Date

Treatment Blog - August 09

31.08.09

Well we all had a good time on our week away. Caravan holidays seem to give the kids more opportunity to go out and mingle than if you’re stuck in a cottage and our two certainly did that. I perhaps got a little too much exercise and couldn’t eat enough to put the required fuel back in so I ended up the week four pounds lighter! Jane managed super, did all the driving and all in all was a super mum for the week, not that she isn’t the rest of the time but it was apparent to me just how useless I am at the moment. If you looked at the photos yesterday then have another look because I’ve added some more from Jane’s camera today.

Before I forget, not that I really approve of scooters over bikes but here’s my mate Rob taking on the bikers at Matlock (about 20 seconds in Blue scooter with L plate on) http://www.youtube.com/watch?v=kW_X1wXzGxg That’s what happens when you take voluntary redundancy!

Had a few family visitors yesterday and today, my Brother this morning on his Harley which always cheers me up, Jane’s Mum & Dad this afternoon and we both saw my parents yesterday. Jane as usual has all the holiday washing done, ironed and put away and we’re ready for the week ahead, bloods for me tomorrow at hospital while Jane takes the kids for school shoes then Chemo for me on Thursday (lift all sorted) and the kids back at school next week. I’m OK with my medication now and have it down to 20ml of Oxycontin morning and night with Oxynorm in between but only seldom as required. There is of course that unknown to come of how the Chemo will affect me this time around. I’m expecting to have to take some food supplements in the way of Fortisips over the coming weeks just to keep the calories up but I hope to avoid having to revert to night feeding even though I still have the tube ready to go at any time.

Finally thanks to Petra for the email about Tesco Delas and yes I think you have the name right - best not to continue in a public debate though as I’m aware those concerned are still around, whether they still wear F+F or Cherokee I wouldn’t know!

30.08.09

Back from holiday yesterday, all in fairly good fettle but I’ll explain more later, meanwhile here’s a few photos for those of you who don’t know Whitby or Robin Hoods Bay or what an ice cream looks like!

Whitby 09

20.08.09

Just thinking back and can’t remember why I didn’t ‘blog’ yesterday, just forgot I assume can’t think of any other reason, or maybe I was overwhelmed by Rob’s Vespa on my driveway in all it’s glory, he did tell me the address of a you tube video but its gone completely out of my head, email it me Rob and I’ll add the link here somewhere. We had a nice but quick cuppa and a chat as I had to get to Comet to buy their last two portable DVD players in stock which I wanted for the journey on Saturday. As the guy in the shop explained at great lengths they are not just for in the car nowadays but double as a photo frame mp3 player DivX etc etc and not a bad price I didn’t think and I managed to blag a carry case for ‘nowt. Its the rather slick Philips PET 723 if anyone is interested.

Just set those on charge and the next visitor turned up, Andrew K from work with a few touching gifts for me and the kids from lets just say an unknown and unexpected source he managed to stay a bit longer than Rob listening to me ramble on I just hope you found you’re way back to the M1 Andy I’m not well known for my road directions!

I was back at Treetops this morning and took my session in Reflexology, very relaxing and apparently after just a couple of sessions she could tell me my life history regarding broken bones and traumas and that sort of thing. This afternoon we had managed to farm the kids out, Lydia “just out” (11 going on 18!) and Miriam had a lunch date with her fiend Jack. Jane used the opportunity to get on with doing nothing much at all, can’t say I blame her and I headed off to the City for my appointment with the Oncologist. They had discussed Radiotherapy last Friday and decided not to go down that route at the moment just continue with the Chemo! I signed my consent forms and he said I could phone him next Thursday to discus the CT scan I’m having tomorrow or wait until Chemo day on 3 Sep and he’ll come up and discus it in person.

I’ll have my notebook with me next week for any noteworthy events but it’s more for us all to unwind a little so don’t expect too much on our return will you?

18.08.09

Nightmare free last night and managed a good nights sleep, I had a really early night because I’d over eaten at teatime so lay on the bed to try and help digest it and to be close to the loo. I seem to have about a three hour digestion period from shoving it in to well popping it back out again!

