Date

Treatment Blog - November 09

My Brother’s back in the country after a short break and some problems with buying somewhere to live that has gone shall we say not without complication. Anyway he came to see me tonight and he’s now starting to prepare for climbing Kilimanjaro next year for SCOPE. He will be raising funds for Scope and their work for children and adults with cerebral palsy. It’s now dead simple to donate, just go to the JustGiving page and stump up a few quid or whatever you can afford. My £50 directly handed over doesn’t appear  but believe me if was hard to give up, he waited until just after I’d taken my  medication and was most vulnerable.

Here’s a picture in hard training        Here’s his legal stuff    And here’s where to donate!

30.11.09

We went out for dinner yesterday to Helen’s parents’ house. I’ve written a bit about them before, they visited me every Friday while I was in hospital and over the last few years I’d like to think we can call them friends. So just as I thought I was getting back on track eating food I’d paid my gratitude during the meal by popping off to the toilet four times to regurgitate what wouldn’t go down. Fortunately there was a lovely black forest gateaux with cream for dessert and I had my share of red wine so at least I managed to keep a smile on my face! In the night again I was downstairs awake at around 3am and held out for about an hour with a hot drink until I couldn’t take it any more. I kept sneaking in to see if Jane was awake and when finally about 4am she was I told her I just didn’t know what to do so I was going to take all of the tablets for 8am and bop myself over the head in the hope of getting some sleep. Anyway that's what I did, apart from bopping myself on the head, at 6am when Lydia started to stir I had some porridge and went back to bed until 9am and woke up when Jane came back from taking Miriam to school.

After  having one total rip off quote for some work we wanted doing in the bathroom we set off shopping to price up the components and then get someone to fit it all for us, you’d never believe it - first shop and we were done and dusted, all that left was a bog seat to find and even that was one Jane had already seen so just had to go and get it - and fit it!

An hour later even after I’d chipped in my two penneth the damn thing broke, it was duly taken back to Focus and replaced and after another battle of wits with it I rang Andy our friendly artisan tradesman who said he’d pop round after work before he went home and have a look. He’d fitted loads of these sort before, the ones with hydraulic dampeners that close with a whisper. He broke the damn thing in just the same place as Jane had so it went back in it’s box and back to Focus under murmurings of ‘if he doesn’t give me my money back I’ll slay him with it’! So tonight we have nu upstairs toilet seat, hope we don’t get burgled how would hat look?

Tomorrow is the release of the next round of Blue Nose Friends—not wanting to stir up a frenzy but tonight they are being advertised on ebay for £50 even though if you're nifty on your feet in the morning they only cost a fiver in the shops!

28.11.09

Miriam’s 5th birthday today and all went well. I slept no more than OK last night but went back to bed for 2 hours and had what I’d call a deep, sound sleep and after breakfast and coffee yes coffee that I’ve not had for over six months I felt pretty good. Anyway I’m not writing war & peace tonight ‘coz I’m quite tired and we’re invited out for dinner tomorrow evening at Helen’s parents’ house, you’ll heard of me talk of Brian & Yvonne and I’m sure we’ll get to sample some pain relief in the form of red wine of which there will not doubt be some comparison required to find the most effective. Again comments today from fleeting visitors visiting Miriam on how much better I look than the last time they saw me which in some cases I couldn’t remember the last time I’d seen them! Nice to be back on earth and to see Jane smile a bit :-)

27.11.09

Had a bit more sleep last night and Jane managed to do a few jobs I’d got lined up this morning. Helen and Ellie her daughter came for lunch shortly followed by her husband Andy who had come to fit our new sink and taps in the kitchen. The way Andy works and the banter meant it took most of the afternoon. Miriam’s birthday tomorrow! She’ll be 5 and having her party at Escape on the Giltbrook retail park where Ikea is if you don’t know. At least it saves all the mess and hassle at home.

I did ring the hospital today to make sure the appointment is on the way to dilate my oesophagus again as some what were familiarly easy foods to swallow are again becoming difficult again and moving close to home I’ve an appointment with Dr Swanwick who runs a pain clinic at the Treetops Hospice in Risley of all places, a week on Monday.I do seem to at least be ‘back on this planet’ after a week or so away and people have commented how much better I look so that’s a good sign.

