The Final Countdown

Well it’s been 36 days since the last radiotherapy session and it’s been one long difficult period. As you can clearly see the burns bandages have certainly done their job!

There have been many high points, I have had pain that words can’t describe, there hasn’t been a minute during the night that I haven’t seen. But as the above says if I dare utter the words I’ve come round from the Dark Side of the Moon, dodged Darth Vada and rejoined the Mamma MIA gang.

I have no idea how many nerve endings there are in your mouth, suffice to say a lot and at some point each and every one of them has been kicking and screaming. I have experienced burning smells every time I’ve walked in a room , the cordite smell of fireworks and if John braked in the car the adrenaline rush of hot air in my mouth frightening. I was told all this is the nerves regenerating.

Now I can at last sip and swallow soda water bliss but no to cheese sandwich !!!! Week 8 brought about soda water along with chicken noodle soup strained .

In week 9 I had a new feeding tube fitted at St James, we have had a few problems with lines of communication and our surgery’s understanding of my needs, will leave it at that! Hopefully it is now resolved and when I am prescribed a food supplement it’s for a reason and that reason isn’t monetary it’s because of what I need on a dietary basis.

Week 9 also brought the return if Diet Coke to my lips but I have lost any taste for tea in any flavour also coffee and plain water is chalk

I have had 2 meetings with Dr Sen and next one is due in mid October at which I hope we both notice a difference.

I have also met my care team at Pinderfields Helen the Macmillan nurse Becky dietician and Nina the speech therapist.

26 September we said goodbye to the feeding tube it was running my life, I was taking all day to get 1000 calories in. Plus the previous day I was made to feel like a criminal. We went to the dentist and a lady who was old enough to know better made me feel like a dirty criminal. She stared and stared straight through me and made me feel uncomfortable to say the least. It was time for it to go and the onus now is on me to drink the revolting Ensure and Fresubin drinks and take all liquid and medication orally. On a plus side for John bless him he doesn’t have to get up at pit time 0500 to do the night time meds’ any more .

The team at Pinderfields can’t do enough for me they blend well with the care teams at St James. This week I developed the most horrendous yellow brown tongue and if possible more pain. Helen took a swab to see what would grow and at 1600 on Friday I received a phone call from her saying yes it was thrush. With it being the weekend it was decided better if we drive to Wakefield to collect the prescription rather than rely on the haphazard service from our doctors, I needed the relief immediately.

This week, 5 weeks after Radiotherapy finished I honestly thought I would be eating a little bit more and getting around but it’s going to be one long slow progress .

I have this week managed a shopping trip to a small shopping centre, called in Marks and Spencer’s food hall spent £30 on food I can’t eat, but at least John and James has a feast on Saturday night.

I am trying food daily eg last night but took 45 minutes to eat a third of a small Cumberland pie washing every mouthful down with soda water, 160 calories small amount but I did it. Sweet things are definitely a no no have tried rice pudding, custards and jelly,but no I scream as soon as sweet thing hits my mouth .

I have managed the inside of a dinky one bite size in a previous life pork pie, small achievement for some but huge to me. Cheese on toast minus the toast peel the cheese off once cooked and slowly nibble.

I am not quite back from the dark side but can see the horizon, and now I only wake up twice in the night.

Spain is beckoning for Johns birthday but it’s baby steps and each day I feel a little stronger.

Not much else to report, I can now slip into the size 10-12 jeans, I knew there was a reason for keeping them all, it’s just a cruel price to pay to get into them.

Dry mouth is a chapter on its own ! We don’t realise how much we take saliva for granted ,ok I may never be able to drink alcohol again no big loss in the scheme of things ,I haven’t had a serious drink for years.

On the other hand bread at the moment cements my jaws together ,now that’s serious I love bread in all shapes and forms .I bake bread I dream bread but early days yet and in this last week I have felt some changes both good and bad.

Current medication s

Co codomol 4 times a day

Ora morph 15 mils a day

Carbustatine for secretions it works !

Nystatin for thrush.

Ibuprofen for swelling

Gel Clair for ulcers yes still got the plus radiation burn now half way down my tongue.

Movicol enough said !

Then my solitary blood pressure tablet ,what a difference 3 months make that was all I ever took! Now I have sheets to complete so I know everything has been taken!

John has become a candidate for master chef in the kitchen ,my sense if smell is still there along with my sense of taste and the smells that are coming out if the kitchen are wonderful, Have already warned him cooking duties will be shared in future !

