9 – End of Chemo, time to get back to normal.

It’s been 4 weeks since my 12th and final chemo.  This week I had a CT scan and blood test to check that I’m still in remission and that it indeed was my final treatment.

The results were good!  There was no sign of anything cancerous on the scan and my blood is returning to normal levels.  This means I have no more scheduled appointments for 2 months (3 months after my last treatment).  I’ll then have 3 monthly check ups for the first year and check ups every 4 months in the second year.  It’s nice to know the doctors aren’t just washing their hands of me; as the first few years after finishing treatment is the period it is most likely to come back.

See below a little collage of my deterioration over the last 6 months or so…

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My hair is at its thinnest at the moment, which is annoying but far from the end of the world.  Hopefully it’ll start growing back soon.  In the meantime I’ve become a bit of a pro and drawing my eyebrows on.

People often ask me whether having Hodgkin’s Lymphoma has changed me.  I think it has.  I think I have a more short-term view on life.  Not going as far as to live every day as if it’s my last, but just to not take things for granted and not to waste time!  The whole experience has changed me for the better, I’ll worry a lot less about trivial things and definitely say YES more.  Otherwise I’m probably going to have issues thinking every little cold/ache/pain is cancer for a little while, and I might struggle to be able to take things seriously without thinking “well it’s not cancer so how is this important?!”.  I’m well aware that’s ridiculous.

It’ll be nice to just get back to normal and to start doing normal things so I can have something else to talk about.  I don’t want to be ‘that person’ who always mentions cancer or always has to get into conversation!  Therefore, I’m hoping to get back to work next week part-time, gradually working up to full-time soon (work continue to be amazing by the way, I’m under no pressure to rush back – this has really helped).

I’ve started to get fit again, in preparation for our London to Cambridge cycle in July.  As promised a few blogs ago I’m starting to hound people for sponsorship.  Here is our sponsorship page uk.virginmoneygiving.com/ThomasandHolly.  You have no idea how much it would mean to me if I was able to give a little bit back to charities that do amazing work to help people get better, and if that’s not possible, provide support to help them feel better.

I don’t think I’ll do anymore blogs for a while; so thank you for reading and all the support, it’s really helped me.

I’ll just finish on a little mantra I’ve had in my head during the past 7 months (originally uttered by Mr Churchill a long time ago) …

“If you’re going through hell, keep going”.

8 – Living with someone with cancer – a girlfriend’s perspective

Hello!

This blog update is going to be a little different.

It’s split into 2 parts:

  • Part 1 is an update from me as to what has been happening as it’s been a couple of months and 4 chemo sessions since my last update.
  • Part 2, to put a bit of a different spin on things, is going is a ‘guest blog’ from Holly – I’m sure she’ll provide an interesting perspective on what its like to join someone on the rollercoaster that is cancer.

Part 1

As mentioned in the previous entry I had a PICC line fitted before my 7th chemo session; it’s still very comfortable 8 weeks later, the vein pain and the weird hard veins have gone.  The only maintenance required is a trip to the hospital to get the tubes flushed out and dressing changed in the week between chemo sessions.

My special guest for chemo sessions 8 and 9 was my Auntie Carolyn; its was great fun to catch up and she brought me some amazing brownies J.  After session 9 Carolyn completed the Cambridge half marathon I wrote about in my last blog in an incredible 2 hours 15 minutes, raising loads of money for Cancer Research (http://www.justgiving.com/Carolyn-Linsell2)!  I was lucky enough to be able to surprise her at the finish line.

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I think I mentioned before that I started my chemo the same day as another chap, Fabrice, he finished his chemo after the 8th session.  He’s very kindly been along to see me at each of my sessions since he finished, its been great to see how well he looks and how much energy he has since stopping the treatment!  We had a chemo-club photo with some of the amazing nurses to celebrate his last session…

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I had a bit of scare after session 8 when I picked up a bit of a cold and I had a few night sweats (you may recall this was a symptom of the Hodgkin’s in the beginning), I had some blood tests and my C-Reactive Proteins were high (another potential sign of Hodgkin’s); obviously this was a little concerning.  Fortunately, these things are not just symptoms of Hodgkin’s, they can just a bi-product of getting an infection, which I’m prone to pick up due to my weak immune system.  A short course of antibiotics sorted me out pretty quickly.  I think I’ve just got to get used to being a massive hypochondriac for a while!

