Good Morning Elona (Though it could be good afternoon, good evening or good night depnding o when you're reading this)

Put the kettle on this is a long one lol.

The house is lovely, we're very lucky.  Its a small terraced miners cottage, 12" thick stone walls, with views both front and back of the montains. We were actually looking for 3 and 4 bed homes at the time. This is a 2 bed that needed everything doing to it, but there was just something about it.  I don't think it had had anything done to it since the 60's.  Although lock down afforded us the luxury of time to get a lot done, it didn't help us with energy and finance.  

We like to reuse as much as possible so for instance the bricks from a masive oversized fireplace were used to build retaining walls and a potting table in the garden.  The main bedroom had old freestanding furniture which, for the price of a few extra bits of timber, a pot of paint and  some new door handles off of eBay, we managed to turn into smart modern fitted wardrobes.  I think the total cost for that project was around £60 and a lot of swearing lol.

Swedish meatballs are much tastier and, probably more importantly right now, much softer than mince meatballs.  We generally have them with roast veg and cook them in the oven with the veg.  Most supermarkets do them.  Our favourite are from Lidl as they are fridge ones, whereas most of the others are frozen.  They're also very nice with home made chips and Southern Style gravy....  Mmmm feeling hungry now.

I can't eat noodles or pasta either, crazy as you would think that they would be one of the easy foods to eat.

It was my wifes 50th yesterday, pre lock down and the big C we had had so many plans for it.  But good ole British 'make the best out of a bad situation' it actully turned out quite a good day, certainly one she wont forget.   Something mad I did learn though was that I can no longer blow up balloons!  I may have mentioned that one of the unexpected issues my cancer has caused is the flap in the roof of the mouth that closes to stop liquid, food etc going up the back of the nose has stopped working (hopefully after treatment it will work again).  Because it doesnt close, when I tried to blow a balloon up the air just escaped via the back of my nose making a crazy whistling sound on the way.  Which my eldest found hilarious.  I am so glad that we can all still laugh in the face of this.  I would hate it any other way.

With regard to tatse (and smell) mine was quite the opposite...  They improved.   I don't know though if this was due to the tonsilectomy or the removal of teeth.  Unbeknown to me, or my regular dentist, one of my teeth was quite poorly, so the removal of that could have had something to do with it.  Bare in mind any sugery and/or mouth/throat/nose infections can change your taste buds.  And it can take weeks for it to sort itself out.  Taste is also linked to smell and mood, hopefully yours will be back to full working order soon.  I have been warned that after radiotherapy my taste might change forever.

I have the throat exercises for you.  You may not need them now and hopefully you wont need them in the future, but better to have and not need that need and not have...

SPEECH and LANGUAGE THERAPY TREATMENT PROGRAMME

GENERAL IMPORTANT ADVICE

THE BEST EXERCISE FOR SWALLOWING IS SWALLOWING.

MAKE EACH SWALLOW COUNT

WHEN SWALLOWING FOOD FLUID OR SALIVA ACTIVELY PUSH YOUR

TONGUE AND YOUR THROAT MUSCLES TO WORK REALLY HARD

(IMAGINE YOU ARE SWALLOWING A GOLF BALL)

KEEP YOUR MOUTH AS CLEAN AS POSSIBLE

These exercises are designed to increase the strength and range of

movement of your jaw, back of your throat/tongue and voice box .

The aim is to keep your swallow working during your treatment. Your

Speech Therapist will advise which of the following are best for you.

Please prac!ce them at least twice daily before your treatment starts

and increase to at least 3 times daily during the treatment.

EXERCISES.

1. Jaw

Open your jaw as wide as possible. Hold for 30secs and then close.

Move the jaw as far to the right as possible (without it hurtng).

Hold this for 30secs and relax.

Repeat but moving the jaw to the left.

Make circular movements with your jaw (stretching but not

hurtng).

Repeat 5 Times, res!ng between circles.

