Dark Side of the Moon

Week 7

Radiotherapy 35/35

Chemotherapy 2/2

Weight 10st 8 lb holding

Throat do I have one? It hurts secretions and drinking rules my life.

If week 6 was hard, week 7 was harder.

But we made it !

Me ringing the bell and bringing Venezia home, to see the mask out if the confines of the radiotherapy room is quite scary. John hoping to scare the locals over Halloween by putting lights in it, same at Christmas.

Today was a long day for the first time all the machines were down the fan cooling system went offline, so a 2 hour wait. Cant complain as it was the first breakdown we had been involved in. It was very emotional saying goodbye to what in reality had become in the last 7 weeks a micro extension of our family our lifelines in reality. Although everyone has said ring if we need anything and we are back in Tuesday to see Dr Sen.

Weight being managed by the feeding tube as too sore in the throat to eat even soggy cereals till taking sips of water or water and honey. John now giving me co codomol via the feeding tube so he is now part is the 0300-0500 wake up call, sorry.

So now we enter the dark phase and in the words of Commander Jim Lovell, spoken so well by Tom Hanks in the film Apollo 13, Houston we have a problem! I will as the headline says liken myself to being sling shot round the dark side of the moon to return hopefully to the good side!

I will do my best to resist the dark side and Darth Vader, and return as the goody Mamma Mia girls !

Joking aside I know how critical these next few weeks will be.

Pain medication will be crucial will need sleep but have to balance it with liquid and food intake alongside oral mouth care regime.

Food dreams

Yes they’ve started anything from brown bread with crusts cut off with John west red salmon and cucumber on, I haven’t had one if those since childhood on a special Sunday!

Fish and chips from the chip shop laced with Sarsons vinegar and salt, again even when we were living in Whitby fish and chips were a rarely food of choice, never salt and vinegar for me. The thought of soda water and a cheese sandwich still haunts me I will get there in the end .

I am quite lucky as I still have some saliva and taste buds, fingers crossed they get better. Words can’t describe the feeling when I wake either in the night or after a nap and everything in my mouth is stuck together, it’s like taking a plaster off a sore but it’s your tongue ripping from the roof of your mouth, even typing the words hurts.

A typical day when hospital is 0830

Alarm goes off 0600 John has his breakfast and sorts the hospital bag out. I take anything between 30-45 mins to open my mouth and clean the secretions blood and gunk out. Try and drink a 2 kal fresubin drink, most days I fail, they are too thick and cloying.

Leave 0700-0710 join the mad commute to Leeds, the joys of the M62, M1 and M621 are not a journey I would wish to take on a daily basis.

Arrive at St James 0815 park the car and arrive at Radiotherapy check in proceed to treatment area 2, hopefully machines are working and get called in. The procedure is swift if no scan less than 8 minutes or 3 tracks of a Queen song.

Return journey usually less than 45 minutes, then once home start the oral cleaning and hook up for first feed of the day. I take approximately 2 hours feed then need to nap, so unhook and sleep for 2 hours. Then once I am awake slowly peel tongue from roof of mouth and clean again, John gives me my pain medication every 6 hours and water through the feeding tube, This continues up until bedtime then once in bed sleep 2 hours if i am lucky. When I wake and clean the mouth yet again, take ora morph as too soon to take full medication, next time I am awake it is usually 0300 so pain medication and back to bed for hopefully an hour before the day starts again. The plus point will be no more early starts so will get more sleep.

In the words of Arnie I will be back !

I won’t be updating the blog weekly unless there’s a major development, Feel sure you don’t need to know every minor breakthrough. But I will update and thank you to each and everyone of you that has read my rants and ramblings. If in writing this blog I have helped anyone in a small way that’s good, but the main reason I have done it is I have found it has given me a slight amount of control over what is in fact a situation totally beyond my control.

Thank you, tesekkur ederim, muchos gracias, merci

5 thoughts on “Dark Side of the Moon

  1. So glad you made it Hazel , but with your grit, steely determination and new found knowledge I had no doubts that you would. I believe also you will get through this next stage due to the same reasons and knowing what lies ahead and what is required of you to try and keep on top of the situation. Will shop, make soup, do jobs, bring flowers and sit with you when required I will do ANYTHING!!! Take care and stay strong. Much love and hugs 🤗❤️🤗💕xxxx

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  2. Well done you and John and your family and friends. Without those we are nothing. You have the time now and do it all at your own pace – no rushing. Will see you soon xxx

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  3. Hazel,
    Regarding the tongue-stuck-on-roof-of-mouth problem, what options were available to keep the one sticking from the other? I’m serious when I ask if you could put a piece of cling wrap, or wax paper, or parchment paper between the two when you lay down to sleep. Any ointments that helped?

    Thanks,
    -Ken

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    1. Hi Ken
      Nope nothing you can do apart from what ever you do don’t yawn but to be honest you soon learn to stifle a yawn. St that stage I was making more saliva mouth was quite moist when I went to sketch hut parotid gland in night must have started to slow down u can’t believe what having little or no saliva dies until you’ve experienced it. It’s the little things that we take fir granted but you soon learn skyways have water to hand gently sip to break the seal of your lips then trickle water in. I am so good at it now I can almost do it asleep Xyimelts do help but st the beginning I had too much saliva when I went to bed and ending up foaming at the mouth like a rabid dog. Now I pop 1/2 of one in most nights as saliva still limited and no more tongue sticking. Like I say imagine your worst hangover mouth that’s what I get most days but u learn to adapt. Nine if your suggestions would be feasible fir fear if choking I assure u plus the sensitivity of your inside if mouth no way.
      My bedtime routine was brush with my toothbrush on my 6 th cursor pox over 5000 bristles so gentle use sn interdental stick to pride anything out I may have tried to eat. Mouth wash biotene prior to above saline rinse then biotene gel rub in to gums apply lots of lip balm no paraffin for fear of it combustion especially during radiotherapy lip balm becomes 3 Nd nature I used hurts bees. Last feed of day then tablets. Bed slept maybe 3/4 hours then do all of above again. We lived a 80 mjn or so drive away uo st 0530 fir a 0830 appointment but it becomes routine.
      There is s tablet for xerostomia dry mouth think it’s salpiodine or similar but has more side effects excess sweating being one of them thst the treatment we are going through it’s the last thing anyone wants it’s for people born with no saliva glands not h n c patients who in most cases face it as a temporaryside effect hope that makes sense
      H

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