Rachel, Hodgkin's lymphoma
What were you diagnosed with, and when?
I was diagnosed with Hodgkin's lymphoma on 7th November 2013 - my 38th birthday!
How did you find out you had cancer?
I had been to see my GP when I found a lump on my neck. I had suffered a really bad cold and the lump just "popped out" during a coughing fit - I thought I had pulled something in my throat! The GP checked my bloods for thyroid issues and when they came back clear, I was referred urgently to an ENT specialist to rule out cancer - I think I knew on some level that I had cancer then.
My ENT appointment went really smoothly considering. I was seen swiftly and had a needle biopsy, camera up my nose and down my throat and chest X-rays, not to mention lots of bloods taken. I had my husband with me and my best friend at the time. It was a bit of a whirlwind and my mind was quite numb - just silent tears and lots of them. I told my brother who was away for the weekend and made him promise not to tell our parents who were taking my daughter on holiday that evening.
A week later I had the lump removed - yes my throat was cut on Halloween! I was told that the initial results from the needle biopsy showed I had non-Hodgkin's lymphoma.
How did the people around you react?
My husband took my diagnosis in his stride and to this day I don't know what was going through his mind. All he has ever said is that he knew he had a fight on his hands. I spent the first fortnight looking in the mirror saying "you have cancer" and laughing. It was such a ridiculous notion, that I had cancer. I was 38. I had 3 children and had been through enough in life already.
I told my parents when they returned from holidaying a week later. My mum took it all in her stride but my dad looked completely shell shocked. In the following days we told the children and our friends, and my grandparents.
What treatment did you have?
I began six cycles of ABVD on 9th December 2013 and finished on 22nd May 2014.
How did you feel through treatment?
I spent pretty much all of that time in bed. The sickness was helped massively with anti - emetics - several of them!! The fatigue is something else completely. I was floored. My daughter asking me to read her a bedtime story was akin to asking me to run a marathon.
I wasn't brave, I didn't fight my cancer - I took to my bed and let the chemo do what it had to. I had chosen to shave my hair off before chemo knowing I would lose it. That felt like a positive step - I did not want to wake up with my hair on my pillow one morning and so took steps to stop that happening. My treatment was pretty much textbook. I was told what to expect and that it would work – and it did!
What happened when treatment finished?
Once treatment had finished I told myself I'd have a month to recover then get back to normal. I had suggested that my husband return to work in July - nearly 3 years later he's still not back!
I recovered through June, celebrated through July and hit rock bottom in August. I knew I still had a cyst to be investigated (something they found during my scans). My first appointment about that was interesting to say the least. This little "cyst" was referred to as a tumour and the consultant seemed intent on saying the word "tumour" as many times as he could in a sentence. This little "cyst" resulted in major abdominal surgery which needed several weeks of prior medication and a stay in ICU.
I think the one thing I found very difficult to cope with was a lack of understanding by others including those closest to me. I was in a completely different part of my life to what they (and myself) expected me to be in. I had had three lots of counselling/therapy to overcome what I have been through mainly because of my loss of identity.
How did you get involved with Shine?
I discovered Shine by accident towards the end of my treatment. My chemo was running late so I was sitting in a waiting area and I looked across and saw a flyer for Shine. I picked it up and thought it probably wasn't for me but took it anyway. I like the idea it was online and decided to introduce myself.
I had no idea that what I was feeling was isolation until that point. I posted a remark about being devastated by the abandonment of two close friends (godmothers to my youngest child). I got several replies saying how the same thing had happened to other people and that it was absolutely not my fault. As soon as treatment ended and I was feeling up to it I went to a coffee morning. I can only describe it as walking into a room and feeling an automatic bond with the people in front of me. It was instant. I had no idea what their cancers were, how it had affected them or even their names. It was just this amazing "we get it" bond!
What difference has Shine made to you?
I tried to get to every event Shine held in the North East as it gave me a sense of support I couldn't get else where. Not from my husband, my family, my therapist. Shine gave me my life back after cancer took it away - so much so that I am now one of the Network Leaders for the North East.
How do you feel about your experiences now? What’s been the biggest change you’ve experienced?
I don't really feel very much about my experiences. They were shit, but they were just experiences. I am most definitely a stronger person through my illness and through Shine. I am, however, not brave or strong or inspirational.
The biggest change I faced is myself. I am not as tolerant as I once was as well and am definitely more selfish. I had to learn to I was. I was Rachel for 38 years of my life and I knew who she was and I liked her. Then came cancer and I was just another cancer patient. The Rachel that emerged from that was a stranger and I have had to come to terms with that. And this Rachel isn't a pushover.
If you could give one piece of advice to yourself before this happened, what would it be?
I don't have any particular advice to the pre-cancer me, but cancer allowed me to see who I could depend on and who didn't deserve my time. My time is precious and I won't waste it on those who don't deserve to be in my company!