September 14: Looking good

Upon arrival at King's hospital I was taken into a small side room for my 3rd bone marrow biopsy. A trainee nurse asked to stay during the biopsy which I was fine with. I then had to sign the usual spiel about volunteering extra bone marrow samples for research.

I had to lay on my side with my trousers slightly lowered so that my hip is visible and accessible. This time I was prepared and wore Calvin Klein boxers instead of embarrassing robot ones. Again I didn't have any gas and air like I did at Lincoln. The most painful part of the ordeal is the application of local anesthetic which can sting as it spreads and numbs the area that is about to be used. There's a lot of yanking and digging around with a needle in my hip as it sucks out some of the liquid marrow. Once that was done, some kind of needle clamp thing was then stuck in which, after lots of twisting, a piece of marrow core was pulled out. Such fun we had.

After the biopsy I had a clinical appointment with my doctor. He believes that my treatment is working. I will be getting the full results in a fortnight's time from the bone marrow biopsy. He expects the results to be very positive and that I will also be having my hickman line removed! My blood test results showed that my counts had basically remained the same since my last blood test on September 7th which is fine, as I'm not expecting huge and fast increases. Just slow and steady.

I look forward to getting my biopsy results in a couple of weeks time and getting my Hickman Line out. The end, I think, is on the horizon.

Tuesday August 11-Sunday September 13: Update and Graduation

I realise I haven't done a post for a long time, as I had been having the usual blood tests and check ups. So this will be a fairly long post to get up to date.

The last time I did a post was when I was disappointingly told that it appeared that my treatment was not working. Since then I have been to hospital several times. The first time being August 13th when my blood results meant that I didn't need any transfusions. This meant that I hadn't had a transfusion for 7 days, the longest since this all began in April.
I was back again at the hospital on August 17th where I again needed no transfusions. It had been 4 visits since my last transfusion, and 5 visits since my last blood transfusion.
The good news continued further with a visit on the 20th where I again needed no transfusions and saw a rise in my blood, platelets and neutrophils since the last visit.

To celebrate that things were starting to look better, I went to the Charlton game that Saturday. Where in dramatic circumstances we crushed Hull 2-1, scoring in the 98th minute. Easy.

On August 21st, my nan (Big Nanny, Margaret Riley) died. She died from the awful disease dementia. We all miss her.

I was back again at the hospital on August 24th, where, you guessed it, I again didn't need any transfusions. I was beginning to think that last month's depressing clinical meeting had perhaps been too soon.

First blood transfusion since July 30.

August 27th was the usual blood tests. This time I needed a blood transfusion. However it was my first blood transfusion since July 30th. And I knew that it was likely that my run of needing no transfusions wouldn't last forever. But I was delighted at how long I had gone without needing anything.
I saw my doctor on the haemotology ward, he now believed that my treatment has begun to work. This is because the number of transfusions I had been receiving had dramatically decreased. I was even told that I no longer needed to come in to hospital twice a week, but instead once a fortnight roughly. I was also told that I should know for certain mid-September where I will have another bone marrow biopsy to see if my stem cells have increased or not.


That weekend I started my TEFL course (Teach English as a Foreign Language) and completed the 20 hour practical course. I have since started the 100 hour online course. All going well I would like to maybe teach abroad in late 2016/2017, once I'm better.

The TEFL gang

As well as being told during my last hospital visit that it looks like my treatment may now be working, I was also told that I could now have a drink (2max). So on Sunday 30th after finishing the TEFL, we went to the pub and I had my first drink in over 80 days! Since just before I went in to hospital as an inpatient on June10th.

Oh how I had waited for this moment.

I didn't have to go back to hospital until September 7th, where I had blood tests. I didn't need any transfusions, and my neutrophils had rose to a personal best of 1.73! They need to be over 2.2, so I seem to be slowly getting there.


On Thursday September 10th, I can happily say that I went up to Lincoln to graduate with my friends and course mates which was fantastic. It was great to see so many of my university mates whom I hadn't seen for what felt like ages. The graduation ceremony at Lincoln cathedral was incredible. I'm also pleased to say that I didn't trip over or embarrass myself.

