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

    Hi Honey,

    This is the stage that did my head in and how I came to join macmillan. My boredom plummeted the depths of hell in its stages. I tried knitting. Got as far as a mobile phone sock and threw the needles out the window. I tried crochet, felting, reading, sewing, games, nothing worked.  I read kids books, I stared at the wall I stared at the floor, I stared at the ceiling. OH god was I bored....

    The only thing that relieved it for me was my boss asking me to think about a problem he had at school and to write a paper for him on any ideas I had. That helped for that odd hour in the day when you can do stuff... the rest of the time was sleep and staring into space and thinking. Enough about me, I have a solution to 3 of your problems... I know genius or what eh?

    So, you write so entertainingly, I suggest you spend your time writing up your blogs into a publishable format. A few people suggested to me that I should put my blogs etc into a book when I was writing them more often than now and they were funnier as I had time to think about what I was writing... I thought about Little My's adventures in Macland.... and I was going to include other people's too.... I then got the Oh we can't see your tumour news and  ended up going to work instead so how about Crabby Lady's Memoirs of a fainting couch or something? Perhaps you might like to compile a book of your stuff, some of warped, some other blogs etc. If you donated some to Mac and kept some of the proceedings then you are not bored, done something good for mac and made some money so you don't have to worry about scary benefit forms...

    I will throttle your farmer for you.

    This is the scary bit wondering what next and was that it? or now what etc? More waiting and waiting and bloody waiting... you have my sympathy on that one. That is the time when i went a bit psycho and wrote tearful blogs etc. I hope you get news like I got (well, even better than me cos you don't want the pooey bum stuff) but I wish you those wonderful words... "we can't see the cancer" I was convinced my liver was as bad as it might have been etc and convinced all the other symptoms were cancer and spread etc and then lo and behold... it is just something else.... so if I can do it, so can you cos you are fab and you have to get betterer so we can go to the seaside. Oh and surely we have said ner and sod off enough to crabby to get the hint?

    OK, off to see if you have played your turn... and if you are bored, write more blogs cos I love reading them

    Big hugs Crabby lady

    Little My xxxxx

  • Hi Hils

    I really don't know what to say as I have not been through the treatment both you and LM have and have not experienced the awful effects and after effects or the breathlessness that is lingering on only the fear that the cancer has come back

    My Mum had a saying about advice "all them can manage a kicking horse except them that's got one" 

    so no advice from me but would venture that LM suggestion about writing is well worth considering as I too enjoy your writing

    Sending you love,hugs and a hope that you will soon have better days

    Scraton xxxx

  • FormerMember
    FormerMember

    Hi Hils

    I think LM has hit the nail on the head for something to do.  You certainly do have a way with words and I would be first in line to buy the book on condition that you autographed it for me of course.

    Aaaaaarrrrgggghhhhh benefits forms are indeed a complete and utter nightmare as our Gordy found out and it was made worse by the fact that his Macmillan adviser did not send one of them in (according to DWP) and then the adviser went on long term sick leave and it appeared that no-one else was taking up his case load so Gordy got another form and filled it in again and ended up losing money.

    Hope that things get better for you hun!

    Much love and huge squidgy hugs,

    Nin xxxx

  • Its so difficult getting folk to understand why we can't do anything even though we may not be ''ill'' ... the fatigue and bouts of sleep followed by being too weak to do much and having had brain zapped by chemo so can't concentrate on anything for long .......... so frigging frustrating!!!!!!!!!!

    So, many empathetic hugs for you honey.

    And you write beautifully and with a certain wit and style - I love it too! I scribble off poems and short stories, but writing a blog that people can relate to AND want to see more of is another kinda skill again :)) Could you get it into a 'book'  form? That would be brilliant!

    Hope the cats forgive you...............

    Much Love and cwtchs

    xxxxxxxxxxxxxxxxxx

  • FormerMember
    FormerMember
    Hi Hils I have not replied to you before but I too enjoy reading your blog. You have quite a gift to be able to write so entertainingly about misfortune!!! Hope you are feeling better soon Love Dianne x