Date

Treatment Blog - October 09

30.10.09

Last day of another month tomorrow, Halloween on Saturday then Jane’s birthday on Sunday. Since laying off the chemo tablets I’ve picked up no end. I’ve finished the course of anti biotics I brought home from the hospital so I phoned in today expecting to be told to start them again now. Instead I have an appointment to see the Oncologist next Tuesday before he decides what to do. I’ve been managing food much better and this evening managed fish, fries and peas and it tasted like it should do, once that starts to happen it’s not so much of a battle to try and remember to eat something, to get your appetite back and to enjoy the food is great. I’m sleeping much better too, managed a glass of white wine with Jane last night and didn’t wake up until 8.30, still had an hour downstairs in the night though.

28.10.09

Sleep interrupted by Miriam at 6am wanting to give Lydia her birthday present then there seemed no point going back to bed so while Jane & Lydia headed off to Nottingham for some retail therapy I gathered together an armful of mail that had gathered last week and left Miriam watching Harry Potter. It was mostly stuff from the Job Centre Plus and some of it downright confusing. I bit the bullet and rang them and to my surprise they were really helpful and soon had what was their mistake rectified and I’m glad to say everything is now back on track.

I had a phone call late yesterday afternoon from the Occupational Health people at work. Not long into the conversation and I could feel my blood rising and it finally erupted when the person on the other end predicted I would not be entitled to any ill health retirement benefit, some skill to say she’s never met me or knows anything about me. That call ended abruptly to be followed by another from her manager trying to clear the air but it only served to put me on my guard and make me realise that there is a long way to go yet before all this is sorted, physically, mentally, emotionally as well as financially. All that type of contact can in future be done by snail mail.

Still breathless under exertion and just one more full days worth of anti biotics, I need to then see about finishing off my Chemo tablets, I’m keen to get it all in me now so I can well get it all back out of my system again.

Food going well today, managed amongst other stuff porridge for breakfast, two boiled eggs, crisps and yoghurt, tea and biscuits 2 slices of pizza and coleslaw, a few sweets and chocolates and an apple, a mug of horlicks later but nothing to eat after 7.30 or it tends to roll back out again!

27.10.09

Wham bam and there’s another five days gone by - back in hospital again. Jane and I went for the GP appointment last Thursday evening and during the consultation I was feeling a bit green around the gills and puffing and wheezing. All he could do was write me a form to have blood taken, I’d need to ring and make an appointment in the morning, as I raised my eyebrows and muttered something about Friday and weekend and never get done he added “Urgent” to the top corner. We went back to my Mums just around the corner where we’d left the car and my sister was there. I rather violently emptied my bowels for a second time. When I realised the urgent blood test results would take up to a week I took advice from those who obviously know better or at least have my best interests at heart and a hour later I was at the Queens Medical Centre Hospital A&E department being booked in.

By midnight I’d had my first course of IV anti biotics and was on my way to the ward, D57 if anyone knows it. 42 beds on the ward and as usual it seemed like 41 crackpots and me! I spent a couple of days on IV fluids and more anti biotics, chest x-rays and on Tuesday a CT scan. Each day the blood results got a little better, white cell count especially which showed the infection decreasing. The results of the CT scan showed no abnormalities either from a medical, surgical or oncology point of view which is great news again confirming that if any of the tumor is still there it’s bloody good at hiding.

So Jane brought me home again last night and I had the best night’s sleep I’ve had in absolutely ages. There’s been a bit of coming and going today and I’ve been sorting a few days worth of mail and email so not had a nap today hoping for another 12 hours tonight. I think I’d just let my guard slip for a bit and need a few days letting someone else take the pressure for me. That seems to have done the trick and I feel much more positive again. My aim is to keep out of hospital until my next scheduled appointment on 19 Nov and to go there having put on a couple of pounds in weight!

After one phone call to the ward I returned to my bed to find Dr Fraser-Moodie who performed the first endoscopy on me a year ago tomorrow, Lydia’s birthday. She’d spoken about me with the other honchos just last Friday so it’s nice to know I haven’t fallen off the radar quite just yet. She took an address label out of my notes to give to the surgeon to get me in for another dilation of the oesophagus before Christmas so I can get some turkey down me. To be honest I’d settle for a few fish fingers and a glass or three of red wine!

