Lawinder Gill
Posted by
Lawinder Gill

My Experience with Chronic Lymphocytic Leukaemia

Lawinder Gill
Posted by
Lawinder Gill
11 Apr 2016

I'd  not been feeling well for a long time suffering from colds and tiredness, I'd put it down to age, working in a school and basically my lifestyle. The tiredness was getting worse and after noticing that a gland on my neck had got bigger I decided to go and see my Gp, after numerous blood tests I was called in to the surgery.

I can remember feeling numb when she told me the news that I had chronic lymphocytic leukaemia (CLL).

I also remember feeling the tears rolling down my face and just saying to her "that's cancer".

I was sent to the hospital for more blood tests and a CT scan and a week later when I saw my consultant and he confirmed that I had CLL which is mainly common in old, white men (I am a 43yr old asian female) and the next step was to 'Watch and Wait'.

Watch and Wait, I wanted to scream and cry but I have cancer and your not treating me! It was hard to accept that I was not being treated when I felt so ill and tired, I went for regular check ups and each time my condition had got worse all I could think about was leukaemia.

I had thought the CLL was the worse thing to happen to me but it wasn't, 4 months after being diagnosed my dad was rushed into hospital and sadly after 4 days he passed away, this was what real pain felt like, my dad, my hero had left me.

After loosing dad I knew my condition had got worse, the night sweats, the tiredness, my neck was swollen, a day after my dad's funeral I went to see my consultant who confirmed that my cell count  had more than doubled and we needed to discuss treatment, after a biopsy we decided to start treatment. My treatment was 6 months of chemotherapy  (FCR), not easy but all I could think about was my dad and it felt like he had given me the strength to fight and win. It wasn't easy, I ended up in hospital twice with infections and suffered with ulcers and sickness, at times I just felt like giving up but I kept going ticking off each day has it came and each time I had  a bad day I thought of my dad and just had to look at my children to know i was going to beat it.

I tried to keep busy and I guess you find out who your true friends and family are, it's surprising how people react, one close friend decided to do something positive and raise money for lymphoma by holding a concert in her village hall and even though I couldn't go I decide to write to company's asking for raffle prizes. We managed to raise over £500.

My last chemo was in July 2015 and after another CT scan I was told in August that I was in remission, I can remember crying with happiness and the relief is just hard to describe.

9 months after chemo, I'm back at work, I can do jobs without feeling tired and I'm not in bed for 9pm and the best news I've had from my consultant is that there is no detectable CLL  in my latest blood test.

I know the CLL can come back at any time but I am hoping to go on to trial a drug which could give me a longer period in remission and I just take each day has it comes and try to keep positive.

I have made the nicest friends along my journey and I just wanted to say thank you to all the staff at the hospital for looking after me, my friends and family especially  my husband and children who kept me going, gave me the support I needed,  because I know it wasn't  easy for anyone.

The only advice I can give to anyone is to, keep positive, keep smiling and don't give up!

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Comments

Lizzie Goates
13.04.2016

This blog is such a great insight into the frustrations, and worries so many patients feel when they are told they will be on watch and wait. I was so sorry to read you lost your dad as well, please accept my sincere condolences. It sounds like you had some amazing support from family, friends and the hospital staff which is excellent, and I am so happy to know you are now in remission. Thank you so much for sharing your experiences and encouraging others to never give up when faced with extremely mentally and physically challenging times in their lives. Take care Lizzie  

27.04.2016

This blog is the one that inspired me to start my own blog. Thank you X thank you for sharing your experience it helps knowing we are not alone and its a great help to me reading how you have coped. Good luck Lawinder and I hope you stay well xx Maria (mid treatment for CLL)

31.05.2016

I am sorry for the loss of your dad.  MY dad died of CML a couple of weeks before his 90th!!!  Thanks for sharing your story.  It is an inspiration for others going through the same grinding ordeal.