Where Did I Put That Bag ?

Any moment now I’m going to press the ‘publish’ button.’m not even going to proof read it, so apologies in advance.  It’s taken me a week to get this far and I can’t put it off any longer. There’s another draft of this blog, that quite honestly bares no resemblance to this one. It deals with days out in Blackpool, Lew and his girlfriend Kirsty visiting, me being ill (just for a change). I didn’t cover getting horrendously drunk, I can’t remember much about that one. So much has happened that as soon as I’ve written something, I’ve needed to tag something on the end, so I’ve rewritten it, taken all the fun bits out, and I’m left with a diary of appointments and results over a week or so. I’m now sitting up in bed waiting for a package to be delivered containing much needed hand wear.(See later). Normally I’d be trying to catch up with sleep I’ve missed from the night before, but if I miss the postman I’ll have to go through all the rigmarole of waiting 24 hours and queuing up at the sorting office. I’ll jump back a week now…here goes. 

It’s silly o’clock on a Saturday morning, and the only sound I can hear is the clicking of the central heating as it kicks in. The Indian summer I so confidently predicted failed to materialise. Ever the optimist that’s me. Appointments for the scans came through rapidly. An MRI scan at 07.45 on a Thursday morning, PET scan 9 am on a Saturday, the timings confirming the urgency under which they were requested. A few days later I was back at The Christie for a colonoscopy. At least the results of the latter were immediate. The colonoscopy itself was uneventful, thankfully due to the high doses of Fentanyl, Midazolam and Pethidine that knocked me out completely. A shame really as I would have liked to have been able to watch as the camera made it’s way through my colon. The last one I had was prior to any surgery, so I was able to see the huge tumour that was present in my bowel, it’s blackness and nastiness ensuring the image would remain in my head for ever more. Thankfully this time nothing of the sort which was great news, yet also nothing to suggest a reason for the continual blockages and pain I’ve been experiencing in my abdomen. Mr S seems more than happy to blame the liver surgeon for creating the damage causing the problems (scar tissue), and to be fair, everything was OK in that area until I underwent liver surgery. I had to wait a little longer for the results of the scans. We overslept when results day arrived last Thursday, ensuring that we were going to be late for the appointment anyway, and so the closure of the motorway didn’t make too much difference other than emphasise the fact that I didn’t even have time for a coffee before we left home. On arrival at The Christie it became apparent that the majority of patients with appointments at the treatment centre that morning had been delayed by the same motorway closure, and so the fact that we were an hour late for the appointment seemed insignificant. After the now customary three stabs at my arm to find a vein, We were soon waiting in a consulting room to hear the results of the scans. It’s not difficult spotting my file to see just where I was in the pecking order, it’s the thickest by some margin, and I could see mine was in Dr S’s pile, meaning the news was significant enough for it to be delivered by the senior consultant. At least it was at the top of the pile, so no long wait to hear the news. No point beating about the bush, the one suspected area of concern on my liver has now been confirmed as two tumours. Apparently one little one was hiding behind the larger one they had originally suspected. The good news? No further evidence of any spread to any other organs could be found. I found it hard to concentrate on the latter as my mind focused on the two little bastards in my liver. 

The Saturday morning effort to complete this blog entry was interrupted by M, not pleased that I abandoned her. It’s a feeling I experienced every morning for seven years, waking with the feeling that someone was missing. I’m not even sure breakfast in bed made up for it, but the reason I was up that time on a Saturday morning was due to my intestines twisting and cramping. Although I hate to see her go home, by the time I dropped her off late afternoon the cramps were becoming increasingly severe. This is the part of cancer I hate most, how it’s left my body distorted and damaged to the extent that I never know how I’m going to feel from day to day. I can go to bed feeling fine only to wake in pain and vice versa. I’m convinced on this occasion it’s down to salted peanuts and mince pies. Who the hell sells mince pies in the middle of October? You know I’m going to eat them. Well, not any more. It ruined my weekend and I’m not happy. Particularly as I wake up Monday only to realise there was still washing up to do from Friday and Saturday. Urgh ! 

So where was I? Ah yes, tumours on my liver. Once again I find myself waiting to hear from North Manchester General and the inefficiencies of Pennine Health Authority. It’s not just me waiting, Dr.S has heard nothing from them either, despite asking them to look at the scans and give their opinion. It’s Dr. S’s view that the tumours are operable and that they would want to get in there as soon as they could to surgically remove them. He thought that would be within weeks ! Ha ha ha, you know how much I respect you Dr. S, but not every hospital or trust operates as efficiently as The Christie. I’m now back in the hands of the Pennine Acute Hospitals NHS Trust, their wheels move very slowly. Dr S was meeting Mr. L on Friday, he would discuss my scans with him then. And so on Monday I rang Debbie, the consultant Hepato-Biliary Nurse, to see whether those wheels had even been cranked up yet.The quick answer was she didn’t know. She hadn’t seen the letter from Dr. S requesting that they look at the scans (sent 3 week ago), but at least she promised to get my case listed for this weeks MDT meeting, and promised to phone me as soon as it was finished. I do believe her, she’s always been very helpful. Surgery is the preferred option from a medical point of view. Surgical removal of the tumours gives the best outcome, but that depends on exactly where the tumours are, there are some pretty major blood vessels in the liver and if the tumours are anywhere near them, it could jeopardise the chance of surgery. North Manchester General Hospital is the last place I want to be. My last liver resection went horribly wrong, with me ending up in intensive care for a week. I know the chances of that happening again are minimal, well they’re pretty high actually, it is a major operation, but the place does not hold good memories for me, I think this was my lowest point of any of my cancer treatment and I don’t want to be in that place again. I’m not going to do anything silly, like refuse surgery if it’s possible. I’ll jump at the chance of course. Dr. S reassured me that he’d had one patient who had undergone 4 liver resections. I’m not exactly reassured by that ! 