26.11.09

Had an agonising night, sleeping in this chair then that one then in bed for an hour and swore out loud when after just a short period I had to get up again. As soon as I’d take my 8am dozen tablets I started to feel better and after an extra squirt of syrup in my porridge I had that glow around me like they used to show on the old Ready Brek adverts! Miriam’s off school again with a nasty cough, she’s been to the doctor nothing serious not on her chest but she does have a temperature so best kept an eye on for now. Jane’s been out food shopping she takes that as a bit of a respite from me but often brings me a treat - this week it’s mini magnums 6 for £1.49, 2 boxes! I then fair OK during the day and as evening comes then so does the pain come with it until it’s once again medication time which I look forward too just as much as the mini magnum! Jane and her sister Alison managed to get some of the out door furniture put away today, table, chairs, trampoline and with a bit of persuasion swept up a few leaves so the garden looks like most peoples. Mick the mower will soon be back fighting fit and has promised to fit me in when he can. I must have posted the request for a quote for a couple of extra bathroom cabinets to Chippendale limited as it came back asking for the equivalent of a couple of body parts! Unbelievable!

25.11.09

Sat around this morning dying for a drink and something to eat after I’d had my breakfast at 8am and wasn’t allowed anything else until after the Ultrasound scan, Jane bought me a snickers from Wilko’s as a treat! We got there in plenty of time so as not to have to invoke plan A to pick up Miriam from school, a military planed exercise as usual ! I asked the Doctor if Jane could sit with me during the ultrasound, I think she took it as a rather odd request and had to go and ask someone but eventually Jane was allowed in to watch, thing is I just forget everything or get it wrong. It turned out that what they could see, the doctor and the consultant, was something  but it would need further investigation to make sureso I’ll have to have a biopsy in the next couple of weeks to make sure it’s just a scrape from surgery or a ten pence piece tossed and dropped in a wager whether I’d make it or not!

24.11.09

It’s a good job the Outlook icon sits in the system tray reminding me of the day or I’d put any old thing down. I went to the shop last night and asked for a Lotto ticket for last night’s rollover draw, after avoiding a couple of awkward questions I just said forget it I’ll come back tomorrow, I mean Wednesday! It’s much the same with times and dates so It’s a good job Jane keeps track of where we’re supposed to be and when. The change to the tablets seems to have worked out Ok and I’ve been much less grumpy and a lot more ‘awake’ than of late though still just  little tired. Tomorrow is the ultra sound scan of my liver to have a good look at the spot that was found on the CT scan done last week, at the same time I’ll see if I’m booked in with Mr Catton for a dilatation before Christmas, I’ve noticed some things are starting to stick in my throat again that haven’t done before which is a bit down heartening after the progress I’ve made over the last few weeks. The District Nurse came today, a new one that Jane knows from old family connections and seemed very competent . I’ve got to keep thinking of something interesting to write, over 8000 hits now on the pages which is quite an achievement, The Nurse was telling me today it’s almost December and it’s been a long journey and I should be almost at the end of the journey by now and to realise I’m not is a hard knock for all the family, they’re getting as hacked of with it now as I am!

23.1.09

Today could have been a hurdle to cross with the interview with the Doctor appointed by the Well Being people and could have been a step further to knowing how the future was going to pan out. As it was Jane wouldn’t let me go, I’d been up most of the night and didn’t know what day it was when I did wake up Jane spoke to the Well Being people and to the GP and managed to get an appointment for me this afternoon. I didn’t do much else that wait for the appointment and at the moment I’m waiting for nothing other than the usual pain to kick in about 7pm and spend the night trying to catch sleep where I can. At least it begins after Miriam has gone to bed so she doesn’t have to witness the spectacle of me pacing up and down and panting like a dog. Jane has even started dishing out my tablets so when I start begging her for them half an hour before they’re due she’ll realise the torment it causes by not being able to self administer but I have been forgetting to take them at all which I suppose it the worse of the two evils.

