Even moths have to have fun

This week is an exhausting one. I suspect it is because we are at another anniversary. The 8th March is the anniversary of my diagnosis by the hapless consultant and the 15th March is the official diagnosis day, the one where Mr Mason answered the door only to be greeted by Miss Mason who had flown down from Newcastle to come with us to the hospital that day. Bittersweet.

The consultant who diagnoses me plays hockey. I am pretty sure she does, just by looking at her. There is a touch of what we English would call ‘jolly hockey-sticks’ about her. Kind but also with a touch of “Don’t be a baby, it won’t kill you” about her. She is kind and gentle when giving me the definitive diagnosis. It’s not good news, not by anyone’s standards, but she has seen hundreds of women come and go through her clinic, often having to give them bad news. I recall being seen by her about 18 months before after a suspicious shadow on a mammogram. When I go back for the definitive diagnosis, she just lets me shut the door before she tells me everything is OK and that it is not cancer. I haven’t even sat down at this point but she understands that we want the news as early as possible, especially when it is good. As I leave, elated and feeling bubbly, I tell her I hope the rest of her day is good. She smiles and says it won’t be. She has bad news to impart to some. The strange thing is that although Mr Mason accompanies me to the appointment, for some reason I do not want him to come in with me. How much changes in 18 months.

So, back to this week. I have easy meetings on Monday and Tuesday. The kind where the other people at the meeting are friends (in the first) and almost-friends (in the second) and we are allowed to comment on the food and snacks which are provided. My week goes a little off-track at that point and I’m not sure even now, as I write, that it has recovered itself. On Wednesday I wake and feel still overwhelmingly tired. If memory serves me correctly, I spend some time in bed and then come downstairs to see if I can wrangle my sewing machine into submission. It is only required to hem a couple of pairs of trousers and it doesn’t seem like such a big request but it (I) manages to break 4 needles before it will sew properly. While I am there I knock up a couple of lavender bags as I have a big bag from a failed postponed attempt last year.

Thursday is a real non-starter of a day. I wake late and feel unwell. I have a lunch date with a friend who I text and who graciously accepts my excuse allowing me to go back to sleep until nearly 3 in the afternoon during which time Mr Mason has been up working, walked Dog and made me some lunch which he perches gingerly on the side of the bed. The bed is, at this point, strewn with boxes of drugs as I was trying to organise my medication and then went to sleep in the middle. I am sure there is some psychological name for what I am experiencing, that there are buried thoughts and feelings which haven’t made their way to the surface yet but which I am still feeling the effects of. Everyone reading this blog will have different thoughts. Stay in bed! Get up and go out! Shower and brush your teeth first! I feel an anecdote coming over me. I remember being on the tube going into work one morning. The tube line runs from Heathrow into central London and beyond and the carriage I got in was also the mode of transport for a group of young American women. I got the feeling they had not travelled widely and had perhaps forgotten, in their excitement on leaving their native land, that in England we also speak English. I know it’s not strictly the same language. It’s been tweaked by many and, in any case, did not originate from our shores. They were having a loud conversation, mostly about what English people were like. Presumably they thought the line was for visitors and there would be no English people on the train. My mind blanks out the worst of their stereotypical nonsense but I do remember them saying “English people never brush their teeth”. If only the toothpaste companies had known that they would have saved millions on advertising campaigns. I’ve had some similarly bad experiences with British people abroad, admittedly in countries with a different language but that is no excuse. It was the teeth brushing that put me in mind of it and anyway, it was a good distraction from what is going on in my head (but which I have no access to).

Recovery from a major illness takes time and I have no map to guide me. Are days in bed allowed? Should they be discouraged? Maybe I’m like a little chrysalis and will emerge at some point into a huge, fuck-off butterfly. It reminds me of one we saw in South Africa. I daresay it was actually a moth and must point out at that I was quite unpeturbed whereas Master Mason and Mr Mason leaped from the car shrieking. We were staying at Knysna and had gone to a cafe overlooking the Featherbed Nature Reserve. When we went back to the car it was dark and as soon as Mr Mason turned on the car lights, the moth took flight. I say it was big, possibly a 6 inch wingspan but Messrs Mason Inc believe it was enormous and took flight, as did the moth, although they shrieked whereas the moth stayed silent (but possibly laughed an evil laugh in its head). Moths have to have fun somehow. And they were full-on, girly shrieks.


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.