fin

So it's time. Time to put this blog to bed. I have written about 10 draughts and binned them. The reality is that I am neither eloquent or brainy enough to put into words all of the stuff I am thinking, but here goes.

On being voted out of whatever saturday night tv show is your poison of choice, the crest-fallen participants invariably talk about the'amazing journey'(©.S.Cowell)they have been on. Well, having just read through this blog from start to finish, to misquote a line from Crocodile Dundee, 'that's not a journey, this is a journey!'

I had genuinely forgotten most of the stuff we have been through since last December, when I first went to the doctor with a lump in my neck. This amnesia is obviously part of the recovery process.

What stands out for me is how lucky I have been. Firstly, and above everything else, for having the most fantastic wife and children in the world. They have had to endure some horrible stuff and have given me all the strength I needed to come out on the other side. We are now making up for lost time and enjoying each other's company and the simple pleasures in life; going on holiday, a Byron burger, messing about, just watching rubbish telly together. It's fantastic.

It goes without saying, but I will say it anyway, my mum, sister, mum-in-law, brothers in law, uncles, aunt and cousins have been there at my side all the way. I love you all.

My friends and followers on this blog have been constant sources of encouragement for which I am very grateful. 

My good fortune goes right back to the very beginning last December, when I first went to the doctor. Maybe because he was a young doctor who, rather than fob me off with anti-biotics, sent me for blood tests, then when the results came back negative insisted on sending me to e.n.t. for a scan, just to be sure. I genuinely think that if the lump had been anywhere but my neck I would have ignored it, but because dad's non-hodgkins lymphoma started with a lump in his neck, I followed it up. As I said, lucky.

I have spoken many times about our good fortune in being so close to UHNS, where the facilities and staff (if not the car parking) are second to none. The prospect of having to travel miles every day for appointments, treatment or scans would have made the whole experience much harder to deal with both emotionally and logistically. The staff in the cancer unit, radiotherapy and e.n.t. have been, without exception, fantastic. I have to mention Wendy Robson our e.n.t. nurse, she has been with us from the very start like a guardian angel, and her support has been unbelievable.

I could go on and on. I was lucky enough to be 'well' enough to start and finish my radiotherapy on time. Lucky enough to live 20 minutes up the road from the only person in the country who offered me a treatment which allowed me to eat again (thank you Sumathi). Lucky enough to be able to afford the treatment. Lucky enough to have a GP and consultants who were open minded enough to refer me for the vital stim treatment. Lucky enough to meet some of the other amazing people who have benefited from vital stim.

Unbelievably this blog has had 27,000 hits since I started it! I know mum's been on it a few times but that is truly amazing and humbling. I hope that anyone going through something similar will be able to see that there is a way out at the other end and that no matter how bad things get, with the right attitude and support it is possible to make a positive out of such a negative.

A couple of weeks ago Keeley said that she would be glad to see the back of this year and I knew exactly what she meant, but I had to disagree. I now feel, in spite of the horrible stuff we have had to endure this year, that we are in a much better place. I appreciate my friends and family and what we have so much more. I feel much more positive about everything and feel I have a good perspective on what is important in life, and I am reminded of it every day.

This picture says it all.

salon

I toyed with the idea of keeping the girly curls but it just wasn't happening. My hair was in various places: curly, thin, thick and fluffy. Not a good look so I had a good chop at Salon Keeley. She didn't offer me anything for the weekend unfortunately.

hols

I'm still working on my summary, so in the meantime here is an ace picture of me and my wonderful family in Cornwall last week.

curls

pI have a bad case of what I believe is called the chemo curls. My hair is growing back curly on top, thin at the back and sides. It's time to start again so I'm off to the barbers for what my grandad used to call a tuppeny all off. Results tomorrow.

I'm also having a sort through my unused drug stash today. Might be some time.

chords

visit to consultant today for the old camera down the nose throat inspection. All fine, vocal chords a lot less swollen than last time. Back again in 6 weeks, then expecting it to be maybe a 6 month break before the next appointment. A sure sign that things are going well.