22.11.09

Some strange happenings on the web site yesterday and today and it’s taken a while to get things back under control but here we are again. Jane went to Y –Friday Restaurant last night and left Miriam in bed with my Mum to babysit me! I didn’t seem as bad as the past few nights but again did have a couple of glasses of red wine which I’m convinced helps me relax and aids some rest and the working effect of the other tablets. Having said that the best sleep I got last night was from 7am to 10am this morning on the sofa downstairs and as Jane starts to remind me about this and that that we have planned or should have done I nod or shake to say of course I haven’t forgotten or of course I’ve remembered, the latest one being the important meeting tomorrow, an appointment to see a doctor appointed by the Employee Wellbeing team at work tomorrow at a practice in Sherwood to investigate whether or not I meet the criteria for ill health retirement. At the moment I’d be better suited to an old peoples home than a full job time. However as it goes I’ll have plenty to say in the right manner of course but I won’t let these people bully me into something that I don’t believe is right for me.

20.11.09

The selection of tablets certainly have an effect on sleepiness and I manage to get an hour or so whenever I put my mind to it and close my eyes. My concentration seems to have gone a bit awry and walking down the stairs, spelling and remembering what I’ve said ten minutes ago tends to get on Jane’s nerves, she off to Y-Friday Christmas tomorrow evening and insists I have a baby sitter for me not for Miriam. It continues to be just the pain that is causing the most difficulty, the bits like forgetting and memory loss and falling down stairs are just side effects of the pain and the concoction of tablets. Also abysmal at the moment is my hand writing, if I couldn’t type it would look like Miriam had written it. I’m hoping to get some more answers on Thursday from the Oncologist. Jane has asked me to cut out the glass of wine I have in the evening but at the moment it’s a bit of a life line to normality and unless the consultant expressly tells me then I’ll hold out as long as I can. We did have our windows and doors and conservatory cleaned on Tuesday, he made quite a good job of it, cleaned the sills and window frames with Ionised water as well as the conservatory and the roof and he was  here for about four hours and charged £100 which I didn’t think was too bad. A normal window clean including frames is £16 and for anyone who knows our house it ’aint that small. If anyone has a better deal who’ll travel to Ilson then please let me know.  It’s early yet, 9.30am so I’ll blog a bit more later ......... Later is now about 7pm and I’m cream crackered and getting ready to pop the next round of pills so I don’t think I’ll get much blogging done for  tonight either. Running out of patience a bit but hopefully that’ll sort itself out on Thursday with the oncologist.

19.11.09

I was up extra early this morning and after nodding off a few times I’d forgotten what day it was never mind what time it was. Towards lunchtime Jane’s parents came to babysit Miriam who was off sick today which reminded me it was nearly time to go to the hospital. We got there about ten past one for our appointment at 20 past and went straight in. He told me some facts about how only 45% of patients see that particular medication routine to the end and how well I’d done and then when he asked me how I was feeling I let him have both barrels about the pain I was currently in and how no medication seem to have any effect. Then he went on to tell me there was a 14 x 19 mm mark on my liver which he would have investigated over the next week and have me back in to discuss that on 10 Dec 09. So meanwhile I’ll keep taking the concoction of tablets to see me through the day not least of Mon 23 Nov when I have my appointment with the fit for work doctor- what fun that will be!

18.11.09

7700 hits and over 200 comments now that can’t be bad can it. Feel a bit drunk at the moment taking the Nortriptyline but it does seem to keep the pain at bay for a while and at least I managed I get four hours sleep and same again last night although I can nod off on a washing line which is what I did last night with a glass of red wine in my hand, when I suddenly heard the door open I thought we’d got burglars until I realised it was 8pm and not about midnight as I’d first thought. Didn’t stop me lobbing the glass of wine all over me and the furniture. Tomorrow is Thursday and a visit to see the oncologist although I don’t hold out much hope for him diagnosing the pain but he may well have some good news on the oncology side of things.

