Hi all. My name is angie. my mum was diagnosed with throat cancer last october. it was actualy in her tonsil which was taken out but they said there was a tiny bit on her tongue as well. she started radio therapy dec 29th and had these sessions for 7 weeks with one chemo session a week too.
the treatment made her so very ill. over night she went from my mum (only 49 years old) and a young 49 years old at that...to a ninty nine year old woman...its been devastating and heartbreaking. its now 5 months since her treatment ended, the specialists say the treatment has worked butn she still has to go for a camera down her nose/throat every 4 to 6 weeks to check. she is still feed tube fed through her tummy and didnt get on well with the suppliments they gave her as they made her terribly bloated and constipated (she ended up in casualty with a blockage it was that bad) although i do think the pain meds she was on didnt help either. my problem amongst many is this....how long should the recovery take? they say they got to it early but i am horrified that shes still in such a terrible state 5 months on after treatment ended. she still cant hardly swallow as she says it feels like razor blades, she still has 100 % feed tubes and is only taking tins of soup through it mainly anyway. shes weak, exhausted all the time, keeps getting infections, swelling ect ect. its so hard to see her like this and i wish there was something any of us could do. i miss my mum terribly as shes so weak and ill we dont get to spend much time as a family together as she cant cope with my new baby screaming ect. should it be taking this long? what are other peoples tales on this, any advice for us? we keep asking the doctors but all they say is that it can take up to a year but its been ages now and there just doesnt seem to be any progress. shes so depressed too and keeps saying if she had known it would be like this she wouldnt have had the treatment and that she wishes she was dead...its awful to hear but i understand were she is coming from as shes still so ill and has no quality of life at all. please help if you can, even if its just to tell me your stories. thanks from Angie

Hi Angie,

I'm sorry to hear about your mum.

I was diagnosed last year with tongue cancer (at the age of 48)had part of the tongue removed, neck dissection, and a flap which they took from the upper part of my right leg. After the surgery I then had 6 weeks of RT.

I know it's not the same as your mum, and I understand the worry and pain you are going through. My daughter who was 22 was devasted and she couldn't even come to see me in hospital because it upset her too much to see me as I was.

I'm sorry that I cannot give you any advise as to the recovery period, as I have not had the same as your mum but I am sure it won't be long before someone see's your post and can associate with it, and give you a little bit more info/advise than what I've been able to do.

Please stay positive, I'm sure she will be fine.
I have also said the same as your mum, wishing I never had the operation, and how things seemed worse and wishing I was dead, so no-one had to put up with me. I think all of us that has been through this must have thought it, even if we hadn't said it. I used to think why me, I'm too young but the day I was discharged from hospital I met a girl who was only 21, and she was then going to have the same operation as me.

Is your mum being treated by the Peterborough hospital cos that's where I go for my check-ups. My surgeon was a Mr Moss (brilliant bloke).

Here's a big hug from me to you and your mum, keep us updated on her progress. You never know we may meet up one day if we are going to the same hospital.

Sue x

Angie,

Though every story and situation on this board is different and unique, many of the things your shared that your mother is experiencing are similar to my own experience.

It is a tough road. I would encourage you to know that many come through on the other end in great shape. My trip started four years ago,....snip by snip, until the tongue was completely removed. The stomach tube lasted about a year after the last surgery (four suregeries in all). The swallowing trouble during and after the RT is similar to mine. "Razor blades" is a good description. But it passes over time.

It's the in between the beginning and end that is the tough part. Be as strong as you can for your mother. It's good medicine for her. (My wife was that for me).

Wishing you the endurance and strength that comes only from God.

Fondly,

Bob

hi angie
i can relate to everything your poor mum is going through.i had base tongue cancer which was treated with chemo and radiotherapy,i also had a lot of problems after but mainly because my immune system was compromised through major surgery i had 6 months before the cancer diagnosis.i'll be honest it has taken me 2 years to be back to the person i was before treatment,yes the recovery can be quite slow for some,my eldest daughter felt exactly like you are feeling and kept saying i want my mum back why is it taking so long? she insisted on coming with me and my hubby to my appts so she could ask why was it taking so long to recover.now i can look back and see just how far i have come angie.although i still have the feeding tube i only use it maybe once or twice a week as i can now eat but my taste buds have not fully recovered.i hope i have put your mind at rest regarding your mum's recovery.i too was so constipated from the pain meds and had to be hospitalised for 4 weeks.it takes quite a while for the pain to settle down in the mouth and throat area plus swallowing can be difficult.it will take a time to get your old mum back angie but it will happen i promise.it's just a long old slog.wishing your mum the very best.love shirl xxx

thanks so very much for all of your kind words, best wishes for my mum and advice. i shall pass them on to her and tell her what you have all said. it is so very difficult, at the moment none of us are seeing much of mum because we are so worried about passing on swine flu to her (i honestly believe it would kill her) and because i have been in contact with someone who has had it in the past week i in particular am being even more careful. also its difficult with the new baby as my mum lives in march and i am in peterborough. i keep feeling that because she is so ill still that there must still be something wrong that they havnt found yet (perhaps paranoid) but its how i feel even though i never voice these concerns to my mum as her frame of mind is already negative enough...i just try to stay positive. I think its also harder for us all becsuse my grandfather (mums dad) dies of throat cancer 16 years ago) so i think thats on all our minds, non more than my mum. it also worries me as they have said the stomach tube stays in for no more than 18 months and then will need to be changed. mum had a rough time having it put in and is so fed up of being prodded and poked that she reckons she wont allow them to put another one back in....but shes not eating.,drinking or swallowing and is skin and bones so from that point of view she must have another one replaced if and when needs be or she will simply starve.
again...thanks so very much! well done to those of you that have beaten it and come out thye other side smiling and happy and to those of you going through it...i send my love, best wishes, prayers and strength for the future. xx
ps sue...mums treatment was at addenbrooks however i believe her follow up treatment is now at peterborough. not sure what the name is of her specialist. but if you ever meet a lady called tina and a women with her called linda (her sister) then thats my mum (tina)xx

Hi Angie,
I've just read about your poor Mum and apart from wishing her all the luck in the world, I just wanted to tell her, and you to stay positive. Positive thinking and my sense of humour has got me through a horrendous year of numerous major surgeries, radio therapy and chemo therapy. I too told my husband I wouldn't have gone through with any of the treatments if I'd known how ill it would make me feel, but sitting here, 11 months on, I am so very glad I did go through with it all. Much love and love to you both x

thanks dian. i will pass on your kind words and support. think if she could just see some progress...any at all then it might help her with a more positive mind frame. so glad you are happy that you went through with it all and that you are on the road to recovery. my thoughts and best wishes go with you x

Hi Angie
That all sounds very tough. I went through much the same as your Mum, but had my tube out a couple of months after the end of radiotherapy as I was able to eat & drink enough without it.
18 months seems a very long time. It's nearly 3 years since my operation now, but I seem to remember things like custard, chocolate mouse & full fat milk being easiest to eat at first. Also good for some much needed weight gain.
Hopev this helps

Dave