Thursday, November 22, 2018

56 days

The nightmare started on September 26. September 26 is the anniversary of the day I moved in with Thomas many, many moons ago, so we'd been looking forward to celebrating our semi-anniversary until the world came crashing down unexpectedly...

For many years, I'd say most of my 40s, I've had health issues - digestion issues, prolapse issues, general gynaecological aches and pains that eventually got put down to IBS with a wee bit prolapse. By the middle of last summer I was signed up for prolapse surgery until, when I went in for the pre-op assessment, the consultant took one look at my age and tried her best to warn me against it. A last-ditched attempt to fix me was made - this time through pelvic physio. That began this February and went on till September. Still I had terrible bloating, constipation, a bladder that needed emptying too often but would never fully empty, back pain, an inability to wear any clothing round my waist (for all those who thought I thought I actually looked good in those leggings - it was that or my nightie!) and the fatigue linked to always being in pain. So yet again they started going on about irritable bowel syndrome and how I needed just to get on with it. I asked if they could check where things were sitting because I felt crap, to put it nicely.

On September 25 I got a phone call in the car out of the blue asking if I'd like an ultrasound at the Victoria Infirmary the following day. Hallelujah! I thought. I picked up the kids and threw them off at home then zoomed in, not sure I would make it by my 3-45 deadline. If not I was just going to have to miss it. (Imagine I had...) A doctor came out and took me in to a dark room, asked me to empty my bladder then started looking around inside with a wand. I should have noticed it sooner but wasn't really concentrating. I've only had that kind of scan before when pregnant. She was silent, her nurse was also completely silent. The machines were facing away from me so I couldn't see what they were seeing. She was printing photos and I could hear her measuring something, the way they do to date a foetus. It went on way too long and way too quietly. There was no general chitchat about what I did or my kids etc. When she finally put on the lights, I caught the look in her eyes. I turned to her nurse who also looked at me in a strange pitying way but said nothing. And then it struck me. The look in the radiographer's eyes was the same look as I had seen back in 2004 when I had gone for a scan, 8 weeks pregnant, unsuspecting and they had had to tell me there was no heartbeat and I was about to miscarry.

The doctor asked me into her room and told me she had found some concerning 'masses' growing on my ovaries and that she wanted me to go for an urgent CT scan. I asked how worried I should be and she said she couldn't answer my question, and therefore in doing so did basically answer it indirectly with the word 'extremely'. She said she wanted a scan of my entire torso to see if there were any other 'masses' in there. If she had actually said the words 'I think you have advanced ovarian cancer and I want to check if it has spread to your kidneys, liver and lungs' she wouldn't have been any more clear. They did blood tests at that point and told me my CA125 markers were extremely elevated. I was told I'd have a scan within the fortnight. 

I drove home in shock and parked in front of my house (I've no idea how) and phoned Thomas inside to come out. I relayed what had happened.

The next fortnight, which included poor Léon's birthday was spent in a daze of phoning and getting no info and googling and concluding I wouldn't see Christmas. I had every ache and pain listed as I always do because of all my health issues. I had to turn down two jobs as I couldn't sleep so couldn't concentrate. I could barely speak to the people I met on the school run or in the supermarket. I would  hyperventilate in Aldi and find myself unable to buy dinner. We spent most evenings in tears, trying not to freak Anna and Amaia out too much. Charlotte sussed it immediately and also went into a meltdown, not great two weeks into uni. Léon sussed it too, but as an optimist who remembered less of his grandfather's cancer years, assumed I'd be fixable.

After two weeks (which felt like 20) my scan came through. I went in and afterwards, asked what would happen next. They actually replied - 'we've no idea, we only scan, we don't deal with results'. Another two days meltdown ensued. I tried ringing the original consultant at the Vicky but got nowhere. Eventually on the first morning of the October week, I cracked. I phoned my GP in tears and asked if there was anything she could do. Five hours later the Vicky consultant phoned to say she thought, looking at my scan, that it hadn't spread though couldn't be sure but she'd arrange for a full hysterectomy within two weeks. She stressed over and over the need for haste.

