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.
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