Saw the lovely Wendy our ENT nurse and had a chance to talk and thank her for her incredible support this year. She told us that this ( meeting the patients well on the road to recovery ) was the best bit of the job. Makes you realise that these fantastic people have to deal with stories like mine every day. Incredible. An inspiration to all of us.

apology

my post 'profound' on the 25th oct came  out all wrong. From the start this whole thing has been like a stream of consciousness that I have just poured out without thinking too much about the consequence of what I am saying, relying on the fact that it was the truth as I saw it to get me through.

This has worked fine until the 'profound' post where I'm afraid my lack of eloquence let me down. I could easily delete it but feel it is important to leave everything on here as a record of the last 9 months, warts and all.

In trying to put into words my changing feelings I think I came over as dismissing everything and belittling the whole struggle against cancer, just because I have beaten it. I am accutely aware that for many people, some of whom may read the blog, the struggle is far from over.

I apologise for the flippant tone of the post and encourage you to keep the faith and join me next week when I will be formally concluding the blog .

Ta dudes and dudettes

onion ring

Rick stein sure makes a fine onion ring

pasty

forget walking on the moon and splitting the atom, in the history of human achievement I pissed on them. For today, dear friends, I ate a pasty. Thank you.

profound

Actor Timothy Spall said on telly last night that after he was diagnosed with leukaemia a few years ago he found it easy to be profound. Now that he is fully recovered he can't be arsed!

I identify totally with this sentiment.

In my darkest hours profundities dripped from my virtual pen like honey from a bee (?) Now I am well on the road to recovery all that tree hugging nonsense that I blogged, quite genuinely, a couple of months ago, seems like a load of old tosh. This is is a sure sign that I am back to my 50 year old righteous and grumpy self. Hurrah!

With this in mind I have decided that after my 6 weekly visit to my consultant a week on Monday, I will draw a veil over this blog and hopefully come up with a few conclusions and try and force some final profoundness out.

Watch this space blogettes.*

*see the post'apology', for a follow up to this post.

card

Keeley's aunties, Jacky & Angie, have sent me a card pretty much every week this year. Small gestures like this are a consistent reminder to me of how lucky I am to have such fantastic family around me. This is today's card.

Alongside the support from my family I have received amazing support from friends and even total strangers. My great friend Sarah has constantly supported me through my ups and downs and her positivity  has been such a big help. I also received a message this morning from a friend of Karl's, Jeannie, who I have never even met, but who had followed my blog. Her words were so thoughtful and kind and put a big smile on my face.

A few words, a card, a phone call, a text, 

simple gestures that mean a great deal.

bath

this morning I had a proper deep bath, without Keeley having to help me in and out, for the first time since February! Glorious. I should say that I have showered in the meantime, but not without having to tape over my feeding tube. Simple pleasures.

plea

watched the stand up to Cancer show on telly last night. Brought home how lucky we have been. There is always someone worse off is a bit of a throw away comment, but I have seen first hand this year that, no matter how bad things were for me, when you see kids suffering and succumbing to the terrible disease, I have been very, very fortunate.

From what I have learned, and what was said last night, the thing standing between us and a cure for all cancers is time and money. With this in mind I think we all owe it to ourselves to give a few quid to Macmillan or Cancer Research and do our bit.

I have first hand evidence that this works. When dad passed away 22 years ago from non Hodgkins Lymphoma, it was untreatable. Now, thanks to stem cell treatment funded and developed thanks to Cancer Research, the condition is eminently treatable.

I started giving £10 a month to Cancer Research back then which in the big picture is absolutely nothing and a small enough amount for me not to 

miss it. I've certainly had my money's worth out of it this year. Whether it's through guilt, grief or the kindness of our hearts, a couple of quid a month is nothing to most of us but added together could make such a big difference.

cancerresearchuk.org

list

as a demonstration of how positive I am that all of the bad stuff is now behind us, I am going to wind this blog up over the next few days. Hopefully this will help to make a full stop on the last few months and a good starting point for the next chapter.

