Lesley R
Posted by

my journey

Lesley R
Posted by
11 May 2014

I was diagnosed in August 2010 with angio-immunoblastic T cell lymphoma.

In 2009  I went to my GP with swolen joints and was referred to the hospital to see a consultant for arthritis. I had all manner of tests and on one visit I mentioned weight loss. He asked me if I had any other symptoms and told him of night sweats, a rash and weight loss. He sent me straight away for blood tests and a chest x-ray.

A couple of days later I received a phone call asking me to come into his next clinic when he told me he suspected that I had lymphoma and that he had referred me to the haematology department and that they would be contacting me shortly. To say that I was shocked was an understatement.

I duly attended the haematology department in May 2010 and my consultant confirmed that I did have lymphoma and over the next few months I attended appointments for various scans, bone marrow biopsies and a mammogram. Throughout this time I continued to work full time. 

In September 2010 I started chemo. My first course was as a day patient at Blackpool Victoria Hospital. My partner, mum and dad came with me and it was a little daunting but the wonderful nursing staff were fantastic and explained everything in depth along the way.

My next 5 courses of chemo were administered as an in patient and I spent between 5-7 days in hospital receiving the best care ever. I started to lose my hair just before my first inpatient session. I kept putting off washing my hair for as long as possible and when I did it came out in clumps and then matted. I could not look at myself in a mirror and wore a cap constantly. My kind friend shaved the remainder off when I got home and it was so much better. In between this time I still attended the hospital in the day unit clinic for blood tests, blood and platelets. I also had 5 infections which required me to be an inpatient on intravenious antibiotics. 

On christmas day 2010 I was admitted to hospital with a temperature and tests confirmed I had swine flu! What a great christmas I had! And I was supposed to be making dinner for my family. Needless to say they went hungry!

In March 2011 I received my own stem cells for a transplant and I started to feel better and returned to work in August. I still continued to attend my clinic appointments. I had a chest infection in the November but continued to work but never got over it. 

On Boxing day I had a temperature and again was admitted to hospital through A&E. I had pneumonia so had antibiotics again but was discharged a few days later. I was still unwell and was readmitted on New Years Eve. A few days later I was transferred to the haematology unit where further tests were carried out and I also had pleurisy!

I received high dose antibiotics but by this time my hickmann line had been removed so every couple of days I had to have a new canula fitted and it was becoming increasingly hard to find a vein. I had blood tests every day and various scans and another bone marrow biopsy and was told the devastating news that the lymphoma had returned. This was the only time that I acually cried! I could not believe that after everything I had been through was all for nothing!

I was feeling very sorry for myself and told my partner and family that I only wanted to see them and my best friend and no-one else. I could not even speak to anyone. I asked the nurses to put a sign on my door "no visitors"! My consultant came to see me and explained that after the pneumonia and pleurisy were under control I would be starting high dose chemo again but a different regime and that i would need a donor stem cell transplant. My wonderful sister Lorraine was an exact match for me - I could not believe it! 

I was in hospital for 7 long weeks! I went off the hospital food - not that there was anything wrong with it, so my mum and best friend brought me freshly cooked meals which I thoroughly enjoyed but was starting to lose my apetite which was very unusual for me as I love food.

I had a further 5 courses of chemo as a day patient but the sickness kicked in. I did not experience this the virst time rou d. I was sick daily, every time I ate or drank and got to the stage that I did not want to eat as I knew the outcome. The weight fell off me. I was a strapping girl - 18 stone at my heaviest! I had no energy and it was an effort to get out of bed  ut I made sure that I got up every day even if I was just lying on the couch.

I was admitted to Manchester Royal Infirmary around 9th June 2012, starting chemo in readiness of receiving my sisters stem cells on 21st June. Everything went well and I only had slight GVhD with a rash mainly on the palm of my hands. I did get mouth ulcers and was in a lot of pain and was given morphine - wow what wonderful stuff! I don't think my family and friends were impressed getting text messages and phone calls from me at 4am!

I was discharged on 6th July, my best friends birthday - she said that was the best present she has ever had - getting to keep her best friend!

My recovery was slow. I was still being sick and losing weight. I still made sure that I got out of bed every day and I started taking my staffordshire bull terrier Jessie out for short walks, probably only 50 metres. But I persevered. 

I attend clinic every 3 months at present.  My fitness level is so much better. I have now bought another staffy and love taking them out. I probably walk between 3-9 miles a day - more than I ever did prior to being ill!

Life is good! So for all cancer patients stay positive, put a smile on your face and enjoy every day. :-) 

Comments

12.05.2014

Lesley thank you so, so much for sharing your experiences with blood cancer. Your story is incredible and an inspiration to us all!

To have been through so much and come out the other side even stronger than when you started takes huge determination and an enormous will power. Good on you! Reading your story brought back a few memories of my time in hospital - I'm with you on the morphine being a life-saver although I didn't like the crazy dreams that went with it sometimes!

Fantastic to hear you're doing so well - long may it continue!

Anonymous
26.05.2014

Wonderful. I come from Blackpool, Yorkshire originally, now living in Queensland. I am waiting for a donor .... If you fancy being a pen pal, please contact me. I'm a lady, young at heart, 54, one son doing his PhD and I'm. happily married. Chris Melbourne :)

Anonymous
27.05.2014

Hi Chris, that would be lovely.why don't you send friend request on facebook :-)