I am back at hospital tomorrow (September 14th) for the big one. I will have blood tests, followed by my third bone marrow biopsy. That's the really fun thing where I get a huge needle shoved into my hip to extract some marrow and see how those counts are doing. I can't wait, it's going to be a barrel of laughs. Depending on the results of this hugely enjoyable experience, it will (should) be decided whether or not the treatment really is, or isnt, working.

I will do a post either tomorrow or Tuesday outlining how it all went. I am quietly confident that it will be good news.

#UniBanter

Wednesday July 15 - Monday August 10. Good and Bad.

Don't chew them.

I am still visiting Hospital twice a week as I remain transfusion dependent. Because I had been having Magnesium transfusions so frequently I have now got a prescription for Magnesium tablets. The only way I can possibly take them is with a lot of lemonade as they are awful with water and unbearable to chew. Since I've been taking these tablets twice daily, I have had a reduction in the amount of magnesium transfusions.

At the end of July it was my Dad's 50th birthday. We all spent a couple of nights in central London going out and doing tourist stuff despite being Londoners.

Over recent weeks I have been in constant contact with my University (Lincoln) in relation to completing my course. Because I originally went into hospital towards the end of April I missed my only exam, which was 40% of one module. There are lots of modules, so I basically missed a minute part of my course. Eventually after lots of back and forth and countless emails and name dropping the charity CLIC Sargent, it was agreed that if I completed a replacement assessment by a certain date, I would be able to graduate. I completed my essay and handed it in early (couple of weeks ago) and eventually after continuous pestering on my part, I have finally received official confirmation of my Degree!!! I have achieved an 'Upper 2nd Class Honours 2:1' which I am very happy with. I have also been told that I will be able to attend this September's Graduation which I'm obviously delighted with. It is by far the best news I've had for months.

Best city in the world

Today, as well as receiving my degree confirmation, I had a clinical appointment with a doctor. My blood counts are still fluctuating but my neutrophils seem to be fluctuating in an upwards direction. From lows of just under 0.2 to around 1.3 today. My blood remained 98 today same as it was last week Thursday and my platelets were 21 meaning that I required no transfusions of any kind today. However despite it being still too early for the doctors to know whether my treatment is working or not, they are leaning towards the view that it isn't. I think they expected that I would be less transfusion dependent by now. I should hopefully know for sure on September 14 when I have my 3rd bone marrow biopsy and meeting afterwards. They have begun warning me that it looks increasingly likely that I will be undergoing chemotherapy and a bone marrow transplant in the near future. I am hoping that this won't happen, as I came out of Hospital as an inpatient from my ATG treatment on June 23, which is barely two months ago and too soon to know for sure.
I have every faith that if and when a bone marrow transplant is needed, Anthony Nolan will find one for me.

That handsome devil will be graduating.

On more cheerful news, over the weekend the new football season kicked off with Charlton at home to QPR. It was great to be back at The Valley to see my team resoundingly win 2-0. I don't think I'm being overly optimistic to say that it is absolutely 100% guaranteed we will be back in the premier league next season. #Banter

Wednesday June 24 - Tuesday July 14th. Back to being an outpatient

Its been a long time since my last post. I am back to my usual routine of twice weekly visits to the Haemotology Outpatient Ward at Kings Hospital, and I didn't want to bore everyone with continuous posts about transfusions.

Blood & Magnesium.

Not being an inpatient is great, I was beginning to go stir crazy spending two weeks in a small room. It's good being able to walk more than four steps from my bed to the bathroom as well as being able to go outside. Since I left Hospital as an inpatient I have been trying to occupy myself with things to do, as I am still quite limited in what I can and can't do. I'm not able to do anything strenuous, be in crowded areas due to my low immune system, drink alcohol etc. Its not exactly what I had planned for being a 21 year old. I have been out a lot with my family, such as going out to restaurants and being all cultural by seeing plays in the West End, as well as seeing my mates.


It's strange falling back into the routine of being an outpatient, its like I'd never stopped being one. Currently I'm still on lots of pills but I have recently stopped being on steroids which were part of the ATG treatment to help prevent side affects. To add to my usual transfusions of blood and platelets, I am now regularly having Magnesium transfusions, which I have had every time I have been back as an outpatient bar once.