Here we go then. This year has been a series of firsts and landmarks for me. Here are a few:

• I have been bald

• I spent a night (11 of them) in hospital 

• I had a tonsil out

• I had 76 injections

• I wrote a blog

• I cried a lot

• I didn't eat anything for 4 months

• I realised how lucky I am to have a fantastic wife, fantastic children, fantastic family and fantastic friends

• I was depressed

• I had an operation (3) 

• I had a feeding tube

• I watched a lot of telly

• I missed the school run for the first time in 10 years

• I went in an ambulance

• I was treated in a&e

• I feinted a few times

• I had chemotherapy

• I had 18 blood tests

• I had 30 radiotherapy sessions in 44 days

• I wore jogging bottoms in public

• I didn't do much (any) work

• I missed consecutive Stoke home games for the first time since 1979

• I wore slippers

more soon.

bath?

the hole in my tummy is now pretty much healed up. Bit early to go swimming or have a bath yet but we're not far off.

Eating continues to improve. Went to our favourite burger place (Byrons) in Manchester yesterday and enjoyed the veggie option ( a mushroom smothered in goats cheese) without the bun, some courgette fries and onion rings. Yum yum. Bread is still difficult but most other things are now fine. I continue to have small portions, and the main thing holding me back now is my lack of saliva. This should return to normal in time.

When they told us at the beginning of the treatment that it could be 18 months to 2 years before I'm back to normal we didn't really take it in. 5 months post treatment and 9 months since we started we are still a comparatively short time into the recovery process.we started

gone

it's gone.And what's more I did it myself. The feeding tube co-ordinator from the hospital rang and suggested it was so simple that I could take it out myself. So with her talking me through it on the phone I did it.

Bloody ace. Just can't have a drink for 4 hours or I'll leak.

tube

visit to dietician today which went very well and then very badly. I was expecting that, if I had maintained my weight since the last appointment, which I had, that I could have my feeding tube out. No go.

She was delighted with my progress in the last month ( I haven't used the tube for 4 weeks) but wasn't able to organise the removal without a referral to the right person, which could take a month.

It won't be a month because I am now going to use my insider knowledge of how these things work (built up over the last 9 months) to bypass the protocol and get it sorted, hopefully in the next week or so. We shall see.

elevenses

mid morning snack of champions. Ensure super high calorie drink (banana flavour, 400 calories), and a chocolate eclair. Only recommended, if like me, you are trying to pile on the pounds with a view to having your feeding tube removed next week.

tea

fish on Friday. Went down a treat.

stir fry

saw Lynn my speech therapist yesterday at UHNS. Delighted by my progress and doesn't need to see me again. Marvellous.

Swallowing and eating is going fine. Bread, and as I discovered yesterday, the good old doughnut, is still a problem. As long as everything is fairly moist I can eat it, albeit not too much. 

Had a stir fry last night with Keeley, Chris & the kids and it went down pretty well. Bit of a sore throat afterwards. This is probably due to the 'newness' of the skin in my throat which is sensitive to the seasoning in the food, and is also being effected by the coughing that I have to employ to regularly clear my throat.

Progress in the last month has been remarkable, but we are still only a short 4 months past the end of my treatment, so my throat, taste buds, saliva glands, tongue and neck are still traumatised by the radiotherapy and it will probably be a good few months yet until things return properly to normal.

footer

had a really good day yesterday. went in to college in the afternoon and it was great to catch up with . Sarah, Fiona, Mike, Collette and Sue. All being well I will be back doing a bit of computer magic after Christmas. I was a bit nervous before going in for the first time since December, but it was a real tonic to see everyone.

Follow this with another match at the Brit and 3 points it was an enjoyable but tiring   day.

We have made a conscious decision that between now and Christmas I am just going to concentrate on getting properly back on my feet and healthy. Everything else, work-wise, money-wise can wait until I'm properly better.

Next Wednesday is hopefully the day that I will have my ball & chain (feeding tube) removed. This will depend on my weight having gone up in the last couple of weeks. To make sure this happens I will be stuffing whatever I can down my neck in the next 8 days. Fingers crossed.

prawn

prawn korma o'clock

time check

it's banana o'clock

banana

things are progressing nicely. I'm able to eat pretty much anything, albeit that it needs to be slathered in some sort of sauce or be really moist. Had some Ritz crackers with tomato and mozerella  for dinner. lovely. I can't manage much but I will build this up. for example last week I couldn't manage more than a couple of bites of a banana, yesterday I ate 2 whole bananas. Little and often and lots of chewing is the mantra.

ordinary

trip to doctors, ironed some school shirts, ate a sandwich (no crusts), school run, made shepherds pie for tea. and relax. absolutely knackered, but happy.

    the school run

ultimate

last session today, it's now up to me to keep pushing myself, trying new things and strengthening my tongue and my swallow through exercise.

had a bite of a mcChicken sandwich which tasted good but really difficult to get down, a couple of fries with the same result. the vanilla shake went down a treat.

cake, lettuce & marmite sandwich, melon all went down a treat. we had a hug, arranged for Sumathi to visit us at home and said our goodbyes . we will remain friends for life.

here are a couple of pics from the last session.

party

just under 3 weeks ago we had to postpone my 50th birthday party indefinitely. How do you celebrate without eating and drinking? 

