Weight Monday 10st 6lb (by Friday 10st 10lb) with help from Michelin.
Throat 5/10 the secretions!!!!
Oh dear that was the weekend from hell, poor John no matter what he did it was wrong, 9 variations of egg and not one was to my exacting standards! Boiled too runny, too hard, fried too crispy on edges baked overdone scrambled too rubbery I could go on. At the same time I couldn’t drink anything unless it was at a temperature only I could decide upon! So no we didn’t murder each other or get divorced but was a close run thing!
Things weren’t going as we’d hoped on the food and drink front, so-bearing in mind that Dr Sen believes in patient driven head and neck cancer care, we took the only sensible decision over the weekend that the feeding tube was our only option. So enter stage right Sophie the specialist dietician.
It was decided that I would have the feeding tube fitted that morning and training be given for the next 2/3 days, John was the appointed first aider, as in his previous working life he was a qualified first aider.
So the next stage began we were shown into a small private ward called RASCAL unit along with Alicia and Rosie my 2 nurses. The procedure began, to say childbirth was hard this rates up there with it but swallow swallow swallow and Michelin was introduced up my nose and into my tummy.
The next 3 days followed a similar routine up radiotherapy then into rascal room saline drip via cannula, my veins are taking a battering. The feed for up to 6 hours slowly increasing the flow rate. At least now I can concentrate on getting liquid into me and eat what I can when I can, it’s a huge weight lifted off our shoulders.
By Wednesday we, well John has the routine off pat and we are given our own rucksack pump and feed. We even managed hair cuts when we got home probably the most normal thing we’ve done in the last 5 weeks.
On a plus point my hair now seems to have stopped falling out, I seem to have only lost hair on the radiation line.
Although I have lotions and creamed my neck religiously due to my fair skin and freckles radiation burns were always a strong possibility. For the past week I have been using hospital burns dressings but today it became a reality.
So with 2 more weeks of radiotherapy to go it’s going to be tough, every time the mask goes on the dressing has to come off, the feeding tube manoeuvred through the mouth and cling film placed over the burns. then it’s radiotherapy and all then done in reverse.
Always knew it wasn’t going to be easy but will get there in the end. As I have every intention of surviving !
On leaving hospital on Friday bumped into My Sweet Talking Guy Dr Sen who was just leaving the hospital restaurant he came over gave us both a hug and we had a 10 minute chat about normal weekend life which was a great pick me up,he radiates positivity.
Sleeping seems to be my main activity with each day the naps getting longer.
Week 6 lets see what that brings
With a little help from our friends.
As this event is now taking over our lives and this of our close family and friends, I would just like to say thank you to everyone reading the blog and thinking about us. If I forget anyone sorry it’s not intentional.
John without his unswerving love and loyalty I couldn’t get through this.
Nicola, Mel, James ,Dan, Liam, Meg, Faye, Lucy, Kaine, Delilah, Penelope just by being there you brighten our days, life goes on, live for today and smell the roses, spend the money as we do and will continue to do so.
Sue ,Dave, Paul, Mark, Jenny, Joel and Dalton glad you’ve had a fabulous holiday and will see you soon.
Lynn and Graham I really need your secret to a good tan !!! Lyndsay, Sean,Tom, Natalie and Oliver your messages mean a lot.
Johns cousin Pauline and her husband Neil, always there when needed for a moan.
Lynn, her family and uncle Eddie from York and our Spanish trips your chats with Nik the vic mean more than you will ever know. Our friendship will continue and we will ride the canals and watch “The free birds fly ”
Jason and Michelle from Harrogate will miss our regular 0830 moans at St James but Jason you are a week in front of me so expect all the news good and bad! Keep in touch.
To our friends Paula, Adrian, Gabby, Pat, Nigel, Pauline and Mike all our wonderful neighbours thank you for being our friends, plus apologies to anyone I’ve missed out.
Julie, Lisa, Karen and all at Kennedy’s promise will meet up soon! Plus thank you to the sisters (Julie nTerry).
Our new found rare tonsil cancer suffers, Nikki and Paul in Hampshire, Nikki I feel for you there hasn’t been a day we haven’t messaged even though you are constantly vomiting hang in there we will do it.
Emma and Paul our new buddies in the Isle of Wight 2 years into remission and living life to the full, your messages inspire us daily. Even though Paul like our brother in law is a Baggie supporter we won’t hold it against you!! 7-1 yesterday! promotion beckons.
Not forgetting Gamma Ray Gary you are my inspiration for this blog, yours inspired and helped me, so I hope I can do likewise for someone else. I apologise if I have used some of your blog analogies , Mo and Annette Elaine and Roger from cancer U.K. forum.
My new best friends are a soft tooth brush with 5640 bristles it’s bliss, the humidifier I sleep with and the nebuliser .
Food wise well I can’t eat anything sweet, sour, hot or cold, lukewarm is bearable and if I ever see another egg think I will cry.
I miss chocolate but if that’s the price I have to pay so be it.