One tablet of the Nortriptyline is a bit like drinking six pints of beer, while prescriptions are free it’s not bad value but I’d rather not have to do it in the long run. The wobbles and the shakes are a dead giveaway that something is wrong. Jane seems to think it’s necessary to talk to me in words of one syllable like I’m a bit abnormal at the moment, I might be a bit slow at the moment but by no means simple.

Does anyone know of a good window cleaner who would also clean the conservatory and window frames as well and who doesn’t wear a mask and carry a swag bag. Today it’s my mission to keep out of Jane’s way, if Dave H is working from home I’ll go and pester him for a while or after 9.30 go and use my Gold Card and ride the bus somewhere like a vigilante!

No calls of any relevance from the hospital today and the windows cleaner I called yesterday evening turned up as he’d had a cancellation and got straight on with it, not made too bad a job by all accounts but that’s just my opinion, he could have made off with the family silver and it would have been my fault.

17.11.09

We had planned to get out with the kids somewhere this weekend just to give them a break form what has become a very mundane time for them. Truth be know they are both very good kids and don’t moan or ask for a lot but I know Jane too is getting a bit down at the moment, anyway we didn’t get out except to my parents on Saturday morning for an hour, we managed Sunday lunch which I washed down with a glass of Merlot and consequently dozed away the afternoon, along with the Diazepam it seemed to be a good combination.

Yesterday, Monday, I was camped out by the phone most of the time but instead of being admitted to the City, A&E or any other hospital  I had a call to say an appointment had been made for me to see my GP in the afternoon at 3.40pm. It was with Dr Travell who I can’t recall seeing before, either he’s going to want chapter and verse on my history or he’ll just look at the current problem in isolation so I wasn’t sure how to take it. Anyway he turned out OK and as well as leaving all my current medication in place that’s OxyContin (slow release pain killers) OxyNorm (fast release pain killer) Diazepam (muscle relaxant) and Lansoprazole (ant acid drug) he added Nortriptyline which judging by the name could well be not a million miles away from the Amitriptyline I tried a couple of months ago which I did tell him suited me like a hole in the head, if the side effects are anything like then I’ll be returning them with an appropriate note of gratitude.

Anyway the first night went OK and I managed to get more sleep than in recent days, about four hours which is a right result and no wine! So this is the end of my morning blog, depending how I feel later I’ll try and add a bit more but for now “the-the-the that’s all folks!”

15.11.09

The Macmillan Nurse visited yesterday afternoon just as the current bout of pain was reaching it’s peak and I was ready for some OxyNorm. We decided between us that as the glass of wine seemed to do more good than the pain killers it was probably best to get something like Diazepam prescribed which would relax me and get me off the circle of the pain getting worse because I’m too tense, at 2pm she’d asked a doctor to come and see me, in their four hour window he’d be here by six. At 8pm he turned up and really just wanted me to up my dose of OxyContin which we sort of talked him out of and when he spoke to the Mac Nurse who was thankfully still answering her personal mobile he came back from his car with the Diazepam tablets. By this afternoon they had managed to do their stuff and I was certainly more relaxed and in far less pain, it’s about now until 9pm that I usually get the worst of it , last night it was accompanied by sickness and in the middle of the night a cold sweat where I woke up soaking wet but only had a temperature of 35.7. I think what we are all expecting is that I’ll be asked to go into hospital tomorrow to try and get to the bottom of this and as long as it’s not via A&E or a stroke unit or something similarly unsuitable I’ll be glad to get myself seen by someone who can at least interpret the CT scan and can  come up with a plan on what to do next.

13.11.09

I might have to blog at a different time for a while as it seems after tea is a high spot for pain at the moment, hopefully it’ll be sorted very soon, I’ll be on the phone today until I have some sort of reaction to the CT scan I had done yesterday. Jane came with me this time and met Hinge & Bracket in CT Reception and we sat with Revill an old friend of Jane’s and fellow cancer sufferer but apart from that it was pretty unremarkable. Last night the pain was really at it’s peak and I was puffing and blowing like an old horse, on a scale of 1 - 10 it was probably about an eight again, it’s also making me a bit grumpy or should I say more grumpy than usual and I apologise to anyone who has felt the brunt of it over the last week - suppose I need to make it up to Jane and the kids once more, I just hope Jane isn’t keeping score!

