NED’s diary

I think I am in recovery. I have finished most of my active treatment for cancer (Inflammatory breast cancer, for those of you who haven’t read before) and I’m just receiving an infusion of Herceptin every 3 weeks. So same old chemotherapy suite, slightly different drug cocktail. Before treatment even began, I was skimming through breast cancer forums looking for reassurance/information/salvation and I saw people referring to vodka, gin, whisky etc. In my innocence, I wondered whether the treatment had to be accompanied by alcohol in order for it to work properly. In my defence, your honour, they were very confusing days.

People don’t tend to say ‘you no longer have cancer’ any more, in my experience. Whether it’s because of the rise in litigation or simply because they are being honest and realistic, I don’t know, but I had to mentally arm wrestle my breast care nurse into admitting there was no evidence of disease. NED. It’s about as good as it gets, I believe.

It’s at this point we are encouraged to start making something of a normal life for ourselves again. That’s a strange thought in itself as life will never be the same again, as it isn’t after any of the millions of miniscule changes which happen in our ordinary lives, but in this case, the change feels pretty mega. For some of the time, I feel the same as before but then there is a shift, a timeslip, a crack in my emotional pavement and it’s all different. As you will appreciate, it’s hard to explain.

Recovery is all about having fun, enjoying ourselves and re-connecting where possible. It’s also about rest, rest and more rest. It’s a bit hard to know how to balance it. Exhaustion is a daily word. I am fed up with the word ‘tired’. It doesn’t convey the overwhelming feeling that pins me to the sofa sometimes. I am fed up with the word ‘pain’, too. I don’t know why I have lots of pain in different places and I don’t know what else to call it. I don’t know why my feet hurt so much, and my knees, when I’ve just got out of bed. I don’t know why my hands ache, or my back, or my head. It’s all related to the big C, I guess. Or something else. Who knows? It’s just a pain in every sense.

So, what does a recovery diary look like? I imagined well defined hedges of rest interspersed with flowery beds of activity and the occasional fallow plot for really deep relaxation. No. It’s packed. I feel like I am fully employed with recovery. You might imagine hospital appointments would be few and far between now. My diary is crammed with pieces of paper relating to appointments. It looks like I have a hectic work life. There are appointments for prosthesis fitting, sleeve fitting for a bloody lymphodoema, hospital appointments at different hospitals to check out some of the pain, reflexology appointments, new Cancer Centre induction appointments, psychologist appointments, relaxation appointments….and on and on it goes. In some ways, it’s nice not to be left alone to sit and wonder and I know I’m more in control of the appointments than I let on but phew! It takes my breath away sometimes to think of how much work there is in getting…different, back on track, re-connected. There are also appointments for cake, dragon boat racing, singing and for re-connecting with the world of work.

When I finished my last bout of chemotherapy in December, I thought I would be ready to go back to some kind of work by the end of March. How wrong I was. A couple of weeks ago I was feeling bad about not feeling up to it and talked to my cancer nurse specialist at Maggie’s. She looked incredulous (in a nice way). “It’s way, way too early to be thinking about that” she said which was quite reassuring. I had it in my head that the treatment phase (which lasted for 9 solid months, not counting the Herceptin) was the toughest bit and that after that I would be up and at ’em shortly after. I didn’t expect the recovery phase to be equally tough, albeit in a different way, and equally long. You live, thankfully, and learn.

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7 thoughts on “NED’s diary

  1. Pingback: Cancer diary from Britain | Being Cancer Network

  2. Hello, is that Crosby beach?I love it there . I am celebrating , NED for 5 years tomorrow, finally leaving IBC behind me. I have changed, I hope for the better, I still get frustrated that my energy is not what it was, but hey, I’m alive !!! x

    • Yes! Isn’t it fantastic? I love the statues/sculptures. And many congratulations on your NED status. It’s good to hear you’re doing well. Thanks for dropping by, too 🙂

  3. I did write a comment on your first entry but I can’t see it there – oh no, don’t tell me I have gone back to the bad old days of losing anything I write.
    What went through my mind is that you don’t seem to take account of how debilitating pain, and constant pain is the worst, is. You can’t do anything about it but you can’t ignore it. So mentally and physically you are engaged in a battle all the time. How can you possibly start thinking about work? I’m with the nurse on this one, nor should you. Age, and I’m probably 15 years older than you, has some of the effects you describe too. How about you come to my house and find the pair of glasses I put down somewhere 6 months ago and I’ll come and look for yours. Don’t laugh – it’s always someone else who says “Isn’t that them?” Have you read any of the Virginia Ironside books – the first “No! I don’t want to join a book club” and the second is “No! I don’t need reading glasses!” I’m halfway through the second one at present but I’ll search for the first and bring it round when I bring your invite to Rod’s Ceilidh. Can’t email it as don’t have either yours or Marks email address!! That’s because you are just around the corner. Yes, I look forward to the next instalment too. marg xxx

  4. Thank you! It’s lovely to get feedback after I’ve written something and sent it out into the ether. To be honest, you both have more than enough to blog about yourselves. Maybe it’s something to think about? xx

  5. Your blog is so descriptive Shelley. I look forward each time to the next one. It is amazing how long it takes to get over these things. When Ihad my spine fused one of the doctors said it would take me 5 years to get over the anaesthetic (it involved three operations) and 5 yrs later I suddenly thought, yes they were right. Mind you when you take into consideration they’ve been in and had a walk round I suppose it’s not surprising. Have you tried meditation yet, I found that helped a bit though I let it lapse a long time ago. Take care, Mo

    • You could not have put it better Shelley, the road to recovery is a long hard haul but I’m sure you will make it. I am like everyone else who reads your blog , I look forward to the next one.

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