Other changes…

The weight gain is getting a bit silly.  1 stone 8lbs (10kgs) put on since my first chemo.  My haematologist continues to be happy with this; apparently I wouldn’t be putting on weight if I was still fighting off the cancer.  The steroids I’m taking to stop nausea in the days after a poison session are the main contributor to the weight gain.  They do this in 2 ways; firstly, by depositing fat in odd places (jowls/double chin and cheeks) – this has caused me to develop a rather unsightly ‘moonface’.  Secondly they give me a big appetite.  I tried not taking the steroids after a session to try and stem the excessive weight gain. Big mistake. It just made me feel sick… the eating continues.

Together with the moonface, my eyebrows are on their way out and I have a total of 3 eyelashes on my lower eyelids. I’m looking weird at the moment.  If anyone has any tips for using an eyebrow pencil (for special occasions) without looking like a drag queen that would be great.

I had been anticipating feeling worse as the treatment accumulated, but I actually feel like I’ve been feeling better and it’s been getting easier as time has gone on.  Probably a result of less surprises with the after-effects of treatment and just generally learning to ‘listen to my body’.  I even managed to go out on my bike for an hour and a half in between my 10th and 11th chemo sessions, which was great.  I’ve been lucky so far, my haematologist says I’ve tolerated the treatment very well.

Last week, for my penultimate chemo session (number 11), I had another new special guest, Holly’s stepdad Michael, himself cured from 2 unrelated cancers in the last 18 months… I think his chemo-buddy experience was made slightly more bearable by the lady bringing round the coffee 😉  For anyone who is interested in classic supercars, he’s just written a book (all profits going to The Little Haven’s Hospice, Southend) about the supercars he owned between 1965 and 1985 www.letthemstare.co.uk.

Hopefully I just have 1 more chemo session to go, on April 7th (2 days before my birthday).  I’m assuming I’ll have another CT scan soon after to check whether its all been cleared up.  I’ll keep you posted.

Now for Part  2… Enjoy!

Part 2

It’s definitely my fault there has been such a big gap between blogs. Tom asked me to do this straight after he posted his last one (2 months ago?), and since then I have been putting it off as it seems like such an overwhelming task. Ideas have been floating round in my head for weeks but I just didn’t know where to start. However, when Tom said that he was losing sleep over it, paired with the sudden availability of time from the Easter holidays, I decided it was probably time to start. Flashback to October 2015…

Cancer. Cancer. Cancer. I found myself saying this word in my head repeatedly as I tried to come to terms with it.  Even though the consultant who gave us the official diagnosis had done a brilliant job of preparing us for the news, there’s still nothing that can prepare you for it. We were just a normal couple, who had recently moved in together. Less than a year later, we were sitting in a consultation room, discussing how much sperm we wanted to store.

This brings my first positive about the whole thing. I feel like we have laughed more than ever these past few months. We were told on the Thursday evening, and on Friday morning we set off to the ‘Andrology Clinic’ (male fertility) and, whilst it was a serious and important thing as chemotherapy can make you infertile, it wasn’t difficult to see the funny side as he trotted down the stairs to ‘Room Number 3’. Then comes the chemo-farts. They are a thing. Google it. I can count the amounts of times that Tom had passed wind in front of me on one hand before this began. Since treatment started I would struggle to count the daily farts on two hands and both feet. He’s promised me this will stop after treatment. Finally, as mentioned in Part 1, the eyebrows, or lack-thereof. I was allowed to be let loose on him with my eyebrow pencil the other night. Brilliant. I am hoping he lets me add a photo of this.

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Although it is sometimes hard to see the brighter side of things, I think we have both found it really important to laugh at it whenever possible.

The other emotions have been probably quite normal. At first, apart from being scared and upset, there was anger. I was SO cross with his GP that I regularly fantasised about running round there to ‘give him a piece of my mind’ (I was told off for including my actual fantasy here because Thomas was worried I would come across as violent). How can a doctor who has a young man coming to him with persistent back pain, lumps in his neck and awful night sweats not be bothered about finding a cause?! Particularly when blood tests then come back as ‘extremely abnormal’. And the locum… don’t even get me started on her. Tom was so angry/deflated after returning from his appointment being told ‘everyone who works in an office has back pain’ and his lumps were due to ‘a change in the weather’ that he then didn’t go back, whilst the cancer continued to spread through his body. This leads to my second appreciation of the post (after his original consultant). His physiotherapist, who eventually made things begin to happen.