The ATG treatment is still kicking in within me and I am taking 100mg of Ciclosporin tablets twice daily which are part of the ATG treatment. They cause my hands to shake slightly, but not quite as bad as Tom Hanks in Saving Private Ryan.

I'm just keeping the rhythm.

I was advised to go to a support meeting by my clinical nurse, and in all honesty I really did not want to go as it didn't seem like my kind of thing. And, well I was right. I left after about 30 minutes into the 3 hour meeting. I like to think that I've been fairly positive with all that has been going on since April, but I was the youngest one in the meeting by a fair bit which can be quite off-putting. Not everyone there had my illness, in fact most didn't. I felt that a support group can't really offer me much support if I am so clearly the odd one out through age. I won't be going back.


Yesterday (Monday 13th) was my busiest day at hospital since I had left being an outpatient. I had a clinical meeting booked with a Doctor who would be discussing my treatment and how things are going. I arrived early at hospital in order to have my blood tests taken before the meeting. During the meeting the Doctor referred to me as "the one who had sailed through the treatment", oh yeah, that's me, sailing through. This is basically as I haven't expressed any real side affects while in hospital which is why I was there for 13 nights despite being warned that I could have been there for 3 weeks. He asked me how things were going and if I had experienced anything, I mentioned my shaking hands which seems to be expected. I have also been having some problems with my left leg. Every few days or so, I will start getting a pain right at the top of the leg where it connects to the body. It's not a horrific pain but it's not particularly nice and can make movement fairly difficult. He asked me to lie on a bed and I had to lower my trousers while he felt the top of my leg. Again, my choice of boxers that day wasn't great as they had loads of robots on them.
We then went through my blood test results which he received during the meeting. My blood, platelets and magnesium are still fluctuating a lot which is why I'm receiving so many transfusions. I was told that I would be having 2 transfusions of blood, one platelets and one transfusion of magnesium.

After the meeting I went back into the ward to get my transfusions. I left around 7:30pm, making yesterday a fairly long day.

IT COULD BE YOURS!

Too much free time.

Thanks again to all those who are joining the Anthony Nolan register which just requires you to answer some simple questions and spit in a tube. Hopefully I won't be needing to find a match, but it is a great charity that helps a lot of people, and if the ATG doesn't work for me, I too will be looking for a bone marrow match. Please if you can donate blood to the NHS too, I can't underline enough how I am draining the brilliant NHS of all its stores of blood, platelets etc.

Thanks Conor

I would of added the picture of Suneel's but the language in the photo probably wasn't safe for some eyes. Cheers Suneel.

Wednesday June 17 - Tuesday June 23. RELEASE DAY!

Due to my reaction on Monday I was still on a lot of antibiotics, as well as my growing collection of pills and steroids. Wednesday was quiet, just a lot of observations and checks.


On Thursday I had another magnesium transfusion. The magnesium transfusions I always find quite odd as they make you feel really warm. Again, there's no pain or nausea but just a fairly strong feeling of heat which can be quite weird. Thursday had a brief but very good anomaly in my treatment, for the first time since this all started in April my red blood count actually rose without the need of a transfusion, from 82 to 88! Obviously this is far too early to mean if the ATG treatment is working, its likely to just have been effected by all the drugs and stuff I'm on, as well as the fact that I've literally been doing nothing physical. But it's surely a good sign. My red blood count has since gone back to falling as it was 86 on Friday, but still to have a fairly large jump can only be a positive.


While I have been at hospital I have been trying to not be too lazy and just watch tonnes of youtube and TV. I was told when I was first admitted on Wednesday June 10th that the biggest thing I would struggle with would be boredom. I've got to admit, the doctor was not wrong. When you're limited to one room for a long period of time you can go a bit stir crazy. I didn't want to waste my time in hospital and tried to do a lot of reading and if possible some writing. Incredibly the Anthony Nolan Charity got in touch with me and offered me a chance to write a post for them, which I really enjoyed doing especially for such a good organisation (http://blog.anthonynolan.org/2015/06/patient-stories-adams-blog-about-his-aplastic-anaemia-treatment/). This went up online on Friday.

Top Job.

