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I am new to the group and would like to introduce myself.
My name is Alex and I am 59. My wife has just turned 60 and as a birthday present she was told that she may have cancer in the tongue. (Sorry for the emotional language but that’s how it feels). It is still to be actually diagnosed - she had a biopsy last week and is expecting the result tomorrow - but it seems 99% likely that that is what it is. She has an appointment with the hospital on Monday and we are just in limbo just now wondering how bad it is and what needs to be done.
So, we have been in bits all week but last night as I couldn’t sleep for it all I looked up details of what could be involved, mainly to reassure myself. Big mistake! As I was reading it I just broke up as I contemplated possibly losing my companion of the last 36 years or how she will be changed by the possible treatment and what she will have to go through. I just ended up having to go through to her in the other room and then we both ended up crying for about half an hour. I felt bad as I didn’t want to be so needy and to support her but I was so uncontrollably upset I had to be with her.
Anyway, eventually got to sleep at about 5am and slept for about 4 hours, which was a relief but not long enough. I needed a sleeping tablet and some alcohol to help me do so. I know it’s early days, but the not knowing is killing us and the possibility of weeks or months of treatment that may be life-changing too. It shows how fragile life is, as this time last week we were living a carefree life without worries, and now it’s all crashing down.
So, I was just hoping some of you could help with this and how to cope with things. Nighttime is the worst time as during the day the normal everyday things keep you occupied, but at night my mind just goes haywire. I’ve had about six hours sleep in the past 48 hours and it’s taking its toll. It’s just killing me what she may have to go through. She is the loveliest, sweetest woman you could ever meet and she does not desrve this, but I guess that’s the nature of the beast.
Anyway, any help would be great. I know you are all going through similar and our situation may seem trivial at this early stage, but any words of wisdom would be a great help at this stage.
Hi Alex. So sorry you are here but actually it’s a good place to be once you don’t have the choice. Many of us here have been through all this and emerged healthy though changed but with a future. Once you have that diagnosis a well oiled team will be behind you and it’s easier to bear once you have a treatment plan. It sounds as if you are there to support your wife because she will have a bumpy ride. Come back once you know what’s happening. This place is full of comfort and tips on surviving both fir sufferers and carers. I am 10 months on from tongue cancer myself. Have a look at my blog. I have tried to inject a little humour into it but I don’t pull any punches. Stay off Google. There is lots to alarm you and it’s full of out of date statistics and inaccuracies
Oral cancer is eminently treatable these days
Good luck and let us know how you get on
Thanks very much for your reply. It is very encouraging and it is good to see that you are a survivor of this cancer. It gives us some hope. I will have a look at the blog when I get home and thanks for posting the link.
I will come back and post again once we have some more information.
Hi Alex this is Hazsl I am 15 month post radiotherapy for tonsil cancer with affected lymph nides inwas 61 when diagnosed and in my words if I can do it anyone can
first advise try and stay off dr google it will scare you not all facts are correct stay with Macmillan and cancer U.K. sites for now.
Sleeping will be hard until yiuve git a diagnosis we’ve been there so do know what you are going through .
when you are ready I have a blog details below where I detail my experiences,treatment is hard but doable recover times vary but if yiu read my blog yiu will see u am now cycling.
Plus I am still me ,not a new me not a different me I am still me .
hooe this helps send a friend request if you want to chat privately.
keep in touch
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz,wordpress.com.
i give a honest account of my experiences with tonsil cancer
There are loads of us survivors on here Alex and far more good outcomes than bad. It'd be wrong to say it's easy because it's most certainly not and you're in for a rough ride; personally I think it's often harder for the family than it is for the patient. Us "victims" get intense help from any number of medical professionals virtually 24/7 if needed and loved ones suffer hugely and largely unaided which is where hopefully the people on here can help a bit.
Also there is a Carers Only group which you may well find helpful.
My cancer was a bit different but the treatment was similar so without wishing to "over-blog" you mine is linked below.
