Meet Claire...

Claire, osteosarcoma

 
How did you find out you had cancer?
 

On 9th April 1998 I was diagnosed with an osteosarcoma in the lining of my chest wall. It was a hybrid of two types of tumour - part Ewings and part PNET (peripheral neuro-ectodermal tumour).

How did you find out you had cancer? 

I was 17 years old and had just started doing my A-levels. I’d had a couple of occasions of pain in my left side which I discounted as being a pulled muscle. On New Years Eve I was at a party when suddenly the pain was much more severe. I spent the next four months being admitted and discharged from hospital.  They thought I had a serious pneumonia as my left lung had collapsed and my oxygen levels were being compromised. They drained my lung several times and I had several operations, the last of which removed the top layer of my left lung. It was during this surgery that the surgeon saw what he described as a 'slight thickening' of the chest wall and decided to biopsy it; he later told me it was on a whim, he wasn't expecting to find anything sinister at all. I was extremely lucky that he decided to biopsy when many doctors wouldn't have.

What did you think/feel when you were diagnosed?

Like anyone who has been through it will know, trying to capture the experience and put it into words feels like an impossible task. I felt like someone had sucked the air out of the room. I had a new label and a million questions. I remember my heart racing, not hearing everything the doctor said but zoning in on the fact that it was 'dangerous but treatable'. Equally, there were feelings you might not expect, a sense of relief at actually having a diagnosis and a strange feeling of calm at the centre of it all. In hindsight I think I went almost immediately into 'day at a time' mode - not consciously or through any sort of existing ability to cope - I genuinely think my brain wouldn't let me process more than a little bit at a time.

How did the people around you react? 

My parents were with me at the time and all I remember is them hugging me. The two of them quickly turned into superheros and remained that way throughout my treatment. Strangely I was very much removed from other peoples' reactions as I had to be quickly transferred to a specialist unit to start treatment. My brother and sister were so young at the time; I know my brother was scared but became fascinated by the whole thing (and is now a doctor himself!), my sister became a devoted six-year old nurse and was a source of constant hugs.

What treatment did you have?

Given the location of the tumour my consultant said that surgery wasn't an option. As such, he wanted to give me as much chemotherapy as I could handle with a final high dose chemo and stem cell transplant/rescue. I had nine cycles of VIDE (vincristine, ifosfomide, doxorubicin, etoposide) which were given through a Hickman line over four days every three weeks. After the first couple of cycles they harvested my stem cells so that they would be there after the final does. The final chemo was what they ominously called the “mega dose” and was two different drugs busulfan and melphalan, followed by an infusion of my harvested stem cells. I subsequently had eight weeks of radiotherapy (40 treatments) on my chest.

How did you feel through treatment? 

I don't think I started in an optimal position for treatment. I'd had severe pneumonia for months and had contracted MRSA during one of my procedures. As such, I felt pretty dreadful. I didn't leave hospital for months at the beginning and was kept in isolation because of the infection. I suffered badly with pain and sickness and lost a huge amount of weight. I am often tempted to sugar coat this part as I know it can sound scary to those who might be facing similar treatment; however, I know that I was particularly badly placed to start chemo and the side effects hit me harder than they otherwise might have done. I managed to get infections with every cycle when I was neutrapoenic. I had my eighteenth birthday waiting to start my high dose chemo, so not exactly the party I'd been hoping for! I suffered from a severe case of the grumps a fair amount of the time but had my amazing family around me who really got me through it. While the radiotherapy made me tired, I didn't suffer anywhere near as much as with the chemo, bar a strange square 'sun'burn on my chest. I think I survived treatment on a diet of ice pops, foot rubs and sedatives. Diet of champions.

What happened after treatment finished? 

Once my treatment finished I took a while to bounce back. Bounce is probably the wrong word, more of a slow shaky stagger back to 'normality'. Unfortunately I immediately began getting the symptoms of a significant side-effects of treatment and I spent the first year post-treatment in and out of hospital with chest infections. It wasn't long before they diagnosed me with a type of lung disease that had arisen as a complication of treatment.  It's non-curable and progressive so I had to learn that treatment wasn't going to be the end of it for me. However, I was extremely lucky that I have never had a recurrence of the cancer. With the all clear I went to university and law school and managed to have an amazing time in spite of the general inconvenience of living with a chronic condition. I've had a few late onset side-effects including two years where my stomach stopped functioning entirely and I went back to being a full time inpatient, fed through a tube (a look I thought I'd left behind in the nineties). What I found difficult was the fact that because I was technically cancer-free I no longer got the specialist help and support I had done through being treated on a young persons unit. I found the whole experience quite isolating and it has taken me some time to work out how to 'be' post treatment. I've gradually adjusted, accepted and adapted into a life that I never thought I'd have but am trying to rock it out regardless!

How did you get involved with Shine?

I met the lovely Ceinwen at another event in London and essentially invited myself along to as many things as I could! Although it had been some time since my cancer treatment I still felt keenly aware of myself as a cancer graduate ('survivor' feels much too Beyonce for the likes of me), and until I'd read a bit about Shine I hadn't realised what it was I was missing.

What difference has Shine made to you?

It's not just any group of people who you could talk about losing your hair, horrendous bowel side effects and the horrible isolating effects of illness as a young person while also laughing and having a pint. It just doesn't work. I've tried. What Shine provides is a space in which it's ok to just be however you are about whatever is going on whenever you want. When things are difficult I know I've got a whole crew of people around who won't try and fix things, tell me I'm brave or look embarrassed and shuffle off.  Sometimes the most powerful thing someone can say when you're struggling is 'me too'.

How do you feel now about your experiences?

While most aspects of my life have had to change in response to my illness - I couldn't work in law as my health isn't reliable enough, relationships have been a minefield(!), I haven't had a family as I would have liked - I still think it is my attitude towards it that had changed most of all. I'm never going to be someone who says they are grateful for the experience, but it would be disingenuous to say that it hasn't radically changed some aspects of my life for the better. I'm happy to take life more slowly and appreciate the small moments. I find myself using rubbish chemo days as a yardstick - so now, a day where there's no cancery shenanigans is a good day.

If you could give one piece of advice to yourself before your diagnosis & treatment what would it be?

Oh, so much! Just one?! I think it would be:


My advice would be to get honest with people about how you're really feeling and be amazed at the effect. Saying 'I'm fine' when what's really