The fact that I’ve left this last piece of news until last is perhaps a reflection on how I feel, and how my views might have changed over the last 12 months or so. We didn’t get Glastonbury tickets !As usual our little syndicate got up early on a Sunday morning, only to get 87 minutes of engaged signals, recorded messages, crashed websites, F5 F5 F5…but it wasn’t to be. I knew it was going to happen sooner or later. I’ve not missed a festival since 1999, so really I can’t complain. We’ve not given up hope yet, there will be re-sales in the spring, when some of those lucky enough to have secured a booking decide they can’t or don’t want to go after all, and I do have one other card up my sleeve that might just work. I do want to go, at least one more time, with M as it is such a special place for us. Whether that will I happen I don’t know, it’s a long way off, and I know better than anyone how my plans can change from week to week depending on how my cancer is behaving. 

It wasn’t the last piece of news, obviously. We’ve got to Tuesday and I still haven’t posted this, so I may as well hang on until I’ve heard from Debbie tomorrow. At least then we’ll know a bit more about what is happening. In the meantime I’m going to do a bit of tidying up in the garden. It’s looking more and more likely that I’m going to be spending some time in hospital, and even longer recovering, so I’d better get prepared for winter now. I’m not looking forward to it, the neuropathy in my hands is getting worse not better. The degree of pain varies from mild to severe throughout the day, but it is there all through the day, every day. I’m on the hunt for more gloves, I can’t seem to find anything that is comfortable AND stops my hands from getting cold. Dr. S says I’ve just got to ride it out and hope that it improves. Poisoned by platinum, present in one of the cocktails of chemotherapy that was supposed to help me. It did nothing to prevent the tumours in my liver, and has left me barely able to use my hands at times.

Well the call came, late in the day, about half five, which just about dragged things out for the entire day. I hardly slept again last night, maybe a couple of hours from about 1am, but I know I was awake from 3am. The longer the night dragged on I was convincing myself I d catch up in the morning. No chance ! I was up and about at 7am. I would tell you I haven’t been anxious, but I doubt whether any of you would believe me. This is where knowledge and experience don’t work in your favour. The MDT took place this morning. Two tumours across sections 3 & 4, but both are considered operable. The precise location is difficult to identify due to liver re-generation the last operation. My liver has grown back to approximately 45% it’s original volume, (that’s about the extent of regeneration they expected, that was news to me) and they’re now planning on taking a chunk out of that. Surgery is likely to be around the middle of November, probably 13th. Unlucky 13th, good job I’m not superstitious hey ! It was 12/12/12 last time if you remember. The end of the world according to the Mayan’s. It nearly bloody was in my case ! M has been at hiding away at her home for the last few days, she’s not been well. The last thing I need now is to pick up some infection, so we’re staying well apart. Not ideal at a time like this, which is silly really as I’ve managed so far on my own. But her support has been invaluable, and reassuring. 

Finally, yes it is finally, can I ask please for your support for Haguesteam running in this weekends BUPA Great Birmingham Run. My brother, sister-in-law and nephew are all running in aid of BEATING BOWEL CANCER. As with everything they do, they leave it until the last moment, but if you can spare a few quid I would be most grateful. You can donate here http://www.justgiving.com/haguesteam .

So, do you know what day it is? Thursday of course, are you not following? Anyway, you’ll have to excuse me now. All that stuff I put away after my last (obviously it wasn’t my last) hospital stay has to be dragged out again…..now where did I put that bag?

This entry was posted in Bowel Cancer, Cancer, chemotherapy, Collapsed Lung, colonoscopy, Colorectal Cancer, CT scan, Festivals, gardening, Glastonbury, Glastonbury Festival, Health, Just Giving, Liver, Manchester, Metastatic Bowel Cancer, MRI SCAN, Oldham, oxaliplatin, Peripheral Neuropathy, PET CT SCAN, Pneumonia, pneumothorax, Saddleworth, The Christie, Uncategorized and tagged , , , , , , , , , , , , . Bookmark the permalink.

1 Response to Where Did I Put That Bag ?

  1. Pete smith says:

    Good luck, I will be thinking of you.
    Pete Smith

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