Holy Sh#t

How many times have I started with the phrase “I don’t know where to start”…? I’ve just arrived home from another stay in hospital, literally just stepped through the door. I’ve had plenty of time to think whilst lying in my hospital bed, and the blog has been foremost in my mind, only to the extent that I’m aware that everything seems to be running away from me, happening so fast that I don’t even have time to record events as they occur.So, I’ll make an effort this time if only to bring you up to date.
Chemo cycle #2 went ahead last week, a 20% reduced dose In an attempt to avoid the catastrophe of #1. Nothing out of the ordinary, if there can ever be an ordinary when dealing with cancer, I slept through most of the 7 hours it took to infuse the various toxins through my body, and I slept most of the following four days, waking hourly to wring the sweat from my bedclothes. I can’t say it was nice, there’s nothing nice about chemotherapy, there are only degrees of tolerance. I could give you a blow by blow account of all the side effects, but it still wouldn’t give you any more of an idea of how awful it is. Without doubt this is the worst it has ever been, and I am seriously beginning to question whether I can continue with any more. Even the reduced dose was only barely tolerable. I have dragged myself out of bed on my knees crawling to the bathroom, with the knowledge that I’ll be doing exactlty the same thing in 10-15 minutes time. It’s not the overwhelming feeling of nausea, the hot and cold sweats, not even the aching of every bone and muscle in my body. It’s diarrhoea ! Sorry to put that thought in your mind, but it’s with me 24 hours a day. The rumbling of my colon is constant, and no matter how many loperamide or codeine tablets I throw down my neck, nothing is having any effect on it.

 

Are you still with me? Well done if you are, I bet you’re in the minority. So after a week of constant diarrhoea I phoned The Christie, out of pure despair. The oncology nurse was very understanding, she thought I needed to ‘come in’ but alas no beds. So she sent me to my GP, not my normal doctor, a young female who’s opening comments were ‘why have they sent you to me?’. Very reassuring. To be fair to her, she did at least phone The Christie for advice, and spoke to one of the oncology registrars who had already been briefed on my situation, and on his advice, I was admitted to my local hospital, with a list of ‘suggested lines of treatment’, which in their wisdom they chose to completely ignore. They did hook me up to a drip to replace the various electrolytes, phosphates, magnesium etc, but they did the bare minimum, and I had barely got to the hospital steps after being discharged before the diarrhoea kicked in again. I am tempted to say I am disgusted with the treatment I received, but in reality it just goes to show how far the health service needs to go to provide a basic standard service to cancer patients throughout the UK. Surely we deserve that. My treatment reflects just how little your average hospital knows about providing the right care to cancer patients. I had to let of steam when I got home, and will be ever grateful to the guys at Beating Bowel Cancer who listened to me with such understanding and care. They reminded me how close to the wind I am sailing, which is becoming spine chillingly frightening when I stop to think about it. But one thing is for sure, I am determined NOT to die from diarrhoea ! Can you imagine having that on your death certificate as cause of death? No thanks, I want something a little more glamorous.

 

I’m back at The Christie on Monday, and the last few weeks have convinced me I now have some difficult decisions to make. In fact they’re not that difficult at all, probably the easiest I’ve ever made, it’s just accepting the situation that has been hard. But now I understand where I am, I’m very much at ease with the situation. I’ve two weeks, no less, to get fit and ready for Glastonbury and I’m going to concentrate all my efforts on that. I can’t tell you how much I’m looking forward to it. M is coming over to help me with my ‘Glasto pile’ … nothing to do with sitting in cold fields, it’s the mess that accumilates when you select all the things you might need to survive 6 days at Glastonbury. The plan is that the pile gets smaller and smaller as the date approaches, and only a fraction of it ends up in the car. We’ll see. 