I need to pay my lottery subs at work, the syndicate winning 43 million reminded me and I’d hate to miss out if / when we win!

Well it’s early evening now and no chance of a phone cal now that would give any indication of what the underlying cause of the pain is, like last night it’s back with a vengeance and I’m between medication at the moment and have another hour to wait, at least this takes my mind off the pain for a while. Disappointing really that no-one could call me back after the CT scan had been reported on and discuss the findings, it’s not the pain I’m concerned about, like I said it’s what is causing it that worries me. I did speak to a Macmillan Nurse and a GP from the local surgery so I can up my dose of OxyContin in the morning and at night time but I know I’ll still need the OxyNorm in between just not so often I hope. So tonight and every night until it’s sorted I suppose will be a repeat of the last few, a good glass of red wine to knock me off to sleep for a couple of hours at night time then just a repetition of nodding in the chair or on the sofa between doses of pain killers. Not impressed with the hospital at the moment and neither is Jane from the rocket she was dishing out earlier!

11.11.09

Had a couple of quotes for some ‘essential maintenance’ work around the house over the last couple of days. I’d forgotten what it was like to deal with artisan tradesmen where sucking in air through the teeth is a fine art that says so much just as much as being able to quote such prices and sleep at night!

Talking of sleeping at night that’s something I’m not managing very well at the moment mostly because of the pains in my chest that wake me after a few hours, the pattern seems to be go to bed at 9pm and get up again at 10pm  and watch tele or read a book until 2am then load up with painkillers and back to bed until Lydia wakes me up about 7am if I’m lucky otherwise I’m up to make the tea around 6am. Apart from that the usual side effects from the chemo are fading nicely I’m just left with pins and needles in my hands and my hair hasn’t started to grow back yet. The mouth ulcers have gone and my taste buds are getting better every day so it’s really frustrating that this latest, very painful, episode has arisen, I just hope we can get it sorted at the hospital tomorrow.

Jane and I were at Treetops this morning for our last session for a while, I opted for the Indian Head Massage again while Jane went for reflexology, I’m a bit too ticklish for that!

I’ve got an appointment to see a doctor appointed by the Employee Wellbeing team at work on the 23rd November at a practice in Sherwood to investigate whether or not I meet the criteria for ill health retirement, I’m not sure whether that means they have already had some input from my consultant or not I’ll ask him next time I see him. I’ve nothing to hide from them, at the moment I couldn’t even consider the journey to work let alone do anything. I had an email from my brother today he’s off globe trotting again says it’s too cold here for him so although he’s not said where he’s going I’d guess somewhere warm! - Lucky sod.

09.11.09

Another weekend come and gone and not much to show for it. Nothing’s ever simple is it? You’d think that once you’ve finished the Chemo treatment the side effects would start to ease off and get better, true they are doing, and that now I’m eating better I’d feel better overall and stronger, well yes that’s happening too in fact I feel really good - apart from the pain around my  torso that is now spreading into my right arm and is taking much more OxyNorm than expected to keep it under control and even then it doesn’t go away entirely. On a scale of 1– 10 I’d rate it at it’s worst at about eight, it certainly takes you off your feet and there’s not a lot you can do about it apart from try and rest in a position that is most comfortable and keep taking the tablets. I’m expecting a call back from Mr Catton the general surgeon from the hospital just to see what he says, I’ll try and get to see him on Thursday at the latest when I’m at the hospital for my next CT scan arranged by the oncologist. So there you have it - apart from the pain and OD’ing on opiate pain killers I’m fine.

I spoke to Kathy late this afternoon after I described the symptoms she thought it might be pleurisy! The best course of action is to keep up with the pain relief and head off for the CT scan on Thursday which will show up any obvious source of the pain such as pleuricy or fluid in the lungs or anything else out of the ordinary. It never rains does it?

