My fight, my battle, my journey

Day 22: monday 20th august 18: Last night I slept like a log, I didn't sleep with any pyjama bottoms on last night because my bottom and front needed to air (due to the fact my skin was extremely sore and some areas were broken skin). I had a foot massarge and my finger nails painted. The male nurse told me that today my neutrophils are 0.87 so that means I'm not neutrapenic anymore! 😀, the doctors are saying that possibly next week I will be allowed to be discharged home. Today i ate 1 peach muller corner yoghurt. Today also I had a physiotherapy appointment where the physiotherapist came to me on the ward and gave me some exercises to do each day and increase each day. Day 23: tuesday 21st august 18:  Mum and my brother visited today. I also saw my clic Sargent worker who is sending my wish thing off today. I drank a fortisip drink (special build-up drink) and ate 6 chilies cheese bite things from burger king (freshly made). I sat in my red armchair and did my exercises. The

Day 15: monday 13th august 18:  Today I have a feeling my mucusitous is back 😭. A nurse said this morning that my neutrophils are 0.55 which means my immune system is growing again which is a good sign, but she said it's still very early. I had blood taken from my arm today so they can check my tacrolimus levels, my hickman line bled fine this morning again, I had my pre-meds and then had my ambisome IV infusion. My nutrients feed last night was ok, I ate a yoghurt, I'm still got blood in my urine. Later on I ate a vanilla muffin and then ate 1/2 of a chicken tikka and rice meal. The doctor came round and is happy with me, later I ate a tuna and mayo sandwich. The doctors then came round this evening and they said that they happy with me, I told them I feel like I have a sore throat so they are aware. Then later on I ate 1 packet of prawn cocktail crisps , had a strawberry milkshake and ate a yoghurt. Day 16: tuesday 14th August 18:  Last night I didn't sleep a wink last n

Place: quadram institute N&N Time: 9am Came out: 12-30noon (approx)             What happened? At 7am mum attempted to put the enema up my bottom.  0730am I went to the toilet and passed some of what I needed too.  0800am we left to be on our way to the hospital. When I got there I saw a nurse who asked me medical questions and for me to sign my concent forms,etc. I told him I didn't know if the enema mum did worked, due to the fact that hardly any of the enema liquid went in.  He said that if I get in there and it's not clear enough when they put the camera up my bottom then they can enema me again using the flexi-sigmoid camera, but that means they will need to look at how far they can see first before I have any sedation as if I need another enema being sedated would make me wobbley on my feet and sleepy so I wouldn't be able to go to the toilet to clear my bowels. So he put a canula in my right hand and I went into the procedure room. They checked how far they could

Week 5: day 29: Monday 27th october 19: Saw doctors and consultants they said they happy with me. The consultant said "tomorrow physiotherapy needs to see me and start and the eye doctors need to look behind my eyes to see what is going on with my focus". He told me the aim for this week is to get my temperatures down and potentially I could be going home by the end of the week but that's all being well and depending how things go. He said "he won't send me home having tempetures or riggor fits". So that is reassuring me. Week 5: day 30: Tuesday 28th october 19: I saw the consultant and doctors this morning and they once again said they happy with me, and they want me to have a pet scan, when they said that I thought what is it going to show a elephant?? 🤣.. They said they want me to have the test as it may show where my infection is hiding as they haven't managed to find a infection or whatever is making me poorly yet with all the scans and tests they

Week 3: day 15: monday 13th october 19: Saw the doctor who said that my blood count has come up slightly again today, and that my infection marker in my bloods have come down slightly which is good. The nurse ordered me a air mattress as I have a open sore on my bottom. Week 3: day 16: Tuesday 14th October 19: Today I feel slightly better than I felt yesterday, the doctors have said that my bloods have slightly improved again. I'm still having temperatures and riggors though, and today I managed to take some of my tablets unlike yesterday where I couldn't. Week 3: day 17: Wednesday 15th october 19: Last night I had a small riggor and then I spiked another temperature early hours of this morning. At 0910am I i've just had another riggor as my tempeture spiked so I was shaking loads again, so I was given pethadine which makes me stop shaking and calms it all down which is a improvement. I am feeling a bit more better today which is a step in the right direction. I was that th

Week 1: Day 1: monday 30th september 19: Today I came up to the n&n hospital for my normal clinic appointment at 12noon. They checked my obs and bloods which showed i had a slight temperature and my neutrophils are 0. They said in clinic that I needed a platelet transfusion but the platelets wouldnt be at the hospital till about 4pm as they coming from cambridge. When it got to 4pm we went back to clinic and my tempeture had risen to 37.8°c, so the nurses and doctor in clinic decided to admit me to the ward straight away. They weighed me once I wa on the ward which said I weighed 99.3kg and found out my height is 161. The doctors on the ward put me straight back on IV antibodics again as they believe I have a infection that oral antibodics isnt working for and also I'm extremely constipated. The doctors said i need to have something to loosen my bowels so things are easier to pass. Week 1: day 2: tuesday 1st October 19: Today I saw dr professor bowls who said that they are chan