 

A few administration notes now because I’m too lazy to send emails. The only time I seem to open the laptop now is for the blog, my phone does everything so why should I bother. Ahh….the phone is only really suitable for incredibly brief/rude email replies. Fat finger syndrome. Thank you to everyone who has gone to the trouble of messaging me with good wishes, they really do mean a lot. I seem to have more ‘cyber friends’ now than real one’s, but I am beginning to appreciate the value in that. As my disease progresses it is noticeable how many of those real one’s are dropping by the wayside. “Oh…how are you…you’re looking well…I’ve been too busy to read your blog” (not too busy to spend all your day on Facebook though). I don’t mind people not reading my blog, it’s not compulsory, but please, be honest…too busy? Those of you who remain I value so much more, and I don’t need to name names, you know who you are, and you are special. I will single one person out though, Gypsy, reading your emails have got me through some very long nights, and you really are special. Lisa, I haven’t forgotten about Liebster, just need to find the time to finalise it. And Rachel, I finally finished reading your book, and I love seeing your photos and how you are enjoying life again. Are you sure you want to marry that guy 😉

 

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This entry was posted in Be Clear On Cancer, Be Loud Be Clear, Beating Bowel Cancer, Bowel Cancer, Cancer, cetuximab, chemotherapy, Colitis, Colorectal Cancer, Glastonbury, Glastonbury Festival, irinotecan, Loperamide, Metastatic Bowel Cancer, Royal Oldham Hospital, Stage 4 cancer, The Christie and tagged , , , , , , , , , , . Bookmark the permalink.

7 Responses to Holy Sh#t

  1. Alec Norton says:

    Glad to hear that despite recent turns of events, you’re still committed to getting to Glastonbury. Having an aim like that’s got to help in the act of perseverance by having a goal to set your sights on at the end of the tunnel.

    As I wasn’t able to make it this year as originally planned, I shall try and get to finally catch up with yourself at next year’s instead, when we might hopefully be able to celebrate you giving the cancer the final boot.

  2. I hear you. It is an odd feeling when even you are bored yourself of all the side effects and medical dramas and feel like you have to keep quiet about it for boring everyone else. I really understand and it makes me sad. I love reading your blog, always have and you are helping so many by telling it like it is and your voice comes through loud and clear. Never met you but feel I know and identify with you pretty well, and that’s a talent! Thanks for reading my book and everything you said about it, your opinion meant a lot to me. Now get out of that bloody bathroom and onto Glasto and lets hope the dreaded D dies down in time. Much love and enouragement from a southern sofa x p.s. Wedding going ahead in under 3 weeks!

  3. Suze says:

    Hi. I think people honestly do struggle for words at times like this .. but then, it is nothing to the struggle you are managing. I will try to say something:
    Thank-you for sharing.
    Bless you.
    And bless our very own BBC gypsy too, it is lovely to know that she is supporting you so well. Cyber friends are good friends when the chips are down. We try to be there for each other, and I so so so hope you get to Glasto and raise a glass of something or other for our dearly loved and missed Hazel.
    Much love and deepest respect, Suze

  4. FreeMan says:

    “I was admitted to my local hospital, with a list of ‘suggested lines of treatment’, which in their wisdom they chose to completely ignore. They did hook me up to a drip to replace the various electrolytes, phosphates, magnesium etc, but they did the bare minimum, and I had barely got to the hospital steps after being discharged before the diarrhoea kicked in again. I am tempted to say I am disgusted with the treatment I received, but in reality it just goes to show how far the health service needs to go to provide a basic standard service to cancer patients throughout the UK.”

    Yes! Some peopleare very happy with the service they get from theNHS, I would be saying…

    I am disgusted with the treatment I received, but in reality it just goes to show how far the health service needs to go to provide a basic standard service to ALL patients throughout the UK.”

    Just treating everyone with respect would be a good start…

  5. Nancy Scott says:

    Hi Chris…I’m sorry to read you’ve been having such an awful time, but glad you were able to talk to our nurses. They’re quite used to people letting off steam, so do get in touch whenever you need to.

    take care
    Nancy

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