Date

Treatment Blog - September 09

Whitby 09

30.09.09

Apologies for the lack of content on the web pages but I can assure you I have more than made up for the lack of anything by producing copious amounts of barf and all things unpleasant over the last couple of days. Sleeping is still a nightmare if you’ll pardon the pun as that’s all I seem to do if I do manage to close my eyes for any length of time. I’ll make a start on the October blog tomorrow and see if I can put my finger on where things are just not quite right at the moment. Thanks for last night to Jason & Darren for what made it a late night for me, well at least after 8.30pm and I really thought I was away with the fairies until after what I reckoned on what was a good night’s sleep turned out to be no ore than 30 minutes or tormented moanings.

29.09.09

Feeling much better today and even managed a short drive out just to Tesco. Helen’s popping in for a cuppa in a while and Jane has had some of her friends round this morning while I busied myself filling in the last of the forms for the Council and DWP - probably taking me close to 200 pages of filled in forms for one benefit or another.  The last one to come through, the claim for Employment & Support Allowance which used to be incapacity benefit is the one I supposedly have to claim after dropping to half pay, anyway that will now be paid for the next 26 weeks at a rate of £96.65 per week than it all gets reviewed again unless I get my butt in gear and get back to work. So there you have it now with all the allowances in place I earn just as much as I did on full pay from work - it’s been a bit of a battle and one or two of the forms almost went in the bin before completion but as you can see financially it’s been worth it! If ever anyone wants any advice on filling them in then just drop me an email. If all I can do is will you on to get them filled in then it’s got to be worth it. Lydia came back from her fieldtrip with barely a word, not sure she has boyfriend trouble at the moment but the whole thing seemed to pass off as just another day.

Last day of September tomorrow and I have a visit planned from a colleague at work in the evening, if anyone has anything to pass on then I’m sure Jason won’t mind me mentioning it.

27.09.09

Slept really rubbish last night and then managed a couple of hours from 8 to 10.30 this morning. Mum & Dad came for lunch as agreed and it passed the afternoon, or most of it, Jane’s turn for a nap in bed while I festered on the settee and ate caramels with the kids - after taking my anti sickness medicine I might add! Lydia is off on a school fieldtrip tomorrow to Lincoln and with Miriam at school all day now provided I feel OK it gives us both a chance to get out and about and get some jobs done. One thing I seem to be doing very regular is ordering and collecting repeat prescriptions for pain killers of one sort or another, on the list for tomorrow again.

I have my reply from the DWP about my claim for Unemployment Support to plough through an see what it all means as well as fill in a medical questionnaire for them as well..

My broken MP3 player has made it’s way back to me after a week away, just sent me a new one with a compliments slip and it seems to be OK this time, I’ll get some songs loaded  on it later and see what happens.

26.09.09

Well Thursday was a bit of a stinker! Sat having my Chemo injections whilst wretching my guts up at the same time. Then sat talking to the dietician freezing, had my temperature taken but was all normal so sat with two blankets wrapped around me showing her just how pathetic I was at the moment. She agreed in part and since then I’ve had word of a new appointment with the general surgeon to discuss my eating and for him to perhaps have a look down my throat with an endoscope to see if there is a problem with the size of the opening he left me to get the food in. Anyway until then I’m staying on the night time feeds via the tube and that’s a relief because at least my weight, as before, remains stable if still a little low.

Friday I spent most of the day wretching again and not even able to take some of the bigger tablets in the evening I just couldn’t face them. Today has been a bit better and although still a bit tired I have managed all my medication so far, Jane took the kids to see my parents while I was still in bed this morning but I’ve been up and about since then and I’m looking forward to them coming for lunch tomorrow, if there is one meal I know I cam get down me it’s Sunday lunch with plenty of mash and gravy!

Sad news from Jane’s parents who are on holiday in Brecon, they had to return home on Thursday and had their dog Tessa put to sleep, she was a year older than our Lucy who left us exactly a year ago tomorrow.

23.09.09

Coming to the end of another month and I see I don’t have any more blank pages for October onwards, when I put the site together I must have planned on the ordeal being over about now!

Someone somewhere is smiling on me and no phone call today to say my treatment would need to be postponed so I’m ready for the early start in the morning, Jane has just nipped out for some supplies for me to take with me.