2.  Tongue

Stick your tongue out as far as possible and hold for a count of 5.

Pull your tounge back in as far as you can and hold for a count of 5.

Repeat 10 times.

3. Tongue

Stick you tongue out and move from side to side, touching each corner of your lips.

Repeat 10 times.

4.  Mendlesohn Manoeuver

When you swallow, use your throat muscles to hold your swallow high at its peak to keep your voice box up.  Keep this postition as long as you can before finishing the swallow.

Repeat 5 times.

5.  Masako Exercise

Stick your tongue out and hold it between your teeth or your fingers and swallow hard.

Repeat this 5 times.

I would advise not to do this in public lol.  They are surprisingly harder than you think, especially the last two.

The blog,  its working title is Neck Cancer - My Journey.  It's web address once published would be neckcancer-myjourney.com  I can't decide if this is a good address and title.  Although I am the author of the blog I want it to include over time others journeys.  I did think Tonsil Cancer - Our Journey, but I didn't know it was tonsil cancer at the beginning and I don't want it to be just about my tonsil cancer.  So then I though Neck Cancer - Our Journey, but then i thought 'Our' is too broad. HELP!!!!

At the moment I have set it up so the home page is my blog.  Then there are other pages which will be Other Peoples Journeys', 'Useful Links', a 'Forum' so visitors can chat amoungst themselves.  Future ideas are a self help page, recipe ideas page and a page for people with health anxiety.  The reason for the last one is that I have notice on Cancer Chat that it does tend to get bogged down with people, generally 20 somethings, with health anxiety which is an illness in itself.  I want them to have somewhere to go with useful links to help them.  But more than anything I want the blog to give people hope, because hope is everything.

All I can say about my new meds is WOW!  No wonder they come under controlled drugs.  My body did take a hit when I swapped from my old meds (which I had been taking for three years), but I think its calmed down now.

Onwards and upwards

Al'

Hi Al

well that was cetainly a long reply lol but your a good writer and it was interesting. love chatty notes. 

your house sounds imense. The garden is what interested me in this bungalow. it did have the 'thing' about it though and i offered on the spot much to the amusement of everyone involved. the hubby was not quite so impressed but he does not like challenges like me and certainly would not do any D I Y. It took him ages to get the fitness to move around alright and become independednt - he had relied on carers before because we had had a terrace and he could not move around due to steps everywhere. Now he had to cope for himself. I knew he could do it but he did swear at me once or twice! now i think he is grateful. The back garden had been separated into two by an old gate and all you could see were head high nettles and brambles it took me 6 months to clear it but i saw a secret garden there - now it is a vegetable patch and home to my hens. 

happy birthday to your wife I am glad she had a day to remember. It is so important for people like her to have those special moments. I remember when hubby lost his leg i ended up nearly loosing it because everything revolved around him - the changing of the house, the appointments etc it was hard for that short itme. 50 is a great age the start of a new chapter in life. Hubby turned 60 end of last year being lockdown we could not do anything so when we can we will have some friends over. 

thanks for those exercises - tried lol hilarious the last one - my brain was trying to work out how to swallow lol took a while before i could manage it hehehe. 

i cant move jaw to the right as much as to the left so that is a good exercise and i cannot hold the swallow so useful cheers .

next time we go out we will look for those swedish meatballs and give them a go. 

I think the title is great but you mention that hope is everything so  - neck cancer - my future prospects ? journey is great but doesnt give the impression you want. 

future hopes when you have neck cancer

neck cancer prospects

journey through neck cancer

never give up hope - neck cancer

few ideas if you are unsure. 

Love the idea of the pages and yes you are spot on with the youngsters and their anxieties. They do seem to worry a lot. I sometimes think they almost want it to be cancer? that sounds strange but its how it can come across. i think it is because some people dont say great could be an infection when you comment that 9 out of 10 are not cancer they seem to ignore that point - perhaps i am an old cynic! 

the pages on recipes sounds brilliant i think a page of food substances really important to get out there because without the normal ice cream the rest was trial and error so this would be really useful. Your swedish meatballs could top the list ! 

