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

    See Hils you already have an abundance of faithful followers of your wonderful writing skill. I enjoy reading your Crabby Lady Diaries. So seriously, do you think you could make it into a book?? I can see you, sat in waterstones doing a book signing. Can us Maclot be first in the queue for a signed copy?

    I can empathise with the limbo stage, it's an empty yet anxious time ugh, genuine empathetic hugs to you.

    Take care and look forward to an onwards and upwards,

    Love

    Jan xx

  • FormerMember
    FormerMember

    Hi Hils,

    What a lot of friends you have, who genuinely enjoy reading about your miseries! And that's because you do it so brilliantly. Sign a copy of that book for me.

    I'm further down the line than you and have had the good news and maybe one day I'll really believe it. But I empathise with the difference between you're cured and you're well! I have struggled to do any writing since the start of my treatment and it was hinted that it may go on like that for another 12 months! Perhaps I should play farmville so that I've got a farmer to throttle (with a choklit rope?)!

    LM's idea is good. You've beaten her once! Come on Hils you can do it again!

    But if you want someone dopey to beat send me a challenge!

    Love and biggest welsh cwtches, and sorska kram as well,

    Odin! xxxxxxxxxxxxxxxxxxxxxxxxxxx

     

  • FormerMember
    FormerMember

    Hi Hilary

    Oh so much of what you have writ is like wot I felt for AGES! When you're going through over a year (in my case) of treatments, setbacks, more treatments, more ruddy setbacks, you're just waiting for the next shitty thing to happen...or for something to happen.

    The problem is that we kinda go into Post Traumatic state, when the enormity of what has happened suddenly hits. Somehow when you're going through reatment you are just busy going day by day, but then when its finished to look back and cannot believe what we've gone through.

    Like LM I joined after treatment, when I didn't know who I was anymore, or the reason why I had survived. I would have panic attacks, burst into tears, have palpitations on a regular basis....this from someone who could deal with emergencies calmly before illness.

    I think putting a book together using blogs we've shared (!!!!!!!) may be a way forward, even if you don't publish. It may be cathartic. Set yourself some small target...I did Race for Life last year, and my chest was hurting so much and I was so breathless at the end, but I felt I'd done something.

    My daughter and I are thinking of joining Ian Botham on part of his walk for Leukemia and Lymphoma this year, and are going to take my little grandson in a babysling :-)

    Its a time to re-evaluate the things that are important to you, and to take your life by the scruff of the neck and say "THIS IS HOW I WANT TO LIVE FROM NOW ON". Hope the breathing improves....still have problems from time to time.....and it will take time to get your life back.

    Good luck

    Love

    Louise xx

  • Hi Hils 

    I have just been reading what Louise has wrote and it hit a nerve with me 

    When I saw the consultant last week I said to him I should feel "normal now" but I don't he said who told you that and I said well er me 

    He looked me right in the eye and said well I am telling you we did a major,major assault on your body when we operated let alone what happens up here pointing to his head  

    At that point I felt like a naughty school girl and also wanted to laugh because I had visions of little soldiers climbing all over me  

    I joined a while after husband left me on top of everything else and it was at a time when I felt I was a nothing with a sham of a past a crapy present and uncertain future and I like Louise had been some one who had always dealt with whatever came my way a bring it on kind of person and went to let me hide under a duvet and not come out as what was the point.

    What Louise says and LM about putting a book together sounds good as I and others have said we enjoy reading your unique take on things

    You mentioned somewhere else about training to be a counsellor and I believe you would be a really great counsellor 

    Whatever you do decide to do in the future I wish you all good things

    Hugs 

    Cruton

    xxxxxx

  • FormerMember
    FormerMember

    Hils I think I have said it before but I love your sense of humour which clearly shines through in your writing. I wish I had kept a diary or blog when I was going through my treatments, I know I would have loved to have read someone who was going through similar treatments and experiences.

    I wish I could write it now but chemo has robbed me of a functioning memory.

    I think you would make a great writer, cause every time I read something of yours it makes me smile and laugh out loud !! Isn't that what great writers are meant to do???

    Big Hugs

    Ruby xxx