By Saturday I was off the majority of antibiotics but I still have a lot of steroids and pills to take daily. I also had the top stitch of my Hickman Line removed on Saturday which is a lot cleaner and simpler than I thought it would be. It's literally just a small snip and then it kind of falls out. I was expecting something a lot more climatic and dramatic. In the evening I had a transfusion of platelets as my count had been 6 that day.
Saturday was probably the most boring day at hospital. The days are incredibly long and there is only so much music and reading you can do in a day before you start running out of interest. The days are made longer by how frequently the nights are broken up by having my ops checked. Each night at hospital I'd be getting woken up at 2am for my checks, then again at 6am. At 7am I would then have blood taken and then at 8am breakfast would be served. As such it is really difficult to have a proper sleep as realistically the longest period of uninterrupted sleep I''ve had in the past couple of weeks is about 4 hours. I don't want to complain as I know the staff have to monitor me in order to make sure that I'm OK, but I cannot begin to describe how excited I am to have my own bed and sleep without being woken up.

Hello Ladies.

I. AM. HILARIOUS.

Olly and his sister came to visit on Sunday which was really good especially after how excruciatingly bored I've been the last couple of days. A few hours after they had left I received a unit of blood as my red blood cells had dropped below 80.


Freddie from University came down on Monday followed by a few mates from home which was great. We took over the ward common room which gave me the opportunity to leave my room and use my legs. I didn't have any transfusions that day and I was told that I would be leaving hospital on Wedneday.


Today after breakfast I was informed that I wouldn't be leaving hospital on Wednesday but that I would in fact be leaving today! Because of this I got topped up with blood and platelets etc so that I can go home. Chris came today and helped me pack all my stuff away with my mum. The staff at King's and my ward (Davidson) have all been incredible. Their kindness, patience and professionalism goes above and beyond what I expect of anyone. They all really are fantastic, I've been treated so well. I can't praise them all enough. Even the food has been really good, seriously. I was surprised too, there's quite an extensive menu and I strongly recommend the Chilli Con Carne if anyone ever finds themselves as an inpatient at Kings.
I will be back frequently at Hospital as an outpatient as there is still a lot to do, and I won't know if the ATG treatment is working for 3 months. As such my blogs may be a lot less frequent as it'll be back to the normal routine of transfusions.
Most of all I'm excited to have my bed tonight and to not be woken up at 2,6,7 and 8am.I'm going to sleep like a log. I wonder if I'v been institutionalised and will struggle in the outside world...

Final door sign.

Still going to have the Hickman for at least the next few months, maybe up to a year.

Friday June 12 - Tuesday June 16. Finished ATG treatment

The ATG treatment which is an immunosuppressive, is designed to stop my immune system attacking my bone marrow and consists of 4 long transfusions. The first bag which lasted 18 hours on Thursday June 11 went fine. I did have some minor side affects to it on Friday. Mainly consisting of itching and some small rashes, but this has since stopped. My blood sugar also rocketed to about 11.9, it should be within 4-7, but I think this may be because of all the sweets I've been eating since coming to hospital. As a result I was being monitored closely.

Almost as soon as I was up on Friday morning, after my breakfast and pills, another bag of ATG was being set up for me. Before I could have  the ATG my platelets needed to be above 30, mine weren't, so I had a quick bag of platelets before the ATG started. As Thursday's ATG had gone well, without any real problems apart from the itching that Friday morning, it was decided that the ATG could be sped up to about 15/16 hours. Once the ATG bag finished, which was just before 2am I had to have more blood samples taken from my Hickman Line, to ensure everything was still alright.


Before the transfusions on Saturday I tried to have a shower, as it would be nigh impossible to do so while hooked into a machine. Thankfully I have a Hickman Line protector that helps to keep it dry and clean for showers. It can be difficult to keep the part of the line that goes under my skin dry. As a result I had my Hickman Line dressing changed before my treatment continued. My blood tests that night had shown that my Magnesium was fairly low. I didn't even know there was magnesium in the body, I think it helps the muscles contract and stuff. Don't quote me on that. As such a magnesium transfusion was required while I had my 3rd bag of ATG. In a weird way this was quite cool as my Hickman Line has 3 lines coming out of it, meaning that I can have multiple transfusions at the same time. Now was my chance to have 2 transfusions simultaneously. This is how my life has become, I get excited about having simultaneous transfusions. The ATG bag was sped up to 13/14 hours as I've been coping well so far. The magnesium took about 2 hours. You can't really feel anything during transfusions apart from a slight coldness on the base of my neck/upper chest as they enter my blood stream.

