This may sound like moaning - I hope it doesn't sound like moaning because I don't think it is.
This morning I had a clinic appointment with the consultant who has been looking after me since I was diagnosed nearly 2 years ago.
We started off talking about my scan.
"That's really good news", she said. "The tumour was so aggressive that to have achieved a year in remission is pretty good going."
"That's great", I said. "I'm still feeling really tired and struggling with managing the kids full-time on my own, though. Do you think that the treatment I had is still having an effect?"
"I wouldn't have thought so. No."
No! No? No? Am I going crazy?
Let's get this straight. This time two years ago I was growing an aggressive tumour and a baby. Since then I have had the baby, experienced a year of aggressive treatment, 'all they could throw at me', as it's been described. My stem cell transplant which is so toxic they don't administer to people over 55, and which comes with a serious mortality rate attached to it for those under 55, was less than 18 months ago. My radiotherapy finished 12 months ago. Through all that, and since, I've been looking after the kids, getting up with my newborn in the middle of the night, doing the shopping and the cooking. With some help but mostly myself. Not to mention recovering from the pregnancy and immediately hitting a severe and debilitating menopause practically before the baby was born. By the way - were there any other people of my age waiting with a squirming toddler for and hour and a quarter in the waiting room today? No, they were all old people reading magazines and books who could bloody well rest all day. Lucky? Me? Clever old me to get a massively rare form of a cancer that other people get when they're old in a much more treatable form.
But, a year on I should be feeling as full of energy and stamina as I did before this happened? Right!!
The tiredness I experience is like walking through thick mud wearing an iron helmet. It sits on my head and fills my limbs with sand. I watch Hattie teetering on a chair and I find myself calculating the likelihood of her falling and really hurting herself as opposed to just a mild bang because I'm too tired to get up unless I have to.
All I want is a little validation - a little, "You're doing amazingly considering what you've been through", from medical people who KNOW what I've been through. It's not as if I'd get anything positive from pretending I was tired - I still get to look after the kids, do the school runs, do the washing, shopping and cooking not to mention the cleaning (ha, ha) whether I say I'm tired or not. And if anyone else tells me that I've three small kids and I would be tired I'll scream. Yes that's true but this exhaustion is not like that tiredness. And I know. Because three years ago I had two small children who were at home all day and I was managing them and managing a stressful and demanding job. I couldn't do that now. I don't feel anywhere near being able to do that now. I don't feel the same. And it would have helped so much if I had heard last year that it might take me a couple of years to feel back to my old self - or maybe the hormonal situation might mean that I'll never feel completely ok. Who knows. I went to the Macmillan centre after my appointment and got given leaflets on massages, make-overs and having afternoon rests after chemotherapy. The point is, I have to do all this stuff - I can't have afternoon rests, but it would be great not to have to be a doctor to myself and give myself the licence to feel as I do. Because the pressure which I feel to be back to normal, to be better is huge. I pressure myself and I need to let up.
It's not as if I could be accused of sitting with my head under the covers, wailing at what's happened to me. I'm looking after my family, I'm learning to meditate, I'm booking holidays, I'm writing, I'm trying to lose weight. I don't think that's bad going. Talk about being cast adrift without support after experiencing this trauma. I wrote a post sometime ago about this, having heard some senior bloke from the Macmillan Trust on the radio talking about this issue. Pity it doesn't translate into practical help, support and sympathy when you feel you need it.
You know what? I don't even care if this sounds like I'm upset about nothing. Or feeling sorry for myself. Actually today I am feeling pretty sorry for myself. I started this blog for me, to help me chart my progress through this experience. And maybe I'll look back on this post in January 2012, fighting fit and energetic - if I'm still here - and wish that I could have known how long it would all take.
I started the HRT again last night by the way. Boo.
Hey, It's Okay
9 hours ago