Hi,

After a number of weeks recovering in a very positive way I fell into an incredible depression this week. I have barely got out of bed and don't want to do anything. Unfortnately it is my youngest sons birthday party this evening and I have too!

It seems to have stemmed from eating again! I have been eating for 2 weeks as instructed by my consultant and over the last fortnight I have been in absolute agongy with my tounge. It is really sore down both sides and hurts alot when I eat - but more so as the day wares on. Therefore by dinner time I really can't eat. The pain is so bad and has really got me down as I don't want to hurt anymore. I have had enough pain this year (I am now crying again!). I get scared that it is the cancer come back somewhere else as there are lumps down my tounge.

I have been using bongella which eases the pain temporarily. I really need some help and advice. It is a real shame because I am down to only waking once a night instead of every half hour when I was at my worst and my throat is recovering well.

Right I better blow up balloons - luckily my wonderful Mum is coming over to organise the party because I just can't and it isn't fair for Jack to loose out because of me - my kids have gone through enough this year Frowner

Love Chloex
Original Post
I get depressed off and on, too. And I worry sometimes that the cancer has come back. My tongue was so sore a few months ago I felt it was on fire and I cried from the pain. It looks like I'm a little further in my treatment than you are. I finished my last treatment in February 08. My tongue and mouth are not nearly as sore and I am able to eat a lot more. Food is tasting better, but still not quite right. I am going to write in about this subject today so look for my posting. It can be so depressing to lose the ability and desire to eat because it's such an important and enjoyable part of life. Hang in there, there seems to be a lot of good, supportive people on this site and we care.
Chloe,
you are still very early days after treatment. Make sure that you haven't got thrush in your mouth. It is very, very common with our type of treatment. You may have a white colour to your tongue.
I too always felt evening time was the worst and that was definately the time I used my PEG. I think you are doing brilliantly if you are eating at all!
We all have peaks and troughs and I am sure you are just having a "down" moment.I think those of us who have family especially children try and be "brave" and sometimes we just have to have a weep and feel sorry for ourselves.
YOU WILL GET BETTER!
keep smiling and have a good party1
Anne
Thanks Anne & Laurel. I am feeling very sorry for myself at the moment. i have had a huge sob this afternoon - unfortunately I was at Jacks school fayre at the time! Shut away in a classroom luckily.

Laurel - I noticed you are 3 month ahead of me - the thing is everyone is different. I can taste food very well - just can't get it down easily! But like you the pain is so bad it makes me cry - how long did it last?

Do you think I should see my local GP? I am worried about seeing him because he obvoiously doesn't specilise in cancer/radiotherapy/chemo after effects and I don't want to be perscribed something I shouldn't be - or should I go back to my consultant? I am seeing my GP monday for the depression anyway and I have an appointment with a councillor at the end of his month. I am next due to see my consultant 12th August.

I don't think I have thrush - yes my tounge is sometimes coated but only after I have eaten/drunk something.

On the plus side I managed a biscuit the other day - a very soggy dunked in tea biscuit but it tasted GREAT!

Love Cx
My pain is still there and I still am on anti-pain meds. The intense pain lasted about a month, I believe and it seems to get better slowly, ovber timew. I'd ask the doctors if they can give you anything stronger, It's no fun to be in pain and it eads to more anxiety and depression.
hi chloe
so sorry you are feeling down.its seems to be part and parcel of the whole cancer thingy.i too suffered with depression and that all started with not being able to eat.food has always ruled my world.2 years ago i weighed 25 stone and then i had a gastric bypass to lose weight and was feeling healthier than i had for years and then suddenly out of the blue i was diagnosed with base tongue cancer.like you my mouth is still very sore and i still cant eat much.i have just made a roast beef sandwich with 1 slice of bread 2 bites and cannot manage anymore so in the bin it goes.and thats all i have eaten today thank god for the peg i say!i saw my g.p about the depression and was put on anti depressants but 6 months later decided to do without them.at night i wake up every 5 minutes to drink water and i go through 2 pints a night and about 4 pints during the day.i hope you feel better soon hon. love shirl xxx
Hi Chloe

I'm so sorry to hear that you are so down. I am about a year ahead of you and was lucky not to of experienced the sort of pain that you are going through. I really can't be of much use except to say that I know what depression is like. I am waiting till I feel a bit better and then I shall be off to see the local Mental Health Unit...or the Nut Nurse as I call them!

It doesn't help me that I live on my own and tend to shut myself away from the world and don't want to have anything to do with the world. I just can't wait to be well enough to leave here and move back to Devon to be with my friends...I hate it here and just want to be back in familiar surroundings.

If you want to cry hun, then cry. Just balance it out with a good laugh though. If you don't cheer up I'll ahve to send you a copy of Tiny Tim singing "Tiptoe Through The Tulips"...that's enough to send the strongest of men running for the razor blades!!! Big Grin

Ray
I can't really comment as I am a care giver and not going through what you are but did want you to know that you are not alone and to send you a Big Grin from CA
Thanks everyone for your support.

I am like you Ray - home alone - well with the boys who I can get away with staying in bed. I have now told my parents how bad I feel and they are getting me out and about. My Dad is going to start taking me for walks.Ray you are so lucky to live in Devon or Somerset. I am supposed to be going to Somerset 1st August with the kids and a friend and his kids but really don't want to go right now.

