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Taking on lymphoma

Posted by
13 Jun 2017

Thoughts, hopes and feelings on my lymphoma journey so far...

Hi all, Carrie here. I've decided to write a blog about my experiences with non-Hodgkin lymphoma in the hope that it might help support those in a similar situation to me.

I must warn you in advance that as well as the highs there will most definitely be some lows and some queasy situations and/or pics as well as some potentially awful language!

Journey so far

I was mis-diagnosed in 2008 and ‘the big C' was sadly not found until 2013. I have had numerous years of various treatment including an initial period where I was on watch and wait for a whole six months which was torture. I honestly thought I was going to die and couldn't understand why I wasn't starting treatment. I then went on to have 15 bouts of radiotherapy and 3 different types of chemo – I'm now on my fourth and strongest to-date.

I was originally due to have a stem cell transplant in November 2016 but due to an infection I had to wait. I couldn’t just wait patiently though (did I mention I don’t do things by halves?) and the transplant was deIayed even further when I broke my back in 6 places and slipped a disk trying to sit down on the toilet!!! This was all due to the basTOID steroids, not only did they make me pile on 4 stone and give me a moon face, broke my back and gave me osteo arthritis.

After recovering from my back surgery and having two teeth extracted, I'm now in the middle of what I hope will be my life-saving transplant. Here's some random thoughts on the process and my experiences so far based on some of my diary entries:

Day one - admittal & Hickman line entry

I was absolutely shitting myself about having a Hickman line fitted as last time it mysteriously fell out in the middle of the night, don’t ask me how! Even with a diazepam from the doctor I was so anxious like it was the first time all over again. Struggling to insert it they had to put it more to the right of my neck giving me loads of pressure.

Low and behold it was like a thunder storm had happened in the Joseph Holt suite, and I was flooding the place with tears that never seemed to stop! All of my emotions that had build up from 6 months ago came gushing out. I also finally got admitted to what I now call prison, although it was not going to be like a bloody 5* hotel in here.

Tony came to visit with my cousin Jemma who politely pointed out I was pottering round my room looking like Uncle Fester from the Adams Family with my ear stuck to shoulder terrified to lift my head up! Finally I plucked up some courage and then shit me there I was sat in my bed looking spit of Deidre Barlow!! I do not know which ones worse – you decide!!! Hilarious!!!

I was also given my first chemo tablets to start me off and managed to get some sleep despite my 4 hourly observations!!

Treatment setbacks

Unfortunately I started having  problems on day minus 4 including a nasty reaction to both the chemo and the dressings my treatment team have been using for my Hickman Line. The infections resulted in blistes all over my chest and saw my tempoerature rise to 38.8°CThe infection was incredibly sore to start with but the nurses were fantastic and managed to get things under control.

I also developed cellulitis in my leg which required lots of IV antibiotics to help shift that while on day minus 3 I also developed another rash on my neck, chest, arms, back and stomach with need IV piriton.

Transplant Day

I couldn't get any sleep ahead of transplant day or day zero as it's also known. I was scared to go to sleep in case I woke up even more poorly and was so anxious that I couldn't stop crying. Looking back I made it into a big thing in my mind and the transplant itself was nothing like what I expected. It was like having a blood transfusion and it was amazing to see the cells going back in to my body - the machines and everything looked like they belonged in space!

Here's some pictures I took of the machines which I hope give you a bit more of an idea of what the process looks like in reality:


Ways to keep sane

People have been giving me some great advice on things to do to stop me from going crazy during the transplant process which have really helped so far. I think the following are essential and really help you get through the days:

  • Mobile phone & charger
  • Magazines - I can't concentrate long enough to read a book which has often also made me feel nauseous
  • Photos of happy times - I have a happy wall with all my pictures and cards
  • Colouring in book - I've found colouring in really therapeutic and a great time filler
  • Pad & paper - I use this to play hangman, noughts and crosses and just simply doodle. It's about all I've got the brainpower to do at times!
  • A diary to write down thoughts and feelings
  • Cream and/or vaseline as you can get very dry

Ups and downs and staying positive

It's awful not being able to keep up with friends and needing to sit down all the time. There have been days prior to starting the transplant process where I have been so depressed about being stuck in doors and in complete agony. However you get up and carry on because that's all you can do. Being strong is something I've had to do every day, even when I haven't felt like it.

I'm now on day 13 post transplant and feeling really groggy with high temps since Thursday. I also haven't been able to eat or drink since Thursday as food has been coming straight back up. I've basically just slept like a baby whilst getting prodded and poked.

The good news is my blod results are positive so there is light at the end of the tunnel!

I'll post another pdate soon. I hope some of you have found my blog useful :)



A remarkable read from a very strong woman- my family and I hope with all we have that better, brighter and healthier days are just round the corner. Now get those temps under control, get home when ready and get living again, day by day. Us Ambassadors are with you in thought