My friend Jui kindly came up to see me on Saturday for a couple of hours and met my room mate Alvin. After my ATG was finished in the early hours of the morning, a bag of platelets was brought out for me, as they've been dropping quite fast during the treatment. I eventually went to bed just before 3am.

This has at least doubled since.

Sunday 14th was my 4th and final bag of ATG treatment! I woke up, had my breakfast and my ever growing collection of pills to take, as well as antibiotics and steroids. I required another platelet transfusion before I could get started on my final ATG bag. I had a couple more visitors in Olly and Smizz who came to see how I was doing.
My friend Alvin who I had been sharing a room with for the past few nights was going home that day so we said our goodbyes before he left. I was then moved to my own personal single room where I am now, which has been great so far. The final bag of ATG was scheduled to take only 12 hours. From now on I would be dealing with (hopefully minimal) side effects.

ONLY 1 MINUTE LEFT ON MY FINAL ATG BAG!!

Hadn't felt like this since my Birthday.

In terms of my physical well-being, Monday 15th has been the worst since I was originally taken to Lincoln Hospital on April 23rd. I woke up several times throughout the night with really bizarre dreams. I was up by 6am for more blood samples and the usual ops to be tested; blood sugar levels, pressure, pulse, temperature etc. My temperature had gone up fairly high to 38.9 and I was feeling really grim. The only way I can think of to describe it, is to imagine having a really bad hangover while having stomach cramps.

My recollection of yesterday morning is very hazy as I was continually slipping in and out of sleep, as well as an increased dosage of drugs, antibiotics and steroids. Because of how I was feeling extra samples were needed from me. This consisted of attaching fairly large vials which were already half full of solution to my lines, which would then take blood from me to be tested for infections. As they were already half full before they were connected to me, you could hear my blood going into them which was quite disturbing, but funny at the same time. It's strange sitting there with a nurse when you can both hear my blood spurting out. I then had another magnesium transfusion, this time sped up to 1 hour, as well as several more antibiotics transfusions. Because of the reactions I was having I also needed to have blood taken from my arms, which is disappointing as I was enjoying not being prodded with needles since I'd had my Hickman Line fitted. For some reason my veins were refusing to give any blood. The first 2 times the needle went in nothing would come out, but the third time was the charm. I was absolutely unable to even contemplate eating anything till late that evening.

I'm very observant.

My mum came up to see me at about 4pm while I was having a blood transfusion and left soon after my sister Grace and our neighbour Sam arrived to see me. Grace and Sam stayed for a couple of hours and left as another bag of platelets was brought out for me.

At around 11pm I was taken downstairs through the hospital for an x-ray to make sure I had no infections. The porter taking me wanted to push me in the wheelchair but I politely refused. The last few days I haven't walked any further than my bathroom and I wanted to use my legs. The x-ray only lasted a minute if that and I have since been told that everything is good which is pleasing. I didn't have a porter to direct me back to my room and ward after the x-ray, so I had to go find my ward (Davidson Ward) on my own. This was all going really well until I got into my ward and accidentally went into the room opposite mine, where I had a strange stand off with an elderly lady. I thought she'd came and stolen my room and I think she thought I was a nurse. I slowly backed out the room and went into the correct one where I soon had another transfusion of antibiotics.

Hickman Line holder has been a lifesaver.

As bad as I felt yesterday, I was in reality alright. It's more a feeling of strong fatigue and grogginess (just like a hangover) than any real pain. There's been no point where I've requested painkillers or anything. As well as this the staff were all very considerate and caring and certainly helped. I'm hoping that yesterday will be the worst that I feel during this illness. I've felt absolutely fine today so far, had more and more drugs, another antibiotics transfusion and currently waiting on my tests to see if I'll need any more transfusions today. My mates; Tom and Conor also came up to see me for a few hours. Bringing even more sweets and snacks. After my mates had left my mum arrived as well as my neighbour Barbara. I may be having another transfusion or two before I go to bed tonight.