Then there came the guilt. How could I have lived with someone who had symptoms of cancer for 6 months and not done more about it? In fact, me and my mum (ever the pessimists) had actually diagnosed lymphoma back in July, 3 months before the official diagnosis. Why did I not do more? It was actually because, unfortunately, I had trust in his GP. Never again! I repeatedly said that something wasn’t right, even down to the fact that he smelt different. It sounds really weird but as soon as treatment started he immediately smelt normal again. If I was to re-do the time, I would have gone with him to those initial appointments back in April/May and demanded more. But, nothing can be done now and as we are approaching the end of the treatment I have not had any trouble putting 100% faith in his haematologist – we couldn’t have asked for better.

The worst bit of the whole experience was watching Thomas having to tell people. One moment that I will always remember will be when I watched him telling him a good friend in the pub very soon after diagnosis. I remember sitting in utter disbelief at what was happening. He told us that we were being so strong, but it was like we were in a little dreamy bubble where none of it was true. It took a while, but things gradually became more ‘normal’, to the point where now I can’t really remember what things were like before. Although, leaving a healthy Thomas every other Thursday morning and returning to find one who, quite frankly, resembles a zombie, is something that I haven’t quite got used to and comes a close second to the worst part. But, it’s part of him getting better and there’s nothing you can do other than get on with it.

It’s going to sound awfully cliché, but it’s so true that the best thing has been the confirmation about what amazing friends and families we both have. Starting with his friends, who have been right behind him the whole way. Whilst Thomas has been amazingly positive throughout, there has nevertheless been days where he has been feeling tired and unwell. However, on several occasions, his friends have come round (often travelling quite a distance) and it has immediately had more effect than any medicine could ever have. They have helped him to keep hold of some sense of normality, in a way that myself or our families could never do.

There is nothing better to distract you from stresses than a class full of small humans who are completely reliant upon you. However, this would have not gone as smoothly without the help and support of my friend and teaching assistant Pauline, who I have actually realised that I spend more time with than anyone – she has held up the fort when I’ve needed a moment and been a shoulder to cry on back in the beginning. It was so amazing the amount of people getting in touch after the diagnosis, letting us know they were there if we needed anything. This then led to quite a strange, short-lived period when people, understandably, moved on with their lives and it was difficult to know whether people wanted to talk about it anymore. In a way, I think this helped things to go back to normality. Old friends and new have really made such a huge difference and it’s at times like these when you need them.

Both of our families have been absolutely incredible and I cannot even begin to put into words how grateful we are for them, so I am not even going to try. In just 18 months 2 of the most special men in my life have had 3 types of cancer (see Part 1). Luckily their positivity has turned this into another amusing point and they’ve formed themselves a little ‘cancer club’.

A final positive note is that, on Saturday I got the best bike in the world. Seriously, she’s beautiful.

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Unfortunately, it means that there is now no turning back from the 60-mile London to Cambridge. I have never done anything more than the dreaded 5k ‘fun’ run at school and so this should be interesting. I am looking forward to raising money for 3 very important charities. Funnily enough the hardest thing I find about chemo-days is seeing the OTHER people receiving treatment. The old people on their own. The woman having her first treatment for breast cancer days before Christmas. So raising money for another cancer charity, Breast Cancer Now, who organise the race, seems to make sense. Then of course, The Lymphoma Association (no explanation needed) and finally The Willow Foundation. On Wednesday, it is Thomas’s(/our) ‘Special Day’, organised by Willow. I am sure this will be written about very soon. It is going to be fulfilling a dream I have had for a very long time. So, we want to return the favour to them by raising money to allow another poorly young adult go and have their own special day.

OK, I’m done.  Thanks for reading my ramblings 🙂

7 – Weird tubes hanging out of my arm for the next 10 weeks!

Hello!

Fortunately the chemo sessions have been fairly uneventful over the last month so I haven’t really had much to write about.  However, after the 6th chemo session, which my Mum very kindly joined me for, I had A LOT of pain in the arm I had the drugs pumped into.

