Date

Treatment Blog - July 09

30.07.09

No blog yesterday not because I was too drunk or out clubbing as it was my birthday, actually I was in bed at 9 o’clock well and truly cream crackered. It was nice to have family round though people tended to opt for cash presents which was probably for the best, I do have my eye on a nice Belstaff jacket in John Lewis but I’d hate to buy it now and it not fit in three months time. Helen & Andy did risk it and bought me a pair of O’Neil shorts for the “summer”! Helen bless her is losing her hair today through the chemotherapy, she has masses of long thick ginger hair so it won’t be easy for her.

I had a couple of letters yesterday from payroll at work telling me all about how my pay is about to drop and enclosed some form (SSP1) that I have to take to the Job Centre to make my claim. I’ll just take it and have to play dumb as I’ve never been in a job centre before. Jane’s been preparing the car for it’s return tomorrow but the heavy rain isn’t helping. I managed to bribe the kids into tidying their rooms now they’re watching a film eating all the left over goodies from yesterday.

I was quite pleased with what I managed to eat yesterday, a couple of sandwiches, one egg & one tuna, crisps and dips a bowl of trifle, very nice I have to say as Jane made it for me. Again today so far it’s been a lot better and I’m down to half of a nightly nutrition feed, only two more bags to go then that’s it. I’m hoping then I’ll wake up in a morning with an appetite of some sort or at least feeling a bit hungry then graze my way through the day, I’m in no hurry to move on from the soft foods.

Picked up Lydia’s new PC from the shop this morning so there is my afternoon project, it may well go into the evening but if it all goes well then I might order another one for me!

Mick & his son Daniel came this evening and made short work of cutting the hedges front and back and mowing the lawn I can’t give Mick money he just won’t accept it so I gave his lad ‘a drink’ to Mick’s disgust as he’s not 18 yet!

Also had some tips on SSP forms and claiming at the dole office from who I guess is an old hand at this sort of thing - sorry Liz!

28.07.09

Had a visitor this morning, Dan from work, we talked about a lot of things but little about work. He left me some cookies that I’ll share at my birthday party tomorrow, Jane and the kids had gone to visit Helen and it was almost lunchtime by the time we were all back together again. This afternoon we went to the metropolis that is Eastwood, to Morrisons for some bits and bobs for the tea party tomorrow, Jane wanted to look in a craft shop there and get some birthday cards and I wanted to order a new PC base unit for Lydia to hopefully see her through senior school. There is a Web Systems there and if you need cheap computer bits have a look there first www.web-systems.co.uk I managed to do a bit of a deal and can pick up a beauty of a machine on Thursday for £200, base unit only.

Had a call from the Honda dealer, all ready for Friday then my diary for next week is Monday evening see the consultant, I need to know what he did to my ribs because they are still really painful and I need to check that my eating regime is OK and not too slow, I did struggle with tea this evening and brought a bit back up again. Tomorrow I’ll revert back to the basics on my soft food list including Farleys Rusks. Tuesday is my visit from the boss and HR, Wednesday Lydia has an appointment at Derby City Hospital, Thursday I see the Oncologist and Friday I’m back to see the GP to talk about drugs and things.

Apparently somewhere on the blog I’d invited everyone for tea tomorrow as it’s my birthday, I can’t really recall doing that  and can’t trace the invite but if there’s room you’re welcome - so long as you come bearing gifts!

27.07.09

I think Jane must have spilt some of the sleeping draft last night as I didn’t sleep very well at all then overlay just as we had arranged to go into town to try and get Lydia a phone upgrade, some other bits and bobs and pop to the hospital to get me a few giving sets (the tube my food goes through into my intestine) to complete my tube feeding. I finish with the tube feeding this Saturday but I know I need to up the ante and start grazing a little more! Although I did weigh myself this morning and have put a pound on! I seem to be able to eat hot food easier so I have a lot of fish and parsley sauce on the menu, different cuts of fish even fish cakes and loads of parsley sauce from Bisto out of a tub, even I can’t get it wrong.