Who makes pills this big?

For anyone reading this who ever needs to have a Hickman Line fitted. They can be quite uncomfortable and getting a Hickman Line Holder certainly helps. It also helps to keep them dry in the shower. I've used this site so I definitely can reccommend: http://www.centrallineholder.co.uk/

There's also pictures of me in the site if you can't get enough of my dashing good looks under 'Patient Blogs/Stories' and 'Patient Gallery'.

Wednesday June 10th - Thursday June 11th. Started the drug ATG treatment.

OH hello

On Wednesday afternoon I received a phone call from Kings Hospital stating that a bed had become available for me in a shared room with another patient. I was told to arrive about 7pm in order to move into the room.

The room is fairly big with two beds separated by a curtain. The other bed was occupied by a lad around my age. My family stayed with me for a while and I had the dressing changed on my Hickman Line as it had got fairly bloody. I also had more blood samples taken, this time from one of the lines on my Hickman instead of another cannula. Woooo no more cannulas for a while. I also had my blood pressure and temperature taken. My temperature was 37.9 which is a bit higher than they wanted so the staff said they'd keep an eye on me.

After my family left I remained awake till 11:30ish when the night doctor arrived to ask me about the drugs that I'm already prescribed to and to inform me about the coming day.

Weird innit.

I didn't really sleep that well that night, which I put down to being in a different environment. I was woken up around 4am to be told that my blood tests had showed that my Neutrophil (I think that's spelled correctly) had dropped below 1 to 0.63. It's something to do with my white blood cells, which means that my immune system is now even weaker. The nurse told me I would be having even more regular check ups in order to monitor the situation, but it shouldn't be too serious. Unless I somehow  come into contact with someone with the flu or something.


I began Thursday morning with a shower, trying out the waterproof Hickman Line holder my mum had got me. Its basically just a pouch that goes around my neck and holds the line.

That's my heart apparently.

At about 11am I was taken by a porter down to a cardiac ward in order to have an ultrasound of my heart. I had to lay topless on my side as a nurse and her intern (I think) used one of those ultrasound jelly pens over where my heart should be. I had a couple of stickers linked to their machine placed on me in order to help their monitoring. The jelly was quite cold and every so often I would turn my head to try and look at the screen where you could see my heart beating. I could barely work out what was on the screen and yet the two staff were easily spotting and discussing different parts of my heart. I felt a bit like a pregnant woman having an ultrasound. Once it was over I was told that there didn't seem to be any problems with my heart and if I had any questions. They kindly allowed me to take a couple of photos of the screen, and even tried to put the best images on the screen for me to photograph and film.

One day I'll be photogenic. (bag is ATG)

A porter took me back to my room afterwards as King's Hospital is huge and there is no way I'd ever find my way back on my own. I had a nurse and doctor almost immediately come into my room to inform me that I would be starting my ATG treatment soon and that all I needed first was a unit of blood. While I was being given blood my mum arrived to spend some time with me, and by that I mean annoy me. As the blood was finishing the nurse began putting medicines and other liquids through my Hickman Lines to get me ready for the treatment. My clinical nurse, Nana, also arrived which was good as I hadn't seen her for a few days. She told me about the treatment outlining how it came from a horse and that ultimately it was hoped that it would suppress my immune system which was attacking my bone marrow. There are of course possible side affects but because of my youth I should hopefully be alright. As I write this I have yet to feel any negative affects. As they don't know how I will react to the treatment they began with a test, this would input just 5mm of the ATG (which is diluted with saline) into my system over the space of an hour.

At least it's really quick. OH WAIT.

The hour came and went and everything seemed fine, so it was set to its normal pace and the rest of the bag was put to go into me. It will take a total of 18 hours for this bag to go into me. The 2nd bag (when I get it) will take 14-16 hours. So really short transfusions. I will be having a total of 4 bags I think. There is currently 15 hours 17 minutes remaining of this bag.