Apparently one of the 4 chemo drugs I’m having (dacarbazine) can burn one’s veins and make them feel really hard, like pieces of string under your skin.  I can only describe the pain as like toothache – there was nothing I could do to get rid of it! That was until I used some Nurofen gel. It really did the trick if anyone else is experiencing the same post-chemo issue.

The long term solution was, rather than putting the chemo into the relatively small veins in my arms, to insert a PICC line. This is where a long, thin, flexible tube is inserted into one of the large veins of the arm near the bend of the elbow.  It is then threaded into the vein until the tip sits in a large vein just above the heart (photo below). This sounds a lot worse than it actually was.  A bit of local anaesthetic in the arm and it was all over in under 10 minutes!  Although I now have a couple of weird tubes hanging out of my arm its surprisingly comfortable; as the tube in my vein are soft and there’s no needles in there I can move my arm normally – which is good as it will stay in for the rest of my chemo (10 more weeks) 🙂                            image    image

They put the PICC line in before my 7th chemo session, which my good friend Mark came along to. Thanks very much mate! Having a different person coming to each session helps I think, it makes the day more interesting at least, although I’m not sure how nice it is to watch me deteriorate over the day.

In the meantime my bloods are looking good, I’m officially not anaemic anymore, and I’m continuing to pile on the pounds which is great according to the Haematologist! These are both signs that my body is not needing fight off the cancer anymore :).

Although the weight gain is good, combined with my lack of exercise it is leading to me becoming very out of shape!  Therefore I’ve decided to set myself something to aim for when the treatment is over… Holly, the aforementioned Mark, our friends Harriet and Jeff and I are going to do the London to Cambridge bike ride in July!  I’ve done it a few times before and its ‘only’ 60 miles along a lovely route so even though I’ll be very unfit it should be fine… I’ll be hounding people for sponsorship for the Lymphoma Association (www.lymphomas.org.uk) nearer to the time I’m sure 😉 and maybe we’ll organise a quiz night or something too.

Other things going on… As I’m not doing much work at the moment I can feel myself getting thick (brain-wise as well as stomach). No amount of daytime quiz shows can keep the mind active enough, I guess that means exercising too.  Similarly, socially I feel like I’m losing it a bit as well, I can see how the long term unemployed quickly become unemployable from a social confidence perspective… bit deep soz :/

On the other hand, however annoying feeling crap after the chemo is, it’s important to remember that it has got me into remission and therefore it does deserve a certain amount of respect!

My next session (number 8 of 12) is on the 11th February and my very special guest will be my Auntie Carolyn. She’s running the Cambridge Half Marathon in February for Cancer Research… it would be great if anyone would like to sponsor her run, she’s 60 by the way, making it even more impressive! The sponsorship link is here: www.justgiving.com/Carolyn-Linsell2

Thank you as always for everyone’s support, I genuinely couldn’t be doing this without you all!

Thomas x

P.S. If anyone fancies adding me on FIFA it’s Amdy05 (don’t ask).

6 – Christmas and PET Scan Results…

I’ve had an excellent few days!

  • Christmas was amazing – On top of lots of great food, presents and company, Holly secretly (including sneaking off in the dead of the night to meet my friend at a tube station) got in touch with lots of friends and family and they all clubbed together to get me a Macbook Pro (which is making writing this a lot more enjoyable) and a Playstation 4!  Thank you very much everyone, it was all very humbling and it got pretty emotional in the living room Christmas morning!

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  • Arsenal are top of the league
  • My good friend Anthony got engaged – many congratulations, delighted for you both!
  • Oh and I had my PET-CT scan yesterday and got the results this morning. I’M IN REMISSION!!!!

This is beyond good news, its feels incredible! Exactly 2 months and 1 day after being diagnosed with advanced stage disease the cancer has basically gone.  The contrast of emotions between dropping the bombshell on people on the 29th October and excitedly telling everyone the news today couldn’t be greater, it’s the best feeling in the world.

My scan was assessed on a measure called the Deauville scale (the scale ranges from 1 to 5, where 1 is best and 5 is the worst).  I scored a 1. My haematologist was very happy with me, he said it couldn’t have been a better result – I’ll take that.

