! Reckon the nurses had a rotten day of being whinged at by patients, but the blood analysers just weren’t working properly that day which set everything back.
At the weekend something wasn’t right…..
After Thursday I was just absolutely exhausted, Its a tiring day getting the train to london and back and getting across to Kings. Also, just being sat around on uncomfortable chairs for ages. Friday/Saturday/Sunday I just had NO energy. I barely wanted to move from the sofa on saturday, I had some low grade fevers (highest of 37.7 but always came down really quickly). Also there was a strange pain and swelling in my neck which was just getting worse and worse. Sunday I decided I couldn’t cope anymore and took myself off for a fun day out at A&E.
Checking into hotel PCH and getting fed up
I ended up getting admitted to PCH with a suspected clot in my neck from my line. I was put on IV antibiotics because of my temperature and booked in for scans. Kings put me on the list to be transferred over to them on tuesday, although luckily (just to avoid the thaff of my mum/dad having to drive down when I’m discharged) this wasn’t necessary.
I was a bit flat when in hospital though, especially having to stay on the MAU (medical assessment ward). Over the last 6 months i have probably only spent a total of 3/4 weeks at home, I know the food menu inside out and nothing inspires me and I was just getting used to being at home. Also my bodies reaction to the clot had taken it out of me, i hadn’t been eating or drinking much and therefore couldn’t really be bothered to do anything. Even knitting/crochet! You know I’m bad when that happens!
After a few days of blood thinners and being moved to haem/onc with my lovely nurses (you don’t know how much difference it makes seeing all the familiar faces) the swelling started to go down, my temperature stayed down and I started to feel better in myself. Although i wasn’t eating or drinking as much as I ought to due to the antibiotics making me feel rotten 😦
Released on Thursday and straight to kings!!
I was released back home thursday evening, but had to go to kings friday for them to give me a once over. We attempted using a taxi to get to the hospital from kings cross but not sure how much walking it really cut out. I still did 8k steps without intending to!! And compared to the 100-200 a day I had been doing in hospital it was a bit of a shock to the body!! Also, my bum hurt from sitting on uncomfortable chairs – I’ve lost all my muscles and padding in my bum, I’m back in my size 6 jeans (now 53kg!!).
Kings were happy with everything and sent me on my way with some extra magnesium tablets (yuck!) to give me a bit of a boost.
Home again and beginning to perk up
I’m still on daily IV antibiotics so had to pay a visit to the hospital to get topped up each day. Even after the marathon to Kings!! Generally though I’m a bit more settled at home and I’m managing to eat and drink a bit more. Although the one thing that isn’t good is that I generally fancy stodge more than I fancy any fruit/veg so not sure how nutritious it all is!! None of it tastes quite right so toast/crisps tends to be my go to snack. My diet at the moment is probably the opposite to what it used to be! ha ha!
Now trying to find things to do this week (organising meeting friends, etc) to give me a bit of focus and keep my mood up!! Fingers crossed I will make it to a week at home this time!!!