06.11.09

I’ve just had a couple of lazy days again to end the week. I’d say I’ve been taking too much OxyNorm as the pain around my torso has gotten worse if anything and no amount of stretching off  or distraction technique has any effect and I have to resort to the pain killers although no more frequent than is allowed, if it continues next week I’ll mention it to the surgeon via Kathy at the City hospital.

In the post this morning I had my appointment for CT Thorax and Abdomen with contrast, next week Thursday at 9.40am which means I’ll keep my appointment with the Oncologist for the week after to discuss it in some detail. Food is going down a treat now, tagliatelle for lunch and hot dogs for tea as well as porridge laced with golden syrup for breakfast and snacks in between which makes 5 or 6 small meals throughout the day. I’ll weigh myself tomorrow and see what this week has done, my target is to get back to 10 stone and keep stable at that but I’m in no hurry and don’t expect to reach that target until about this time next year, once I’ve picked up a bit physically I’ll move on to trying some exercise geared at adding a bit of muscle instead of just putting fat back on. Naked in the mirror is not a pretty sight at the moment until I have padded out those saggy bits again!

I managed to find a supply of light bulbs locally yesterday, Ken’s Electrical in Cotmanhay he reckons he can still get anything you want and his prices are reasonable too. I’d like to be able to go somewhere and show the kids a few fireworks this weekend, they've seen some out of the window and Lydia had something scheduled for this evening but she’s backed out because of the weather and has gone shopping with Jane instead leaving me to get Miriam ready for bed which is no chore as she just does it all on her own anyway.

04.11.09

I saw the Oncologist yesterday just a quick appointment I think he just wanted to actually see me more than anything else. According to their scales I’ve gone up a couple of pounds so he was pleased with that and he decided that I should not continue with the Chemo tablets and just leave it at that. He’s booked me in for a chest and abdomen CT scan some time in the next two weeks then I’ll have an appointment to discuss the results with him a week or so later. It will be at that point when he decides whether to call it a day with treatment or if there is something else that needs doing.

Jane and I went to Treetops this morning I had an Indian Head Massage and even though you are sitting upright in a chair I still managed to nod off. I nipped into town afterwards to wrap up a few loose ends then came home exhausted and had a bit of a nap. My evening routine seems to be go to bed at 9pm then get up again about an hour later, stay up until midnight or thereabouts then sleep through until Miriam wakes me about 7am.

I’m not sure whether it’s the weather turning but I’ve had some quite severe pains around my chest for the past couple of days, really quite breath taking and makes me blow quite hard to try and suppress it. I keep taking the OxyNorm to keep it at bay which does seem to work still.

Tomorrow I just have a couple of jobs to do, change a light fitting in the kitchen and continue my quest to find some SBC golf ball light bulbs which seem to have disappeared off the planet!

02.11.09

A quiet weekend, Jane’s birthday yesterday and she was out all day with Lydia at a dance competition near Leicester while Miriam stayed at home and looked after me. There were a few visitors during the day to keep me on my toes and Lydia came back with a couple of trophies and had by all accounts danced very well.

Saturday evening both the kids went out trick or treating and judging by the amount of treats they came back with after just a short time there were plenty of households taking part.

10.50 tomorrow for my appointment to see the oncologist and today in the post came an appointment to see an employment advisor at the local Job Centre Plus for a Pathway to Work Interview. I don’t think there is ever any dialogue between my employer and the Job Centre or these things would never happen. Having said that the Job Centre Plus is not without it’s failings as it awarded me money for Employment Support and Mortgage payment assistance and a week or so later took it all back off me again as the money I still get paid from work is too much to allow any such benefits.

Health wise I’m getting better every day now although I still carry side effects from the Chemo. If I do have to start taking the remainder of the Capercitabine tablets then I’m assuming that’s where all the nausea came from and so it’ll start again.

I’m going to get some fresh air today,, perhaps collect Miriam from school although I do have to get in a short nap, maybe an hour, in the afternoon or I need to go to bed too early and it then messes up my sleep for the night time. Food is going down a treat still, I’m not weighing myself every day but I can see in my face if I’m hydrated and getting enough food. I still have to remind myself to eat at regular intervals as I still don’t have much of an appetite or a rumbling tum to tell me it’s time to eat.