Wednesday May 20 - Sunday May 24. More Transfusions, Lincoln and the Anthony Nolan Register

Looks like I have a sock puppet.

Wednesday was a non-hospital day. I went for a really nice meal with my mum and sister.


Thursday I was back at hospital for a few transfusions. I went through the usual procedure of blood tests being taken from me and a cannula inserted into the crook of my arm. I was told that my platelet count was 11, normal is roughly 150. I think the highest mine has been since all this started was 30.
The nurses told me that I had an hour or so to kill before the transfusions would be ready so they gave me some sleeve thing to go over my cannula, and I headed off to a cafe by the station with my mum for a bit. I also asked to see the wards/rooms that I would be staying in when I am in hospital for a few weeks undergoing my ACG treatment. The rooms looked fairly small, but had WiFi (wooo), I will effectively be in quarantine and to enter my room requires people to scrub up before hand and to wear aprons and gloves. I'm not currently sure how easy it would be to have visitors.

Once we were back at the hospital I was pumped full of medication for my platelet transfusion to make sure that I didn't have a reaction. The medication makes you really drowsy and it can be hard to concentrate and focus. Platelets take about 30-40 minutes before they finish, soon after I was brought my first of two units of blood, each one takes a couple of hours which makes the whole process very boring. Thankfully there was very little wait between each unit and I was out of hospital by 7pm.


Not much happened Friday, I'm getting used to staying in and being in bed by 11pm. I'm starting to feel old, even my sister is going out to parties and staying out later than me.

Saturday was an early start as my parents and I were heading to my student house in Lincoln to pack up all my stuff. It was great to see my housemates and a lot of my friends who were still at Lincoln. They helped me pack and clear out my room and we had a couple of hours in the student bar before I had to start leaving. It felt weird properly leaving Lincoln and all my mates, officially moved out of my house and yet I still haven't finished my course.

Look at that lovely bunch.

Sunday was a lazy day. I saw my mate Suneel, watched football and had a glorious roast.


In the last few weeks I have been receiving countless texts and messages, even from people who I have never met, it's amazed me how considerate and caring the majority of people are. A common pattern among these messages is that people want to know how to donate blood, bone marrow, everything. I've been surprised by how selfless people are.
If people do genuinely want to try and help, a great thing to do is get on to the Anthony Nolan register. This is a register that connects people all over the world in their search for bone marrow matches and donors. To do this please go on the Anthony Nolan website (www.anthonynolan.org), from there you can sign up to become a bone marrow donor. All it requires is answering a few simple questions and the organisation will send you a spit kit. You just have to spit in the equipment provided and send it back to them. It is extremely unlikely that you can donate straight to me, but there is a chance that you could help someone else, and requires very little effort on the part of the donor.
You can also donate blood, or platelets. This just requires a quick google search to find your closest donation center and any information needed. I think I'm draining the NHS of its supplies.
I'm very grateful to all who have done any of this, and contacted me for information etc and who knows, maybe it will come to me. I'm always looking for fresh blood.
Thanks especially to Tom, Chris, Olly and Anna who have already done this. Amazing.

Absolute star.

Saturday May 16 - Tuesday May 19. Finally officially diagnosed.

I spent most of Saturday in the beer garden of my local pub with Tom and Sam, before heading back for some Fifa at mine. Sunday was the same as all my Sundays are, football and a roast.


I was up by 07:15 Monday morning in order to start getting ready for the hospital. My mum and I got a cab to the station and got a train to King's at Denmark Hill arriving at 09:00. First I had my blood tests, which I now expect as soon as I arrive at hospital. We then waited for our appointment with the doctors where I should hopefully be officially diagnosed.

We were soon taken into a room where there were were two doctors, one who had flown over from Canada as well as my clinical Nurse Nana, she is absolutely lovely. I was asked the usual questions of 'How are you feeling?', 'Have you been having any problems?' etc before the meeting properly started. They began by telling me what it is that I have been diagnosed with, which is aplastic anaemia. I had expected this. There are three classifications of this illness; non-severe, severe and very severe. Mine falls between severe and very severe. Apparently my illness is very rare, with about 2 or 3 people a year getting it in the UK.

The booklet doesn't get cheerier.

