275. Reality check

It’s been a hard week emotionally. First, a young woman I never met but felt I’d got to know through the Facebook support group she set up died. She’d been more seriously ill for a couple of months, in and out of hospital.

Gemma was 34 when she first got cancer and 36 when diagnosed with metastasis. She soon discovered there was little support for secondary breast cancer so set up the Stage 4 Deserves More Facebook group to facilitate communication and mutual support between women with Stage 4 breast cancer. She was always very open about how she fared but always there to offer support and advice from her own experience.

She organised fact-sheets on the basics Stage 4 women needed - advice about employment rights, state benefits, travelling abroad (all the stuff I don’t need lol) - and signposted members to other relevant sources of information. She set up break-off groups where members could grieve their losses without frightening off newcomers and where families of people with Stage 4 breast cancer could exchange experiences, seek and provide support etc without having to see distressing posts from women at the end of their tether.

She had two young daughters, Ruby and Scarlett, and rather than shield them from the inevitable, she gave them the opportunity to make active contributions. They helped her put together the Welcome Packs for new members - I remember how touched I was to receive mine. Little pampery things like an eye-mask, hand creams, face pack; helpful things for treatment like tissues, wipes, word-search books, a pen and notebook - just little things that mean nothing till you realise how badly you need them. More recently she’d worked with her hospital to create Emergency Packs for women admitted to hospital at short notice, a brilliant idea that has spread to other hospitals.

How did she fund this? She never missed an opportunity to put Stage 4 Deserves More to the forefront. Every time I’ve won the Premium Bonds, each Christmas and birthday time, I’ve gone to Amazon Smile and I’ve purchased items from Gemma’s wish list. Then Amazon delivered them directly to her and into the packs they would go. Each tiny contribution from Amazon added to the fund. There were Just Giving pages, sponsorships - and negotiations with firms to provide discounts, such as the spa breaks I’ve not had, comfy pjs and other little luxuries we members might enjoy. She ran a monthly online raffle for members, knowing that the smallest surprise can bring light to the darkness. She sent out free copies of helpful books to mothers who have to explain their condition to their condition. She seemed to think of everything!

She and her husband also set up the Gem Foundation that was dedicated to fund-raising at every opportunity and so successful was it that S4DM began to fund research into metastatic breast cancer. 

And all the time, she was on that treadmill of treatment, improvement, decline, new treatment…. I lost track of how many times she was hospitalised, yet she kept adding yet another new step in her contribution to the world of Stage 4 breast cancer. In January, she and her husband arranged a huge 40th birthday bash (huge in that every member of S4DM was invited - and there are 1330 members!!), unfazed by being bloated by steroids and twice her pre-cancer weight. It had to be postponed because of another bout in hospital. But postponed, not cancelled. She would never concede defeat. Sadly, this time she didn’t come out of hospital. 

The outpouring of grief in the Facebook group was astounding - this woman had touched so many lives in such a positive way.

Then, on Monday, the sister of one of my Secondary Support Group members posted that her sister had died. Fran was what I’d describe as a force of nature. She befriended me when I first joined the group and I assumed she was an old hand. Not so. She was diagnosed months after me; she just discovered the group sooner. Our cancers were different but both of the rarer variety - perhaps that’s what drew me to her. Whereas I was the only member there with Triple Negative breast cancer, she was the only one there with the BRACA gene. Both of us had cancers harder to treat and with a shorter prognosis.

Fran was already on her second line treatment when we met. She was on paclitaxel (though it took me 3 meetings to realise she was wearing a wig and was as bald as a coot) and was optimistic because she’d responded to it well. I remember paclitaxel from primary treatment - 9 sessions nearly broke me (and don't overlook that car crash in the middle). Fran was onto her 21st when she was told it was no longer working. But during that time, she’d tucked her son up in his new bed at university, joined a wild swimming group, gone kayaking with her 15yo daughter and danced the night away at her 50th birthday.

Then she told us she was going into St Gemma’s for some respite care. She never went home again, deteriorating to the point where her oncologist (my own Dr U) withdrew treatment and she was put on a palliative care plan. She still stayed in touch via our WhasApp group, then asked her husband to send us messages - till he sent a message that he’d been told she was on her way out. It took more than 2 further weeks for the end to come, time when she was too weak and too ill to do anything. When her sister announced she’d died, all I could feel was relief for her. We have a humane approach to animals’ suffering, but not to human beings’.

So yes, a reality check for me. I do have a life-threatening and life-limiting condition and unfortunately, yes, it does do what it promises to do. Yet even now, it feels unreal. I experience all the frustrations, indignities and discomforts of being treated for MTNBC yet there’s part of my mind that just doesn’t register the fact that my fate will be no different from the fate of these two amazing young women - yes, young to me!! I call this a reality check but it makes no difference - it still feels unreal. And I’m grateful for that. It gives me an equanimity and peace of mind I never expected, certainly not in a woman who has thrown away her whole life anticipating ‘terrible’ things that have never happened.

Now I have to gird up my loins and face that awful moment of letting my oncologist move on, leaving me and my peculiar cancer to perplex someone else. I’m not looking forward to this. I wonder if the tears will come at last?