Once in a long time I feel a comment, such as this written by Terry Given at Respectful Insolence, is worth offering to a wider audience. Minor edits, including using full names, were at Terry’s request.
My wife Ruth Given (neé Skelly) died on 23SEP2012, one week after our 6th anniversary and 5 weeks before her 46th birthday, of lymphangitis carcinomatosis. New Years eve 2008/2009 we found a lump in her breast. two days later we had it checked out at our GP – yep, it was a lump. the GP booked an emergency mammogram and told us the appointment would arrive in the mail shortly. Ruth was a Nurse and I’m an engineer. we figured that unlike fine wine this wouldn’t improve with time, so on the monday I took Ruth to a private breast clinic and had a mammogram. The next day we got the bad news – DCIS, a 65mm tumour in the L breast and a small lump in the R breast. we scheduled a mastectomy immediately, and argued the surgeon into a double. Ruth had both breasts removed on the thursday, and we found that the R breast was also cancerous. Fifty grand well spent.
What really hurt was the lymph nodes – the surgeon resected 93 nodes from her L armpit, of which 89 were cancerous. Given the comments by the surgeon and oncologist, we realised this was bad – very bad. The next day we got the appointment for the free mammogram.
I had a crack at giving myself an undergraduate medical education, whereupon I discovered just how wrong I’d been. Previously I thought the biological sciences were “soft” and that Physics was where the smart stuff got done. I couldn’t have been more wrong – the biologists just had to wait until the 21st century for us physicists and engineers to develop the hardware they required to really get going.
The oncologist said without treatment Ruth would have 6 months or so – but with chemo & radio we could drag that out to 18 months or more. The chemo & radio were, of course, shithouse, but Ruth took it in her stride – giving other patients makeovers, arranging flowers for them etc. She was one hell of a tough woman.
18 months after finding the lump, Ruth had recovered well. And we lived life well – we took trips to australia, china, hong kong, england. and had a plethora of parties – including a “fuck chemo” party. The good times lasted until early 2011, when the expected metastases (89 hot nodes…) reared their ugly heads, with secondaries in her spine, lungs and ribs. more Chemo ensued, along with Radio to shrink the mediastinal tumours. and it worked pretty well – Ruths breathing returned to normal, and we resumed our lives.
CT &MRI scans showed the inexorable progression though, so in October 2011 we went to Italy for 6 weeks (against medical advice), doing both a western- and an eastern-mediterranean cruise. Ruth called it the best time of her life. It was pretty funny getting an italian doctor who was unable to speak english, to give her a zolodex injection (we didn’t speak italian). but we got there.
early this year Ruth had a couple of pleural effusions in her L lung. two taps & a pleurodesis later, after a painful 4-week recovery, Ruth was good again. this year went well, and we decided to sell our house, buy a cheaper one sans mortgage and splash out on one last cruise. two weeks before the house sold, Ruth had a pleural effusion in her R lung. We thought all would be fine, but it turned out that the problem was an infection and the lymphangitis, not the fluid. two weeks of IV antibiotics saw a monotonic decrease in lung function, and Ruth was transferred to hospice on Friday morning. The night before she asked me if she was dying, and I told her yes.
We chose to spend $50k on a private mastectomy for Ruth, because we had plenty of money (no insurance) and didn’t want to wait a month for a free operation. All the rest of Ruths treatment was through the public health service – and all up it cost us about $200 in prescriptions. I’m an engineer, and am familiar with factories; hospitals are just factories for repairing meat robots. I was very pleased with the level of care we received, my only complaint is with the sub-optimal resource utilisation (them expensive toys ought to run 24/7) but thats not the hospitals fault.
The hospice care was something else though. I cannot conceive of how it could be better. the place was beautiful, the staff kind and compassionate, the food not just edible but delicious. Ruth went in on Friday morning, reasonably OK. we sold our house on the Saturday, and on Saturday night we talked for 2 hours about my plans for the future. I specifically and repeatedly made the point that I was going to be OK, and that Ruth didn’t have to fight to stay alive just for me – that it was OK for her to go when she felt she’d had enough. She was relieved when I said it, and genuinely pleased to go over my short, medium & long term plans.
That night was bad. the night nurse was her friend Flo – whom Ruth had worked with in the spinal unit for many years. Flo was fantastic, and we got Ruth through the night without a catheter (she was adamant). On Sunday her whole family was there. her sister and I held her hand and encouraged her as she began Cheyne-Stokes breathing.
then her lung function faded away, and the emergent property that was my beautiful, funny, wonderful wife Ruth ceased to be, as I recited my wedding vows to her and told her I loved her. It hurt so bad, but I am grateful I got to do that for her.
Then I donated her eyes, went home and screamed myself hoarse. I had an extra 3.25 years as a direct result of her treatment – which itself is the direct result of decades of work by tens of thousands of researchers, clinicians, surgeons, technicians etc. And the sacrifices of uncountable patients, without whom there would be no statistical data with which to optimise the targeting of therapies. I am profoundly and eternally in your debt, and I thank you all.
As for the talentless dickheads who suggested drinking bleach, reiki and a plague of other mummery – fuck the lot of you, not only are you not helping, you’re making things worse.
Postscript [written as added thoughts in a later comment after the above]
I thought Ruth was pretty amazing, but I’m biased. As a victim of cancer, she is unfortunately one of many – they are all loved, they are all our sisters, our mothers, our children, our brothers. and they are all missed.
I can say that I am grateful for her cancer though – It really brought Ruth’s family together, and allowed the two of us (me in particular) to realise just what we had. Its true that you dont appreciate what you have until you face losing it.
So I am grateful. Not at all happy, but grateful. Its affected me profoundly, in a number of ways. As an Aspy I’ve never been good at the whole emotions thing. now, I can even cry in front of strangers. Its a helluva way to learn, and I dont recommend it, but it is effective.
I console myself by remembering that 6 billion people have lives that are infinitely worse than ours – and they get to watch their loved ones die too. nobody gets out of this alive; we really are all in it together.
the whole process, culminating with the donation of Ruths eyes, has convinced me to give my corpse to science when I’m dead. So my last act will be a teaching exercise, and a useful one at that. As the recipient of so much medical knowledge, its the least I can do in return.
Now I’m going to go have a good cry, talk to my memory of Ruth then go to sleep. It hurts, but only because I love her so much – which makes it all OK (for certain values of OK).