Who have you been supporting with cancer?
Can you tell us a bit about what they were diagnosed with and when?
Richard was diagnosed with hairy cell leukaemia in October 2009. It's a rare type of blood cancer where the cells look like they have little hairs on them - hence the name. In a twisted way we are 'lucky' he has HCL and not something more horrid. It moves very slowly and he probably had it for over a year before he was diagnosed. And while it is incurable it is very treatable.
What did you think and feel when you found out about the diagnosis?
We were in too much shock to think or feel anything else. He was diagnosed the day before the 20 week scan for our first child. He was told on the phone and then it was two days before we had a face to face appointment with the haematologist. That was a long, long wait. At the scan we were both pretty numb, my husband wondering if he would ever see the child and me wondering if I was going to be a single mum from day one.
Once we met with the haematologist we became a lot calmer. The word “cancer” is terrifying but it's a huge umbrella word and once we had the details and had a plan and a level of reassurance we felt better placed to deal with it. But I remember not sleeping much for quite a few months.
What support have you been able to provide to your husband?
He's my husband so I was and will always be here, emotionally and physically. He wasn't bedridden but as he had no immune system during his treatment so I had a hell of a lot of sterilising and cleaning to do! Neither of us could come into contact with anyone who had so much as a runny nose, which cancelled out most of our friends as they have kids.
Emotionally, I found it difficult because for the first time ever I couldn't say to him "it'll be ok, we'll work it out, we will be fine". It's hard to comfort someone when both of you feel the world is collapsing.
Fortunately his place of work were amazing and he could work from home - his wages still came in. I was about to go on maternity leave so that could have been a real issue for us.
What support have you felt you needed in dealing with the cancer diagnosis and treatment?
At the time, I just got on with it but as the years have passed since he went into remission I've realised that there are many issues I never dealt with simply because I didn't have the time and nobody ever asked. My husband came out of hospital three days before our daughter was born - you just get on with everyday life, it's busy. But things have been catching up with me, especially as the leukaemia is back and we will probably be looking at chemo again in a few years time. In answer to the question, I think I could have done with someone looking out for me a bit - after all my wellbeing is his wellbeing. I attended every appointment with my husband and they were fantastic with him, but no one ever asked me how I was. Bearing in mind that I was 8 months pregnant when he started chemo, I think there is an oversight there!
How did the people around you react? Have they supported you?
Our families were great, both of our places of work were very supportive. A lot of our friends were really good too - going shopping, checking in, letting us know that they were there for anything we might need. Frankly just a phone call or a cup of coffee was often all I needed to keep my spirits up.
Sadly there were some people we had previously been close too who we didn't hear from at all until we emerged out the other end. We really worked out who our friends were.
How did you get involved with Shine?
My husband found Shine through Maggie’s very early on and has been involved ever since.
What difference has Shine made to you?
Shine has given my husband so much and that makes a difference to me. I can only support him to a certain degree because I can't feel what he feels. Shine has opened up a world to him of people his own age, going through exactly the same things that he is, feeling the way he does, worrying about the same things. The support is constant. He has had so many amazing experiences with and through Shine, and we have made many really good friends along the way too. He also takes pride in the fact that he can give support too. Shine is about sharing the load and helping each other - it's fantastic.
The Shine Plus Ones now gives to me what Shine gives to him.
How do you feel now about your experience of coping with cancer? What‘s been the biggest change you’ve faced?
Cancer changes everything. We have always been active and happy but we embrace life differently now, we appreciate every little thing. Our tolerance for people who gripe and moan is a lot lower! We live with cancer every day but we don't dwell on it.
Change-wise, we have to think more about planning holidays depending on the latest blood test results. I am overly cautious about mixing with people who have illnesses that can be passed on. I think there's a heightened sense of caution in a lot of things we do that may not have existed before.
If you could give one piece of advice to yourself before you were affected by cancer, what would it be?
Take more holidays and stop working every minute of every day.
Has your role supporting your loved one changed your relationship with each other? How?
We were fantastically close before and we are fantastically close now. The only thing that has changed is that there is a seven year old in our home too!