Very best wishes and love to you both. Coincidentally it's six years ago to the day that I had the neck dissection which was the first part of my treatment and I'm still going strong.
What is a Community Champion?
Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.
Thanks for your words, they are all giving me some hope.
I will check out the blog at some point. I've had a look at Beesuit's and whilst it is inspiring it is also hard reading at points.
Wow, Mike Oldfield, the namesake of one of my favourite musicians!
You're right, I was thinking this the other day, that if you are not the one with the illness your mind probably goes overtime thinking about what they are or might be going through. I have also had horrendous bouts of grief with the thought that I am going to lose my long-term companion, but these have passed to a degree now as I think her condition is treatable, it's just a question of getting through that and out the other side. Again, your comments have given me hope and I am determined to do whatever I can to get us both through this.
I'll check out your blog later too, for now I think I've read enough but these things are good to come back to later if I am having a hard time of it.
Hi Alex ni problem ,it’s a lot to take in but everyine in the forum will be here for you , it’s ok to rant it’s ok to shout and remember it’s ok to cry.As an Head sure up John and I have been married 40 years we don’t argue but yiu May find it pushes you as in Johns words on the blog he though he was going to loose me someone’s he had spent 3/4 of his life with and was angry.
Just be there like I can tell from yiur messages you like my John will be, John did put in perspective into my blog in October 2018 post when yiu get round to reading it ,
Hey Alex. I’m still here and kicking. Just remember that.
Some great advice from the other guys im sorry to hear your wife's news and how it is upsetting you both, i remember being told that its 99% certain it was cancer, thankfully i never had the facilities of the internet as they were expensive back in 2008 when i had my first floor of the mouth cancer, in fact, i had never heard of oral cancer. I was not a member of this site until a year later but i found it a wealth of knowledge helping me get through my journey, which was long but on the whole, i did not find as bad as some people even though it changed my life quite a bit. So since 2009 i have been on here along with many others offering our advice and help from personal experiences advising people not to use Dr Google but i think we have all done it so try not to worry what you have read as it is so misleading. Maybe know its all in the open now you and your wife will be able to help each other get through the next few weeks, giving support along the way .
Please speak to your G.P about your concerns and lack of sleep as they can prescribe something for you both or maybe someone to talk to like a Macmillan councillor. I still take sleeping tablets ( zopiclone)from time to time. Cancer really does not care who it affects so we have to be strong, determined and believing we will beat it which is very possible in this day and age as the success rate is very good and improving all the time, i know times are moving on since i had my first cancer, with new treatments, keyhole surgery and better meds.
We have all been through different journeys and have come through the end as well as can be expected, it took me a bit longer but i got there with the support of family, friends, this forum and of course the N.H.S who do a fantastic job considering. Lets hope the results are kind to your wife and yourself. I wish you all the best for Monday and keeping my fingers crossed for you. Take care .
Its sometimes not easy but its worth it ! Click here to find out more
Hi Chris, thanks for that.
Yes, we have an appointment with the GP next week and will see if we can get something to help with sleeping. The OH doesn’t usually have sleeping problems and although she has had a few problems since this news, she can still sleep pretty well considering. But I’ve been struggling and something to help with that would help a lot. We’ll see what he says next week.
Alex, is there a Maggie's centre near you? You'll be able to get counselling there or from Macmillan. As others have said, carers are left out on a limb with this disease and your wife needs to concentrate on herself......says the woman who spent most of her lucid hours worrying about others ! Take care. The shock wears off somewhat and you'll find out you are stronger than you think.
Yes, there is actually one at the hospital and we plan to visit there on Monday and thereafter as necessary.
I do feel that we are feeling better now and getting prepared for they mission ahead. We know there will be difficult times but we are determined to get through them, and we know from past experience that of we both work together we can achieve a lot. The reassurance from people here had been s great help too, and for that I am very grateful.
Sorry for the typos, using the mobile and it's changing stuff, lol.
Maggies are good and if the people in yours are as good as the one I use then you will be in good hands.
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