22.10.09

Jane and I managed to get to Treetops yesterday morning, it was a bit of a fight to get ready and there for 10am but I was glad that I’d managed it afterwards, I was somehow warm from it for the day which makes a change as I still feel the cold all the time. I had a really relaxing back massage with Frankincense oil - thanks to Gayle.

It was a bit of a milestone yesterday 21 Oct last year was the appointment for the first endoscopy on the road to a diagnosis. It seems a long time ago now and the way I’m feeling today there is still a ways to go! This breathlessness is getting me down and so, more longer term is the seemingly losing battle to maintain a steady weight.

I went back to bed this morning when Jane left to take Miriam to school then ‘leapt’ out of it again when the postman rang the doorbell only to stumble and go my length into a shelving unit and acquire a bit of a cut and bump on my forehead. I mention it here before anyone else, apart from Jane & the Postman, sees it, it was just an accident! The postman (not on strike) bless him did sit with me by the door for a few minutes then knocked again half an hour later to make sure I was OK.

Doctors appointment tonight, seems a bit daft to give me an out of hours appointment when I’m currently at home all day but who knows how their system works?

I did have my visit from work yesterday, my boss and a new lady from HR doing their bit to help out, it is appreciated and can’t be easy for them coming into our house and looking at my somewhat pathetic form and seeing what they can do for me. One thing I have asked them to look into and I’ll accept advice from anyone else, is the possibility of early retirement on ill health grounds. I am 50 next and it does all seem to fit around my circumstances fairly well. Anyway for now it’s just and idea so don’t write me off from work just yet.

20.10.09

Well the weather got the better of me this afternoon after a slow start this morning so by my reckoning I haven’t been outside other than from the car to the hospital or home for two weeks now. I did ring the doctors this afternoon and put all my niggling complaints to him some of which I reckon should have been followed up at the hospital as they were known about there just with so many people involved that week no one seemed to pick up on them. I have low blood pressure I’m sure, it was low a couple of times in hospital and I still have dizzy spells and spots in front of my eyes when I get up from laying down. Just taking a few steps especially upstairs really takes my breath away and if I remember right my haemoglobin (HB) blood levels for Chemo were only just in range, also from a conversation between my sister and Mr Catton he did say I looked a bit anemic - I have been like it before with same symptoms and ended up having a blood transfusion. Some of the other listed symptoms point to the same thing but as ever I’m not getting into self diagnosis from t’internet. Apart from that I have this sharp stabbing pain in my back which forces me into the prone position for half an hour or so to get rid of it, not sure what that is maybe an after effect of the Endoscopy.

Well the appointment to see my GP is on Thursday at 6.50pm - a bit close to bedtime! The surgery has gone all 21st century with talking direct to doctors on the phone and these late night clinics.

19.10.09

Still not left the house since coming home from hospital and Chemo last Thursday. I’ll try and have a walk to the post office tomorrow weather permitting. Just trying to sort out a few domestic matters like getting the car cleaned and the garden spruced up for the coming months. Jane was never the outdoor person and that’s fair as she keeps everything ship shape indoors.

Had a good soak in the bath this morning and have managed a bit more to eat today although I still think I need to do more the trouble is that when I get full it does literally brim over and it’s not very pleasant.

Doing some preparation for the works visit on Wednesday, Jane’s going out with the Mother’s club so I’ll be on my own with the pair of them, I’ll need to take some pain killers before they come at 2 pm I just hope they have the right effect, sometimes they can send me to sleep and at other times it makes me talk for England.

18.10.09

Well after an action packed week I’ve tried to chill this weekend and as my Dad is under the weather we missed visiting them yesterday so I’ve just spent a couple of days on the sofa, lounging but not sleeping, I’ve just been waking once in the night for just enough time for a cup of tea and half an hours tele. I’ve also been trying to measure up my food capacity, I have overdone it just the once where a little bit had to come back to make way for my evening dose of tablets, I’m averaging ten in the morning and ten at night. It seems I can eat just about anything I like provided I follow the rules of a good posture and chew it well it’s just getting the amount right before it’s too late.

I’ve had a lot of back pain since coming home be it from different beds I’ve been sleeping on or whatever but the OxyNorm seems to take care of it as and when required.

Have a look at my reply to Gerald’s comment regarding side effects, I did have a call from my sister last night at QMC A&E where a lady was asking after me, she’d been admitted with all sorts of complications, I’ve met her a couple of times in Chemo clinic where she has always looked worse for wear.

