Yummy Mummies and Rainy Scrummies

I’ve spent the last week or so trying to write something for this blog. I have written a lot down, but most of it is out of date and irrelevant now. Maybe it’s a reflection of how I feel at the moment. Lot’s going on in my head but little that makes much sense. Although I won’t publicly admit it, I’m getting a little anxious as the date for my scans gets closer. Still another 11 days, and even longer to get the results. I think I’ve just publicly admitted that I’m getting anxious. I don’t want to get myself worked up over the results, I’ve no reason to doubt that the current line of chemo is working, but I am prepared for that not to be the case. This cancer has not been able to surprise or shock me yet, so I don’t want to start now. I’m prepared for all outcomes. In the last 13 months I’ve probably become less anxious, it’s all become routine. Coping with the chemo, the side effects, the hospital appointments, scans and most of all the impact it has on life itself. I’ve tried not to let it interfere with life, but the nature of the disease means it will. I regret not going to Leeds last year, in hindsight I could have gone. I was thinking of getting a day ticket for Sunday this coming weekend. I can’t go before then because I’m hooked up on the chemo pump until late Saturday. At the time of writing it seems unlikely, but hey, things can change, I managed to get a ticket for The Stone Roses last-minute. Now everybody is there and tweeting about it I want to be there too, see how I feel in the next couple of days.

I had months to prepare for Green Man, but in the end it was a mad rush, not how I had planned it at all. Wednesday night I was ill for most of it, not getting to sleep until around 4am, not conducive for an early start. I awoke to a missed call from my daughter. I had asked Alana to call with her A  Level results. A*, A & B , exactly what she needed to gain a place at The University of Sussex. Hardly a surprise, but I’m thrilled for her, can’t wait to see her in a couple of weeks time. Alana didn’t make me late, just made me realise I was late. In the end I was only 45 minutes late from the time I had planned to leave home, and the traffic was kind to me. After picking Deb up on route we arrived at the festival site late afternoon. The lack of signage should have given us some indication of what we were to expect for the remainder of the weekend. Parked in ‘crew car park’ according to the sign, it wasn’t a huge distance until we set up camp and prepared the barbecue in anticipation of the first of many downpours over the course of the weekend. The setting for the festival was stunning, I can’t think of any better in the UK. The natural amphitheatre, and the Black mountains as a back drop for the main stage was perfect. For the entire weekend the weather was either hot and sunny, or dense cloud and torrential rain. It was far too warm to wear anything other than a T-shirt, yet too wet not to carry a raincoat. Somehow we managed not to get drenched, despite the rain, and even managed a few self cooked meals utilising the art of cooking under an umbrella. The festival itself? Well if you like kids, lots of camping chairs, picnic blankets, designer push chairs, yummy mummies, the Welsh  and lots of rain, then this is the festival for you. I don’t really go by the headliners at festivals, but at Green Man it really was difficult to find anything that was truly inspiring. For a festival that has been going 10 years it really was quite amateur, more like a village garden party with a main stage. The Gloucestershire set was out in force, all the men having the latest Nikon or Canon round their neck, all trying to convince each other that they had the better kit round their neck, and telling each other “yeah I’ve been into photography for years”, you mean since digital photography became accessible and you could afford to buy an £800 camera you have absolutely no use for. Who knew there were so many photographers in the world? I suppose the camera came with wife’s insistence on the similarly priced pushchair, and the agreement that you would push it. We didn’t stay for the climax, the burning of the green man effigy. The giant ’monster’ covered in green swamp slime and marched through the festival site at various intervals before it was ceremoniously set alight on Sunday night. After spending all weekend praising this loveable forest monster to the children……they burned the bugger to death ! Must have left a lasting impression on the kids.  Don’t get me wrong, there was nothing to dislike about the Green Man, and in the highly competitive world of festivals, having been going ten years it clearly appeals to many, but not me. I don’t think we’ll be paying a second visit.

I’m back on chemo this week, I hope to be avoiding accidents with my chemo pump after the last episode. The District nurse called to remove my chemo pump, should have been empty by 2.30pm Saturday (2 weeks ago), it wasn’t. The DN was reluctant to remove it unless empty, it works with a balloon and vacuum, when the balloon is flat the pump is empty. I assured her a half hour wasn’t going to make any difference in the long run, but she insisted I wait until it was empty, left and told me to call when it’s empty. I reckoned there could be no more than half an hour, 45 mins at most remaining. The sun was shining and I had both the time and the energy to do a bit of pruning in the garden. The tree at the bottom needs cutting back to allow some of the sunshine through. Not a lot to do…..snip snip snip snip….Oooops. I looked down and there was a long tube hanging down from inside my shirt. I had snipped straight through my chemo line. I don’t remember doing it, just noticing the tube hanging. Nurse Sue thought it both funny and unconvincing, but either way the chemo pump was now empty. I’ve been keeping a close eye on the garden to see exactly where the dregs of Fluorouracil & sodium chloride have been deposited. Anyway, I was back at The Christie Thursday for the next round. They’ve stopped the Oxalipaltin due to increased side effects. Peripheral neuropathy, hundreds of mini  electric shocks in nerve endings. Normally affects the extremities, but in my case it has now spread to my legs and has become quite painful. I’m finding it increasingly difficult to use my fingers, anything that involves detail is becoming difficult. Doing up buttons, opening packets, playing guitar. The Onco said it was better to stop now before things get out of hand, particularly as it may not be reversible. I wasn’t happy, I want all the ammo I can use, but I have to rely on the doctors knowledge and experience. I’ve only got one more treatment to go, so in the long run I’m hoping it won’t make too much difference.

Finally, can you believe that a year has gone by since The Manchester Blog Awards ! The awards have now blossomed into the Blog North Awards. I was honoured to have been short listed last year in the best personal blog category, that’s going to be more difficult with the expansion of the awards, but who knows. I’ll have to get nominated first ! If you would like to do so you can here

http://www.blognorthawards.com/enter-a-blog . If I do manage to get short listed then I shall unashamedly be begging for votes in the near future. Nominations close on 7th September.

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This entry was posted in 5-FU, Avastin, Be Clear On Cancer, Beating Bowel Cancer, Blog North Awards, Bowel Cancer, Bowel Cancer UK, Cancer, chemotherapy, CT scan, digital photography, Festivals, gardening, Green Man, Health, Hickman line, Manchester, Manchester Blog Awards, Metastatic Bowel Cancer, MRI SCAN, Music, Oldham, oxaliplatin, Peripheral Neuropathy, Saddleworth, Springhead, The Christie, Uncategorized, Uppermill and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

3 Responses to Yummy Mummies and Rainy Scrummies

  1. Pete smith says:

    Hi, hope you don’t mind me putting my oar in. I am now stuck with irreversible peripheral neuropathy which came on strong after my chemo course had ended. If you have the chance to back off on the oxaliplatin before any permanent damage is done then I would take it with both (numb) hands.
    best wishes
    Pete

    • Thanks Pete,
      although I had mild symptoms for the first few reatments, it didn’t come on strongly until after Number 4. I’ve stopped now, and by all accounts that is the right decision. Just on 5-FU & Avastin now.Sorry that you’ve had to suffer. What was the response to your chemo? Good I hope

      and thanks for reading my blog 🙂

      • pete smith says:

        No other permanent problems. The very best of luck with everything. Thanks for writing your blog.

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