Today we celebrated both my and Archie's birthdays with our fantastic family ( minus the much missed Christine who was at work ). Words can't describe how elated we all feel at what has happened in such a short space of time. We have got our lives back. My face is aching from literally smiling all day.

Here is everyone, with apologies to Karl and Alan for cutting them off in their prime, and a fantastic one of me and my beautiful son & daughter.

nacho

penultimate

last treatment coming up on Monday. Aim is to eat a couple of chips, a sandwich and a biscuit. We'll see. My progress has been amazing but I'm very aware that after Monday it's going to be up to me to keep pushing on and hopefully return to eating normally in the future.

I'm currently eating 5 or 6 times a day, little and often. Today is the first day I haven't had an ensure. Might have one later if my calorie count is low but hopefully not. Ate a dorito and some home made salsa, and a bowl of rice krispies during the session this morning. Food has to be moist or it's a real struggle to get it down, but compared to where we were a fortnight ago it's fantastic.

Only down side now is my lack of energy. The muscles in my legs have pretty much wasted away and will take a long time to build back up. Anything like emptying the dishwasher or ironing completely puffs me out. It will be a while til I'm fully back but it's all gravy from this point on.

Here is our guardian angel, Sumathi, who will remain a friend for life. She has helped to turn our lives around.

wowzers

wow. met some inspirational people today. all disphagia sufferers but with very different stories to me. A 12 year old girl, a lady who had fallen down stairs and damaged her brain, a man who had a heart attack whilst driving his car. All different but shared my desperate experience of not being able to eat and drink. All had been pretty much abandoned by the NHS and all had by shear persistence found our guardian angel, Sumathi Sinnapan and her Vital Stim treatment.

We all gave 5 minute talks on our experiences and gave glowing references. about both Sumathi and the treatment to the audience of NHS professionals, Stafford MP Steven Lefroy, the mayor and various others.

Everyone ( mum, Keeley, Sumathi ) was in tears while I talked which I took as a positive sign. 

I just hope that I have played a tiny part in getting this treatment more widely available and known to the nearly 3 million people in this country who suffer from swallowing problems, and given them hope that there is something out there that can make things better.

speech

It is impossible to put into words my gratitude to my friends, family and blog followers for your support over the last few months.

I also have nothing but praise for the staff at the UHNS especially Wendy Robson in ENT who has been our guardian angel throughout.

I am very lucky to have such wonderful friends and family.

I am also very lucky to have found, and be able to afford the Vital Stim treatment which has made such a difference over the last couple of weeks.

With this in mind we are going to be doing as much as possible to promote the treatment with the ultimate goal of making it available to everyone on the NHS. As rare a condition as it is, the non-ability to eat and drink shouldn't be something that a priveliged few can afford to have put right. 

I am living proof that this simple and relatively cheap treatment can work and make a massive difference to the wellbeing and way of life of both patients and their families.

The treatment is being launched in Stafford tomorrow and I am going to talk for 5 minutes about the amazing results we have seen in the last 2 weeks, this will hopefully be the start of the widespread acceptance that it needs.

I will let you know how we get on.

hurrah

What a day. Archie's birthday, saw consultant and had the all clear, weight is up and swallowing good, feeding tube out in 3 weeks. Hurrah!

I will thank everyone personally later but if I can use this blog to put on record my complete and utter amazement at the support and love that I have received over the last 9 months. It had been truly inspirational and has more than helped us through this tough year. It means a lot folks.

Thanks to Keeley's colleagues and some great mates of mine at WWRD for their marvellous photo.

trainers

Big day tomorrow. Seeing ent and oncology consultants to get results of my last scan. Feeling confident that we will have positive news and that we can move on with our lives.