I have visitors from work coming this Wednesday, I hope I’m in fine fettle for them as there’s a lot to say and get through this time.

The dressing on the wound from my Jejenostomy tube came off today so for the first time since mid March I’m free of tubes, pipes and dressings and intend to celebrate in the morning when the kids are at school with a long soak in the bath.

16.10.09

Well we got a call first thing Monday to go to the Endoscopy Unit at the City Hospital for 10.30, a sister there would surely be able to unblock the tube for me. Got there and after a concerted effort for a good couple of hours she admitted defeat. Next step was to be admitted as an in patient so we went and sat on Harvey 1 the admissions ward. Mid afternoon Jane went home to collect the kids from school etc and sort some things out for me. When Jane came back with the kids for a visit at about 7pm I was still waiting to be seen by a Doctor and finally blew off some steam and a short while later I was in a bed not five yards from where I’d been sat all afternoon.

At 1.20 in the morning I was moved to another ward, Ashwell Stroke Unit - no idea why, I can only assume that’s the only place a bed was available. The following morning I had chance to observe my fellow inmates, My conclusion was to avoid eye contact with any and all of them, especially those who called me mate in one breath and a bastard in the next. I did see one of Mr Catton’s junior doctors that afternoon and he said it didn’t look like anything would happen today or even what was to happen, Mr Catton would see me in the morning and things would start to happen from then. I spent the day on my bed watching tele and avoiding people and survived the night grabbibg a few hours sleep in between the caterwauling and yowling associated with the inpatients from One Flew Over!

Wednesday morning and Mr Catton was at my bedside at 9.00am as always there was an air of confidence that something would at last get sorted - as well as his usual entourage of about a dozen junior doctors and registrars. The plan was to remove the Jejenostomy tube from my stomach, do the endoscopy that was planned for the 27th of this month anyway and dilate / stretch the oesophagus to allow me to eat better - if that didn’t appear to work, while still on the slab he would fit an NJ tube (into my nose like I had before). All this would happen around lunchtime either tagged onto the end of the morning list or first on the afternoon one.

I ended up first on the afternoon list and post procedure I’d be moved to another ward as well, Hogarth Ward much closer to the Oncology wards but not an Oncology ward itself.

2.15pm and Mr Parsons, the third surgeon of Catton, Parsons & Welch injected the sedative and I was out of it although apparently able to answer yes / no questions but with absolutely no recollection. I woke up on Hogarth Ward, nice and quiet and opposite someone I’d met briefly before during my stay on Edwards 2 for surgery in June. As Jane’s visit was coming to an end I was given my evening meal, chicken korma with rice and I scoffed the lot no problem at all. Later I watched the footie with my mate as my tele was on the blink, goodbye to the £10 I’d paid on my credit card for 3 days worth of viewing.

Thursday morning and I was determined to go ahead with my Chemotherapy, this was to be the last one! I’d mentioned it to the nurses on the ward a few times and no-one had said no. In the morning I was awake before the lights went on and washed and dressed ready to leave for the clinic, turned out I just had time for two weetabix and a cuppa before I left with the nurses blessing. They gave me my 9am medication early and said they’d tell the doctor on his round where I was in case he wanted to see me again.

During preparation for Chemo the nurses realised I’d come as an in patient but also said no way could I go back to Hogarth after having had Chemo. I saw this as my opportunity to get discharged as I didn’t see any reason for me to stay in any longer. When Jane arrived she went to the ward to sort everything out as she is so good at doing and sure enough she came back with the rest of my stuff and a discharge letter.

I sat out the rest of the day and Barry came and sat with me for the last couple of hours and took me home, not on the back of the Harley but in the Cayenne, he was ‘fresh’ back from a few days R&R in Spain with the boys - the picture tells the story, Barry is the one on the left!

So early to bed last night and so glad to be back home again. Woke up with the kids this morning and was a tiny bit sick first thing but since then I’ve managed breakfast and lunch and taken all my tablets including the horse ones no problem at all. To say I’ve had such a turbulent week and spent the best part of it nil by mouth I was pleasantly surprised to weigh in at 9st 5lb.

Well that is the last of the Chemotherapy thank goodness - three weeks now to take the remaining in tablet form then get it all out of my system for the end of November.