I was at Treetops this morning, my chest infection doesn’t come with a persistent  real bad cough but when it does start to irritate my throat and I do start to cough then all hell lets loose. I’d finished my massage with Jo and took my time walking through the garden back to the car pausing at every tree and fence post to hack up another greenie and as Jo passed me on the way to her car I managed to adopt a casual enough pose so as not to give away my plight. After that whether it was the massage or the fourth anti biotic or the honey or not having been turned down for tomorrow I felt much better, I ‘m certainly not ready to fall into bed like on previous evenings. Having said that I did meet Jane last night on one of my trips downstairs at 3.30am in the lounge, she was folding washing and I was making tea, after that I don’t think either of us slept much more. One more cycle of Chemotherapy to book in for tomorrow and that’s the end of it. I’m not dumb enough to think that it’ll all be over then, I know for a fact that my eating isn’t right and the pain plan needs to be looked at if I’m to come off it anytime soon  and I need some rehab in the physio department to bulk up a bit so I can’t be accused of scaring children by looking like one of the walking dead!

I doubt I’ll be blogging tomorrow evening but god willing I’ll be up to at least a few lines by the weekend - oh yes and Jas, the boss, wants to see me again soon, keeping me on my toes I suppose and I do have a few questions for him this time.

22.09.09

Not been at my best these last couple of days, I’ve been struggling with a cough for a week or so and at one point my temperature was borderline for 24 hours or so then sorted itself out. Anyway I went to see the doctor today and you’ve guessed it I have a chest infection probably picked up from mingling with other people - I don’t think so.

So this morning I started taking a seven day course of antibiotics then had to go to the city hospital to have my bloods done ready for the chemo treatment on Thursday. While I was there I made sure the chemo unit had my correct phone number and asked them to call me if there was anything wrong and if anything could be done so as not to delay the treatment, like some sort of white cell blood count boost - don’t know if its good but no news as yet. I found  myself at an impromptu Mothers Meeting this afternoon with Jane, Helen & Emma - I’ve spoke about them before, Emma is recovered from Ovarian cancer and Helen is like me currently having chemo for Breast Cancer. To say a year ago I’d probably never mentioned cancer here we were four adults in one room of whom 3 have had or have cancer.

I’ve not even finished the Council Tax form yet so has been my lethargy these past few days. Mind you listening to the debates on Radio 2 (better than daytime telly) about Council Tax, Mansion Tax and financial systems in general I’ll probably end up paying more back in then getting anything for nothing. So there we are, fingers crossed for tomorrow that I don’t get a call  which means a delay in the chemo cycle

20.09.09

Lovely weekend weather wise and although it looks set to turn a bit rough next week I’m secretly banking on an Indian summer and the opportunity to get away with Jane and the kids a few times before it all goes glacial on us.

aly.paul.gee who appear most often on the comments table are in reality Alison, Paul and their daughter Georgina who is  the same age as Lydia came round for coffee yesterday afternoon then come evening Jane & Lydia put on their glad rags and headed off to Burton for another Alison’s birthday party, Jane younger sister. Later as I tucked Miriam into bed and ‘she read me a story’ I reflected on how lucky I was to have such lovely and understanding girls, all of them, especially as I’ve been a bit of a grump this week. I could never have managed the trip, just sitting in the car being chauffeured would have been too much. I was in bed at 9pm but as I could have predicted was wide awake just before midnight as I heard the car pull onto the drive.

Even without hangovers they both seemed knackered all day today and used the ‘day of rest’ to it’s full while I sat with Miriam as she entertained herself with her Blue Nosed Friends. I Know Jane will be back in action tomorrow morning taking the housework by the scruff of the neck so I’ll make sure I keep myself busy and as I imagine Jane would prefer, out of the way.

It was around this time during the very first cycle of Chemo back in March that I went into hospital to have the NJ tube fitted and changed from Xeloda to the 5FU drug in the pump for my 3rd and oral drug, I assume I’m sticking with Xeloda this time so am expecting to see an increase in the documented side effects. I remember also back in March I documented the worst of the side effects as being the change or loss of taste and the mouth ulcers. This time around without a doubt the worst thing is the lack of sleep and the nightmares I get when I do drop off.

Tonight is paperwork again, just a 35 page application for a reduction in Council Tax. I already have an inkling given to us by a lady from the Citizens Advice that we may well get as much as a £1.30 per calendar month reduction!

18.09.09

Here’s my appointment card, overflowing but including my last appointment on 15 Oct, three weeks after that I take my last chemo tablet - Bonfire Night then have some rehab to endure and then I need to think about getting back to work and earning a crust again. Jane says I’ve been a right grump these last two weeks so when a young lad rang the door bell last night proclaiming to be Lydia’s boyfriend let’s just say I didn’t greet him with open arms. I must own up, and I did to Jane with a bar of her favourite chocolate, that Lydia growing up and staying out in the evenings and well just being away from us is a concern to me not that I think she’d do anything dumb so I suppose it’s just me exercising my right as a father to worry about his first born child.