Holly and I treated ourselves to a celebratory drink…

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However, we’re not being greedy and the chemo will continue for the full 12 sessions; this means I should finish on April 7th (2 days before my birthday!).

Otherwise since the last blog I’ve had my 4th session of chemo.  I really was not looking forward to this one and I felt pretty nauseous throughout it but it went fine, my blood results had improved again and I’m piling on the pounds! I’ve put on 9 pounds (~4kgs for the international viewers 😉 – the blog has reached 45 different countries you know).

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There were two main after effects this time:

  • A lot of heartburn (which was eased by peppermint tea and a hot water bottle)
  • Vein pain in the arm that the chemo went in (again treated by a nice fluffy hot water bottle – thank you Holly’s mum x)

The next chemo is tomorrow, New Year’s Eve, and despite the fact I’m going to be feeling pretty rough I’m pretty sure its going to be the happiest new year ever. New year, new start… let’s see if I can get through this one without getting a horrible disease!

5 – Chemo session 3 and what I’ll look like when I’m bald.

So firstly, thank you so much for the amazing response to the blog so far; 850 people in 6 different continents read it on the day I published the previous entry – ridiculous.  Thank you.

I had the third chemo session on Thursday 3rd December; this time my special guest was my sister 🙂 despite the circumstances it was very nice to have a catch up. Thanks for coming Katie x.

The session was fairly straight forward apart from a little raised heart rate at the end – apparently it’s a normal reaction. Or maybe I was just excited to go home.

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Fortunately my pre-chemo blood tests showed that my white blood cell count had increased from 2.3 to 6.0 (from the pre-chemo tests last time). I guess that means the self-administered immune booster injection (it’s called Neulasta and apparently costs £684 per shot!) did its job. So they gave me another injection to do the day after chemo. Lovely.

This isn’t very scientific and might not be wholly accurate… but how I understand it is that the immune booster makes your bone marrow produce extra white blood cells to reduce the chance of infection. A side effect of the bone marrow working overtime is that it causes your bones to ache. This was quite painful this time.

Over the next few days my hair began to thin quite quickly. So my mum cut a lot of it off (she’s a hairdresser). Pretty annoying but at least I’m not a woman – it must be a lot worse for them. It hasn’t all gone yet… But here’s what I’ll look like when I’m bald, minus the tufts on the sides).

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Anyway, the Monday after the chemo I got a bit of a cold. It’s bound to happen with such a low immune system I suppose, but still, it was a bit miserable for the week. Sleeping also became a bit of an issue.

I’m not sure the fact that I’ve got cancer has really sunk in yet; so the combination of feeling ill, the bone ache and not doing much with my days led to my laying awake overthinking everything and that wasn’t really very fun.

The cold wore off by the end of the week and I stopped being miserable.

In the week leading up to the 4th chemo (Thursday 17th Dec) I’m feeling great, I’ve got no symptoms and I’ve got energy! It makes me not want the chemo as I know in going to feel crap again for a week. Frustrating, but the chemo is making me better long term and long term > short term.

All this is leading to my first check point, a PET-CT scan on Tuesday 29th December. From this scan they will be able to the tell whether the chemo is working and at this stage I can be declared ‘in remission’… Or if it’s not working they’ll up the tempo and give me some more intense chemo. Fingers crossed for the former.

I’ll try to do another post before Christmas 🙂 Thanks for liking, sharing, commenting etc.

P.S Thanks to the Lymphoma Association (http://www.lymphomas.org.uk) and Meg who’s blog inspired me to write my own (http://mwgsi.com) her blog is much better than mine!

 

4 – Chemo sessions 1 and 2

I was diagnosed on the 29th October 2015. A week later I was to start my first dose of chemo.

In the meantime I had at least 1 appointment per day. These appointments included: blood tests, a lung function test, a chat with the surgeon who removed the gland from my armpit and… A bone marrow biopsy. While I was having all the tests leading up to a diagnosis a friend said “you’ll be fine as long as they don’t do a bone marrow biopsy on you, they’re horrendous”; thanks Alex. Cue a sleepless night.

In the end it wasn’t too bad – it felt like a big syringe was put into the top of my hip which sucked out the inside of my thigh bone… Fortunately it lasted a maximum of 10 minutes.  I got the result of the biopsy a couple of weeks later – the lymphoma is not in my bone marrow – first bit of good news for a while!

