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?

274. All is well…(as can be)

Today: Another visit even more undignified than the Gynae one. A doctor had come to examine me, though usually it's a specialist nurse who does the cystoscopies. At every stage they explained to me the steps of the procedure, which I have obsessed over for the last 3 days, so nothing new. I was moved from room to room, one to loosen my clothing, one to remove it (though she kindly said I could leave my top clothes on and put the gown over it all).

The theory

Who designed those gowns? Who decided that 6 inches of tape is sufficient to tie into anything secure except a knot? And who believed that fumbling fingers could cope with rear fastening? I actually got an irritated “Let me tidy you up” when a third nurse appeared.

The treatment room was well staffed, two nurses twiddling their thumbs, an assisting nurse who kindly blocked my view when she brightly pointed out I could see everything that was happening on screen and I replied that, having secondary cancer I had no wish to see, and a young doctor. They all look so young now. I feel so old! The doctor then explained (yet again) what would happen and I explained I wasn't a good patient and then he started poking around. That was a bit painful as his gloves were dry and brushing against sensitive areas was a bit much. Then the nurse “cleaned me up” with a baby wipe and then a surge of warm water which turned out to be local anaesthetic. In went the catheter, higher and higher (“Bear down” I was urged - how should I know what that means??) and then the cystoscope which had a very thorough look, did a twirl inside my bladder and then halted. The doctor asked me to look at the screen. There was a benign cyst there, causing no trouble and probably there since childhood. I watched the pretty colours as the cystoscope was removed and then I got the diagnosis. Probably a urethral caruncle (yes, I had no idea either), not harmful, unlikely to cause any problem but - here we go - considering my medical condition, he wants me to see a consultant in 4-8 weeks.

The reality

It was completely painless, the table beneath me was soaked and I had to dry myself up - they’d inserted warm water into the bladder so no wonder I was bursting for a pee throughout. I probably peed over the doctor. Occupational hazard? I am grateful I’m not a man tho - all that distance up the urethra in a flinching penis - ouch! BUT now I can stop fretting about it all. It just happened. Coincidence. I confess, I did feel a degree of anxiety (hardly surprising after what I originally saw) and feel relieved that he didn't even biopsy the tissue (which “sits at 6/7 o’clock externally. So the analogue clock survives - for now).

Friday: Clinic day, my last but one session with my lovely Dr U. It was what I’d describe as quiet chaos, one oncologist not arriving till 9.30 so the others had been dealing with her caseload. After an hour, I enquired at Reception and was told there was something of a delay but the oncologists were all doing their best to catch up - so I’d be seeing….Dr D, the last one on earth I would choose. She was cheery: “It’s a long time since I last saw you.” Reply: “Yes, you told me the cancer was gone and I was all clear…and here I am again.” No reaction. The appointment was like all her consultations - she didn't even acknowledge a student doctor was present (obligatory, if not good manners) But she’d gone through my notes so was kind of up to date:

Neck MRI: some enlarged lymph glands in my neck but no cancer detected. probably inflammation. When I said one was swollen permanently, she didn’t react. The scan picked up two small lumps in the back hairline, not doing any harm. Well, this is the first time any of my poor little skin mets has been officially acknowledged, so cause for celebration. They are the Big Boys now.

Head MRI: a tiny progression compared with last time, maybe 1mm. I know all the small ones will add up to a large one but for now, that sounded very good news.

Markers are steady. They haven’t dropped but that’s not essential. They have levelled out at 28 (9) and 25 (18).

All in all, I am StayMay (not quite Stable Mabel but relatively stable).

So now all I have to do is start cycle #32 tonight (always hard) and carry on as I wish to. Definitely not what my lizard brain was expecting.

273. Continuation …

WARNING  - gory details, not for the squeamish or the missish

Borrowed from Dreamstime

Friday I saw the tiniest man ever. Fair enough, I only saw him sitting at the desk and then peering at me between my decorously covered knees but he was like a baby sparrow - with the most beautifully delicate fingers I’ve ever seen on a man (including D who has beautiful hands). Stupidly I told the poor man, who looked a bit bewildered.

He was a Mr L, Consultant Gynaecology Oncologist - see, I go straight to the top lol - and he asked me the same old questions I can chant off by heart now. Then I was asked to go behind the screen, remove my lower clothing and cover my exposed self with the hospital gown provided. It never ceases to amuse me that they have full sight of the most intimate part of one’s body yet insist we patients cover our naked legs, which we expose to all and sundry when it’s warm enough. The nurse clucked round me like a mother hen, drawing the modesty gown further over my knees, presumably so I had no chance of seeing what instruments he held in his hands or notice his expressions.

He did a quick and very gentle examination and declared that my cervix and vagina were healthy and an colposcopy wasn’t necessary (PHEW) but that I required an urgent referral to Urology as he suspects I may have a prolapsed urethra. Eeeek! I’m NOT looking forward to that examination. The ‘urgent’ was because of my medical record - I think that was to reassure me. Tuesday I received a copy of his letter to my GP instructing them to make the referral and specifying the details - a purplish lesion on the urethra meatus. So there we go. Just one problem. I know my body well. I know the distance between the urethra and the vagina and, to be blunt, I know one hole from another (good job too). The “purplish lesion” is definitely attached to the vaginal opening! So now I wait to hear from Urology, not so prompt as Gynaecology. Actually I looked up Urology on the Hospital Trust’s website. 9/10 referrals wait an average of 38 weeks!! The strange thing is that, since the examination, I've had no discomfort, no pain and there seems to be an improvement altogether. Typical me.

I’m fast coming to the conclusion that, at this rate, the only department I won’t have visited at St James’s is Maternity!! Come to think of it, I did visit Anne there when she had Kathryn in 1981 (?).

Monday I heard via the Secondary Support Group WhatsApp that one of our number, Fran, has been moved onto a syringe driver (whatever that is) and doesn’t have long left now. She only went into the hospice for respite care and now they’ve withdrawn her treatment and put her on end of life care. I confess I did cry a little, as much for a ‘friend’ as for me - a reminder that this condition can turn on you at any moment. Now, we’re just waiting for news. I can’t imagine what she is going though, poor woman. And she’s only 50!!