My first post

Hi Simon, just read your post, it sounds like you are doing okay and managing well in spite of problems and setbacks.  You sound like a very resourceful and determined person.  I hope you make a fuss to get your appointments on time, you shouldn't have to wait.  I can't help with how things should be for you right now, as we are at the beginning of the whole thing, my hubby just diagnosed with same as you, but not started radiotherapy yet.  Did they tell you all this was going to happen?  We've been told he will be sore and might become more hoarse, but the rest we are finding out by internet.  Where you ill before your chest infections?  I think it's amazing you got through all that treatment on your own, and you deserve a bit of nice stuff happening now.  Hope things improve!

Hi Simon,

I have had the lot a full laryngectomy and Thyroid removal.

If you read my profile you will get a better idea what lies ahead . If you have any questions at all just drop me a blog,and if I can I will answer any questions if I can.The same goes for Kentucky57. A bit of advice for you both stay clear of the internet. You will get 10 different answers to the same question . Good Luck

to you Both.

Take care and be safe Sarsfield

Hi Simon,

I don't know anything about the cancer you have had, so can't offer any particular advice on that - but wanted to reply re. the appointments. If you are worried in any way - contact your consultant. Call their secretary, stress that you need a check-up. If you have no luck - try going through your district nurse or local Macmillan nurse and explain exactly how you feel - and don't let it slide. The hospital may be having issues - but that is not your concern - you need to look after you! Unfortunately you need to be really vocal with hospitals sometimes to get the support you need and deserve. You need your mind putting at rest and they have a responsibility to do that.

Also, I agree, don't browse the internet, anyone can put anything on the internet.

Take care of yourself

Jo x

Thanks everyone Ill see what I can do with my appointments, It's just that since my treatment ended I feel abandoned, no help what so ever with my side affects. All I had was the internet to go on for information. Lucky some information I found was true with side affects from having my cetuximab chemo treatment  had a vary bad reaction got lots of really big wheels on my bum found them really painful to sit down on so I told my Macmillan nurse but she thought they were nothing to do with my chemo so i went on internet and found them to be a common side affect so told my doctor and he gave me antihistamines they made them go away with in days.

No kentucky52 I was not told anything like the side affects I'm experiencing now. And no I was OK I was fine before I had those two bad chest infection.

or ant one to ask it what's happening to me is normal

Kentuck57

I Had very bad so called sticky mouth, dry mouth.   So I drank lots of fizzy soda drinks and they helped clear it especially in the morning when its the worse.  He will probability end up with really bad constipation with not drinking enough or eating enough.  By the end of my treatment I found all the treatment really kicked in and I never got out of bed unless i had to never known being ill like that before.  tell him to use lots of Aqueous cream to help stop the drying and scabbing on the area of skin that's exposed to radio therapy that it gives you.