mum

quiet day with mum and the kids. Feel fine. A bit stressed about the whole swallowing, epiglotis thing but will just have to deal with it until we know more.

Continuing with lymphodema neck exercises.

clinic

had an appointment at the lymphodema clinic for some treatment on my neck, back again in 4 weeks and maintaining a set serues of exercises to see if it makes any difference.

My mouth is extremely dry obviously due to not being able to drink but alleviated by regular rinse and good old fashioned spit. 

My tongue is very nearly healed which is great. Makes it doubly frustrating that I can't begin to eat. 

Hey ho, progress of sorts.

my lymphodema exercise collar is quite a fashion statement

back

missed a day. Where did that go? We travelled home yesterday so it was a long day, that's my excuse.

Visited orthodontist this morning to pick up my protective gum shield which will stop me constantly biting my poorly tongue when I'm asleep.

This afternoon had X-rays to try and work out my swallowing problem. It turns out my epiglotis isn't functioning properly and I have now had to go to nil by mouth. This is mainly to make sure I don't pick up a chest infection by too much liquid going down my wind pipe. This may be the price I have to pay for getting rid of the cancer. Hope not but the speech therapist will send a report to the ent doctor and we will meet him to discuss options.

Sunday

another day off. Very well ta very much.

off

no blog today. too hot. sorry. I'm fine by the way.

frog

croaky as an old frog today so talking down to a bear minimum, much to the relief etc etc.

If I'm honest it's too hot to do anything today. I find that I can walk on the flat absolutely fine but introduce some gradient, like the path to the beach, and I 'm knackered. So at the house all day until wondering in to Padstow for tea (not me obviously) later.

Anyway I haven't been totally unproductive, I've hung some washing out, listened to some Smiths and lounged for a England! Where's that in the Commonwealth Games by the way?

surf

another beautiful day here in Cornwall. Jamie Oliver's for lunch, or in my case, watching people eat lunch! Hey ho, my time will come.

Mouth seems to be improving a tiny bit every day, really dry and uncomfortable, but it is discomfort rather than pain.

Still no joy with the swallowing but on Bob the lollipop man's advice, I am going to try some jelly & ice cream this afternoon and force it down. He thinks it's psychological. Will report results later.

beach

a quiet day in scorching Kernow, for me anyhow. Everyone on the beach in wet suits and having a rare old time. Bit hot for me so I retired to the house at mid day and relaxed. Slept to recover some z's that I missed out on last night due to faulty smoke alarm beeping.

BBQ

a long day but feeling fine. Just got to control myself whilst everyone has a barbecue. Not fair !:0 )

UHNS

great visit to hospital this morning, all positive. First to the Lymphodema clinic to try & resolve and improve the swelling in my neck. Some exercises whilst wearing a special collar and some oscillating therapy should make a big improvement.

Next to Mr Uppal who shoved a camera down my hooter to have a good look at my throat. He reported no concerns other than some swelling around my vocal chords which may explain to some extent my inability to swallow and soreness if I talk too much. This is all good news. Hopefully when I see him in a  month we can schedule the scan which will give us a more definite idea of how things are progressing.

Then to get measured up for a gum shield which will hopefully prevent a lot of the trouble I am getting with my tongue, which is caused by me accidentally biting it in my sleep.

Whoosh! That's your lot for today. Time for a nap.

away

big day yesterday with a house full to celebrate mum & Keeley 's birthday last Thursday and Ksrl's 50th next week. Unfortunately for your hero I felt so overwhelmed by the whole thing that I had to take to my bed and missed the whole thing.

There is something going on here with the fact that the better I feel physically, the harder I am finding it to deal with the mental side of it. Not sure what bug we will sort it.

Appointment with oncholigist tomoz which will hopefully put my mind at rest. Then off to Cornwall on Tuesday where a change of scenery will do me a world of good. Thanks to mum for house-sitting while we are away.

50

bit of a wierd day today. Will elaborate tomoz.

birthday

good but quiet day today. Keeley, with help from our great friend Simon has fixed the box to the top of the car which will help us to accommodate all of the extra stuff (food supplements, mouth washes, tablets etc etc)we need to take with us to Cornwall.

Seem to be tired all the time at the min but today my gob hole is as good as it's been in weeks, hopefully a sign of things to come.

Kids last day at school, so off to fetch them, and then celebrate Keeley's birthday. Hurrah!

spirit

no blog yesterday because I had a bit of a fall again. Bashed my leg which is restricting my walking, but not too bad. Same as last time I passed out because of standing up too quickly and ended up on the hard! wooden floor in the lounge. Ouch.

Back from appointment at hospital now where, as usual, Wendy has reassured us all is well. Blood tests from a couple of weeks ago show everything back to normal, in fact some things better than ever. Just need to fix my bloody tongue.

Seeing consultant on Monday followed by an appointment at the lymphodema clinic where hopefully they can progress some treatments which will help my swallowing. Here's hoping.

Quick note to say that Grace has come back from school with the Spirit of St.Wulstans Award, which is presented to the pupil who best represents the values and beliefs of the school, through there behaviour, work and attitude. Couldn't be more proud.

off

day off today.

mass

bit of an emotional school  leavers mass at church this morning. Gracie did a reading and spoke very well. All of the tiny little dots in church reminded me of when Archie & Grace were in year 1 and tiny little dots themselves. We've all had a great 10 years at St.Wulstans and will miss it greatly.

Bit of a disturbed night's sleep. Waking up with a really dry mouth on the hour every hour. We've shelled out £100 on a new mouth wash which isn't available on prescription, but which has good results against my mouth nasties. Fingers crossed for some quick results.