I have lost 3lb this week as I have cut down on my ensures as I am supposed to have increased my calories through food but manage so little of the food :-(

A couple of weeks ago I was trying too wean myslf off aftrnoon naps and was so positive, I was even planning on going camping with my Scouts next weekend (or trying to camp - if not visiting for the day). I really can't belive how badly I have slumped.

Thanks again guys.

Cx
Hi Chloe

I know exactly what you mean when you say that "you don't want to", I feel exactly the same way about things. To ease your mind, I think you should visit your GP and discuss this with him/her. Bear in mind though that the mental health side of the NHS is severely over-run and getting to see someone who is able to discuss your situation will not be easy. The normal response is just to put patients on anti-depressents and send them on their way. That doesn't mean that you shouldn't try though. Please make an appointment first thing tomorrow. Remember that we all handle our recovery in different ways and this blip may well be part of yours. In fact you may well be better off speaking to your consultant about how you feel, they in turn may be able to get you to see someone quicker than your GP.

Don't worry about an afternoon nap. If your body is tired then go for it. I try to go about my day as normally as possible (I still can't work though) and often fall asleep at the drop of a hat in the evening. This has the unfortunate effect of me being unable to sleep properly at night and it is often 5 or six in the morning before I drop off.

Recovery is not going to be a case of getting better each day, there are bound to be set backs. It would be ideal if we could see ourselves as someone who only sees us once a month does. They notice the overall change and improvement whereas we don't notice it. Does that make sense?

I to have lost weight. Since I last weighed myself 10 days ago, I have lost about 9lbs. This may be due to having my tube out a week ago and losing the overnight feed, or it could be that I have missed out on a few evening meals. I feel so damn rough in the evening that I am sometimes unable to even make a snack.

One of the signs of depression is giving up on things that you have always enjoyed doing. My advice to you is to fight this "black dog" and go to the camp next weekend...show it who's boss! As for August, if you are in the Shepton Mallet area, give me a shout and I meet up with you and scare you with my sense of humour!

I mean it masses when I say take good care of yourself. You are the most special you there is. Sorry if that sounds cheesy, but if cancer can't finish us, I'm damn sure a bout of depression isn't going to ruin our lives!

Ray


Big Grin Big Grin Big Grin
Chloe,
I'd echo Annes advice on the oral thrush. I still get it if i don't have my pro biotic drink in the morn. If i skip one day it's back with avengence!
It is REALLY ok to feel crap some days!
The fact you even went to your sons school fayre is HUGE! There were weeks that went by when all i did was sit on the sofa sleeping and tormenting myself with food programmes on the telly! Banghead I'd have a panic attack walking over the road and visiting my work collegues!
So if you feel depressed - go with it! But have confidence that the feeling WILL pass and you'll feel ok again eventualy.
I know that doesn't help at the time, but for every low you'll have a high.
You've done so well through all of this that it's bound to catch up with you eventualy!
See this feeling through.
& don't quit the Ensure, have it ASWELL as the food cuz i'm sure you could do with the extra calories!
All the best,
Mihelle
Again - thanks for the replys. I get concerned for my kids - how crap having a mum whose in bed all the time!

quote:
& don't quit the Ensure, have it ASWELL as the food cuz i'm sure you could do with the extra calories!


My consultant did bang on about not gaining any weight - so although I have lost a stone and a half on my ExTrEmE cancer diet I mustn't gain weight and the dietian doesn't want me to loose any!

I do the food program thing as well lol

Ray I am staying 15 mins from Septon Mallet and my friend (who is now doing all the driving so I can go!) suggested meeting in a gastro pub in Froame - he thought you'd know it. Would be good to meet up.

Well I am being frogmarched by my Mum to the doctors tomorrow so will hopefully have some sort of resolve on the depression and pain in my tounge. As I sobbed to my friend Tim (who I am going away with) - I have hurt enough this year and I just want it to stop......

Cx
Ahh yes, the extreme cancer diet....
Better than slim fast or weight watchers - and you get a life time subscription!

If you cant make up the calories oraly then Ensure it will have to be. It's more important that your weight is maintained - your body needs the nutrition to heal and mend.
Hey Chloex,

Just a short note to that I sure hope you're feeling better soon! I know from my own experience, being depressed isn't just upsetting but can be physically tiring also.

I also hope you find out what's up with the pain in your mouth. That sounds awful, and I hope it clears up soon! Like NOW! Wink

Take care and keep us informed, Cricket
Chloe so sorry to hear you are having a horrible time. I had thought I hadn't heard much from you was because you were out having fun!

Graham is also struggling at the moment, I can hear him throwing up as I type, the bucket he carries all the time is the newest fashion accessory no one wants.

He has had thrush really all the time since his tonsil came out and he was prescribed antibiotics and is on meds for it, it's really the only medication he is taking apart from paracetamol, he gave up the morphine as it made him feel depressed.

I really hope you feel more sparkly soon and I loved doing the quiz thingy you sent me.

Hugs x x
Unfortunately not been having fun Joanne Frowner Quiz was good wasn't it.

My doctor is contacting the Macmillan nurse I saw during my treatment for further advice on pain relief. I also have a lump in my breast that has been there for months (in fact I was supposed to go for a mamogram but the appointment came as i started my rt and I couldn't do 2 hospitals in one day!) so I have been referred for that again.

I feel a bit better just for seeing the doctor and alot better for all your replies - thank you so much Smiler

Love Chloex

Add Reply

Post
×
×
×
×
Link copied to your clipboard.
×