The next day I flew to Italy. I needed to be away from all this as they weren't going to see me that week anyway (I'd double-checked). I sat in the sun and contemplated the fact that I was now 'only' looking at a contained cancer. Still I knew how many years I'd been unwell so it was hard to fully believe until they opened me up but at least for the first time in three weeks I could actually breathe, sleep and eat. Before I had started having crazy thoughts - my granny - Phyllis Buchanan - had died of cancer at 50 so I was going to die because I was called Phyllis Buchanan and I was 50. Every comment from the kids, even as small as 'will you do my hair for prom mummy?' was enough to send me into waves of panic and hysteria. I wondered if this would be my last flight, my last visit to my in-laws. My mother-in-law kindly offered to take me to her hairdresser one afternoon to cheer me up and I couldn't get past the thought that I'd be losing my hair six weeks later, so it was lovely but pointless. That's how unstable I'd become and Thomas was exhausted both from being both parents and my personal psychologist, while scared witless himself!

When we got back, we saw the original consultant who said I'd be done and dusted within a fortnight. If it hadn't spread yet, they didn't want to risk it spreading by holding off. Two weeks passed however and I heard nothing. I rang her again and was told my case was now with the oncology team at the Royal Infirmary. I rang them and after much passing from pillar to post, I was told they hadn't even put me on their system yet and they hoped they could fit me in by the end of November or early December! It would be a minimum of five weeks despite my being told I needed it to be two, max. The only thing worse than being told you have a cancer which has spread, is being told you have one that hasn't and then being left so long it does. Mental torture doesn't come close...

We started to melt again. Suddenly though, a consultant from a third hospital phoned and asked to see me ten days ago. He examined me and asked if I couldn't feel the tumours given they were already grapefruit-sized (>10cm each). This was the first time anyone had mentioned size and I was shocked. He told me I was carrying the equivalent of a twin pregnancy of 16-18 weeks. That would explain why my clothes felt a tad tight and none of my recent dieting had worked. He explained that often when they go in they find things not on the CT scan like it having spread to the lymph nodes and generally terrified me again... I was given some scary odds: 60% of people with my scan turn out to have cancer, only 15% of ovarian tumours are found at the pre-cancer stage and these are almost exclusively in women aged 20-40...

Eight days later he pulled me in. I was unconscious for six hours and he removed my uterus, tubes, ovaries, the tumours, and my cervix. When I was still barely conscious the surgeon also explained he'd found some worrying cells on my bowel so had brought in a third surgeon while I was unconscious to perform a bowel resection and send that off to pathology too. My dad died of bowel cancer in 2012. This frightened me witless. Nothing had spread to the lymphs however, which was something.

Pathology took six days and they rang yesterday:
Bowel: severe diverticular disease - painful but it won't kill me.
Uterus: ok
Tubes: ok
Cervix: ok
Ovaries: Pre-cancerous tumours that had not yet turned dangerous despite their size.

Bloody hell! I have aged ten years in the last 56 days but it looks like I might get to see my son graduate next summer, see my daughter through her time at uni, listen to my son's orchestra some more, see my little girl leave primary next summer and my littlest girl might even have me around long enough to remember me. In the last 56 days I have learnt that nothing matters in life beyond health, not really, because without it, you have nothing. If you have any aches and pains jump up and down till someone looks inside you. A little later for me would have left Thomas a widower with five kids in his 40s, would quite frankly have killed my mother and would have changed all the kids forever.

So apologies to friends who I've seemed a bit standoffish with recently, especially on a certain bus trip to Edinburgh in October when I couldn't really speak, let alone chat - my mind was elsewhere. Putting one foot in front of the other and not falling over took all my concentration. Thanks to those who have helped with my kids at Halloween etc, no questions asked. Thanks to teachers who've hugged away the girls' worries over the last few weeks when they confided their cancer fears in them.

And now I only have to deal with getting back to full strength with no sick pay, with Thomas trying to do all my school runs on top of his own full-time job, while contending, of course with having taken 6 hours to go through menopause rather than the usual 5+ years - that's going to be fun!

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