After dinner, I had my updated drugs brought out for me. So if I work this out correctly, I'm on: the ATG bag, 3 ATG capsules (2X day I think), spoon of Noxafil (3X day), special mouthwash (4X day), Nystan (4X day straight after mouthwash), Ciprofloxacin (2X day) and Aciclovir (2X day).
I hope I've got that all correct. I imagine tomorrow will be a fairly quiet day.

There isn't really that much for me to do at the moment except hang about and try and get comfortable despite being rigged into the machine. When I was having transfusions over night on my first night at Lincoln hospital I found it difficult to sleep, I doubt tonight will be any different.

Riveting read

More drugs than a pharmacy.

Tuesday June 2nd - Tuesday June 9th. Hickman Line Surgery.

This week has mainly been preparation and trying to sort some stuff out before I go into hospital as an inpatient. So nothing really happened this week.


On Tuesday I went with my parents to a restaurant up London.


I was back at Hospital on Thursday where I didn't have any transfusions. I was told that my next visit would be Tuesday the 9th (today). Where I will have several transfusions and have my hickman line put in. I will also be staying as an inpatient for several weeks if they have the bed available. If it's not available I'll have a bed by Thursday the latest apparently.

2 BAGS? WHOA! MAD!

Over Friday, the weekend and Monday I saw some more mates and my Grandad, as its my last weekend before going in as an inpatient. I also fed a dog a crisp which was hugely exciting. Been having mad weekends recently.


Before going in to Hospital today I had to shower Monday night and Tuesday morning using a special kind of antiseptic soap. I arrived early in the morning and was immediately given 2 bags of platelets straight after each other, as I needed my platelets to be over 50 before my Hickman Line surgery. Before the transfusion they were 9, which isn't the lowest I've had by a long way.
After the platelets I had some time to kill and went to the cafe with my mum before heading back to the hospital for about 1:30.

I was soon taken to an upstairs ward and given a place to wait before my surgery. I had to get changed out of all my clothes into a stylish hospital gown. A surgeon came and spoke to me describing the procedure to me and informing me of the risks. Conversations like that are always loads of fun. After waiting half an hour or so I was taken into the operating theater where I sat for 5 minutes before being taken back to the waiting room again as they were running a bit late. This was a bit disappointing as I'd been getting myself ready by listening to music when I was previously waiting.

Waiting for my modelling career to take off

15 minutes later I was taken back into the operating theater which is a surprisingly large room. I, understandably, wasn't allowed to take my phone into the theater so I don't have any photos from that. The surgeons and nurses were all extremely nice and friendly and instructed me to lay on my back on the bed. I had to have some of my chest shaved (obviously, as I'm bare hairy), so that it reduced the risk of infection from the surgery. I had all these blue sheets pulled up and over my face only leaving my left eye clear. I could only look at the wall while the surgery went on the the right hand side of my neck and chest.

I could feel markings being made on my skin where they were planning their insertions. The surgeon said that I would feel a slight scratch followed by stinging as he applied a lot of local anaesthetic to the region that he would be operating on. The application of the anaesthetic didn't hurt at all because I'm hard as nails. After that I could feel the wires being inserted into me from the base of my neck which would go along my veins and rest just above my heart. As the wire was being fed into me the bed would move around slightly so that the surgeons had better angles to manoeuvre the wires through me. Like when I had my two bone marrow biopsies, the weirdest feeling is feeling liquid running across you and realising that it's your own blood. There were parts where a lot of pressure was being applied to me in order I assume to make sure everything was secure. At the end of the procedure I required some stitches in order to keep the Hickman Line secure and to ensure that there is no risk of it coming out. As my skin was numb due to the anaestetic I could feel the needles going into me and pulling the rope(?) with it. It was odd as I could hear it all as its happening to your own body. It's also weird as you know that without the anaesthetic it would be horrifically painful, but instead I'm lying there joking about how I feel like I'm in an episode of 'Scrubs'.
I was soon allowed to sit up, and have a look at the results. I look like you could get access to the internet if you plugged your laptop into me. I wasn't allowed to sit up until all the blood was cleaned away.
I then took a load of pictures, I can't really photograph it without getting a load of my hairy chest in, Sorry everyone.

Having so much fun.