After my tonsilectomyt I did have a few episodes of a breeze going down my throat that was strange but i am back to being congested again. Interesting about your taste not surprised if you had a bad tooth. Has your gums healed up yet? 

glad you are on the wow meds. I have cocodamols - codeine/paracetamol or tramadol, tramadol works nicely but affects me a bit and does not last long enough so on top dose of codeine. yours must be morphine based? they would be good! another important thing for you to be pain free. 

nice day today little rain so spent some time outside sorting out the hen house and trying to catch Sir Reginald Perrin the ex racing pigeon! so named due to his change in life after flying back from France and breaking his wing. Several slips later in the mud and feeling totally exhausted i managed to stop his runa round and catch the little so and so with the hens and get them into their new home. iam hoping this means i get a good nights sleep. hubby is still betting I will be up at 4 bets on ... 

carry on laughing 

Elona 

Hi

lovely cauliflower cheese today hime made yummy, am beginning to miss my spices though. Tried some sweet chilli sauce the other day and it did not agree was gutted. 

hubby has his covid jab booked next week, when i saw a held telephone number i hoped it would be the consultant. i then got a bit peeeved that the only way hubby could get covid is if i broiught it home so as his care, key worker, health issues why was i not offered one hmm something not quite right. I then thought well maybe a good idea at moment with getting tired and congested couldnt cope with mild dose. 

managed to put up a bit of wallpaper today - my one job a day - the good thing is it can take me all day and that does not matter at moment so was quite chuffed. (only a small wall) and nice and easy paste the wall instead of paper. a tropical forest design with ovelots, parrots and toucans quite groovy on one wall. the other walls will be a calico colour. 

i lost my bet !! was up at 4am on the dot! 

take care 

Hi Elona

Thank you very much for your thoughts for tomorrow, it means a lot :happy:

Whilst waiting for this page to load, took me three attempts to find cancer chat today.  Loading page was all about donations, so I clicked on the home page and no sign of the cancer chat link.  I then clicked on the Cancer UK logo, and hey presto!  Here I am.

Anyway where was I?  Ah yes, whilst waiting for chat to load I was thinking how to start my reply to you...  I know I will be a gentleman and ask how the devil you are, but alas you have already answered this today.  Now you have thrown me and I have to think of something else :laugh:

I am so glad that you managed to get a better nights sleep, sleep is so important.  It's not simply for how long, but more importantly the quality of the sleep.  It does make it so much harder when not only suffering pain and discomfort, but at this time it is difficult to stop your mind whiring away.

Its wonderful that you are getting some sun over there in the East, the sunshine simply makes life Oh so much brighter, its healthy too.  We're in our rainy season at the moment, really looking forward to the sun making an appearance so we can get out into the garden.  We didn't get much time to enjoy it last year as by the time we had finished it the summer was all but over.  Lisa's already purchased some lights to go out there when the weather turns.   We're very luck too as we live in a protected dark skies area so on clear summer nights we get amazing views of the Milky Way and meteor showers and the like.

Our thread was mentioned by one of the moderators to a newly diagnosed person on chat.  I will go over and invite them as I expect they have looked at out thread but they may feel that they can not join in as we have been going for some time now.

I took your advice on the title for the blog.  I have renamed it Neck Cancer Journeys.   I've been channeling my depleting energy at that.  Its all ready to go live, but I messed up a bit.  It costs £8.50 a month to publish with many benefits such as web address, anylitics etc, a couple of days after opening my account with the provider I was offerd £4.50 a month, but I had to take the offer within 24 hours.  I wasn't 100% sure at the time and I hate feeling pressured so I decided that I would rather the £8.50 a month and be sure...  Hope you're keeping up with this...  Anyway I wanted to pay monthly, which I found turns out to be £11.00 a month which also does not include any of the benefits, on top of that I would still have to pay for a web address.  Ahhhrg!  So now I have to find £102 for the annual subscription (£8.50pm) if I want to go live now.  Although I really wanted to go live pre treatment I have decided to hold out for another £4.50 offer from the provider, which they are sure to do it's just a matter of when.  Nothing is ever easy is it.