So, the treatment….  My haematologist was torn as to which chemo to give me, apparently he had two options:

  1. ABVD – the bog standard chemo for lymphoma
  2. A turbo-charged more aggressive chemo called BEACOPP which has lots more side-effects

Fortunately he opted for the ABVD, a combination of 4 different drugs given one after another all in one sitting, fortnightly, on Thursdays, for a minimum of 6 cycles (2 treatments per cycle, so 6 months).  After 2 cycles I’ll have another PET-CT scan to see if its working.

Chemo session 1

Holly and I arrived at 10:30 and I sat in the chair for 5 hours while the ‘getting better juice’ was pumped into me. First one is a big red injection and the others dribble in slowly from one of those bags.

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During the chemo a dietician visited and told me I have to eat like a pregnant woman (no sushi, no runny eggs, no rare steak etc). I can drink alcohol though!  The pharmacist came round too, with a suitcase of pills for me to take after the chemo.  Mainly to stop me being sick.

Chemo and pills side effects:

  • Day 1-4: sore mouth, fatigue, generally feeling weird
  • Day 4-6: burning indigestion (eased by plenty of peppermint tea)
  • Day 7-13: nothing, felt great!

The best thing about the chemo is that it gets rid of the symptoms I had (back pain, night sweats, weight loss and large glands).  Therefore I felt better in the second week after chemo than I had done for the 6 months previous. Great news… and the fact that the symptoms have gone (rightly or wrongly) gets my hopes up that the cancer is on its way out too!

Chemo session 2 

My good friend Josh joined me for the whole second session. Thanks mate, soz for the battering I gave you at travel chess (twice) 🤓.

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Holly and I met my friend Anthony and his girlfriend that evening for a nice  dinner. I felt pretty good… But when I got home and saw myself in the mirror I looked awful! A very grey faced-ill person.

My white blood cell count was very low, 0.4, so I was prescribed an immune system boosting injection which I had to administer myself the next day… In my stomach… This was not great fun.

Things were going smoothly, but then on the saturday after the chemo, just as my mum, sister and niece arrived for a visit, I developed a whole-body rash. Annoying. This meant a night in hospital while they kept an eye on me. The rash went away with a bit of piriton and was put down to a reaction to one of my pills and definitely not an allergic reaction to my family…

Hospital food was alright though…

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Other than the rash, no other new side effects really apart from a bit of hair thinning… Not sure if I’m just being paranoid about that though. Going to start woolly hat shopping.

I think that brings you up to date. Chemo session 3 tomorrow. Can’t wait!

3 Positive, positive, positive

After the misery of the previous 2 blogs this one is all about the good things.

Although it’s obviously incredibly unlucky to get struck down with a bit of cancer at 26 I’ve got a lot of things going for me! Sorry if this is a bit self-indulgent… Here are reasons for me to feel lucky, in no particular order:

  • I’ve got the best girfriend in the world, it’s not even a contest. She’s ridiculously amazing. She’s called Holly by the way.
  • My family and Holly’s family are incredible, so supportive, helpful and loving. They make it all a lot easier!
  • I’ve got private healthcare through work, nothing against the NHS but everything is happening a lot quicker and the food in the hospitals is delicious.
  • If you’re going to get a cancer Hogkins is one of the best to get apparently! In terms of getting better anyway
  • My friends – I don’t think realised how many I have! Or how much they care about me. I’ve told them all that my family can do all the nice, feeling sorry for me stuff. They need to carry on being normal, taking the piss where possible and just being the best friends anyone could ask for.
  • I live in London, surrounded by world class hospitals, so I’m going to be getting some bloody good treatment that some people might not be as lucky to be close to.
  • My work have been very understanding and supportive, that’s helping a lot! I actually miss going to work!
  • I’m young so it’s going to be easier to deal with the treatment and get better quicker!
  • There’s a chap who has started the exact same treatment as me on the same day, we sit opposite each other during the chemo. A bit of comradery and even competition is really helping!
  • I’m ill and I’m going to get better. Some people won’t get better.

I’m sure there’s loads more I could list but I’m sure you’re bored reading it.

Thank you everyone, you’re the best.