People keep asking what I want for my birthday and it’s really difficult to come up with anything, I don’t want clothes because who knows what size I’ll be in a few months time, food and drink is impossible for me to choose let alone for anyone else. I suppose those who are having that dilemma at the moment are those who have spent time and effort visiting me and supporting the family over the past few months so in my book that has been enough of a gift for this year, just try and pop over on Wednesday for a drink and a sandwich. It’s my 50th next year and I intend to make up for it then!

Anyway in town Lydia got a free upgrade to an LGKS360 which apparently has far more street cred, I had a Mr Whippy 99 and we wandered through the beech on the Market Square. This afternoon, first day of the school holidays, and the back door has constantly been swinging open and shut with known and unknown children passing through. Checked at Lookers about the new car and it’s set for Friday, drop off my Mazda and drive off in the Civic - well Jane’s driving!

26.07.09

A bit of a grim day weather wise today especially as I slept in late and missed the best bit of it. I was awake for a long period in the night not quite sure why but I can recall passing wind quite vigorously which is something I haven’t done for months, now that, especially for a man I imagine is a real treat and something to be proud of and I look forward to be able to fine tune the art.

I managed to book a caravan break for us up near Robin Hoods Bay on the North Yorkshire coast, there was precious little to choose from to be honest and when I saw this particular one I emailed with my phone number not expecting any response but this guy phoned me back last night and we did the deal over the phone.

I managed most of my Sunday lunch today except the peas but ate the other vegetables and the roast beef. I also dug out my old friend Brenda the blenda’ and made a calorific smoothie for after tea tonight.

The glass of red last night was a flop, it just didn’t taste right so I left it, I think while I’m still on the drugs it’s best to lay off it anyway. That’s it really for today as I’ve been housebound but out and about tomorrow and a busy week ahead.

25.07.09

Lydias Last Day

Fancy Dress

I’m getting used now to what is required when eating, would seem simple to most of you I know, put it in, chew, swallow, finished. It cold be that the area around the join is still a bit sensitive or even swollen but I’m having to chew any food to death before I attempt to swallow it, having said that I bet if you were to read the ‘how to eat’ guide it would tell you to chew so may times anyway! I can’t do anything but persevere with that can I? Drinking is no problem at all now after a couple of days I might even try a small glass of red later!

I’m still trying to find somewhere by the seaside for a short break for us toward the end of the six week holiday and before Chemotherapy starts again but as you can imagine most decent places are booked up, I might drop lucky though who knows?

Otherwise a quiet day, visited Mum & Dad this morning then when Jane took Miriam to a birthday party this afternoon and Lydia is out for a sleep over I thought I might get an afternoon nap only to hear the Harley pull up on the drive followed closely by Andy M, a couple of brews later and that was it, afternoon gone.

Thrown in a couple of photos, Lydias last day at school with her friends Grace and Callum and Miriam as a Cheerleader.

24.07.09

Nice to see Gill & Fiona last night, I’ve got another visit booked in for early next week but then I’m afraid diary dates are getting a bit scarce there is just so much to do. Today was Lydia’s last day at Junior School and Jane & I went to the leavers assembly this morning, at the end of the day there were tears and writing on shirts and the usual things they tend to do these days. As you can imagine at school I met up with folk I haven’t seen for a while all asking about my well being and saying how good I looked. Well just for the record all that is probably down to Jane’s hard work looking after me. Having to juggle the children at two schools and visiting me for hours on end every day in hospital and now carrying on while I’m at home making sure I get my medicine, enough rest and food and drink, change my dressings and then I see her today ironing my Mum’s bedding after changing her beds this morning. Jane deserves a break so I’m looking to book us a week away somewhere relaxing by the sea that doesn’t involve sticking to any schedule just somewhere we can do as we please.

I’m having a go tomorrow at preparing some foods in bulk so that I can freeze them to make mealtimes less of a chore for me and something that Jane doesn't have to worry about. While I’m still feeding through the tube at night I haven’t got an appetite yet and don’t really feel hungry. As soon as my stomach starts to rumble it will make it easier for me to graze through the day to keep me topped up and getting the calories I need without just eating junk food and putting the weight back on as just fat.

Right, need to go and have nurse Jane look at my bed sores and change the dressing, almost gone now so the donut cushion can go back soon!

