sunday

Sunday morning and awaiting a visit from our great friends Marcus & Sarah.

Health-wise the only issue at the minute (swallowing notwithstanding) is the after effect of coming off morphine. A bit shaky and dithery a bit like having butterflies in your tummy. but all over. A bit uncomfortable and makes it difficult to sleep but not too bad.

Continuing with my swallowing exercises and looking forward to progressing the  vital stim link this week.

Lovely win for Stoke yesterday at Man.City, guaranteed to lift the spirits.

effortfful

Back from my speech therapist who has set me some exercises to do which represent the 'traditional' way to deal with my disphagia (loss of swallowing function). This is basically sipping and forced (effortfful)swallows x 5, which I have to do 5 times a day. 

it's hard work and I have to keep a written record to keep track of progress. Fingers crossed.

She was very excited that we are going to start the electro stim. Apparently there has been a government paper released recently supporting the treatment. 

This will not really help us in the short term but Bupa will hopefully cover our costs, and I will be like a pioneer of this treatment in this country. If it works why not?

Onwards and upwards.

check

CT scan - check

Mood good - check

Pain level nil - check

Contact made with consultant in Stafford - check

Blog updated - check

CT

Always a good distraction to see great friends and relatives. Thanks to Uncle Rick & Auntie Gill, Karl, Andrea, Steve & Lesley. for coming over this weekend.

Mood seems to be on the up again. Due to finish morphine next week as pain is now negligible. CT scan on Wednesday and visit to see speech therapist on Thursday. Hopefully the virtual stim people at Rowley Hall will be in touch this week so that we can sort out a first consultation. All positive.

scan

Visit with consultants Monday was ok. Base line MRI scan booked in. Throat still a little swollen around vocal chords which may, or may not account for swallowing problems. Given the ok to contact the speech therapist in Stafford to see whether the electro stim treatment offered is appropriate. My condition is so rare that you get the feeling that other than just waiting for things to improve on their own, there isn 't really a plan on place to sort me out. Hopefully the Stafford thing can help.

Had a nice four days in Wales with Keeley, the kids and mum in law Chris.

Great hotel and weather although I didn't get out much. Being away seems to exaggerate the problem of not being able to eat. Couldn't join everyone at dinner which was difficult but an enjoyable break anyway. 

blood

Succesful appointment with dietician this afternoon who suggested leaving out the calogen (which was making me sick) and to up the ensures to 6 a day to try and boost my energy levels.

Had bloods done in preparation for Monday's meeting with the consultants. Need to check my thyroid is working properly, if not this could effect energy aswell.

Talked through everything with Wendy and the psychologist. Very positive and reassuring. Hopefully we can get a date for the baseline scan to see how the original problem is progressing, and then talk through the options for sorting my swallowing out.

update

Feel like I might be starting to come out on the other side again. Had a couple of consecutive good days and feeling much brighter. 

Will be at hospital on Thursday to see the fantastic Wendy and also a clinical psychologist who may or may not have some suggestions as to how to move forward.

Friday we will see the speach therapist who did my swallowing x-Ray last week, hopefully she will be able to outline what our options are. Them on to Monday when we will see Dr.Jamill our oncholigist and Dr.Uppal the ENT consultant. We should then get a date for a scan to check that the cancer is gone. We can then concentrate on getting the swallowing thing sorted out.

nightie

my mood and state of mind continue to go up and down like a bride's nightie. Bad day today following a good day yesterday. No logic or rationale to it, just the way it is. The fact that I haven't even considered going to Stoke tonight will put things in perspective for those who know me well.

Things should start to level out in a couple of weeks which is frustrating but something to look forward to. 

If I go out of radio contact you will understand why.

whom

a good day. a quiet day. Karl & Chris sorting out the garden, me maintaining a watching brief from inside. No ill effects to report from downsizing the morphine patches. Just tired as usual, but we can do something about that.

ebb

At a low ebb today my spirits have been lifted no end by an email from Kath. whom ai used to work with at Staffs.

Suffice to say that I now feel totally reassured that I am doing the right thing regarding the way forward.

Thanks Kath.

I am also eternally grateful to Sarah P. for her daily pep talks by text. I am blessed to have fantastic family and friends.

happy

a succesful visit to the docs yesterday. Will begin to decrease morphine tomorrow. Also spoke about my ability, or lack of it, to cope with the mental side of my recovery. I've really been struggling so   I have started taking something that will help. We shall see..

Keeley in her usual proactive, tenacious  way has been 'investigating' my throat and lack of swallowing situation. We shall obviously have to see what our specialist recommends , but there is treatment available, albeit, not on the 

NHS, which has good results. Unbelievably, it is available in only one place in the country, Rowley Hall in Stafford! Maybe too good to be true but again, we will wait and see.

party

great day in the buzzoom of my extended family over in Mount Sorrell to celebrate (again) bro-in-law Karl's 50th birthday.

Marvellous.

Visit to doc this morning to pick up prescription for lower dose morphine patches. This is hopefully the start of the process which will see me coming off the patches all together in a few weeks. Progress.

sis

quiet day with sis, Molly, Poppy & kids. Great to catch up with old mate Lisa too.

Trying to paint as positive a picture as possible to everyone but still struggling. Will be glad to get to the next appointment a week on Monday and get some idea as to what our options are.