I was told that the Hospital had been unable to get a bed ready for me today, so I'll be back in hospital tomorrow. I will definitely have my room this week and will be remaining in hospital for the rest of the month, maybe a bit longer. This will definitely be my last post from home for a while as a result. I will have internet in hospital so as long as I am able, I will continue to post blogs from there. Thank you to everyone who has been keeping up to date and messaging me as well as coming to see me. It's all been very appreciated.
I'll leave you all with this very special picture to show my thanks.

So Sexy.

A huge thanks to all those who have signed up to the Anthony Nolan register. It's a great thing to do and very easy too. As well as those who have been donating blood and platelets to the NHS, especially as I am draining the NHS of all it's resources.

Thank you Jui and everyone else.

Freddie obviously had to do a selfie.

Monday May 25 - Monday June 1. Transfusions and a CT scan

I didn't do a post last week as it was a fairly quiet week, with only one transfusion of platelets on Tuesday the 26th and just some blood tests on Thursday. I saw a couple more of my mates at my local pub on the Bank holiday. I was then back at Kings Hospital on Tuesday. My cannula on Tuesday for some reason was leaking a lot of blood, probably a good thing I was getting platelets.

Need those Platelets yo

Bare blood.

On Thursday I went back to Hospital to have more blood tests. The results showed that I didn't need any transfusions that day so I was able to go home soon after.
My Friday night was spent with my parents, a growing trend in my social life. We went to the IMAX cinema to see Mad Max. I don't think they enjoyed it as much as I did.


Over the weekend I saw my mate Tom for the FA Cup final, curry and Fifa. One day Charlton will make the final.

Tom's 'Spielberg-esque' directing and narrating of my medicine taking. I hope that works. If not,  it's just 10 seconds of Tom talking in high frequencies while I try and have medecine.


Yesterday was a far busier hospital day. Upon arrival I had the usual; cannula inserted and blood tests taken. Due to some earlier cancellations my CT scan was bumped up from Thursday to Monday. In order for this I would need to have some kind of isotope pumped through me so that the healthiness of my organs could be observed. This required a larger cannula, so I ended up having a cannula in each arm.

Get your Cannula out.

Before having the CT scan I was told to drink several glasses of water in quick succession. I assume this is so that the scans can accurately see my kidneys and bladder.

In the CT scan room thing, I was made to lower my trousers to my knees and lay on my back on one of those scan machines which move you in and out of the StarGate looking arch. I probably could of been wearing less embarrassing boxers for the scan as I was in bright yellow LMFAO 'Sexy and I know it' boxers. Because I'm classy like that.

The larger cannula was hooked into something just out of my eyesight and I had to lay with my arms behind my head. One of the doctors told me that after a few minutes of scanning they would start running a liquid through my cannula that would make me feel very hot, and that a lot of patients think they wet themselves. I asked if anyone had ever wet themselves and she said no. I said 'there's always going to be a first.' She said she would let me know when the liquid would start going into me, but I requested ignorance as usual. I don't really care what happens, and seeing as I have no control over what happens, I'd rather it just happened, instead of it being continuously announced and counted down to. It's one of the reasons I still haven't bothered googling any of my illness. I know my mum has, and she didn't particularly enjoy it. So now I was paranoid about not only my classy boxers but also making sure I didn't piss myself.

I went through the machine a few times and a robotic voice would sometimes state 'take a deep breath', 'hold it', 'now breathe'. There was a little picture of a smiling face holding in its breath and then breathing normally that would light up on the machine with the commands, which I stared at the whole time and for some reason found hilarious. Suddenly I felt and even heard the liquid shooting down the tubes and cannula into my arm. Its a weird noise, like when you squeeze a Capri Sun. Immediately I clenched my bladder, no way I'm going to be the first to piss themselves. I felt quite hot and there is a really strange sensation that you've wet yourself. A few minutes later it all finished and a doctor came out, asked if I was alright and sent me on my way.

I went back down to the Hematology ward where I got a load of medication before my platelet unit which again made me really drowsy. After that I was given two units of blood in quick succession (4 hours or so) before my cannulas were removed and I could leave.



I'll be back at hospital on Thursday for some more blood tests, maybe a platelet transfusion. It looks like I will be beginning my treatment on Monday (possibly Tuesday) where I will have to remain at Kings for basically the whole of June.