I was then told about the possible treatments, sadly my sister's wasn't a bone marrow match with me. She should have tried harder in my opinion, #letdown. This means that the hospital would have to try and find a match for me via the Anthony Nolan register which could take months, and seeing as my immune system is extremely low there is the possibility that I could get a potentially dangerous infection during this waiting period. As such I will instead be getting a drug treatment called 'ATG'. This means that I will be in hospital for a few weeks receiving treatment, some of the possible side affects aren't great but could make for some really cool pictures. King's are hoping to begin this treatment as soon as possible, likely to be in the next fortnight, so the beginning of June. But before then I need to have lots of organ scans to make sure my body can cope with what is going to happen.

The way I've understood the course, in it's simplest terms, without getting techinical about all the stuff going into me (apparently a lot of it is horse. Seriously. Horse.). 7 out of 10 people finish the course, and of that 7, 20% of them it doesn't work for at all. So the odds are in my favour which is good. I will be in hospital for roughly 3 weeks, as most reactions happen in the 2nd or 3rd week. I will then be going back to being an outpatient, visiting hospital 2 or 3 (maybe more) times a week. 3 months after the treatment is done, the doctors will know for certain whether it is working or not. It's a cure of sorts, but its not called a cure as the old ill cells will still be in me, but I will have new antibodies. This is of course if it all goes well, there is still a chance regardless that I may have to have a bone marrow transplant as well, but hopefully this will all go well.
I think I have explained all this correctly.

PS3 taking the piss out of my transfusions. HP+1

After all this fun, my mum and I went for a meal before going home where I played PS3 for the rest of the day.


Today I've been writing this and have no plans bar chilling out.

On Saturday I will be back in Lincoln to collect the rest of my stuff from my house which I am really looking forward to.







I would like to take this time to point out how terrible a prediction my mate Chris made on New Years day. I'm not convinced this prediction could have been any more wrong.

His balls lied.

Monday May 11 - Friday May 15. More needles and transfusions

They put a bag straight over it:(

Currently I'm having to go hospital two or three times a week to have continuous blood tests and transfusions.

Monday I was at hospital being prodded by more needles. The amount of blood samples I've had removed are uncountable by this point. I was asked if I would allow a trainee nurse to attempt to jab me with a needle to take blood and insert a cannula (when I've been saying catheter, I've meant cannula) into me. So I agreed, as I would like to try and help when I can. I didn't make it easy for him though as he was struggling to find anywhere to jab me, as there are lots of marks on my arms from where I've had needles and he didn't want to weaken the vein walls. So attempted to go for my hand which is a bit more painful, sadly he missed the vein so I had to have to someone else come over to do it for him, she managed to find a decent place in my arm. My hand ended up swelling quite large for an hour or so which was funny.

Look at this monster!

A couple of hours after my blood samples were taken, I was given another bag of platelets. About five minutes after the platelets were hooked into me I started going really weird and having a reaction to them. I went all red and was struggling to breathe and my stomach hurt, but I didn't throw up which is good. I got unplugged from it and a load of medication was put into me to prevent reactions, which I now have to have before any unit of platelets. Not too long after, the platelets were reinserted back into me and there was no trouble. Once the platelets was finished they were unhooked from my cannula but a load of blood came up through the cannula and went all over my arm and leg, but thankfully missed my new trainers, so that's good. I was also given a new tablet to take which is basically calcium which I have to chew. It's not particularly nice.


I didn't really do anything on Tuesday and Wednesday. Wednesday was probably the hardest day that I've had personally since I originally became ill. This was the day that I would have been finishing university. The rest of my friends and English course were taking their final exam and posting on facebook, twitter, snapchat, instagram etc about finishing university which was tough as I don't know when I'll be finishing. It's unlikely to be this year. But I am pleased for everyone and hopefully I'll be doing the same at some point.

#Brave 

I was back at hospital on Thursday for, you guessed it, more blood tests. When the blood test tubes were removed from my cannula, some excess blood pumped through again and went all over the pillow. So I got a new pillow. Win Win.
I ended up having to have a 3 and a half hour wait for another unit of platelets. I was filled up with medication before I was rigged into the unit and didn't have any reaction. You'll also be proud to know that I requested not to have a bag over the platelets because I'm so brave. I am now a man who can take his platelets without them having to be hid behind a paper bag. I'm making giant leaps.


Friday was spent lounging around before my mate Simon arrived for some strong Fifa sessions and pizza. #Lad


The next time I am at hospital will be on Monday where I am to expect a very long and serious meeting. And hopefully will finally be diagnosed with whatever it is that I have. I already know what it is likely to be. I haven't wanted to say what it may or may not be as I don't want to tempt fate. There are 3 illnesses that it may be, none of them are particularly great. Hopefully in my next post I will know for sure what it is, I do know that I will be needing a bone marrow/stem cell transplant. At the moment I am in a strange kind of limbo where it is all a bit confused.

