This chapter is primarily to thank our other half’s who suffer in mostly silence on our trip with cancer. As the first line of the above song title goes Can’t live if living is without you; John my hubby of 40 years next week I know this has hurt you as much as me and all the other half’s and families out there. We know you are fed up of us saying my mouth hurts, my teeth aren’t clean and no I can’t possibly swallow that tiny morsel of meat, but hey give me a sticky toffee pudding with ice cream. What do you mean I can’t have custard as well! Then 2 days later when you come back from yet another trip to supermarket with a bag full of sticky toffee puddings we say can’t eat those they set my teeth off ! We realise it’s frustrating when one minute we can eat something then the next day not a chance. Like John says it’s an expensive cancer to get! Food wise, I seem to waste a lot more than I ever did. A good tip is think back to food of our childhood, cheap cuts of meat cooked long and slow, so for now forget curry’s and chilli, if you are having rice make it as a pudding otherwise it’s difficult to swallow.
Likewise family and friends, we totally understand that you don’t understand how we feel and no matter how many times we try to explain waking up after your worst ever hangover with a mouth like the bottom if a budgies cage that’s how we feel all the time mouth wise.
The other common theme is the delicate matter of kissing! Yes it’s awkward to bring up but I feel it needs addressing. Cuddles hugs and other things are fine but the delicate or passionate act of kissing just doesn’t happen. Don’t get me wrong, I fully appreciate Johns position. If roles were reversed I would feel the same. When you think where it all started my tonsil and the brutal treatment I went through in my mouth and to be honest I am still having side effects, so would I want to kiss it no.We laugh and talk about it plus I have been in touch with others who are going through treatment or like me in recovery and we all say the same. So if you are reading my blog either as the patient or family member and you’ve been wondering are you alone in this, nope it’s a common thread. I am sure things will get back to normal but it’s a thing that I felt needed addressing however trivial it may seem.
Radiation tiredness could have a chapter all in its own ! Yet again it’s hard to explain. It’s like a wave, one second you are fine the next wham it’s like being hit in the face by a barn door. In my case a 20 minute nap usually sorts me out. Please don’t get me wrong I realise How lucky I am I have kicked cancers butt, stared it in the face and won unlike many I know who aren’t as lucky as me I have already lost too many friends and family to this horrible illness.
Now I am 9 month post radiotherapy which equates in time to a full term pregnancy and almost a year since the Cancer diagnosis was finally confirmed. What a lot has happened since then. I am living my life and I would say I’m about 90% back to pre-cancer levels, better than most people I’ve come across but not as good as a few. We are all different that’s a common theme you will come across.
Last night we watched Parky being interviewed by Piers Morgan and when he was asked how did you feel when the Dr uttered those words you’ve got cancer, in my case Squamous cancer cells in the lymph node, in that split second it’s either do or die I decided immediately it wasn’t going to beat me. Parky was born less than 4 miles from me and Geoffrey Boycott was born in the next village. Both are outspoken tough Yorkshire folk, both diagnosed with cancer took the same attitude as me,it wasn’t going to beat them. Sir Geoffrey had the same as me and Sir Michael prostrate cancer and both have beaten it. We breed em tough in our part of world !
Update on me, just returned from a fab week in Wales with John,daughter Nicola, son in law Mel and grandson James. We had a cottage up in the mountains. The weather wasn’t the best but we got out every day walking visiting Ospreys and looking at the area in general. I started with a cold the first proper one since treatment finished. A word of warning, it does take a toll on your general health, normally I could shake a cold off in a few days, now 10 days later it’s still there. I have to admit that my immune system is definitely suppressed so booking a trip to local GP because I want to get my thyroid checked. I don’t think there’s anything wrong but up to 50% of head and neck cancer patients eventually end up on thyroxine so I want to get into the system for regular checks, maybe they should be offered as a matter of routine, think that’s a question for my next meeting with Dr Sen.
What’s coming up next. Regular visits to ENT will continue, quick trip to Spain planned only 2 weeks this time.
Family and friends bbq next weekend to celebrate our ruby wedding and to say thank you to everyone who has been there for us. Sorry to Sue and Dave who are away but will send you photos. We have asked for no gifts because we are doing a charity raffle to try and raise funds for Leeds St James Head and Neck cancer department.
Then the big one Charity bike ride on World Head and Neck cancer day 27th July 40 miles.
I have a Just giving page set up. I would like to thank you to those followers who have already supported me and if anyone wants to contribute Please see the links below. Head and Neck cancer is one of the forgotten cancers so any help is always appreciated.
Or search Hazel^s Tour de Wakefield.
While ever people are reading my blogs I will continue to update, since conception I’ve had over 6700 views which is incredible for a little lass from Yorkshire .
This is a link to a guy in B.C Canada who has just been diagnosed worth a read for a different perspective