Thanks to those so concerned about my sudden disappearance that they had to ring in or email but hopefully all back on track now.

11.09.09

Well bugger me, went to take my medication and then get hooked up for food on Friday evening as normal. I took the small tablets and had the chemo ones and the antibiotics dissolved in a 50ml syringe ready to shoot in, got past the first syringe full then the second one just sort of stopped as if I’d turned the tap off. I’ve had the tube block up before so I tried all the usual tricks including exerting far too much pressure than is recommended but to no avail it was well and truly blocked. So, what to do? I could take the pills orally at a push but what with the nausea and that having just passed I was keen that I got the bags of nutrition back up and running as soon as possible and didn’t have to rely on what I could take orally if anything.

Jane, bless her, made a few calls and we ended up with an on call doctor sending us to the Emergency Admisiions Unit at the City Hospital - we got there about 10.30pm where tha Ward sister straight away wanted to admit me with low blood pressure but anyway had a brief attempt at unblocking the line with coca cola to no avail. We then waited an hhour for what turned out to be a discharge letter from a doctor who more or less passed the buck back to us to get in touch with the Chemo Unit or the Dietician on Monday morning. We’d already done the District Nurse bit, she could only try what we’d already tried so what was the point? 1am I tried to swallow the chemo tablets only for the biggest one to get stuck in my throat and not wanting to budge one way or the other. After 5 minutes of back slapping, wretching and swallowing it finally went down but I won’t do that again in a hurry - self torture is not my thing.

Next morning the Macmillan Nurse pointed us to ward 307 at the Derby Royal, expert at dealing with blocked lines we were told, after lunch we were back at home with a stitch missing from the line  after all the man handling and the line still blocked. Jane left a message with the Specialist GI Nurse at the City who is my treatment coordinator in as many words. I’ll be on to her first thing in the morning and the hope is I can get it sorted tomorrow. My concern is that two hospitals and as many ward sisters and doctors as you like can neither remove the obstruction or replace the line or take any responsibility for dealing with it. I suppose that’s what you get for having something go wrong other than Mon - Fr 9 - 5.

09.10.09

A nice quiet day today, sleeping is still OK I’d say rather than brilliant but certainly much better than a week ago. Breathless today and now hacking up some brown stuff as well as the more common or garden greenies! Well into the second week of this now but I can see it being gone by next week, the problem now is what little I can and do eat orally is made even more difficult by the fact my throat is so sore from coughing and wretching all the time.

Received a letter this morning, notification of a clinic appointment for 04 Jan 10 at 6pm - nothing like looking ahead I suppose. Less than a week to go until the next and final cycle of chemotherapy - yes it’s on my mind already with both dread and joy that it will soon be over. No full hair loss this time around just a bit of thinning and lack of a beard, just the grey ones popping back through! That’s it for today !

08.10.09

Ouch - who’d have thought just a couple of stitches could be so sore? She did say I was a bit tough and I could feel her gouging through the flesh to get the hook through, a nice bit of silk this time though none of your cat gut nonsense.

I went on the bus from home to leave Jane with a bit of R&R got to the QMC then hopped on the Medilink bus to the City, arrived at 11.20am and was back at the QMC at 5 minutes past one, to just miss the connecting 21 bus so I slummed it for an hour around the QMC before getting home at 2.30pm exhausted.

I’d sat in the waiting room in my gown with the others one of whom turned out to be a colleague from work. You know how it is when you’re not quite sure if it’s who you think it is, especially when they have no clothes on - yes that old gag. It turned out to be Mick Moore one of the staff members clawed into the centre at the last restructure. We did our bit at putting the world to rights then went our separate ways - good luck yourself Mick!

I’ve been much better again today, no nausea at all although I was up a bit longer in the night and have been a bit dozy today. I also had a call from the City Hospital later this afternoon confirming an appointment for the Gastroscopy arranged by Mr Welch, for the 24 Oct - almost a year to the day since the first one if you want to recap on the Symptoms / Diagnosis page.

07.10.09

Richard for the first time in over a week I haven’t started the day as you suggest by bowing to the porcelain styling abilities of Messrs Armitage and Shanks or as in the upstairs loo Kintyre. I can only assume that the latest change of anti emetic did the trick and so far today I’ve felt right as ninepence.