My thoughts regarding the upcoming Monday.

Wednesday May 6 - Sunday May 10. Blood transfusions, visitors and a fun bone marrow test.

Look at dem bad boiz

Wednesday was a day of shopping, seeing as I will no longer be going to a festival this summer my parents kindly got me some belated 21st birthday presents.


Thursday was a busy day. Arriving at King's Hospital around 10:00, I was met by a doctor who proceeded to discuss the bone marrow test that I would be having shortly. I previously had a bone marrow test the day after I was admitted to Lincoln County Hospital, but King's wanted to perform their own tests and be in full control. The process would be a needle punching through my bone and taking samples from inside, as well as taking a physical part of my bone marrow too. I was then asked if I would allow for extra samples to be taken from me for research purposes, including a sample of my skin. I of course accepted. If there's any chance I can help others in a similar position and help doctors learn more about illnesses then I want to do it,

Some of the blood from the test

I was then taken into a room and had to lie on my side with my knees to my chest. This time the biopsy would be taken from the left side of my hip as the bone marrow test at Lincoln was taken from my right side. They began with applying a hell of a lot of anesthetic, sadly I wouldn't be getting any Gas&Air this time. After the anesthetic, I had the skin/tissue sample taken. This involved the doctor using a scalpel and carving out a small part of skin. It's a bizarre sensation as I could feel the scalpel cutting into me, and I could even hear it, like when you can hear yourself chewing but no one else can, Then came the bone marrow test, it takes a lot to get a needle through bone, and its really strange having someone applying so much pressure to yourself and eventually suddenly breaking through, which was slightly painful. It then vacuums up the liquid within your bone which was a really uncomfortable feeling, I could also feel blood running down my back during the test which is strange as it takes a moment to click before you realise what it is. For the part where a piece of my marrow had to be removed, it had to be twisted 360 degrees in both directions by a straining nurse before it was finally yanked out of me.

Get your samples out.

I'm pretty sure my mum who was in the room with me was in a lot more pain than I was, and I don't think she found me making jokes and laughing during the biopsy that funny.

Following the test, I had several more blood samples taken and a long wait for a blood transfusions, which was made more bearable by having a visitor from university. Cheers Jui for sitting around in extreme boredom with me while I waited for blood.
Soon after Jui left I finally had a unit of blood provided for me and eventually left the hospital at 7pm, meaning that I had been at King's for 9 hours.


Friday was a bad day for lots of reasons, I was struggling to sit properly due to the ache in my hip, but like a lot of people I woke up to the disappointing news of 5 more years of Tory government. Hopefully this won't affect my treatment at the wonderful NHS.
I was back at hospital by 11am to receive my 7th unit of blood and was then allowed to go home for the weekend. I wont be back at hospital again till Monday.

7th unit.

On Saturday Freddie and Olly from university came down to visit me at home which was great to see them again. We played some table tennis and headed down to the local pub for a few drinks (I'm allowed to have the odd drink, just can't get drunk). A couple of other lads from home met us there and we all sat in the sun in the beer garden. After that the three of us went back to mine for a curry before we said our goodbyes.


Today has been a lazy day, spent watching football and having a roast dinner. I'm back to hospital tomorrow.

Ooooo table tennis fwends

Friday May 1 - Tuesday May 5. King's Hospital

Blood tests

On Friday morning I left home with my family and went by train to King's College Hospital.  The 'team' treating me seemed shocked that in the 6 days between being admitted to Lincoln County Hospital and leaving there on Thursday I had had a total of 5 units of blood and 2 units of platelets (not including the one where I freaked out, threw up and almost passed out. #Yolo). As expected I had the usual blood tests as well as having an uncountable amount of blood samples taken to be put through multiple tests from which I should know the results on May 18. There was a point where I felt I was going to pass out seeing as my blood was already really low before they decided to drain me for all these tests, due to this I was put into a nice reclining chair and given a hot chocolate. Living the dream.
I had a meeting with a doctor and nurse that I will be dealing with over the next several months. This meeting consisted of some physical examinations and a looooong talk. I don't want to say yet what seems most likely or less likely in relation to what I have as I don't want to tempt providence. However it does look like I will be needing a bone marrow transplant.

Vultures at uni have already stolen my room

I had more x-rays done and an ECG test where I have loads of mini magnet things stuck all over my chest which was weird.
King's hospital seemed really nice and I can see why it comes so highly respected and recommended and the staff were extremely dedicated and highly trained.