Met with a couple of blog fans today in the local area, Sarah my bus buddy who I haven’t seen to talk to for ages stopped for a chat and then later Richard by the school. I think the name ‘lurker’ is given to those who silently follow a blog or newsgroup without ever contributing but yesterday one such lurker, Peter H, contacted me via email there was some advice for me and I offered the same in return so many thanks for that.

I’ve had a day clear of the runs now, how this evening’s risotto presents itself later will be interesting and a sign of what might lie ahead for the last week before the second chemo cycle starts.

My new mp3 player didn’t last 24 hours I’m afraid, right now it’s making its way to the returns department for replacement, I really liked it but this morning it just wouldn’t power on for love nor money.

Still sleeping rubbish, I think I’ll just have to rough it out until the end now. Night before last I was in bed at 9pm and later woke up thinking Jane had gone down to make a brew, my watch said 3.50 am, Jane was in fact just coming to bed and it was 10.20 pm, after that I was up every hour and then as is the case when it’s time to get up you fall asleep!

Mail today came in the form of a copy of the form I’d filled in on the phone on Wednesday and a freepost envelope to send off my sick notes, pay slips and SSP1 (yes I know what one of them is) so that’s all gone back this afternoon - I won’t hold my breath for it to return or for the result to be anything spectacularly in my favour. That’s it I hope the weather holds for the weekend - take it easy everyone.

17.09.09

The thing about the Complimentary Therapies at Treetops is that they are just so good. I had an aromatherapy back and shoulder massage which after the introductory chit chat lasted a good 50 minutes, Jane was in a lot longer than me because she’d fallen asleep! My masseuse said she did notice a hot spot near my left shoulder and although the massage is only gentle, not like a Swedish massage or anything I still felt the effects this morning, that on top of a rubbish nights sleep and endless unfinished cups of tea and repeats on Dave I’ve had another lethargic day just hanging around the house getting on Jane’s nerves.

I did, as promised, make the call to start the claim for Employment & Support Allowance. If it had been on paper in front of me I bet it would have been more than the 58 pages of the DLA claim form. It took an hour and 10 minutes on the phone to answer questions which seamed so irrelevant but I didn’t question the lady as she was just reading from a script anyway but did ask her at the end how she kept her sanity doing that all day, she wouldn’t answer as the call was being recorded. Afterwards I retired to my bed for an hour absolutely exhausted!

One of my late night shows last week was the gadget show and on the back of that I’m now the proud owner of a new SanDisk Gb MP3 player with FM Radio bought in a bundle with some other bits as here. Proper chuffed with it as it beat the iPod and a few other opponents hands down. It’ll keep me sane during Chemo next time anyway.

15.09.09

Well the tipster from the race at Chester was globally let off the hook as the horse was withdrawn from the race just before the off and all bets returned - ‘not his day’ was the consensus. Saw a text message my Barry to my Mum saying that “the ocean was calling him” and that he had ventured the opposite way this time towards the West Indies.

Hade a lovely time at the barbecue, nice to see some of our younger friends coming through with another batch of kids now. I managed until about 9pm and I think Helen the hostess was in bed by 11pm.

Sunday and Monday were both days were I seemed to be much better from the chemo but still suffering from bouts of the trots. Today I had my chance at the Oncology Outpatients clinic to grill the Oncologist about a few things. He had read the notes from the dietician and straight away associated Diarrhoea with the effects of the chemo drug I take in tablet form, even when I explained I had it on holiday while not even taking the drug he was adamant that I wouldn’t shake it easily now I was taking the drug, if the sample results say different or if the symptoms persist then he’ll look at lowering the dosage of the Xeloda drug.

I had all my post back from the Job Centre Plus on Monday. As you know I’m meticulous when it comes to filling these things in and I had to laugh when the next form for me to complete had had all the boxes struck through with a marker pen as if admitting the form was of little or no use and in pencil someone had just written, ‘call this number to make claim’.

I called the number, not free other than from a BT landline, I would need this that and the other to hand and the procedure should take no more than 40 minutes or so did I want to do it now? No, I need to book a slot with my bowels when they don’t require to be emptied or I strategically arrange the bog, bucket, cordless phone (when fully charged) my life history and details of every penny I have then whats the odds I can’t get through - I’ll try it tomorrow.

Jane and I are off to Treetops tomorrow morning I’m opting for the aromatherapy if possible, I think it’s long enough post surgery now for one of those young ladies to lay hands on.

Miriam, has a bit of a collection of these Blue Nosed Friend soft toys, they’re from Clinton Cards amongst other places - if anyone has any they would like to offload or sell or swap then please let me know.