I rallied the kids in the garden this morning just to do a bit of sweeping and pruning, it was all a bit too much for Lydia - and boring but Miriam soldiered on until we’d finished after that we popped to Tesco to try and get some clothes for next week. I chose some jeans and a tshirt not realising they actually cost half the ticket price so the jeans were £9 and the tshirt £4. I’ll get Jane to take the jeans back though on Thursday, later this afternoon I went up town to Burtons and got 2 pairs for £35 and the quality though not fantastic was better than the Tesco Delamares! Anyone remember Delas or Delamares? The Tesco brand of clothing must have been back in the early 70s. It was a heinous crime to be caught wearing them when I was at school and the ridicule for doing so seemed to never end .

Not much on the agenda for tomorrow although he green water in the water feature at the top of the garden is fast coming to the top of my to do list.

17.08.09

Blah! - Slept awful the last two nights and have decided on the advice of the Macmillan Nurse to stop taking the Amitriptyline. I could sleep for England which sort of ruins the day if you need to be anywhere before midday but also some of the known side effects are really starting to get me down a bit, nightmares in particular as well as a dry mouth, blurred vision etc etc.

Barry, my brother visited yesterday on his return from Kuala Lumpur, Phuket and Bangkok to name drop just a few of the places he’s just visited in tow were Thomas and Jessica his two kids Jessica off to nursing college after the break and Thomas starting to bring in a bit of a wage which is good.

I can’t get the CT appointment changed for love nor money, “there just isn’t anything available”. I even offered to just go and sit there for a morning as she said people don’t cancel their appointments they just don’t turn up but I was advised not to by the same unhelpful monotone voice I’d spoken to last week. To get one job out of the way I did go to the hospital this afternoon, the stitches on the plastic tab holding the feeding tube in place have now both come off so Sarah the dietician arranged for me to attend surgical outpatients to have them redone. Rather uneventful although I did have to go through a full admissions procedure before the Doctor would see me and do the deed.

15.08.09

Thursday night Jane had worked out that I needed to up the dose of Amitriptylene to three tablets, 30 mg. As before, the change in dose led to a bit of a body shock and the next morning I couldn’t get out of bed and was knackered all day. Last night I faired much better and, as we had discussed with the Macmillan Nurse who visited yesterday, I won’t be adding any more to that dose and with any luck I should be able to begin to drop off the opiate pain killers in due course.

I rang the appointments officer at the City Hospital to try and get my CT scan brought forward but didn’t have much luck, in an almost answer machine tone (it was either Hinge or Bracket I couldn’t tell which) I was told there were no free appointments for next week but to phone on Monday or Tuesday to see if there have been any cancellations. I’ll do that, perhaps with a little more assertiveness on Monday. Apart from that it’s been a quiet couple of days, my brother called to say he’s back in the country after his latest jaunt abroad and Forest got beat by the baggies.

For tea tonight I faced my nemesis, Spanish omelette, if you look back at section 4 on the symptoms page it will remind you that it was Spanish omelette that was stuck in my throat when I went for the 2nd endoscopy. This time it went down a treat and I’m very chuffed with the progress I’m making on the eating front.

13.08.09

Busy day today, I slept right through last night which is very rare and was ready to go before 8.30am, Corn Flakes for breakfast instead of the usual mushy weetabix or porridge, it went down OK. I had the Indian Head Massage at Treetops, almost everything else was off limits because of the aftermath of surgery. It was very relaxing and afterwards on the R4 bus into Nottingham I dozed off and only a car horn helped me get off at the right stop. I didn’t get to the herbal shop as planned, by the time I’d chosen a new toaster from John Lewis and headed towards Broadmarsh it was too much of an effort to backtrack again so I’ll have that job for another day. Yesterday at the kid’s party Jane & I sneaked out to Decathlon and Next, I was looking for some hand weights to try and plump out the saggy skin on my arms a bit, although Andy said I’d be better off just using the bar I’m determined to pump some iron, well a bit anyway. After an age looking I eventually bought a pop up tent - yes I know it’s not heavy enough to build a decent six pack or set of triceps but that’s what I tend to do sometimes. So the other thing on my list today was a blow up pillow for Jane. The idea is we throw the tent up on the beach and Jane & I relax in it while the kids play, the pillow for Jane was just the icing on the cake. From now until next Saturday I just need to find the knack of getting the popped up tent back into it’s carry case, I don’t want to be smug about it but I don’t want to look like an idiot either. The weights can wait at least until I’ve had time to scan the papers and ask all my friends what they have tucked away in the back of garages after all it’s probably at the top of the list of things people buy with good intentions then never get around to using them and who knows that may well happen to me as well so the cheaper the better!