23.07.09

Went shopping this morning and as promised loaded up with snacks and ready meals to see me through the next week or so. I had a call later from the Dietician, I have to reduce the overnight feed by one third from tonight and to a half by next Monday with a view to leaving it out all together from next Friday. Earlier I’d had a call from Kathy vB, pleased that the swallow test was a success and confirming a couple of appointments for the week after next. First on Mon 3 Aug at 7.30 pm with Mt Catton at which point if I have managed to feed properly with no supplements then the PEG formerly NJ tube cam come out. Next appointment is with the Oncologist on Thu 6 Aug to discuss the next cycles of Chemotherapy. Prior to that I’m assuming he’ll want me to be free from any drugs I’m currently taking like the opiates for pain relief and the sleeping draft. That shouldn’t be a problem, nurse Jane has been weaning me off the opiates by 1 ml each day for the last 5 days so I’m down to 10ml doses and have managed to miss out one dose in the day time as well. I think once I’m off that then the need for the sleeping draft will be no more anyway, I can perhaps replace that with a glass of red by then if I need to anyway.

I’ve got a couple of visitors coming this evening, Gill & Fiona from work, it’s always nice to see the ladies from work in their civvies and with a bit of lippy on! So that’s it they’ll be here any minute, I’ll dish up any gossip tomorrow!

22.07.09

Some sloppy porridge going down a treat this morning followed by tea and biscuits, rice pudding, tiramisu, a few sweets and an overnight feed tonight to top it all off. Tomorrow I’m going shopping with Jane to bag myself some lunchtime meals and snacks for in between times, I don’t like eating sweet things all the time, generally I prefer savoury but on the way to not being able to eat anything the choices became few and far between although a good Madras and a few pints is a way off yet and I think savoury might stimulate the taste buds a bit better.

Had my old friend Paul B visit this evening, Mick the gardeners twin brother although you’d never know it. Made a date for a night out at the local soon just as we did back at the end of February before all the treatment started.

I have a date for a home visit from my boss and an HR representative, not for a week or so yet so ample opportunity to hide the whisky stills in the cellar and stash away all the class A stuff! What are they expecting to see?

Short and sweet tonight I just want to rest a while and catch up on some paperwork - new car next week.

21.07.09

Best night’s sleep in ages last night and woke up to tea in bed! I’ve had a few drinks today without going mad, coffee tastes a bit strange but tea does taste like tea after all the talk of my taste buds being out of action. After ablutions I weighed myself, 10 stone on the nose, my lowest weight since I can remember and 52 pounds below what I weighed last October. Starting tomorrow I can eat but I’ve still got two weeks supply of liquid nutrition that I’ll use overnight or until the consultant or dietician tell me otherwise, I don’t want to go back to 13 stone plus, that may even be impossible depending on how I digest my food and what quantities I can manage. I’m just going to take it really slowly and build up over time to what I see as sufficient food to maintain a healthy weight. There’s lots of resources on the web as I’ve linked to in the past to give ideas and advice.

The District Nurse phoned to check on me instead of visiting and after Jane had ran my sister to Long Eaton on a mercy dash to get away on holiday we went up town to buy a few things including a new wireless router from Currys to get the network back up and running - even feeling a bit tired all was in and working within 20 minutes of opening the box, it wasn’t until an hour had passed did I remember it was my own job and there was no need to stretch it out!

Lydia came home from school at lunchtime looking a bit flushed but seems OK now as it’s her school trip to Twin Lakes tomorrow. I took her to the shop for packed lunch supplies and picked me up a pot of tiramisu, hobnobs for dunking and some full fat milk for porridge in the morning. Next time I’m passing McDs I’m having a Mcflurry on recommendation of David Finn apparently cheap, tasty and fattening! If the weather is a naff as it’s been today I’ll spend some time putting together some menu items for me to prepare but in time I hope to eat a child’s portion of whatever Jane cooks for herself and the kids each evening.

Loads of messages on the comments board and via email so thanks very much for all of those, I’m not sure how I could write a “huge sigh of relief” but that’s what I’m feeling right now.

20.07.09

Just finishing the blog last night and realised my network connection had dropped, after a bit or prodding and poking and same again today is seems the wireless router has taken a fatal hit so I’m connected directly into the NTL modem to get any connection at all. Trip to Argos tomorrow should put all that right!