DAY 1: THURSDAY 12TH SEPTEMBER 19: I got admitted about 1pm, saw a nurse who said I may need to have a picc line put in for a temporary period or have a canular put in for a temporary period also, as there was alot of emergancys to have hickman lines fitted and there wasn't a space for me to have mine fitted today. I was really worried about this as my veins aren't that big.  Saw the doctor later who said that my hickman line is booked to be fitted tomorrow morning so I don't need to have a picc line or a canular. Then he said after I've had my line fitted and I'm back on the ward I will be starting my chemotherapy for 10 days. After 10 days of chemotherapy depending how it goes and how my blood counts recover after, etc. Depends on how long I'll have to stay in after chemotherapy it could be up to 2 weeks to 1 month or even possibly longer. But saying that he said I may be able to go home the same day as the last day of chemotherapy. And then when discharged fr

I was in hospital for 6 weeks as the doctors couldn't find out what was wrong. One morning I woke up with really painful hands and feet. As days went on my hands and feet swelled up as well as being extremly painful. They swelled up that much that I couldn't pick up my cup or my phone or a pen or my knife and fork or spoon, etc. The doctors got the rheumatologist to come see me who order a xray to be done on my hands and feet to look at my joints.  The xray cane back normal not showing anything. Some days the nurses would fill my jug up with my juice and stick a straw in it so I could leave the jug sitting on the table but use the straw to drink out of the jug. And that's how I would have a drink as if I attempted to pick up my cup I would of dropped it.  The doctors put me on naproxen for inflamation as it's a anti-inflammatory and to bring down the swelling and allowed me to have oramorph for pain relief, which once they both kicked in things started to feel a little

I was in hospital with a infection or something that was making me extremly poorly which doctors couldn't find. Doctors were pulling there hair out as they had done many tests which were all coming back normal but they hadn't done a pet scan, So the doctors thought it would be worth me having one done to see if it shows up anything.  I had to be NIL by mouth from 10am so I ate my breakfast at 8am and then about 930am I ate a sandwich which I had in the ward fridge. My appointment for the pet scan was at 5pm/530pm for 2 hours so I had to be NIL by mouth till 730pm. So in that time I could only have sips of water. I had a canular fitted on the ward before I went as part of a pet scan is that you have radioactive liquid put in via the canular so it shows up bits and pieces wrong in your body so they can see what is the problem.  It got to 5pm/530pm and a porter came to the ward to take me for my pet scan, I had to have a nurse escort who had to stay with me the whole time i was do

Went to have bloods checked and have my weekly ECG at the n&n ready for my normal appointment. I had the ECG and then went to clinic to have my bloods taken and checked. Dr laws was hanging around 'like a bad smell' (his words not mine). He wasn't himself and he wasn't very talkative, all he said was "let's check your blood results and then we will have a chat ok?". Me and mum sat there and was like we both don't like the sound of this as we both knew that obviously something wasn't right as dr lawes is never like this. He checked my ECG and blood results and both were ok. He then told me that my treatment so far hasn't worked. I burst into tears. He told me that I will be admitted by end of the week to start chemotherapy asap and that in the future I will be having another stem cell transplant. I felt absolutely devastated about this and I cried and cried and cried, it's like my whole world has come crashing down again.

Woke up at 8am, had my medicine, checked my temperature like I do every morning at 0830am it was 37.7°c so I rang the 24/7 emergancy haematology line (which I have to do if my temperature over 37.5°c). The nurse who picked up the phone said to check my temperature in 30 minutes and ring back. 30 minutes later my temperature was 37.4°c rang back the nurse and she told me the doctors wanted to check me over anyways so to come up to the hospital. I noticed that when I went for a wee straight away afterwards it felt like I needed another one and that my bladder was really full when it wasn't and that where my picc line was in my arm it looked like there was puss under the scabs and looked a bit manly and also my right armpit was sore which made me worry as when my hair started to grow back before I ended up having a abscess in my right armpit from a ingrown hair so I told the nurse this aswell. So I got dressed and me and mum made our way to the hospital via our village shop to get som

Day 8: monday 6th august 18: I woke up, every nurse or anyone else that came in my room I kept getting anxious and saying "your not taking me are you?", Mum came up while  I was down having my NJ inserted. About 12noon I finally had it fitted. Mum who was back on the ward waiting in my room for me to come back was getting worried about me as I still wasn't back on the ward at 12:15noon, 5mins later I arrived to my room back on the ward. I was so extremely happy to see mum sat there waiting for me. Having the NJ tube felt strange when I swallowed, when i scrunched my nose or even sneezed. Later on i ate 2 strawberry yoghurts which I actually fancied for once. The ward has a beautician that comes around and she painted my nails. I then tried to  watch a small bit of tv with mum. Later on the doctors decided to try a small amount of ambisome chemo drug again with pre-medication before hand. The nurses came and connected me to a 24/7 tacrolimus infusion via IV pump ready for