In the post this morning came the appointment for the CT scan - next Friday so I’ll try and change that as it’s after my next clinic appointment and the whole point was to be able to discuss the results of the CT then, also came the date for Chemo  in another envelope, 3rd September at 8.00am for the all day infusion!

Mick came tonight to mow the lawn bless him, he was here until 7.00pm and still has two more lawns to mow before he can sit down for a beer. Finally to finish with food as I started with it, I intended to have some homemade soup my sister made for me but as I caught a whiff of Pizza, pepperoni with chilli I tried a slice and then another and then I was full so I have the soup for tomorrow and another tick on my list of foods to eat!

12.08.09

We had tea at Jane’s sisters in Burton yesterday and I managed a small plate of buffet and cheekily asked if there was pudding so I could leave some room, there was and it was a raspberry pavlova so yes I did leave room and managed to clean my plate.

Still no news on the date for the CT scan, I’m hoping to discuss the results of it next Thursday at Chemo Clinic before we go away the following week on holiday so if I haven’t heard tomorrow I’ll chase it up. Jane has been out for a spot of pampering this morning at POSH, a sort of Beauty Parlour in Bramcote, nothing less than she deserves and then later we have to endure a kids 8th birthday party at ‘Escape’ on the Ikea island if anyone knows it. It’s Ellie’s birthday, Helen’s Daughter, I don’t think Helen is gong so I’ll keep Andy company amongst all the mayhem.

I had a chat with the Macmillan Nurse this morning, we haven’t spoken in ages it seems but Jane & I (and my sister) had been wondering about background pain relief for me using something from the bottom of the pain ladder like Paracetamol, she concurred so I’ll start taking them later today in the hope that I can then miss out my afternoon hit of Oxynorm in the longer term then making it easier to wean off the opiates.

Weight is again stable this week at 10 stone dead on, I don’t think there is a great deal now keeping me from eating a ‘normal’ menu and I’ll certainly be enjoying some local delicacies from the north east coast when we’re up there!

10.08.09

This is part of a letter I received this morning cc’d to me from Mr Catton on it’s way to the GP surgery. It’s a sort of what’s happened and what is still to be done in a nutshell. I neither know nor care at this stage what the MAGIC protocol is and further to what I already know I won’t be googling any of the other big words in the letter.

I also had another of my now regular chats with Sara the dietician, she seems pleased with my progress and at the moment so am I, amongst the usual bits and bobs today I added a Greg’s Egg Custard and a cheeseburger without the bun to my list of ‘can eats’.

The medication seems to be working OK although still mid afternoon I have the need for a shot of Oxynorm, we had all been out shopping this morning though and even in the best of health I would have appreciated a dose of opiates on my return!

09.08.09

Well what a to do with the change in medication, caused a right pain, literally! Took the dose as prescribed on Friday night and just couldn’t get out of bed on Saturday morning then felt like crap all day spending most of it back in bed. My sister popped up early evening and we discussed what we could do, I’d read the little leaflets that come with these tablets and let me tell you - don’t bother it just sends you paranoid.

Anyway today was much better although the tablets don’t seem to have the staying power they claim to have and I end up taking a shot of Oxynorm mid afternoon, that is instant acting as opposed to the slow release Oxycontin.

Lunchtime was nice with my parents and Helen & Andy  as their kids were away with the in laws, it saved Helen the job of cooking dinner as she’s been feeling a bit crappy too.

Off into Notts on the morning to get Lydia a few things for school and have a nose around a few shops, we’re all going so Jane can keep an eye on me.