Jane & I crawled through the traffic again this morning, just over an hour to get to the Hospital then parked up and found where we had to be and then had just a few minutes to wait. The examination was in the same room as the previous three and happily it was the same radiologist. Same routine as before, drink this then swallow when told to but this time it went to another level, a thicker variation of the fluid which seemed to be about milk shake consistency. There’s not a great deal of conversation during these things and when it was over he asked me to wait while he looked at the images on the big screen then he’d come and find me. The waiting was driving us both mad but just a few minutes later we went back in. I’ve got some good news he said, the word ‘some’ instantly conjured up a ‘but’ in my mind but it turned out not to be. The test was fine, all leaks sealed and healed! I shook him vigorously by the hand and escaped in my gown and boots to celebrate.

Back on Edwards Two we waited for the Dietician and the Consultant or one of his Registrars. The Dietician came a few minutes later, gave me a load of literature on what to start eating in what order and what effects I might encounter from just being able to eat and drink again. We waited a while but experience told me is was going to be a no show from the Consultant so we came home. Around 3 pm the charge nurse from the ward rang and said it was OK for me to have a drink today, any fluids tomorrow and start a soft diet on Wednesday. So as my sister was visiting at tea time this evening I had my first drink, a cup of tea two sugars, in almost seven weeks. I’ll be having another one later and perhaps hot chocolate before bedtime.

So anyway, great news today and I feel physically better already. A real milestone reached, both Jane & I paced the floor last night neither of us having much sleep, hopefully better from now on.

19.07.09

A photo of me togged up and ready to walk the Dales, actually a few hundred yards around the pub circuit was all I managed but it did stay dry for us. Afterwards we went on to Lanes Garden Centre in Risley to feed the animals then back to ours for coffee and that was more or less our day today, this morning was me having a wash & shave then my first bath alone since I came out of hospital which although very tiring went OK  but I was then forced back to bed for an hour to recover. I think I’ll accept Jane’s offer of help next time.

The kids haven’t broken up from school yet and Jane already has the uniforms ready for the new school for Lydia and for Miriam starting full time at her current school. It’s left my wallet flapping a little but at least it’s all done with and there’ll be no last minute rush to find the right bits.

Barry came to visit yesterday, left the Harley behind for the Porsche because of the weather. He’s taken my parents out for lunch today which could mean the revealing of a juicy piece of news or something along those lines, I’ll get an update later tonight.

That’s it for tonight, hopefully it will be good news tomorrow from the swallow test, I’ll have everything crossed as usual.

17.07.09

I couldn’t get Lydia to take a decent photo of me so I’ll get some over the weekend, they always come out better when you’re not posing for them anyway. Helen & Andy dropped by this afternoon, they’d been on a little walk in Stanton By Dale that we might try on Sunday afternoon, Helen is OK after her first Chemotherapy yesterday though she was sick last night. I did get out myself but stuck to a short route as I was on my own and still managed to get wet. I had a call from the dietician at the City Hospital wondering where I was as she’d expected to see me yesterday morning after the swallow test. I explained it had been moved to Monday and she did find me on the system so I’m pleased we were both looking at the same appointment. I’ll stay on the 1500 ml nutrition bags for a while even if the leak has sealed up, I’ve also got the Fortisip drinks to boost me on the way as I really don’t want to lose any more weight, perhaps that’s why I thought the photos Lydia took all looked naff because I looked too thin.

Lydia is out with friends this evening watching the new Harry Potter film then tomorrow she has a swimming party in the afternoon followed by evening barbeque. A social life ey? So that’s what one sounds like. It’s my birthday in a couple of weeks so I’m hoping there might be a little bit of celebrating for Jane & I to do then if I can eat and drink.

I’ll be having a visit next week from my boss and an HR representative just to make sure all is in order and to see if there is anything they can help with. To be honest I haven’t given work a thought over these past six weeks apart from the staff there who I do miss. I had a couple of unexpected visits while I was in hospital which really cheered me up, from David Finn - we will meet again David but I’ll be buying the drinks!

So I just need everyone to cross their fingers for Monday’s swallow test (must explain that to my Brother!) and things will be back on track.

