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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.