Alison Paul & Gee for heavens sake get round here for that coffee you keep threatening and tell us all your news.

07.08.09

Doctor’s appointment early this morning, she is well up on pain drugs especially nerve pain and there have been a few changes made.  I start taking Oxycontin in tablet form from tonight, two 10mg tablets morning and night and use the Oxynorm as required just to ‘top up’ the pain relief.

Then again at night take one 10mg Amitriptyline increasing by one tablet every three days to a maximum of ten tablets until I find the right dose for me. Eventually the Amitriptyline will take over as both relief for the nerve pain and help with sleep. We’ll see how it goes!

I’m glad the weather picked up as Miriam had her friend Jack round to play I went off to Lookers Honda as the boot lid wasn’t shutting correctly and Jane had a bit of a rest I think. At Lookers I hit the drinks counter for a yummy hot chocolate and pocketed two packets of shortbread and the boot was fixed in five minutes.

Oh yes, yesterday at our local shop I picked up a tin of rather macho baked beans, not seen them before but I’ll try them on some equally macho toast for lunch on day this week.

06.08.09

Waited patiently for the rain to stop yesterday then managed our walk through Shipley Park with Lynn, Darren two of their kids and Helen & her kids. It was pleasant enough and I had a can of coke at the cafe, first in years and just before we were swarmed by wasps it started to rain again so we all high tailed it home.

Not sure whether it was because of the walk but I slept in again this morning, as Jane came back from doing the weekly shop I was just having breakfast still in my pyjamas!

Back on familiar ground this afternoon at the Chemotherapy Clinic the appointment at 2.40pm. We arrived early and checked in at 2.00pm and I asked if a Nurse could look at my feed tube as one of the sutures has come away and although Jane has redressed it and kept it clean she reckoned it whiffed a bit last night and I did think it felt a bit hot. Anyway a Nurse did change the dressing and gave Jane some different dressings to use at home so hopefully it will be OK now.

It was relatively quiet in the waiting room and we got in to see Mr Madhusudan the Consultant Oncologist at 2.30pm. First thing we discussed was the histology but in a little more depth than on Monday with Mr Catton. Because the staging laproscopy had failed back in May because of the adhesions that were present in the abdomen this was the first time we’d heard tell of the size of the beast we were dealing with. On the TNM scale, widely used to describe these things it was T3N1, you can google it but basically it means the tumour was over 5cm in size and had affected lymph nodes, 5 out of 24 that were removed in fact but has not spread into other organs. The tissue removed had clear margins above which means no spread upwards but to the sides (around the circumference) and below there is evidence of spread through tissue so that’s why I need the Chemo to follow.

He also said he would discuss using Radiotherapy with one of his colleagues tomorrow at the MDT meeting so I guess at some point I’ll hear from Kathy vB on the outcome of that one. The Chemo regime as expected is as it was pre op, ECX this time with the tablets to swallow each day so I’ll get some practise in at that so I don’t have to endure breaking them up as I did before.

He’s booked me in for an urgent CT which just means it should get done within the next week or so and then I see him again in clinic on the 20th to discuss it and he’s arranged my start date for the Chemo to be just after we return from our week away. I feel my free time is slowly dwindling away so I’m going to try and make the most of it.

04.08.09

We saw the consultant last night, we got in just before 8pm. After exchanging pleasantries I think both Jane and I were brought  down to earth with a bit of a bump. We spoke for the first time about the histology of the removed tissue from the surgery on 4 Jun. Neither of us could remember the exact words he used but something like ‘could have been better’ or ‘not what we wanted’ would seem to fit. There are signs that cancerous cells are still present in lymph nodes and tissue that remains after surgery which need to be dealt with by Chemotherapy starting, well on a date that we decide after I’ve seen the Oncologist on Thursday this week. The first time around I treated Chemotherapy just as a necessary evil to reduce the size of the tumour and see me through to surgery. This time there will be no surgery after, well not planned at this stage anyway, I’m just relying on it to do it’s work and get me to a cure from this bastard of a disease. Suddenly ‘Chemo’ is a close friend although it is the same regime as pre op I’ll find it much tougher because I’m not the same person I was back in March, only 50% get through it without problems and / or a break. I know which camp I intend to fall into.

