Hi raz

entering treatment is a worrying time and when you get to the mask fitting, reality of the enormity of what you are dealing with starts to kick in.

however the road to treatment and recovery is beginning 

I wrote a blog all the way through my treatment (not sure if I have already sent it to you) but it gives you a week by week guide of what I went through along with a few tips and feelings.

although we might go through the same treatment process for like cancers, our journies are very individual and deviate slightly from one to another and because of this, what worked for me might not work for you.

for both you and your partner my advice is try anything and everything and don’t be too despondent when something works one day, but does not another ... get used to that

gammaraygary.wordpress.com/.../

let us know how you get on and ask anything at any time

vatch

Hi Vatch many thanks  for your kind  words know it’s an uphill struggle but will get there in the end .

i have read your blog and keep dipping into it , now that I have appointments starting next week. PET CT scan just to check on one of the lymoh nodes plus makes sure the cancer hasn’t started escaping .although I have ahe a mri and thorax chest ct in last 2 weeks. 

I dont know whether finding the  primary in my tonsil is a good thing as at least they have something to aim at . My consultant says he is aiming for me keeping a swallowing process sometime will tell 

I did have quinsies in 2003 not one but twice and still have nightmares about that !

so glad to hear you are on the road to recovery and I will contact for info.

i hope you don’t mind but I passed your blog onto the  radiotherapy teams leader yesterday using it as an inspiration to me 

Hi raz

please use my blog as you see fit .... if it helps anyone the smallest bit then it’s doing it’s job

there is also a nice blog in there about the radiotherapy angels.... they are a breed alone

Are you having a PEG fitted?

Vatch

Hi Vatch 

Re Radiation angels only contact so far  is call,to confirm my mask fitting. So me being me went straight into my previous control freak mode ,IPad pen etc etc charts at the ready. Poor girl it was only to confirm one appointment not set out a nuclear peace treaty . 

Cant help the need to control and make lists .I pads were invented for me .

Anyhow promptly burst into tears poor girl .withnan hour someone from patients care was in phone to me trying to reassure me so yes they are  very caring nit a job I could have done much to cut throatbthat me oops no,pun intended!

re PEG did ask oncologist  and MDT atbMondays meeting ,his reply was seeing as we have a targeted primary aiming for radiation intense in that side and small,blast in other side with the aim of preserving the swallowing function throughout treatment .

Think I would prefer the safety net of the PEG abut he said nasal feeding tube if needed for last weeks so at the moment bought a NutriBulle and working out how I can get the most calories out so spinach kale  and so on with protein powders understanding by the time I find one I won’t like the thing !

thank you for  replying and have a good weekend .

Raz. Or (Hazel) proper name 

Raz

make as many lists as you want, try to prepare yourself for what’s about to happen

in reality ... nothing goes to clockwork

radio therapy machines breakdown and what was a 3pm appointment suddenly becomes an 8pm appointment.

you read everything you can, talk to people like myself to find out every little thing that’s going to go on

you are fully prepapared and understand everything of every day of treatment

first couple of days in ....mmmmm. I’m doing well....

first week in .... mmmm still doing ok .... I can do this

then in the second week your taste starts to go .... that’s more a mental thing as suddenly you lose the enjoyment of food .... everything tastes like soggy card board ... and the you have aluminium tasting burps .... wierd

what im trying to say ... as it’s great to be prepared, but it’s hard to be in control

things happen, losing you taste is not what you expected (believe my it’s a hard one) ... it will come back but not for sometime yet

The mask fitting can be a bit uncomfortable... if you have seen the film Alien .... I can only liken it to that .... more over it’s suddenly the first real session and realisation that this is happening ... and that can be quite a jolt to the system, so make sure you have someone with you.

You will get through this, you will have you own good, bad any funny bits to tell ... but you will get through it.

Dont get overly concerned about a peg or ng tube at this point,  your consultant may advise an ng tube if the radiotherapy is more targeted as opposed to the hole of your head getting blasted and needing a peg

i hope I have not scared the life out of you ... just being honest but from my experience ... yours will be differen

lets us know how you are getting on and where you are in the process

vatch

Hi Hazel, 

I saw you were asking about private messaging so I just wanted to let you know we do have this on the forum and you can find out how to use it just here.

I hope this helps :)

Kind regards, 

Steph, Cancer Chat Moderator