Joe S
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Life After Hospital - In at the Deep End

Joe S
Posted by
25 Jul 2014

Finally leaving hospital after months of chemo, TBI and dreaming of life outside of hospital can be an extremely surreal experience. The initial excitement is massive. When I was let out, all I could think about was getting back to my bed, back to seeing my dog and family and back to living freely in my own home. I wasn’t really living freely, but that didn’t really matter – I was home – away from the constant presence of nurses, away from the lack of privacy, away from the doctors and wards, uncomfortable beds and ill patients! It was weird at first, I was so excited to be back home but too tired and weak to do anything but sleep! 

As the excitement wore off and life began to return to ‘normal’ I started to realise how abnormal life was. Whilst I was ‘free’ from hospital, it was clear that they still controlled most of my life. Every two days I had to take the arduous journey back up to hospital for a check-up and blood tests with the ever-present possibility that I would need to stay in for the night with a high temperature. Part of you thinks ‘I may as well still be in hospital I’m still here so often’ but really you relish the moments (short lived or otherwise) outside of the hospital walls.

The truth was, moving from hospital to home was like moving from one prison to another (nicer) prison. You enjoy all the luxuries of the nicer prison but you’re still in prison... That was what it was like for me. Summer came around and I was hardly allowed to go out of my house. Every day I saw my sister go and come back from school and for the first time in my life I wished I could be at school! I couldn’t meet up with friends in case they were ill and they gave me something that may put me back in hospital (not that I wanted to see them looking so ill and without any hair).  I couldn’t go anywhere public where there were lots of people in a confined space. I even had to be careful around my dog!

Being in hospital, whilst unpleasant, became like my second home – everything was there for me: food, bed, guidance... chemo. Coming home and having to get up every day, talk to people and just having to think for myself was utterly tiring! It was definitely not plain sailing though, within a few weeks I was back in hospital with a bug and then in again in another few weeks with a temperature etc. Having to adapt from hospital life to home life on a weekly basis was a real challenge and still today I find going into hospital for a check-up extremely strange but at the same time extremely normal – it’s hard to explain.  Being in hospital, everyone says “Just think of all the things you can do when you get out” – the truth was, for a long time I wasn’t able to do anything! When they did eventually let me on a plane (after 7 months) we went to New York which was amazing and for me that was the mark of being better again. Probably the most surprising thing about being home is that the thing I enjoyed most of all was my sister’s company. I’d been stuck in hospital with mostly my parents for the last year and we’ve always gotten along relatively well but it wasn’t easy to get along with her in hospital so messing around with her at home again was nice. I don’t know to what extent having cancer three times has had an impact on her but I’m sure it has in one way or another.

Going back to school was scary at first! Seeing how much everyone had changed whilst I’d been away was weird. I had to go back part time at first and it was clear that neither the school nurse nor my mum were very happy with my stubborn persistence to go straight back to full time as it didn’t suit their shared idea of me slowly integrating back in. luckily I didn’t have to repeat a year but I did feel significantly behind for the first few months of my return. That was hard going into GCSE’s simply because I felt so far behind people I used to imagine myself in front of or on par with.  Overall I think I’ve caught up well and after just doing my GCSE’s I feel like overall it didn’t significantly impact my exams. Due to the TBI affecting my concentration I did have extra time in all of my exams but lots of the time I didn’t feel like I needed it which boosted my confidence somewhat.

On a more serious note, there are still times where I remember the sad times, the friends who didn’t make it, the ones who didn’t pull through. I feel lucky in a way because I feel like I didn’t really ‘fight’ like everyone tells me I did. They were extremely unlucky whilst fortunately I wasn’t. But that’s life and the only thing I can do is to think of those people who couldn’t do the things I’m doing today and feel lucky that I’ve got my health. Everything I do to fundraise or raise awareness will be done with them in mind.

Everyone’s proud of how well I’m doing “considering I spent so long in hospital” but I don’t think of it like that. I don’t want to live a life where I am doing well ‘considering my situation’ I want to be doing well full stop. Being more than 3 years on from my transplant thinking back that far is strange and I feel like life has returned to normal (at last). I just hope I can keep progressing to complete my goals and whilst I’ll never forget about my experience with cancer, I hope I can use it as an advantage to help raise awareness and to beat blood cancers.

Read Joe's amazing patient story

Watch Joe carrying the Olympic Torch in 2012




Hi Joe,

Thank you so much for writing this blog. So much of what you say about coming out of the hospital rang true with my own experiences too. The safety net is gone and you're not sure whether you should be concerned or not with every single little cough and cold that you pick up as you recover. Were you offered much support when you came out or told what to expect/how you might feel? I don't remember getting much if any and would really have benefited from being able to talk to someone who could tell me some of things to look out for and expect once out of the hospital.

Thanks again for sharing this - top blog!


  Hi Joe, 

Thank you for sharing your blog, it's really interesting to read about your experiences of coming out of treatment. We will definitely use this blog, and our mini interview in our Prioritisation of Patient Need work. It was great to meet you - enjoy the rest of your summer holiday! 




I am certain when you take over my job in a few years time, it will be because all of the amazing things that you are, where what you have been through will be a really important part, but it certainly won't be "considering your situation", you are and will continue to be an inspiration for being Joe Smale,

Looking forward to the handover and thank you for sharing your experience which will ring true with so many people who read it.




Fantastic blog Joe, a true inspiration to us all. I have nothing but admiration for people like yourself that confront their illness with such courage, determination and positivity, truly remarkable and I wish you all the best!


Hi Joe, I'm Carrie Samle and have ALL. I am currently in hospital with hit and read about your different stories.

I am 39, but the thing that intrigued me was whether or not we have any additional ties or is it just our surname.

I'm not sure of the best way forward, but wanted to say and hi and if your parents would like my mobile number, then I would be pleased to provide it