Other things that I had on my mind anyway to discuss were pain and eating, they suddenly became very much secondary but nonetheless important. I think I’ve got the eating thing under control now but in case I stumble under the pressure of Chemo and have problems keeping the weight up I will keep the NJ tube so I can fall back on overnight nutrition feeding if I need to.

I’ll also need the NJ tube for now to continue the opiate pain relief. The pain I’m having is due to nerve damage caused during surgery, the first time probably. It may disappear over night or I may have it for some time to come and after a few months it will be reviewed how to deal with it, there are lots of options but I don’t think going back to work taking the drugs I’m taking now is one of them, it just wouldn’t be “cool man”!

Other than that - phew! I felt much better yesterday, I took Lydia shopping and bought a new pair of jeans that actually fit me, size 30” waist and they actually made me look like something other than one on Fagin’s street urchins. We took time to pay our respects to Edwards 2 ward and dropped off the biggest tin of chocolate biscuits for them to share. I did have a favourite over my time in there but she wasn’t there last night - if she reads this - Margaret you’re the best!

Off to Derby tomorrow with Lydia then Thursday to see the Oncologist to make sure we get our week by the sea in before the Chemo starts. The folk from work, my boss and a lady from HR came this morning, there was nothing much that needs any action taking apart from a query about some paperwork I received from Payroll. I notice Jason is starting up the fantasy football again, I never take part so I can poke snide comments at all and sundry on a Monday morning and intend to do the same this season!

02.08.09

Weather much better today although I missed the best part of the morning because I nudged Jane’s hand as she was pouring out the sleeping draft last night, it was close on 11am before I surfaced and could only recollect waking once in the night for a cuppa, a wonderful nights kip but not recommended every night.

We managed to walk to my  parents’ house this afternoon, yes I know buy a new car and end up walking, it does look nice on the drive but that’s ridiculous! Miriam said she had hurty legs so Jane went back and fetched the car which I was very glad of as well. I did manage some Sunday lunch, roast lamb mashed potato cauliflower carrots and broccoli and it all went down well.

Start of a busy week tomorrow and as my appointment isn’t until 7.30 tomorrow evening next update will be on Tuesday.

01.08.09

I was just going to add yesterdays pearls of wisdom as Lydia returned from her day trip to Pirbright to see her cousin Jessica’s passing out parade. Jessica got a mention back on 01.04.09 as she was just going, wow that’s just flown by. She has some holiday then off to Birmingham Hospital to train as a Nurse. I doubt she’ll read this Barry but pass on our congratulations to her if I don’t get to see her soon, we are all very proud of her as I’m sure you must be.

We collected the new car yesterday, I say we because Jane had to drive as I’ve been feeling a bit crap for the last day or so, in more pain than I should be I reckon so I’ll clear it up with the big man on Monday. I note August was welcomed in with another day of rain, not had much fresh air in the last few days so I’ll have to put that right this week at every opportunity.

Food wise I’ve been doing better, I had a long talk with the dietician yesterday and she told me to stop the overnight feeding as from yesterday as she felt I was perhaps using it as a security blanket for not eating as I should during the day.  That’s a sure sign though that the feeding tube will come out very soon. She also made it quite clear that the objective for the next six months is to remain at the weight I am now which will be a big challenge in itself and only then think about trying to put on weight if I want or need to. I keep thinking of other things I could eat and dashing off to the shop, yesterday Jane’s parents brought round two huge filets of fresh cod which I cut into steaks and had the biggest one for my tea. I did manage to eat most of it, I did choose the biggest though for the first attempt and what I tend to do is not concentrate at the beginning of the meal and don’t chew it for long enough or hold the correct posture that I need to and end up struggling a bit. Anyway it nearly all went down and was lovely. Tonight’s feast is a glass of red wine from my birthday and a handful of cashew nuts while watching Casualty! I’ve not yet tried on the clothes I had for my birthday which really annoys Jane so while enjoying the wine and nuts I shall be wearing Paul Smith socks and a pair of O’Neil shorts and very little else as we’ve put the heating on - in August!!