16.07.09

I hope you’ve all been to the polling station if not there’s still time! I went with Jane this afternoon although I’d had the foresight to do a postal vote again in case I was in hospital, it was a nice walk out although at no pace because Miriam was with us and I felt much better afterwards. Part of my return to fitness regime are breathing exercises where I breathe in as normal then take it that bit further, it can be painful to begin with but worth it. Other things include practicing a method for bringing up sputum which helps with the previous exercise. I’ll spare you the details but the perk of learning all of this in hospital was the fact that the Physiotherapists were the young good looking ones.

At least I’m looking normal again or so I keep being told, no NJ tube in my nose and all other bits are covered by my clothes, my hair has come back after chemotherapy and I’ve already had it cut since I came home. I’ll post a couple of pictures tomorrow just so you remember what I look like - which reminds me of a very poor joke my Dad loves to tell about how Mick is waiting for Pat at the airport after being away for 30 years and a bystander asks “will you recognise him? No says Mick I won’t but he’ll recognise me ‘coz I’ve not been away.

Jane has the arrangements in place for Monday’s swallow test, it seems to have come around again very quick I really do feel more hopeful in passing this time.

Right I must go and see Nurse Jane, the dressing over my chest drain and the one on the bed sore on my bottom need changing - the good sign is that we can have a bit of a giggle about it between us now, it’s nice to see Jane in good spirits after a bit of a rough ride and being able to take the nursing duties and home caring stuff mainly in her stride. Must try and book in at Treetops for next week and give ourselves a treat.

15.07.09

Managed to bring it around with the sleeping solution and taking just 5ml was enough to give me a decent night’s sleep. There are some things at the moment that are out of my control, what I can eat and drink for example so adding sleep to that list was not something I wanted to do, I know it’s another drug to have to wean myself off eventually but I’m happy that all is under control at the moment, one pain killer one sleeping tablet ‘aint so bad.

I had Rob visit this morning, always a pleasure for anyone to just drop by one of us is mostly in.

My sister emailed me her diary of what happened during my stay in hospital and I have some notes of what went off as well as some extracts from the nursing notes. Everything is still a little blurred and I think it would take a long time to put together a blog of that period with any degree of accuracy and then again do I really want to remember, recall and put to paper some of those difficult and emotional days? On paper it seems quite a straightforward list of events but five weeks is a long time and although for me with some periods still unaccounted for it seems even shorter for some members of the family every day must have been a real drag.

So the upshot is that for the moment at least I’m not going to backfill the missing days in the blog from the time spent in hospital, this last week out of hospital has been difficult and I’m nowhere near back to any degree of fitness so early evening when I tend to blog is also when I’m most tired. I know it sounds a bit like an excuse for not having done my homework but that’s how it is at the moment.

I still have a pile of snail mail to deal with, Tax Credit Returns has crept to the top of the pile so I’d better do that in the morning!

14.07.09

Well I found a few photos out and decided not to post them anywhere public! If you want to see them you’ll have to pop round and see them in the flesh so to speak. I’ve managed a couple of walks out over the last few days and it’s only how my mood has taken me or the fact hat we’ve had visitors have I not managed to write anything here. I was still very tired and after a fruitless day on Saturday Jane booked an appointment to see the GP. She was very understanding and gave us enough time to at least fill her in out the outline of the story then amongst other recommendations she did prescribe me some sleeping tablets, in liquid form, in stock at the chemist to syringe into the feeding tube. I won’t tell you what it is called but that the dose was 5ml increasing to 15 ml to reach the desired sleep time. My donut cushion also arrived yesterday, it’s actually just a square like the end cut off a lilo but does work and adds to my TV viewing pleasure. The district nurse dropped by to change my dressings and inspect a sore patch on my bottom, we also had the usual conversation around the passage of urine and bowel movements - lovely. No matter what happens next Monday with the swallow test I think I’ve passed the point now where things can go dramatically wrong without any stupid intervention from me (yes I will be careful with the drugs). The cancer is out and gone and it’s only the recovery from those two operations that is holding me back a bit now before I can eat and drink again sending me on to the next cycles of Chemotherapy. I think everything is in place now to get myself as fit and healthy as I can be so on the day the swallow test does work  I’ll be ready to move on.