Will report back after I’ve seen Dr Sen next week if there is anything to report. In the meantime thank you for reading

8 thoughts on “The Final Countdown

  1. Wow Hazel that was a concise report and clearly depicts your highs and lows and your trials and tribulations. Dave and I have noticed a difference and we give thanks for the times we see the sister in law we love so much. But we know you still have a lot to master. We are keeping our fingers crossed that Spain s a reality for you both. Thinking of you lots and hoping you stay as strong as you have been. Amazing, inspirational and full of grit and determination. 🤗 ❤️Sue and Dave xxxx

    Liked by 1 person

  2. Having seen you today you are doing amazingly well which is credit to your attitude and to John and your family with support. Tortoise and Hard – you will get there xxx

    Liked by 1 person

  3. Hi

    Just come across your Blog, went thru the same last year. Started 35 Rads and 3 Chemos (2 in the end) 15th March 2019. I seemed to get thru it reasonably well physically, no painkillers other than a few paracetamol. Mentally it’s really taken its toll and still does…bad time at the moment blocked ears, dry mouth and throat…but heyho the suns out.

    I live in a small village near Skipton, so lucky for long walks.

    Anyway, thankyou for what you have put up…I felt and still quite alone in what I went thru, but reading your blog is just brilliant.

    Liked by 1 person

    1. Hi Phillip thank you fir kind words now am 20 month post radiotherapy and it does get better. This last 3 months saliva deffo improved don’t give up hope I am sat here eating s packet of plain crisis no water result. Yes as u know am a Yorkshire lass as well. Love Skipton lovely walking country. As anything u want if I can help will do. Were you treated at Leeds cancer centre ? hazel x

      Like

      1. Hi
        Yes treated at Leeds (who were brilliant), all started from St Luke’s in Bradford. I had to have 13 teeth out in 4 days so that was a slog. The last 2 months have and continue to be a struggle, jaw ,neck ache and my shoulders also. I’m eating well, putting weight on again, but the dryness in my mouth and what seems to be in my throat drives me mad and worries me terribly at the same time. I’m swallowing fine no restriction, just feels as though its hitting the sides all the way down and dragging at the same time. My ears have been blocked this last week or so, got a spray to try and relieve that.
        What gets me is the very smallest of ailments worries me terribly…never used to…before IT!!

        Phil

        Liked by 1 person

      2. Hi Phill all I’m an say is just look how far you’ve come since those dark days lying down in the bowls of st James .for dryness I use sugar free chewing gum orbital from any supermarket as long as xylitol is the main ingredient yiu will be fine ,what I do is break them I half chew one then park it between my gum n cheek until I need another chew if that helps. At night I still use 1 2 and xyimelt every night when I go to bed it slowly dissolves I now get at 8 hours a night .the xyimelt s I get online from the mouth ulcer company I find them invaluable .the aches are all down to tendons being radiated do youn still do your mouth exercises? Some days I still use a warm drink to help,dood fo down I still do at least twice a week .are you still under Bradford or have yiu been refereed to local e n t now. I was lucky my ears touch wood are ok Keep in touch Hazel x

        Like

      3. Hi

        Yes still under Bradford, i think the impact of having so many teeth out is now causing a few issues with my jaw on top of the Radiotherapy. Strange, but when i’m up on the moors with my dog I feel fantastic…makes me wonder if a lot of what is going on is mental state / anxiety !

        I was quite a big chap, 17 stone, ended up loosing 3 1/2 stone of it!! didnt eat a thing for nearly 15 weeks and as you say some things are just not enjoyable…Cheese, Nuts, Crisps, nice crusty bread.

        I found people were quite supportive as I was going thru it, but once I was back out there..it was as if nothing had ever happened in a lot of peoples eyes..they were saying isnt Phil looking well, and inside I felt like id been up Everest, and was only half way back down with only one boot on !

        Its nice to see your blogs and that your doing so much with your life, its the way to go…keep it up. x

        Liked by 1 person

      4. Hi Phil yescagree becsuse we have had the magic wirddvif a positive response to treatment people airbrush away the fact we are still living with side effects. You and I know one day we can eat something the next day we can’t. I know hubby used to get frustrated he’s out 2 stone on eating my leftovers. Some meats are still hard fir me casseroles etc as the fibres in that get too tight. But all not lost I can eat a packet of plain crisps now without water in 10 mins result and crusty baguette ok dipped in soup but some tunes I can have a few bites. Agree re walking on Moors I get same joy when on my bike you gradually will get better mouth and thrust wise. I am making so much progress in this last 3 months. Remember the Coronavirus will subconsciously effecting you. Keep in touch Hazel will be updating blog soon as we are in Spain heading home via eurotunnel in next 10 days. Over here lockdown means lockdown no bikes no exercise x

        Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s