Welcome Home

We started off in the amber zone, then we were demoted to the yellow zone, as it turned out we only got a few flurries of snow, although there is still snow on the ground from last week. It’s starting to look as though we’re going to miss the worst of it altogether. Others I know however are bang smack in the middle of the red zone, a foot of snow and no electricity. Be careful what you wish for! Oldham council seem far better prepared for snow than I can ever remember, far better than they were for Christmas refuse collections. They seem to be gritting my road every three hours or so, and as I live at the bottom of a steep hill, I’m grateful for their enthusiastic gritting. Typical that they are so well prepared, and nothing happens. The pavements are pretty treacherous though, I don’t think we’ve seen above freezing temperatures for a week. Just the thought of slipping over on the ice makes me cringe. Even though I hunted high and low for a set of gripping chains for my boots, I’m in no hurry to try them out. Not that I’m planning on going out. I’m in lock down for the weekend, I’ve got bread, milk, eggs, and plenty of ingredients for a huge pot stew.

Apart from my continuing inability to control when I sleep I’m feeling fine. Everything is healing well, although a squirt of deodorant under my arm reminded me of the two incisions made to drain my lungs. They are not quite as healed as my other scars. I’ve partially solved the problem of lying on my right side, I can now arrange a set of about a dozen cushions and pillows to keep the pressure off my liver. Now all I need to do is to stop them falling off the bed as soon as I move. I’m pretty much left sided in everything. Left handed, left eye’d, so apart from anything else, the lack of vision in my right eye means I can’t watch TV in bed if I’m lying on my left side. The problem would be solved of course if my liver were on the left side as well, whoever thought of putting it where it is had no consideration for us lefties, but that’s pretty much typical of everything in a world designed for right handed people. I’m also learning that my arm chairs and dining chairs are just the right height to bash into my liver should I brush them as I am walking by. I’m learning the hard way to be more careful. Of course I’m not as well as I think or wish I was, and I’m getting a bit tired of people telling me that I shouldn’t expect to be. All well meaning of course, and all better qualified to judge than me. GP, District Nurse, Macmillan Nurse, oncologist all reminding me how ill I’ve been, on top of the major surgery I’ve just been through. I’ve just put’ the phone down after speaking to my Dad, who at 80 years of age has some difficulty in understanding my illness. He has what sounded like an awful cold, and can’t even remember whether he’s had a flu jab. He commented “I bet you feel better than you did 12 months ago”. I agreed with him, it’s far easier than trying to explain to him, but it did make me think when we’d finished our brief conversation. The truth is, damn NO, I don’t feel better than 12 months ago. This time last year I was just about recovered from chemo/radiotherapy, and was waiting the results of scans that would determine future treatment. Since then I’ve had a blocked bowel, two lots of major surgery, aggressive chemotherapy and a collapsed lung (twice). All this is supposed to be curative ! Do I sound angry? Do I have any right to be? Sometimes I even lose track of what is going on myself, so how I can expect others to understand is beyond me. People expect answers whenever I’ve been to hospital, yet there are no answers, we just move onto the next line of treatment. I don’t have the answers that others seem to want. It may seem strange to others that I can lie in an intensive care bed feeling that I’m not really ill. Of course I’m bloody ill, I wouldn’t be there otherwise ! So all in all it’s been quite a year. Yes there has been progress but the end is not in sight, yet.

And so we move on. I was back at The Christie on Thursday to see my oncologist, although he wasn’t there ! The registrar I saw could not understand why the appointment had been made, particularly as there were no scans to base any judgement on. Dr S had wanted to have a further look at my lungs before deciding on the next stage of treatment, and so it was left that I would await an appointment for a CT scan before coming back to clinic, to see him. A bit of a wasted day overall, yet at the same time it’s good to be back at The Christie, there’s something about the place that makes it so different than any other hospital. Even when in North Manchester I had nursing staff comment when they knew I was having my treatment at The Christie. They all wanted to mention their own experiences of The Christie. “Oh I went on a course there” “I’ve worked there when doing agency work” “ My Mum was treated there” The one thing they all say in common was that it is a special place. It must be strange to people who have never been there, and I hope you never have the need. Until you know it, it’s viewed with fear and trepidation, because of that dreaded diagnosis – CANCER, but you don’t have to spend long there to appreciate the great work that goes on behind those doors. Hope, care, compassion, respect, and more than anything, belief. I returned on Thursday after a brief absence of a few months and it could not have been more welcoming. The phlebotomists, clinic nurses and volunteers all made a point of speaking to me to ask me how I was and “where have you been?”. You just wouldn’t get that anywhere else. Sad news that the nurse who does my bloods did not manage to get her Glastonbury tickets. She was gutted, but equally delighted that I got mine. She must have passed the information on to the clinic nurse, who did get tickets, and we spent a good 15 minutes of glasto talk whilst I waited to see the oncologist. It turns out that we camp in pretty much the same area, but whether we manage meet up in June is another thing. I’ll be listening out for her strong Irish accent. When she’d finished Dennis, the clinic volunteer popped his head in to see how I was, and keep me up to date with the career progression of his niece, singer Jessie Ware. He always stops for a chat when I’m in the treatment centre, as I’m sure he does with all the other patients. I don’t think he ever realised how good and highly respected his niece was when we first started chatting some 18 months ago, and that I knew her music, let alone knew who she was impressed him from the beginning. The fact that you can have these conversations demonstrates the difference between The Christie and other hospitals. The staff and volunteers all want to be there. There is a long waiting list of people who want to volunteer, and it’s very clear that every member of staff enjoys their work, and more importantly, really cares for every one of their patients. I’m not a great fan of the honours system, but the award of a CBE to chief executive Caroline Shaw in the new year honours list is as much a recognition of The Christie staff as all the other great work she does for the NHS. Well done Caroline. Now can you sort the parking out. 

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This entry was posted in 5-FU, Beating Bowel Cancer, Brighton, Cider Bus, Dave Grohl, digital phptograp, Horsham, Jenson Button, John Peel Stage, Last of the Summer Wine, Manchester Blog Awards, Metastatic Bowel Cancer, OxyNorm, politics, Robbie Williams, Rochdale, T in the Park, The Christie, Tim Booth, Tony Wilson, www.interwok.co.uk, X-Factor. Bookmark the permalink.

2 Responses to Welcome Home

  1. Sandy L says:

    I always enjoy your blog. Its an inspiration to me. I am in a similar situation and am 3 weeks post surgery. I went back to see surgeon last Thursday and once again, the news wasn,t good. I have to go to oncologist and then get a hickman line fitted and start chemo again.I truly hope all goes well for you, and that your pain eases so you can at least get comfortable
    Keep up the blog. I always look forward to reading what you have to say.

    • oh Sandy, sorry to hear about chemo, it’ll be over before you know it. I’ve still got my hickman line, had it bet since last June, it’s a part of me now ! I’m waiting to hear whether more chemo is planned, dependent on what they find on CT scan, might be lung surgery first. Not looking forward to that, but I know it has to be done. Thanks for your kind comments on my blog. Good luck, I’ll be thinking of you x

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