Layers homies 

walk

blimey, talk about up and down. Woke up feeling up to a walk to school and back, then to the doctors. No problem. Got home and within half an hour was in bed until 3 feeling cold and generally a bit off. Very frustrating. Would like a few consecutive good days before we go to Cornwall next week. All the packing, organising, driving etc is going to fall on Keeley and I would like to be well enough to at least lend a hand . We'll see.

Started some new medicine this morning which will hopefully clear up the mucusitis , also got a repeat prescription for the stuff which clears oral thrush which has reared it's ugly head again.

Anley

no complaints today other than the usual.Mustn't grumble. Trip up Hanley this morning. No change there apart from demise of Gap.

Will report back tomorrow loyal friends.

hurrah

sun shining, mum visiting, pain minimal. Fingers crossed for a great day. Would be nice to celebrate with a glass of pop and a packet of crisps but, one step at a time Marshall, one step at a time.

Here's a lovely pic of my daughter after I picked her up on Friday.

tour

good day today. Another whirl of cricket, Tour de France & sleep. Doesn't sound so bad does it? Keeley is at home working on some work stuff so her presence lifts my mood too.

school

not a bad day today.New morphine patch last night so a bit dopey but ok.

Hopefully up for going to meet Grace's new teacher at High School in September later this evening.

For the brave amongst you here is a picture of my poorly tongue. The mucusitis is the yellowy blob on the side and is the main source of discomfort. Thinking positively, this pretty much covered my whole tonge 5 or 6 weeks ago!

brazil

another two steps back day today I'm afraid. Really sick last night which really ripped my throat to shreds. Mouth feels like it did 2 weeks ago. On top of that my tongue is not improving and my inability to swallow anything but the tiniest drop of water is leaving my mouth feeling awful.

Not as awful as a Brazilian defender or Chris Froome but awful nonetheless.

Hopefully things will pick up tomoz.

Onwards and upwards amigos.

food

an early appointment at hospital to see the orthodontist. Teeth are super so that's a positive. A lot of people lose teeth, or have to have them removed as a side effect of the radiotherapy, so feeling good about that.

Had enough energy to go to Sainsbury's with Keeley , although I admit I sat in the caf while she did the business. After doing the weekly and twice weekly shop here for ever it was the first time I had set foot in the shop for 5 months. Small pleasures.

Frustrated that mouth, other tha teeth, is not improving. Desperate to get it better and at least begin to think about eating real food. It's been 3 months since I've been able to regularly eat anything. The novelty of emptying a syringe into a pipe in your tummy wears off very quickly.

Eating is a simple pleasure and one which we take totally for granted when we are well. It is also a social thing which we do together, whether it's sitting round the table to eat or going out for a meal. We haven't been able to do this since march. Part of what spurs me on to getting better is the prospect of having a cheese sarnie, sitting down with Keeley, Archie. & Grace and eating a spag Bol that I have made and going out with them all and ordering a big, dirty burger.

As I said before, simple pleasures that we take for granted.

sports day

ok day. Highlighted by Grace's sports day. Second in the relay, third in the 75m. Not bad. Bit sad as this was our last Sports day at St.Wulstans after 10 years.

Had a haircut this afternoon. Well, more of a blending of the bits on my head where the hair has returned ie. the top, with the bits where it hasn't ie. the back.

lazy sunday

feeling a bit bob shite today but mood will improve later when we visit nieces and squeek and dave.

here you go

le grande departe

Really sore throat , croaky and no voice today but drugged up to the eyeballs so no problem.

Keeley has popped out to do the shopping but has left me with my supplies.

Meanwhile, I am left to my own devices. C'est Le Grande Departe aujourd'hui n'est pas? Welcome to Yorkshire.

wedding

I've been asleep for most of today Not sure why. Has a busy day yesterday so probably catching up.

Fantastic to see our great friend Sarah yesterday. Caught up with news from college and life in general ( should say that this next bit isn't directed at you Sarah!)

Sad to be missing Polly & Russel's wedding this weekend. I think I could have coped with the journey but the talking/interaction side if things is still a real effort, and painful, aswell as the constant taking of medicine and food supplements through my tube, which isn 't very wedding friendly. 

Because on the outside I am looking 100 % better, people assume that I am, and I'm not. As a result they naturally want to talk and find out what's going on without realising that the actual act of talking about it is setting me back a bit. It's difficult, so the compromise is to keep a low profile until my throat and tongue are much stronger.

Anyway, Polly & Russel, have a fantastic day and we will catch up soon.

one swallow

really good meeting with speech therapist who recommended a few exercises for my mouth throat. Also referred me for an X-ray to check on my swallowing, or lack of it. Dietician happy with my weight although I will have to up fluids through feeding tube to compensate for reduction orally.

Sore throat and tongue but generally good.

milk shake

a successful visit to endoscopy to be fitted with a new feeding tube. This is a much better one. Only two ports and much more robust than the original one. Hopefully this will be the last one I ever need.

Received a lovely food parcel from Pete & Lou in South Wales (thanks guys), more flavoured milk shake straws which I will put in my stash to drink in the next few weeks (water only at the min).

Nothing else to report at the min. Back to see the speech therapist, neutritionist and ent nurse tomorrow. We will see what Thursday brings.

tuesday

lovely day and a lovely visit from mum. Strength taken from the sentiment in my weekly card from the fantastic Jacky & Angie. Love you guys, sorry the pics a bit blurred.

Looking forward trepidatiously to having my feeding tube replaced with a newer model tomorrow.