Beginning to get back to normal and do what I would have used to consider mundane things, like going to the supermarket, the school run, emptying the dishwasher and the ultimate thrill (!) of going to the football. Just getting back a bit of independence and relieving the burden from those around me is a fantastic feeling.

This morning I have even had the duster out and done the 'high level' stuff which has been out of Keeley's reach. Bless her she's only wee isn't she.

The new dawn has also seen me crack open a pair of trainers that I bought about 12 months ago, that have remained unworn. My old pair will become my wet weather trainers and I will begin the search for a fresh pair to become my reserves, ready to introduce when these new ones lose their lustre.

match

I've had a relapse! Not the result we were expecting. Great to catch up with Paul, Dave, Phil, Scorch, Clive & Matt.

Oh well, mash, parsley sauce & a nice bit of cod for tea. Lovely.

fridge

I have my own section in the fridge. 

#livingthedream

hatch

More positivity and progress today. Ready Brek devoured and everything going down the hatch. I haven't used my peg (feeding tube) since yesterday morning.

Absolutely knackered but happy.

nana

great to have both mum & Keeley with me at my treatment for moral support. More progress made. Half a cup of hot chocolate, some puréed carrot 

and half a BANANA!

Got home and cooked the kids tea for the first time in months. It is allowing me to smell and face up to food without feeling alienated by it. Just brilliant.

Further positive news provided by my great mate Paul who has agreed to chaperone me to the match on Saturday. Can't wait, it will be my first time at the Brit since we beat Man Utd in January. 

talk

more treatment, more soup. The prospect of porridge, custard and rice pud. It's all gravy as they say.

I have been asked to attend and speak at   a conference being held next week to promote the treatment, which will hopefully bring it some publicity, and move it a step closer to being available on the NHS. Seems like the least I can do.

The first batch of treatment is going to cost us a bit over £3000, but the cost to the NHS of supplying me with my high calorie drinks to inject through my feeding tube is more than £7000! That is without factoring in delivery, time spent with doctors, nurses etc.

We are priveliged to have money squirrelled away to be able to afford this, but surely something that gives hope to people who can't enjoy one of life's great pleasures, eating, should be available to everyone.

Hopefully I can do my bit to make this happen. 

soup

another day another treatment. Puréed macaroni cheese, watermelon flavour ice chips, all down in one. Progress continues to be made. Tired out but elated.

Update - just had half a tin of Heinz tomato soup sat at the table with everyone eating tea. This is massive. I haven't been able to sit with the family for tea for about 5 months.

purée

First task of the day is to eat this.

Yes folks it's a bowl of ice chips. This is to encourage me to chew and swallow without the risk of it being anything other than water.

I have to do this 3 times today and 3 tomorrow with the bonus of being able to have a yoghurt too. Marvellous.

We've been to the shop to try and mix things up a bit and picked up some chocolate mousse and créme caramel along with some tinned spaghetti to blend up when I start on savoury next week. Keeley is also busy blending some leftovers. Small pleasures but sounds like nectar to me.

electrodes

Second session complete. Exhausted but very happy. The treatment consists of Miss Sinnapan attaching the electrodes on the appropriate bits of my face and neck.

She then sends a current through each one and adjusts the frequency whilst I swallow until she is satisfied that it will help, rather than hinder, the swallow. 

Once it is set I begin to chew and swallow ice chips (6 cubes worth). By the end of this(an hour) it was going from 3 or 4 swallows to 1 swallow, the same with the water and yoghurt.

All the time the importance of coughing to clear my throat and concentrating on the task in hand and not talking was emphasised as a safety measure. Without these precautions it is possible that I could take the water/yoghurt down the wrong way (aspirate), which could be very dangerous as my ability to deal with this has been compromised (ie the cough doesn't happen automatically) As long as I do this I will be safe and the natural functions will hopefully return the more of it that I do.

It is very intense. The best results are when you have consecutive treatments, so we are having 20 over the next 2 or 3 weeks. Wow. This is on top of the 1001 exercises I have to do to strengthen my jaw and tongue. 

Unfortunately because of the newness of this treatment, Keeley's Bupa coverage from work won't pay for it. This is a bit of a blow but, to be honest, right now I would pay £1000 for a cheese sarnie so it seems like money well spent.