I wasn't required to stay overnight so I was able to go home that evening. Over the weekend and bank holiday I saw a couple of friends from home and had a glorious curry. Watched a lot of football and ate a lot of food.
 


Today I headed back to King's with my mum and sister. My sister Grace, was there to have a blood test. From the blood tests we would be able to know whether Grace will be a bone marrow match for me.
After Grace's blood test I had a catheter (canula) put into me again where I had several more blood samples taken from me. After these samples were taken I was told that I would be receiving a unit of platelets. My blood count is currently at 84, which isn't too bad seeing as it was 89 on Friday, this shows that my blood count isn't going down too quickly. I haven't had a unit of blood since last week Tuesday (April 28) when I left Lincoln County Hospital. My platelets on the other hand are still very low and drop much faster than my blood count. What platelets basically do is help clog up and stop bleeding. As mine are low I can lose a lot of blood from cuts, but hopefully this shouldn't be too much of a problem as generally I try to avoid being cut. While I was waiting for my platelets to be ready Grace went home to carry on revising for her AS levels.

Having the time of her life.

As requested I had a bag over my platelets due to me being such a wuss, I then spent the next half hour reading while the platelets went in.

I will be back at hospital on Thursday in order to have more blood tests and another bone marrow test, which I am dreading redoing. The last bone marrow test I had, despite at times being painful was alright. This was because I was ignorant to the whole thing and had close to no idea what was going on, I also only knew about it roughly half an hour before it began. This time I know what to expect, there is a lot more to dread, if that makes sense, so I'm looking forward to embarrassing myself in front of my mum and the staff on Thursday,

Monday-Friday morning (1st May) - more transfusions and going home.

Olly has Gurn for days

I spent a lot of time playing with the bed controls on Monday as I waited on the results of a meeting about me. Around 3pm my two doctors, Dr Pavel and Dr Caroline who have both been outstanding, returned to my room to talk to me. They stated that they had narrowed my diagnosis down to two possible illnesses and have almost ruled out a possible 3rd diagnosis.

I'm so handsome

More friends arrived that afternoon staying till 9ish when the nurses started coming in to hook me up into another unit of blood. My friend Olly (see the gurner) has since Thursday practically been my manservant doing every little job that I needed doing, brought up a suitcase of my stuff as I would be travelling back to London on Tuesday. After my mates had left I had to just sit there with my arm connected to a sack of blood. It's surprisingly difficult having to move the machine with you to the bathroom to have a piss. Once the bag of blood was emptied of its delicious life giving liquid I was unplugged from the machine and allowed to sleep till Tuesday morning when I would be receiving more blood and another unit of platelets. Fuuuuuun.

Ignorance is bliss.

I was woken up fairly early for what felt like my 100th blood tests and pressure tests before a unit of platelets with a paper bag over them so I didn't freak out again was rolled in. Unlike the blood units which take 2-3 hours to empty into me, the platelets take around 30 minutes or so. Soon after the platelets were removed a couple more friends came up to see me before I headed home. One of which, I won't name names, was getting seriously freaked out by the bag of blood that was now getting wired into me. I probably shouldn't have spent time pointing out how you can see the blood dripping from the bag into the wire. But it was funny, so I did. Drip. Drip. Drip.

Just before I left the nurses had to remove the catheter from my arm. This would normally be a painless experience. But as a man with hairy arms this was the worst experience since I'd arrived on Thursday. Absolute agony as all my hair was ripped off with cellotape by a laughing nurse. 

At 2pm the cab arrived to take me home, so I said my goodbyes and settled in for the long journey home. As disappointed as I am to be home as it means that I really am leaving university and my university friends, it was good to see my family and have a proper, nice, comfy bed.

Mark and I doing the goodbye jig

Wednesday and Thursday were nothing days. I just lazed around the house and received the odd phonecall from hospitals about my appointments etc. I go to Kings Hospital today for what I imagine will be a checkup, blood tests, definitely blood pressure test. Hopefully I will not be required to stay overnight for the time being. 

I just want to thank all the staff at Lincoln County Hospital (although I doubt they'll see this) from everybody I came across; doctors, porters, nurses etc. They were extremely kind and caring and put up with me and my mates. Thank you.

I want to thank all my mates especially my housemates; Olly, Mark and Luke and our honorary housemates Jui, Freddie, Chris, Dan, Dom, and everyone who came to visit of which there's too many to mention and I wouldn't want to leave anyone out. Thanks to everyone who texted, snap chatted, facebooked, everything. I really am thankful and appreciate all the messages.