12.09.09

Early and just a short blog today just while I wait for the 4.30 at Chester to run and for Lydia to come back from wherever it is she’s gone so we can nip down the road to Helen & Andy’s for a bit of what could be the last summer barbeque. I managed to ‘stay up’ last night until just after 9pm so as I’m feeling better again today I’d like to be there at least until all the other guests have arrived before I have to make an exit. Anyway if Supermassive Muse comes in at Chester I’ll be round the offie for a lucky dip on the lottery tonight.

I’m taking some fish - that I still have to prepare - to the barbeque, just throw on a slice of lemon bit of garlic butter salt & pepper wrap in kitchen foil and 5 minutes later there you have it - stomach ache! No seriously I do want to get back to eating as best I can but especially tonight I’ll be careful what I put in my mouth although a bottle or two of Budweiser is much the same wherever you drink it.

This will really be the first time Jane and I have been out to socialise since the end of February when we all went to the Bulls Head for a ‘lets get on with chemo’ drink with some of our friends that’s over six months ago now.

Well the results are in - the dead cert didn’t manage the first three! I need a word with my tipster.

11.09.09

Yes I know it’s been a bit quiet over the last few days mainly due to the fact that my backside and those white porcelain inventions by Thomas Crapper with development by Messrs Villeroy & Boch have been inseparable. Counting the days I was poorly on holiday today is the ninth day where by the end of it I am totally empty and really quite sore!

Jane took a ‘sample’ to the Doctors surgery this morning but even someone in the best of health would be feeling a bit washed out by now. I’m sure it’s something separate from anything to do with cancer or chemo, probably something, a bug I picked up in Whitby or on the farm where we stayed, the sample should give the results next week.

So here I am now tipping the scales at 9st 0lb. I have an appointment with the Oncologist next week, a week early really so I’ll have an extra set of bloods taken so I can possibly do something about it if the counts are out of range. I’ve been trialling the new system for getting to speak to or see a doctor at our local surgery, you just ring up and explain what’s up and a doctor rings you back inside a couple of hours and hears your story. So far I’ve had two separate prescriptions written on the spot, collected and had the tablets in my hand within a couple of hours, one of those tablets is Lansoprazole - a proton pump inhibitor which restricts the production of stomach acid, I should have had those from day one of my hospital release really and then some to help with the diarrhoea. Currently I feel a lot better today there are still lots of comings and goings at the house to keep me sane but enough free time to sneak off for a lay down if I need to.

As with the first cycle of chemo last time around I’m sleeping rubbish even if I do take the sleep juice I had prescribed a while ago. I seem to need my bed before 9pm then wake up just after midnight then every hour until I succumb to the child like nightmares of flesh eating zombies and the like and before I know it Miriam’s little face appears over the duvet!

Just in response to a couple of emails, yes Shaun we were the epitome of athleticism in our day - well more evening and into the small hours really excelling in the sport of ’raising the wrist’. And yes the honey jar really is that small and yes not much change from £40!

Still appreciating the comments and nice to see the visitor number rolled over 5000 recently, I’m not laying any value on the accuracy of that but nice to see it ticking along. Cheers then and have a good weekend.

08.09.09

Just indulge us these photos of the kids on each of their first days at school, Miriam yesterday full time and today Lydia’s first day at senior school.

Miriam 1 Miriam 2 Lydia

07.09.09

Feeling much better today, as I said, had a lazy day yesterday and feel better for it. I spoke to the dietician this morning and we agreed to use up the remainder of the Fortisip drinks I have in stock in the cellar just until she gets chance to see me again on the 24th at the next Chemo session. After a weigh in again this morning although I’m down to 9 1/2 stone at least the trots have stopped and I don’t feel as sick from the Chemo as I did so I should be able to start and build myself up a bit now.

Some nice comments to read which is always a bonus when they are from colleagues at work, yes I will be back one day you know!

Miriam started her first full day at school today and tomorrow Lydia starts at senior school. On top of that my other family news was that my sister is getting married in Wales tomorrow to her long time partner John and my brother Barry is setting the wheels in motion for his retirement - at 50, the jammy devil I wish a bit would rub off over my way!

Jane managed to get me with a bucket and cloth in my hand this morning so now the kids are back at school it looks like my easy ride is over - although I know she knows not to push me too hard at the moment.

Well I hope it’s gone well for anyone else having kids back at school today, hopefully no traumas to report!