Well anyway last night it was time to take the sleeping tablet, we’d decided on starting at 10ml, safe on the middle ground. That was at 9pm in preparation for the bedtime ritual, well 15 minutes later Jane was shaking me awake telling me to go up to bed, at about 4 am I woke for some pain killers then went back to sleep and didn’t surface again properly until lunchtime even late this afternoon I’ve been napping a bit but not like before relying on the pain killers this has been real deep sleep. Just 5ml tonight a bit later as well and hopefully I’ll be refreshed for visitors tomorrow!

11.07.9

Yesterday was meant to be a bit of a catch up day, still catching up on sleep mainly, I’m not having much luck at night and spend ages plumping up my pillows and turning this way then the other. No-one will give me any sleeping tablets or any sort of drug to help me sleep at night time. I’ll give it another week or so, until after the next swallow test which is on Monday 20th July at 9.20 am then se what happens. Another 10 days nil by mouth then!

Yesterday Mum came for a look at me and an opportunity to get her hands on some of my strawberry cuttings then in the afternoon we went to Burton for Hannah’s 3rd Birthday Party, Jane and I got away early as the journey had taken it out of me a bit then Jane’s Mum & Dad brought the kids home later.

This morning Mick came and mowed the lawn and said he might be over in the week to have a look at the hedges again before they get too much. I’m still looking at how best to catch up with all the missed blog entries. I might just put in what I can remember but then Jane would no doubt have a completely different version of events. I don’t suppose that matters though as it’s what we are going through or have been through so the accuracy is irrelevant really as we’re not trying to replicate what the same journey might be like for someone else.

I have got just a few photos somewhere, a few of just post op first time around then a couple of me with a smile on my face and one or two of me now at 10st 3lb, the weight I was when I left hospital last Tuesday

09.07.09

It was what seemed like my first full day at home today and I had to be at the hospital for 8.30 to catch the Doctor’s round then be in x-ray for 9.20 am for the latest swallow test to check if the seal between my new stomach and Oesophagus had fixed itself after having some issues around blood supply and tissue quality. Anyway it hasn’t so I need another week nil by mouth which itself isn’t a problem it’s just psychological that I haven't had anything to drink  or eat now for so long, I think it bothers other people more than me!

Just thinking back to the visitors who turned up while I was in hospital, Gill & Fiona chose a good day where I was feeling good and we managed a few laughs while I remember comparing Mark & Geoff’s visit to the visit of Joliet Jake & Elwood Blues to the Penguin in the Blues Brothers, as soon as I mentioned it would be OK for them to leave they high tailed it out of there like scared rabbits. Mind you after looking at myself in the mirror afterwards I understand why. No peace tonight and I need one last episode to catch up on sleep then hopefully I might be more like normal, whatever that is.

08.07.09

Well the blog has been a bit sparse - for a few reasons I suppose. Jane and Lydia just haven’t had the time as I wanted visiting all the time. We also seem to have lost a week or so that I suppose will reappear when we make account of every day of the last five weeks spent in hospital.

The chair I’m blogging from is probably the most comfortable in the house for me at the moment so until my ‘donut’ cushion arrives to keep the pressure off my backside I can see me spending a few hours here.

I can see over 180 emails that require attention and none of them are in my usual spam folder so a bit of work to do there as well.

But for the time being - all is now well - thanks to all who visited in the City Hospital each one was a real upper! Believe me I needed a few of those to balance out the downers

07.07.09

All I have in now is a PEG tube for feeding and taking drugs, a drug regime which is just liquids via the tube and the District Nurse lined up to see me tomorrow at home .

So Messrs Catton and Welch have agreed that it is time for me to go home.
Just need to squeeze in one last chest x-ray then managed to get away about 2.30 pm

06.07.09

Drain removal from chest and just left with a bag on!

If all goes well overnight I can go home tomorrow, 07.07.09 - the date I have in my diary for my next appointment with the oncologist to discuss the next stages of chemotherapy

05.07.09

Came home from9 am to 5 pm to test the water

04.07.09

Came home from9 am to 5 pm to test the water

03.07.09

02.07.09

01.07.09