When were you diagnosed and what with?
I was diagnosed with Glioblastoma multiforme grade IV in July 2011. I was told that there was no cure, only palliative treatment and 'the average life expectancy after diagnosis’ was 12-14 months.
How did you find out you had cancer?
I had a ton of symptoms for at least 6 months before my diagnosis: blurred vision, loss of vision, migraines, and left-sided weakness in my arms, legs and face. I also had a lot of random vomiting, and unexplained weight loss. I blamed a lot of the symptoms on my job, car, glasses and husband though!!
What did you think and feel when you were diagnosed?
I was in shock for about 6 months I think and had absolutely no comprehension of the seriousness of having terminal brain cancer. I had absolute faith in the medical profession and in my ability to survive against the odds (chance of living more than 5 years after diagnosis= nil). However, it has been 5 years 3 months as I write this!
How did the people around you react?
My husband at the time had a very difficult time. I think he saw himself as a victim who had a wife with terminal cancer. My refusal to accept this ultimately led to our separation. My mum, sisters, brother and step-dad were all very strong and pragmatic. We never had a realistic conversation about dying or death - it was pretty much, “you are strong, you will get through this, and we’ll get you through this”. With a lot of gin and jokes and generally taking the piss! There was no acknowledgement of the possibility that I might die, despite the fact that many of my friends were dying. My godmother (who's husband died of cancer) was more realistic though and she and I went to look at funeral options together. I could speak about those things with her.
What treatment did you have?
I had a left-frontal craniotomy to remove the tumour followed by 30 sessions of radiotherapy with cytotoxic chemotherapy (every weekday for 6 weeks) and then 6 months of cytotoxic chemotherapy (tablets to take at home for 5 or 7 days – I can’t remember!). I also had regular blood tests, MRI scans, consultations, mask fitting, etc., etc.!
How did you feel through treatment?
I felt OK at the beginning of treatment. Everything was happening so fast, I didn't have time to think. I was in shock for a long time, I think. I was still able to walk to the pool and swim during my first few cycles of chemo though I couldn't always walk back!
To be honest it was all a bit of a novelty at the beginning: going into hospital and meeting new interesting people and getting loads of free stuff just because I had 'the big C'. I felt guilty for my mum especially as she had already lost her mum and brother at a young age. I wanted children and thought I'd never have them (I now have a gorgeous, almost-two-year old son).
The operation wasn't as painful as I thought it would be though the after effects were pretty bad (Constipation, the pain of the scarring, and having the 19 staples taken out of my head!) and having to be monitored 24 hours a day for 6 weeks was awful. I felt like a massive burden to my whole family and I also was banned from driving for 3 years so I had to leave my job and move back in with my mum. I lost all of my independence (I had been living away from home for 4 years and had lived with my partner for 18 months). I was also really struggling for money because I was on statutory sick pay and was costing my mum a lot in petrol, household bills, lost income and food (I was on steroids)!! I did become a lot closer to my mum, dad, sisters, brother, godmother and school friends who I had pretty much lost touch with.
Chemo was not as bad as I was expecting. I only spent one whole day being sick, though I was sick a lot of times on other days. The fatigue was shocking. I could hardly shower or get dressed - I was just too tired and weak. Some days I just spent hours sobbing really loudly and I didn't know why. My hair fell out in patches but never fell out all together so my mum shaved it all off, eventually, after a lot of persuasion from me!! I have a lot of short-term memory loss, which is annoying for me and everyone else. I forget whole episodes or words or people or events.
What happened after treatment finished?
I started doing work experience in a primary school during my last few cycles of chemo, and got a job working part-time as a housekeeper in a children's home (options were limited as I could not drive). I had started spending most of my time back in Wales where I was living before treatment, and then moved back full time as soon as I could. Life went more or less back to "normal" but I knew I had a terminal illness so I stopped saving money, paying pension contributions, and thinking about a career. I spent everything on holidays and seeing bands and friends because I had no future to think about. At the time I thought it was liberating to just not care. It felt like that bit in Groundhog Day when Bill Murray eats a whole cream bun and says, “I don't even have to floss”!
How did you get involved with Shine?
I actually can't remember exactly how I first heard about Shine, I remember emailing about going on the 2014 Great Escape in Bournemouth. I got on it, there were about 30 of us there and it was a real game changer for me.
It had been almost 2 years since I finished my treatment and I was not really in contact with anyone who had cancer. I met a fabulous lady called Helen, who also had a terminal diagnosis and meeting her really helped me to move on from having cancer and to realise that life doesn't stop when you have a terminal diagnosis. I think I was kind of waiting around for it to come back. Afterwards, I literally decided not to have cancer any more and I decided to stay away from the whole 'cancer scene' thing. Yes, I knew I had terminal cancer, but it was leaving me alone and I wanted to make the most of it. I got my driving licence back, got pregnant and had a gorgeous baby boy, split up with my husband, moved to Devon to be close to my family, went back to college to study nursing, got a lovely new job and got my future back! New friends didn't even know I had cancer and most just assumed I had alopecia. If they asked I put them straight but most were too polite to ask! And by that time, I was so used to being bald that I kind of forgot about it!
How do you feel now about your experiences? What‘s been the biggest change you’ve faced?
Life is good, but a month ago a scan showed a worrying growth. Brain surgery is booked, I lost my driving licence, and my job and studies are on hold but I don’t know for how long. Here we go again! The difference is that this time I have a gorgeous almost-two-year-old boy and I am (not quite) divorced!
If you could give one piece of advice to yourself before your what would it be?
My main piece of advice? Listen to your mum – she knows who is good for you! (She was right about my husband!). Having said that, before my life was defined by this diagnosis and it is now defined by my gorgeous, stubborn, clever, cheeky and incredibly naughty little boy! Even though things have got a bit tough lately, it’s all still about him.