05.09.09

How to take it

Felt much better today so far and have at least spent more time out of bed than in it. Managed a couple of small meals and have kept those and all my tablets down. Luckily I had my anti sickness medicine in liquid form from last time so took that early on through my tube, gave it chance to work and then too the other medication - seems to have worked so far so I’ll keep that up for another day or so. My face though still has that after chemo red glow. I started taking the Life Mel as pictured, not sure how effective it might be but it goes get a lot of press, not least of course from it’s own web site Life Mel.

Different people swear by different things, last time I took LAoe Vera if you remember but the taste just got the better of me, at least the honey is - well honey flavoured!

Lots of family news to tell about but I think I need the all clear from those concerned first so I’ll leave it for a few days yet.

Have a lazy Sunday, I know I shall!

04.09.09

Chemo day yesterday and all went well, we were there early, before 8am and got a window seat. Blood results were surprisingly good and all the bags went up quite quickly once they managed to get a line into my hand, the veins are a bit hard to find now.

Keith dashed off after an hour or so as the Mother in law was feeling a bit dicky so I just made light conversation with the other patients until Jane came after lunch. I’d asked a couple of the nurses about getting the Registrar or even the consultant himself to discuss the results of the CT scan I had before we went away but until late on no one seemed to know anything. Then I found the coordinator between the Chemo clinic and the outpatients clinic which was also being held today, anyway a bit later she returned with the results of the scan saying the consultant would discuss in more detail at my next meeting with him on the 15th but the results of the scan in brief were ‘All Clear’! So really pleased with that and put my mind at rest, as I said it had been worrying me a bit. We also saw an old friend from my time on Edwards 2 ward, Hugh Fitzgerald, he looked a bit beaten but was glad to see me and we embraced like a couple of old women when he left, I’ll see him again I just know it.

Today has been awful and I’ve only just got up (5pm)  and had a bite to eat. I’ve been sick or at least gone through the motions, wretching and gagging all day and still feel rubbish. So I expect a quiet weekend just getting over this first hurdle and hopefully things will look better then. Thanks for the comments and emails wishing me well, those along with the honey (I’ll describe it later) surely helped.

02.09.09

Chemo - Surgery - Chemo, part three of the master plan is about to begin and none too soon from my point of view. Although I’m still not quite right after surgery what with pains from the nerve damage and trouble I’m still having eating and now what seems to be a right good dose of the trots I’m glad the time has come at last.

Eating has been good again today, Jane made a mean mince and onion with jacket potato that definitely goes on the list of ‘can eats’. I’ve packed some goodies for the long day tomorrow, some of my favourite things at the moment that seem to agree with me and that go down and stay down are beetroot and branston pickle, on top of cheese and crackers or a slice of ham it’s really tasty and I actually look forward to having it. Is that the same as having an appetite?

Thanks to Dan’s Dad, Richard for taking the comments over the 150 mark, its interesting to know who is still interested in the blog, hopefully it’ll take off again soon with some gory details from the aftermath of Chemo again, a necessary evil that I’m really looking forward to having in some bizarre way, just to get it over with I suppose.

After Chemo or even during depending how it takes me this time around I’ll be looking to do some physiotherapy up at the local hospital as well as keeping up with the complimentary therapies at Treetops. Exercising without any tuition or instruction I just give myself cramp and strained or pulled muscles which doesn’t really do any good and gets me into trouble with Jane. Can’t promise any blog tomorrow as it might be late and I might feel like pooh!

Well I gave you a glimpse of the front view on 26.05.09 so here’s a view of the shark bite left by the surgeon. View is right side chest just before the staples came out.

01.09.09

Well here we are in another new month, pinch punch and all that. Jane dropped me off at the hospital this morning before 9am and I was back on the number 2 bus to Ilkeston before 10am bloods done and checked up on my appointment for Thursday, all systems go! I got off at the Doctor’s surgery in Ilkeston and collected my sick note to send in to work and while I was emailing I sent a request to personnel to try and sort out my pay which, yes you guessed it, got messed up and I seem to be a weeks wages missing for August! Had a ‘good food’ day today, three meals and snacks in between but still struggling with a slight dose of the trots although much less dramatic than the couple of days I had it last week in the caravan. I’ve left the link for the holiday photos easy to find, above next to Flo as I know some family wanted to have a look still.

Jane and the kids came back from Nottingham laden with goodies, not that I begrudge them anything, I‘m just in limbo now until Thursday, the results of the CT scan I had before we went away are still playing on my mind a bit so It’ll be good to discuss it and get it out of the way. The Macmillan Nurse rang this morning just checking up on me, I had to admit I’d shed 4 pounds last week but I’m not overly concerned as I’ve said before. Someone drop a comment on please to reassure me it’s not stuck at 150! Cheers.