Lynsey, Hodgkin's Lymphoma
When were you diagnosed and what with?
I was diagnosed in August 2016 with Stage 3B Hodgkin’s lymphoma.
How did you find out you had cancer?
A GP arranged a chest x-ray, leading to a referral to haematology. After that I had a CT scan, bloods, a biopsy and PET scan.
What did you think and feel when you were diagnosed?
Relief! I had been feeling quite ill for the previous 16 months, catching every cold going, a permanent cough, a strange itch, a 4 stone weight loss without trying, nausea and exhaustion. I was getting very frustrated with my GP who kept congratulating me on my weight loss, telling me I was anaemic and diagnosing asthma. Every time I got ill, I ended up on steroids which of course improve the symptoms of lymphoma but then bring it back with vengeance when the steroids are stopped. I knew there was something wrong and like most people I did my own research on Google. I was well aware that it was most likely I had Hodgkin’s lymphoma but not once did I feel it was my place to suggest this to a qualified GP.
How did the people around you react?
Again, relief to have answers as to why I had been so ill. A lot were shocked; the cancer word scares people, and my close friendship group lost a dear friend to pancreatic cancer and she was only 32. I think a lot of my friends assumed cancer was a death sentence and it’s not – well, not for me anyway. I wear a wig, I look happy and healthy, I am out and about being busy, being sociable, ignoring the scary germ stories. A lot of people do approach me with that cautious look as if to say ‘I heard you had cancer but you look so well?!?’ I do like to shatter the illusion of what a person with cancer ‘should’ look like. It’s very much a hidden disease for many.
What treatment did you have?
I am on AVBD Chemo, fortnightly through a very temperamental PICC line. I am half way through 6 cycles, each cycle containing 2 doses. I have 5 doses left, but I did receive the all clear on a PET scan after 2 cycles (4 doses). I am also on daily self injected blood thinners due to blood clots from chemo and the PICC line.
How did you feel through treatment?
Honestly – crap!! I’d had enough after 3 cycles (6 doses) and getting the all clear meant I threw a wobbly, took back control, told the lovely CNS nurse to take out my PICC line as I was quitting! In hindsight it was stupid idea. They gave me 6 weeks off covering Christmas and I have started back. One dose down and it’s ok and taking a break let me see how quickly I would recover and return to normal. It’s given me the strength to carry on. The nurses were great in recognising that I needed that time and supporting me through it. Another big worry and a part in me quitting was the realisation that I would not be returning to work when I wanted to, money worries, half pay, statutory sick pay, benefits – it all scared me. Treatment is a nuisance and I have to give up about 4 days every 2 weeks to the hospital and my bed. In the scheme of things and time, it’s a very small price to pay to be well and cancer free.
What happened after treatment finished?
Treatment hasn’t finished yet but when it ends I will be traveling loads. I’ve already booked London for my birthday in June and NYE 2017. I plan to exercise, lose a bit more weight, meet up with friends, drink irresponsibly, foster cats and kittens, find a new job, finish a course I started before diagnosis, do a skinny dip for charity, a few colour run (walks in my case) and not say no to anything!
How did you get involved with Shine?
A member of another Facebook group recommended it.
What difference has Shine made to you?
Loads! Shine is a place to share tips, a place to let off steam….there is nothing you can’t ask and find an answer to. Everyone is so prepared to help each other, from questions about wigs to constipation – nothing is judged or rejected.
How do you feel now about your experiences? What‘s been the biggest change you’ve faced?
Hair loss. I didn’t realise how much your head hair is a part of you and your personality. Stuff the rest, I was glad to lose it, but the head hair was the most upsetting. I didn’t want to look like a ‘cancer victim’ – Wiggy the Wig has been my saviour! Accepting help from others has been tough as well as I’m a very independent person. I get lifts to hospital, visitors, housework fairies, etc. but sometimes I just need to be alone and not be fussed around.
If you could give one piece of advice to yourself before your what would it be?
Trust your instincts and fight your battle with your doctors if you know you are ill. Persevere and don’t give up, don’t be fobbed off and demand what you know you need. You know your body better than anyone else.