We will continue with the ice chips and yoghurt over the weekend and see how we go on. We have also been instructed to purée some food to take with us on Monday with a view to trying it out. I fancy macaroni cheese. I will of course let you know.

Thanks to all for the good wishes, birthday greetings and expletives (Shirty). Makes an old man very happy.

yoghurt

what a day today was. Went to Stafford for our first consultation, expecting a bit of a talk and to decide if I am a suitable candidate for treatment. Came away having had my first treatment and having drunk a 500ml bottle of water and A WHOLE POT OF TOFFEE YOGHURT.

Unbelievably they were going down in one swallow by the end. Can't quite believe that I have eaten something for the first time in four months.

Second session tomorrow. I will try and explain what's going on afterwards, until then, here is a pic of me electroded up.

birthday

Big birthday today. Feel great. I have just posted this on Facebook.



A big thank you to all of my Facebook friends, cyber & otherwise for your birthday wishes. 
You will know that this, my 50th year, has been a bit of a bastard, but we are now beginning to come out on the other side.
My recovery has been slightly complicated by my losing my ability to swallow which means I haven't been able to eat & drink for a couple of months now, this obviously makes it a bit tricky to celebrate. Rest assured though, that when I am fixed we will have the sort of party not seen since
the hedonistic days of the Roman Empire, and you are all invited. As a great philosopher once said, 'You've got to fight, for your right, to partay'

progress

time for some home truths. If I needed reminding where. I've been and how far I've come all I needed to do was to have a look at this photo from a couple of months ago

and this one taken today

I think when you are in the middle of it that you blank out the bad bits and just concentrate on the present. I looked pretty poorly then didn't I but didn't really appreciate it at the time.

I seem to be through the morphine withdrawal, just need to catch up with some sleep. Thanks to Gill for her suggestions on the subject. My mind is now back to normal and feeling optimistic about the future.

I'm now well into the throat and swallowing exercise regime,, no improvement yet but early days. Will pick up referral letter for Stafford tomorrow so hopefully we can get over there for a consultation very soon.

Morning walk around the block completed and ready for the day. Hurrah.

trainspotting

it's been a bit like a scene from Trainspotting here this weekend. Stopped taking morphine on Friday so I've been 'coming down' ever since. A truly horrible experience. As I said yesterday it's a bit like having butterflies in your whole body which is manageable in the day but a nightmare at night. Makes it impossible to sleep for all of the shaking. On the sofa til 3 this morning watching old Alan Partridge episodes. Eventually exhausted, got to bed and had a couple of hours kip.

sunday

Sunday morning and awaiting a visit from our great friends Marcus & Sarah.

Health-wise the only issue at the minute (swallowing notwithstanding) is the after effect of coming off morphine. A bit shaky and dithery a bit like having butterflies in your tummy. but all over. A bit uncomfortable and makes it difficult to sleep but not too bad.

Continuing with my swallowing exercises and looking forward to progressing the  vital stim link this week.

Lovely win for Stoke yesterday at Man.City, guaranteed to lift the spirits.

effortfful

Back from my speech therapist who has set me some exercises to do which represent the 'traditional' way to deal with my disphagia (loss of swallowing function). This is basically sipping and forced (effortfful)swallows x 5, which I have to do 5 times a day. 

it's hard work and I have to keep a written record to keep track of progress. Fingers crossed.

She was very excited that we are going to start the electro stim. Apparently there has been a government paper released recently supporting the treatment. 

This will not really help us in the short term but Bupa will hopefully cover our costs, and I will be like a pioneer of this treatment in this country. If it works why not?

Onwards and upwards.

check

CT scan - check

Mood good - check

Pain level nil - check

Contact made with consultant in Stafford - check

Blog updated - check

CT

Always a good distraction to see great friends and relatives. Thanks to Uncle Rick & Auntie Gill, Karl, Andrea, Steve & Lesley. for coming over this weekend.

