The waiting game

4 minute read time.

A dear friend of ours has just sent us a slim volume of self-published poetry entitled My Life in Verse. I am inclined to put out one of my own, viz and to wit: There once was a lady quite crabby/Who bitched when her life became scabby/She wore lots of hats/And had lots of cats/The cutest of whom was a tabby.

Unfortunately, Molly and the ShadowCat heard me reciting this, and now they're not speaking to me. It's tough, I tell you, being an Artist.

So. It's almost two weeks since chemo #6 and last. Nothing much happened, or nothing amusing anyway. Actually ... no, nothing much at all. It took the usual three attempts to get a cannula in (note to Becca, who asked: I don't know why they didn't give me a PICC line, but I don't think I would have liked it any more than I liked the cannulas, so I'm not that fussed), and nobody had ordered my post-chemo medication from the pharmacy so we ended up hanging around the hospital for an extra 45 minutes when all I wanted to do was go home and fall into bed - chemo is very sleepy-making, isn't it? - but that was it for drama. And you would never get a TV series commissioned on the strength of that. (Actually, you might, but it'd be shit.)

The only slightly odd thing was that my arm hurt afterward, but not where that session's cannula had finally ended up. What hurt was where they put the cannula last time. I guess my veins were totally traumatised by that one. If you can think of a more reasonable explanation, do let me know.

So, that's it for treatment for the time being. Now we wait for the end of the month, when I have a CT scan scheduled, and then I have an appointment with the oncologist on 13 February. Rush, bustle, and scurry, that's the NHS's watchword. (Bad self: do not be rude about the NHS. They do a wonderful job and are a national treasure, much like Dame Judi Dench.) (Well, okay, not much like.)

All of which leaves me hanging rather uncomfortably in a kind of limbo - and, you know, a woman as perfectly spheroid as I am doesn't stand a hope in hell of getting under that pole. I have absolutely nothing to do, and I am soooooo bored I can't even tell you. I am as bored as Sherlock, but with less of the shooting holes in the walls - and that only because I don't, probably fortunately, have a gun. "Hils," I hear you say, with the wisdom that comes with solving other people's problems, "then why do you not find something to do, and, you know - do it?" To which I respond, okay, cleverclogs - I get snotty when I'm bored, no wonder I have no friends: such as what? I'm not well enough to do anything physical, and my brain is too numb to do anything clever. And I have played so much Farmville of late that I am inclined to take my imaginary farmer by her scrawny little virtual neck and throttle her. 

Silence.

Well, it's okay. I didn't really expect anyone to have a solution. The thing is, all the time I've been ill, I've been working toward When I Finish Chemo, which was its own kind of limbo: all I had to do was turn up for appointments and do what I was told, and not think too much about it. Now I don't even have to do that. I am measuring my life out, if not in coffee spoons, then certainly from one mealtime to the next. At this rate they are going to have to bounce me down the road to my next appointment.

The only distraction I've had was not a welcome one. Remember how my HR department told me to send my medical certificate and their SSP1 form to the job centre? They didn't bother to tell me there was a form I needed to fill in. A loooooong form, that needed to be filled in over the phone - of all the stupid ways to do anything, most especially if you happen to have breathing difficulties. So the forms came back; and then I had to phone one bit of the job centre to find out what to do next; and then I had to phone another bit of the job centre to do it. And then the printed copy of the form arrived, so I had to go through that and correct all the bits that they had got completely wrong - such as the address of the Churchill, which they seemed to think was in Eastbourne - and send it back. Actually, I wasn't supposed to send it back, I was supposed to phone them up and talk it all through again. I sent it back.

And I still have no idea how this affects my national insurance payments, or my NHS entitlement. It would be awfully sad if the NHS suddenly decided not to treat me any more.

From which you may gather that I am not entirely confident that it's all over yet. There is still the breathing problem, which worries me more than I usually let on - what worries me most is the problem of trying to explain it so that the doctors will take it seriously, since it is not a trick pony and refuses to perform on command. And my tummy is still hurty. But, as has previously been established, I can't tell the difference between Mr Crab and constipation, so who's to know if that even means anything?

Certainly not me.

Anonymous
  • FormerMember
    FormerMember

    Thank you, everybody!

    Unfortunately, I know far too much about publishing and the publishing industry. I won't list all the reasons why a book wouldn't work, because that would be negative and depressing, but trust me, it wouldn't.

    Also negative and depressing: me, trying to think of things I am good at. It usually ends with me bursting into tears. I'm good at that. But seriously, some days I think there must've been an evil fairy present at my birth, I can think of no other good reason why I should be so spectacularly talentless. I don't just mean professionally, I can hold down a humdrum office job okay, but hobby-wise too: can't sing, can't dance, can't play an instrument, can't cook, can't sew ... That evil fairy was a real bitch.

    I'm putting stress on myself now, trying to think of what I can do next. I really don't want to go back to my job, which is tedious and dreary, difficult to get to, pays rubbish, and had me so depressed that getting cancer and not having to go there any more came as such a relief that I was able to come off my antidepressants. But what else is there? It may be a bit early to think about it, since my current medical certificate doesn't run out till June, but it's got to be thought about sometime. Contrariwise, I would actually be almost grateful for work I could do right now, from home, in between bouts of falling over - just to relieve the boredom. But, once again - what, and how?

    On the upside, the DHSS, or whatever they call themselves these days, has decided they can pay me income and benefit support to the magnificent tune of £60something a week. Wahey!! This is assuming that they don't get Ridiculously Huge Form #2, which arrived the day after I'd received the benefits confirmation and had foolishly breathed a sigh of relief, and change what passes for their tiny minds.

    (WWF people: I can't send out any challenges, I've got too many games going, but if anyone wants to send me a challenge, please do.)

    I could do my filing, I suppose. Oh the excitement, someone hold me back.

    xxx

  • FormerMember
    FormerMember

    Hi again

    Cruton, my consultant said that I was being too hard on myself....and that was 2 years after stem cell. The psychological issues can be worse than physical, and thankfully he recognises that even now. I had to retire at 54 from a job that I enjoyed, and when I received my small pension they recommended that I did not look for work, even if my treatment was a success.

    Hilary, I used to play the piano, and organ every Sunday at my Church, but since loss of hearing from chemo I find my enjoyment of music has altered, as I hear everything differently. I played my piano once, and found it so upsetting that I have not touched it since, and although I have been asked to return to playing the organ, again I have declined. I also do not feel safe driving as I don't feel as if I'm aware of traffic around me. It wouldn't bother some people, but it makes me very tense. i only drive short local distances.

    My consultant did refer me to counselling services, but I found writing and reading people's experiences here made me realise that I'M NORMAL or at least my feelings are. I did make a mood board and start a special box of things that made me feel good.....a birthday card from one of my sons that said fantastic Mum.....(.and last week he said that if my daughter turns out to be half the Mum I am then her little boy is going to be very lucky), a funny card with old ladies at the seaside saying Girls on Tour to remind me of the girls I go away with....my Race for Life medal from last year.... I look at these things to remind me of how lucky I am.

    Have you photos that have been waiting to go in an album? Perhaps you could design some funny greetings cards? Do you need a major sort out?

    Take care xxxx