We were utterly blown away by Sim Warren’s unexpected news of remission. After she’d finished partying all night, we asked her to tell us a bit more about what happened:
Last July I was told that the chemo for my relapsed lymphoma had not worked. My tumour had in fact grown. I was given ‘options’.
Option A – stronger chemo, then more chemo, then a bone marrow transplant. This carried a significant risk of death or long term morbidity (a posh term for other conditions caused by the treatment, for example: heart disease; leukaemia and hypothyroidism).
Option B – a palliative option; to try a very new treatment called Brentuximab which in a small study extended life for an average of 10 months.
Option C – Do nothing in which case the doctor estimated I had 6 months to live.
I chose option C. But to say I did nothing is misleading: I went on a 10 day retreat at a yoga ashram; I bought a puppy; started chanting; went abroad twice; did a loop the loop in a biplane; did a 10km run; went to London a few times to see some shows and be a tourist; dyed my hair blonde; renewed my wedding vows; had a big 40-minus-1 birthday party; had tons of fun; took up street dance, salsa and zumba; and went back to the ashram. I filled my life with colour, friends and laughter and cultivated a complete F@%K it attitude.
For me at that time I absolutely made the right decision, I never regretted it. Some people found it hard to get their heads around me not wanting treatment. People want you to be actively ‘doing’ something, ‘fighting’- and if I wasn’t having conventional treatment then why was I not having an alternative treatment? Well because I really wanted to fill my life with joy and not spend the last months of my life chasing a cure and having it become a full time job. My acceptance may have appeared defeatist but I just saw it as realistic, shit happens, people get ill and die. I think the acceptance gave me a lot of peace.
After the 6 months was up and I was still breathing I thought, ‘Well I may as well try option B’. I had lived it up for 6 months, run out of money, it was winter and I had no plans. So I signed up to be a patient again. In February I started Brentuximab which is chemo attatched to an antibody. It targets the lymphoma cells and has minimal effect on the rest of your body. Within 10 days the external swelling on my chest had disappeared. 18 weeks later and I am in remission, actual wow! Now I am looking at a stem cell transplant and a reasonable chance of a cure.
I cannot describe how it feels to know I may well see my 40th birthday after all. That I will need a 2013 diary. I might even get to India one day. I may (god forbid) have to work again. I get to watch my son become an adult. I have lots more good times with friends and family to have…
It’s still sinking in, like the last year was all a dream. I have to say, dying was liberating! There’s no excuses for not doing ‘stuff’ because it’s now or never. I have been saying yes to so much and also getting others to embrace life and fun more. But it’s weird in a way to learn to be mortal again; random stuff like my smear is overdue and I hadn’t got round to it ‘cos it was like, ‘I haven’t got time to get another cancer.’ And I might have to pay off my credit card (oops). There is definitely some serious admin to do.
I do believe that magic happens. I am so blessed to have my life back. Obviously this drug has been fantastic but I also feel that the huge amount of support and love I have had sent my way has also saved my life. That – and salsa! I am hoping that living won’t change me too much!
Read Sim’s full story here.
If you have a story of acceptance, please share it.