Thinking that when I add a few more parts to it, especially the forum I will need a hand running it if you are up for that.  I can add you as an administrator.  Have a think.

I love the sound of your wallpaper.  I keep looking for a feature wall where we could have something like that.  You must be so happy with your bathroom kitchen.  I have no idea why I thought it was your bathroom the other day.  To be fair some days I forget my own name :laugh:

I really think that you should be getting the jab, though as you said it may not be the best time with your body fighting so much at the moment.  Unpaid carers should be somewhere near the top of the list.  It just sounds mad in my head that they're not.

Here's hoping that the sun keeps shinning and that your sleep keeps improving.  Ready to fight the good fight.

Right time to try and eat a roast with my remaining teeth :laugh:

Stay strong

Al

Hi AL

I would be honoured to be an administrator if you are happy. Do you want contributions to monthly? you can personally email me and i can set up DD. 

Sounds like you have been working hard on it. Fantastic work but dont over do it. 

Enjoy those roast veggies. we had borsch. very good proper russian recipe. Came from a holiday hubby and i loved and a place we would go back too if it was at all possible. 

love the fact you have protected skies so can see everything that goes on above our heads - must be amazing with a glass of wine on a clear night. 

sleep well

Hi Elona.

12 Hours Earlier...  Well chemo bag is packed, tablet loaded with a couple of films and games (downloaded incase of poor WiFi) and fully charged.  Spare reading glasses, headphones, fruit pastels, meds, tissues and a bit of cash.  My radiochemo suit is washed,  aired and ready to wear...  Whats a radiochemo suit? I hear you ask.  A nice new comfy tracksuit with no metal in it, comfy for the 6hrs of chemo, no metal zips etc so I can keep my dignity through radiotherapy :laugh:

Alarm set for 6am so I can leave at 7:20 and be on the ward by 8:30am.

Present Time...  It's 10am and I am sat in a big comfy chair having the first part of my chemo which involves a kidney flush for an hour.  The flush is administered via a drip which is attached to a cannula in my hand.  I have had a plethora of pills which include anti sickness and ones to make me wee... cos I need that.  I have to ask to go to the loo, not done that since infants, as although the machine is mobile it is plugged into the mains. 

Even though I left home at 7:20am I didn't arrive until 9am!  10 miles of zero to 10mph on the duel carriageway.   Fortunately my nurse and many others here were caught in the same jam. So I don't feel so bad now.  I will update on the progress. 

Thank you for accepting to help administrate the blog,  it will be a big help.   And thank you very much for your offer to help with the costs,  for now I will decline.  I have plans to make it self sufficient over time.   As soon as I work out how to add you I will.   

Right really need a wee...

Well my first visit to the facilities was a mission, got myself into a right jumble with all the tubes and wires :laugh:

I have been promoted though, I can now unplug myself without the need for assistance....

Another vist to the facilities,  the kidney flush is definitely working :laugh:

Flush is finished.  They have swapped the bag for the actual chemo, cisplatin (not sure of the spelling)... This bit lasts for two hours, so headphones in and film on.

Al

... watched around 20 mins of my first film when my nurse came around with a chemo card.  I have to carry it 24/7 in case of emergency. Back to film... 5 mins later nurse is back with home meds.  Back to film... few mins later tea lady arrives,  I opt for coffee and biscuits.   Back to film.... not 5 minutes later sandwich trolley turns up, I go for chicken mayo.  

Just put my headphones in....  Gotta weeeeeee!

Hopefully that's it now and l can finish my film.

How's your day going?

Al