After effects from treatment for chemo and radio

Hi Min

I don't think you'll find this very helpful really but long term effects after treatment are very much like the side effects.  For some people they gradually improve until they either disappear or become tolerable.  Other conditions may pop up further down the line.  Unfortunately no-one knows how things will pan out for each individual.   It was stressed to me that it's important to tell your team of all your symptoms at each check up, even at the risk of repeating yourself time after time.  

Sorry I can't be more specific really Min but just to reassure you that things will improve gradually. 

Linda x

At 2 years maybe I’m long term. My mouth is still noticeably dry but perfectly tolerable. I don’t rely on carrying water everywhere with me any more but I can’t go out without chewing gum in my pocket. I really really have to look after my teeth. 
These are the only physical reminders 

Mentally I still have cancer phobia and have to work hard on the “every new symptom is cancer” delusion. 
I still feel hard done by on occasion. 

Importantly improvements continue 

Life does return. When I was at your stage I never thought the time for my PET/CT would come and the thought that a year would come along was absurdly impossible. Honestly? These two years have flashed by and they will for you 

Thanks Linda and Dani. Dont laugh but I was on medication and one of the side effect was having really cold feet which was horrible. My side affects are a mash mash at the moment and able to deal with. I suppose the worse one is feeling faint when I stand up. Hope i dont get that later when up a ladder or similar. All The Best Regards Min 

A dip in blood pressure when you stand quickly is really common. That goes too. In the meantime get up slowly and keep off the ladder

Hi Min my b p used to drop quite badly when I stood up for the first few months it stopped as quickly as it started that and old hands snd feet are a chemo side effect t in my case . The body’s thermostat was haywire for about a year we had the battle of the central heating. But now I’m fine. The main side effect that j have is still dry mouth I now don’t carry water everywhere but always have sugar free gum with me. I would say most of the day I am 95% normal saliva . At 31 month post radiotherapy I am now no longer waking in the night for water which us progress. Don’t dwell on cancer it’s a blip in my life. I sm

lucky I never stressed about s scans results or hospital appointments I monitor my neck well hubby dies snd I use a magnifying mirror so I know what my mouth looks like. 
hope this helps Hazel xx

Thanks Hazel It really does seem to be a mixed bag of feeling etc . I know I am getting better as feel slight improvements and daughter says she can see improvements over weeks  which is good. I am still at the stage wake up clear the  throat  switch machine off , toilet , try and brush teeth etc  , then medication and tube cleaning time. I am just trying to get myself sorted and back resting on the couch again asap. I am beginning to understand that this is going to take as long as it takes and I am not going to rush into anything but am making my recovery a 100% priority . All The Best Regards Min 

Hi Min

I was interested to hear that one of your side effects is low blood pressure and feeling faint. Wished that I had known about that before . I am getting so much info from this forum. I couldn’t figure out why it was happening as I did not have any issues before my operation and radiotherapy.

 My husband and I had a bit of a laugh when we tried to paint our bedroom. He went up the ladder as he gets low blood pressure when he bends his head down and I did the lower parts as I got low blood pressure when I got up the ladder and was afraid of falling off. We had a good team result in the end.

The low blood pressure lasted a while for me and I had to be careful as it got worse if I did not drink enough water. Good news is that it did finally go away.

Best wishes for your ongoing recovery as it does take a while but as your daughter has already noticed you do make gains every day even if they are small.

Lyn

x

I had the dizziness when i stood up for a while min - it really scared me at the time- i was told it was from the chemo

I used to squeeze my bumcheeks just before standing up- it worked!

I also used to have periods where i would sweat uncontrollably, i had to sit in front of a giant fan in my boxers!

For me after nearly 6 months there are practically no side effects min.

I get a bit of a dry mouth in the morning, and i have to brush my teeth lots.

I occasionally get a neck throb but it is very mild and now i think about it i havent had one in weeks.

And if i eat something really dry (like the chip shop fish and chips i had yesterday) then i need water with it

But other than that? i am fine.So assuming it doesnt get worse as time goes on...pretty good!

As others say it does vary though. 

Mentally its a different story, every spot on my tongue gets examined in minute detail, i check my neck constantly, i spent ages reading up on metastasis. Hopefully that side will improve too.

Hi Sophie Yes its a really weird one feeling dizzy etc which pointed me to other issues with my heart that a stent sorted  out , This time last year I was recovering after a heart attack and a stent , One year later recovering from cancer  now lol  Thanks All The Best Regards Min 

Hi Min. No problem we are all different even though similar diagnosis. Some days you may find out you can’t eat x y x thrn the next week you can’t. It’s frustrating but just give it a wide berth and return a week later and try again. It’s baby steps some days 2 back 1 forward.  But I am sat here eating a bag of plain crisps savouring every one. I’ve had a spate of ulcers which have now gone so have back on the crisps. 
you’ll get there just keep on top of oral hygiene used to take me a good 30 mjns but worth it as touch wood my teeth snd gums are fine.  
Hazel onwards n upwards x