Mood seems to be on the up again. Due to finish morphine next week as pain is now negligible. CT scan on Wednesday and visit to see speech therapist on Thursday. Hopefully the virtual stim people at Rowley Hall will be in touch this week so that we can sort out a first consultation. All positive.

scan

Visit with consultants Monday was ok. Base line MRI scan booked in. Throat still a little swollen around vocal chords which may, or may not account for swallowing problems. Given the ok to contact the speech therapist in Stafford to see whether the electro stim treatment offered is appropriate. My condition is so rare that you get the feeling that other than just waiting for things to improve on their own, there isn 't really a plan on place to sort me out. Hopefully the Stafford thing can help.

Had a nice four days in Wales with Keeley, the kids and mum in law Chris.

Great hotel and weather although I didn't get out much. Being away seems to exaggerate the problem of not being able to eat. Couldn't join everyone at dinner which was difficult but an enjoyable break anyway. 

blood

Succesful appointment with dietician this afternoon who suggested leaving out the calogen (which was making me sick) and to up the ensures to 6 a day to try and boost my energy levels.

Had bloods done in preparation for Monday's meeting with the consultants. Need to check my thyroid is working properly, if not this could effect energy aswell.

Talked through everything with Wendy and the psychologist. Very positive and reassuring. Hopefully we can get a date for the baseline scan to see how the original problem is progressing, and then talk through the options for sorting my swallowing out.

update

Feel like I might be starting to come out on the other side again. Had a couple of consecutive good days and feeling much brighter. 

Will be at hospital on Thursday to see the fantastic Wendy and also a clinical psychologist who may or may not have some suggestions as to how to move forward.

Friday we will see the speach therapist who did my swallowing x-Ray last week, hopefully she will be able to outline what our options are. Them on to Monday when we will see Dr.Jamill our oncholigist and Dr.Uppal the ENT consultant. We should then get a date for a scan to check that the cancer is gone. We can then concentrate on getting the swallowing thing sorted out.

nightie

my mood and state of mind continue to go up and down like a bride's nightie. Bad day today following a good day yesterday. No logic or rationale to it, just the way it is. The fact that I haven't even considered going to Stoke tonight will put things in perspective for those who know me well.

Things should start to level out in a couple of weeks which is frustrating but something to look forward to. 

If I go out of radio contact you will understand why.

whom

a good day. a quiet day. Karl & Chris sorting out the garden, me maintaining a watching brief from inside. No ill effects to report from downsizing the morphine patches. Just tired as usual, but we can do something about that.

ebb

At a low ebb today my spirits have been lifted no end by an email from Kath. whom ai used to work with at Staffs.

Suffice to say that I now feel totally reassured that I am doing the right thing regarding the way forward.

Thanks Kath.

I am also eternally grateful to Sarah P. for her daily pep talks by text. I am blessed to have fantastic family and friends.

happy

a succesful visit to the docs yesterday. Will begin to decrease morphine tomorrow. Also spoke about my ability, or lack of it, to cope with the mental side of my recovery. I've really been struggling so   I have started taking something that will help. We shall see..

Keeley in her usual proactive, tenacious  way has been 'investigating' my throat and lack of swallowing situation. We shall obviously have to see what our specialist recommends , but there is treatment available, albeit, not on the 

NHS, which has good results. Unbelievably, it is available in only one place in the country, Rowley Hall in Stafford! Maybe too good to be true but again, we will wait and see.

party

great day in the buzzoom of my extended family over in Mount Sorrell to celebrate (again) bro-in-law Karl's 50th birthday.

Marvellous.

Visit to doc this morning to pick up prescription for lower dose morphine patches. This is hopefully the start of the process which will see me coming off the patches all together in a few weeks. Progress.

sis

quiet day with sis, Molly, Poppy & kids. Great to catch up with old mate Lisa too.

Trying to paint as positive a picture as possible to everyone but still struggling. Will be glad to get to the next appointment a week on Monday and get some idea as to what our options are.

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.

monday

excellent visit to the monthly ent clinic this morning. Dr's Uppal and Jamill shoved a camera up my hooter to inspect my throat and the back of my mouth. All was as expected. No explanation for my inability to swallow, only that it was normal and would hopefully sort itself out. Emphasis put on the fact that I'm only 6 weeks after treatment and that it is early days in the recovery which may take up to 12 months.

gerrards

thanks for all your kind messages folks, feeling a lot better today. Looking forward  to a visit from sis, brother-in-law and little nieces this afternoon.