I received my letter in the post this morning to attend day surgery tomorrow just to have two stitches put in my feeding tube to keep it attached to my stomach. I have tried to get it done at the local GP surgery which is a huge modern affair but no-one there can insert a stitch! I’m sure there’s a You Tube video I can watch and do it myself I’ve seen it done often enough on Holby - 3:0 proline and all that, how hard can it be?

We were at Treetops this morning, I had an Aromatherapy massage with Frankincense and Lavender very relaxing and I did nod off briefly only to wake up with snot dripping! Jane opted for reflexology which is a bit ticklish for me, OK I know  it’s very childish so to avoid embarrassment I just don’t have it!

I reviewed my medication list this morning just so I can see what’s what and this is the current list. There’s also a whole pile, or should I say bagful of other different medicines waiting to go back to the pharmacy for recycling.

Some would fetch a pound a pop on the market square while others are a long term necessity.

Finally can anyone spot the resemblance in the photo? Just something I stumbled across but I’m sure I’ve got one uncannily similar.

Medication as at 07.10.09
For acid reflux	Lansoporazole 15mg once a day, will probably take forever
Anti sickness	Cyclizine 50mg one tablet 3 times a day - working good so far!
Pain Relief	OxyContin 10mg 2 tablets twice a day slow release
Pain Relief	OxyNorm 5 - 10ml as required instant release opiate pain killer - cool stuff man!
Sleeping Tablets	Lorazepam 1mg once or twice a day as required but I’m not taking any at the moment

06.10.09

Crikey well that was a week that was! Worst I’ve been yet since treatment started. Jane dragged me to the Chemo Clinic on Friday last week, I wasn’t sleeping, had a head cold and still carrying the chest infection and being sick or at least going through the motions every hour for about ten minutes. It made a long day and I came away with different anti sickness tablets and a new course of anti biotics which I didn’t realise until later were the size of a babies big toe! I later had them swapped by my GP for a solution instead to push down the tube.

Over the weekend I was just lurching from settee to bed back to the settee and taking tablets where I was supposed to but found I was now having to dissolve the chemo tablets as well to get them down - been there before haven’t I?

Saturday night we had an invite to a friends wedding reception at Risley Park. Despite having nothing to wear and feeling like crap I knew Helen would be there and if I let Jane go with the kids there’d be nothing but questions which wasn’t fair so for a couple of hours I braved it out before having to come home. I thought I managed a clean getaway until I had to dash outside to be sick, once I’d gathered myself I was faced with a couple of mates intent on passing on their best wishes to me by way of a bear hug. Whatever that sparked off I don’t know but since Satuday night I’ve slept reasonably well only getting up once each night since and that after not taking any sleeping tablets at all. Sunday evening I struggled trying to take my evening tablets, all 11 of them, and when the chemo tablets got stuck in my throat things all got a bit stressed and emotional and I went to bed with Lydia seeing me not at my best and she later admitted to me to herself being upset because I was, Monday I had an appointment with the general surgeon and was determined to bottom a few things out so that didn’t happen again.

Daytimes are passing much of a muchness, still sleeping OK nevertheless tired during the day and constantly battling with nausea as before. It’s not so much shock and awe in my personal battle more like snot and gore as I churn out copious amounts of the stuff through mouth and nose. Evening clinic yesterday and Jane and I saw Mr Welch who to remind you is the director of surgery there and also assisted Mr Catton with my surgery back in June. I mostly talked as I’d planned which did nothing more than prompt head nodding responses to all my concerns and then as he said I “talked myself into a Gastroscopy” In case like mine where there was a delay in the join healing then chances are it could seal a bit too tight and so will just need dyna rodding!

Today we once again jetted off this time to see the Oncologist, my concerns were over the constant nausea more than anything. He wasn’t going to reduce any doses or change any medication at this stage, he did give me some different anti sickness drugs but basically it’s just a case of ride it out over the next four weeks until the treatment stops. He’s booked me in for another CT scan and I see him in six weeks time to discuss the results and see where things go from there.

So that’s it back up to date, everyone can now finger point and say “I told you so” meaning they’d all said treatment would get harder and I was just perhaps that little bit too cocky thinking I was immune to it all. As it was, I think once the chest infection made that chink in my armour I suddenly became susceptible to all and any infection going and although my bloods are still good each time my immune system is taking a bit of a beating. Having said that I’m much better this evening and hope to carry on with my daily updates from now.

Left is Miriam as she appears on the Blue Nose Friends web site!