Hi everyone,
I have been reading these messages for some time now and finally decided that I would like to join in. I am married Neil who was diagnosed with Tonsil Cancer in August 2006. After a radical neck dissection he finished his chemo/radiotherapy at the end of November 2006 and since then all his follow-ups have been good and he is currently clear of the cancer - Thank God. It will no doubt be very familiar to you to learn that we still have lots of on-going problems despite the positive news from the clinicians. Neil still gets very tired and although he returned to work last year he still struggles with doing a full day. He is very fortunate that he can work from home at least 50% of the time and this is so helpful as he has an hours drive to the office. I guess the biggest problem is eating - if only he could get a bit more nutrition down I think he would have more energy! Everything has been compounded recently as a long-standing and very close friend, who had a laryngectomy about the same time as Neil started treatment, died on Boxing Day. It has knocked Neil for six and he is pretty depressed and undoubtedly going through the survivor guilt situation. Just this week he has been to see a homeopath who was formerly a MacMillan nurse and he spent two hours wih her - he seems very positive about the meeting so maybe just talking to someone other than me and the family will have helped.
Sorry I have rambled on for so long but whilst on the one hand I am rejoicing that he is physically doing well, on the other hard it's very hard watching someone you love very much struggle.
I have read many of your stories with humility as you have all been through so much and may I wish you all well in the future.
I would be very interested to hear if any of you have used homeopathy and if it was of any help.
Margaret

Hello Margaret
Welcome to the site. I could relate to all you have written in your post.
Trevor got positive results from tests just two weeks ago and while it was like having a ton weight lifted off us, we still have to deal with his 'issues' on a daily basis. To fret about his swallowing difficulties and to know that he just HAS to rest while he insists he CAN do all he wants is very hard because there is nothing to do but wait for improvements and go with the flow in the meantime.
I/we are VERY grateful for his progress to date, his state of mind etc BUT as you say, it is very difficult and heart wrenching looking at the person you love who no longer looks like that person (but still handsome nonetheless!). There are so many issues that everyone involved in this journey has to adapt to (and adapt we do!). It's tough.
We are all here for each other and all take comfort from the little things for each other and feel blessed when you hear of some of the struggles that are happening with various members of the site. No matter your reason or need to write Marg, you will always find someone here to share with.
We have not used any homeopathic methods but I believe there is a place for anything and if your search takes you down that line then hopefully you'll find some answers there.
Good luck to you both.
Love from Down Under
Deborah

The lack of after care for Oral Cancer Patients is so frustrating.Follow up appointments with the hospital are all very well,but this particular type of cancer causes life problems that can go on for months and even years,and there is no centrally based after care help or advice centre.

The fear of recurrance in mouth cancer is so much higher than in some other cancers,because the treatment will never let you forget that you had cancer,as michelle often says,radiotherapy the gift that keeps on giving.
and sometimes the after effects dont show for ages and when they do they are the devil to control.

This subject really gets my hackles rising,because the feeling of abandonment after treatment is horrendous,and i can't get my head round where to start getting something done about it.

Any way welcome and thank god you have found SOMEWHERE that you may get answers to your questions,and articulate your deepest fears and worries.

liz

Morning Mags,& Neil, welcome, glad you now feel able to join us, it took me a while to come on board too, but once I did, met some lovely people who now feel like an extended family. Neil sounds to be doing so well, working & driving. Glad the Homeopathy is working.
Every thing Deborah has written I can relate to, as she says, we adapt, but it is hard seeing our once strong men so reduced, but Brian has the garden all planned out for this year & already replaced a piece of broken fence panelling. You cant keep a good man down

Cookey, I too share your frustrations at the lack of after care, although we have a wonderful MTD, when Brian complained to his Surgeon that he felt I, his wife, had had no support from anyone he replied sympathetically, "there are just not enough of us" We found this to be true as there were only 2 H&N cancer nurses for the whole of this widespread area.
On the other hand, after my diagnosis of Breast Cancer, I had the sevices of 9 Breast cancer Nurses to call upon if required, who also , knowing Brian had just finished treatment,offered help to him also.
We dont have the huge recourses that the BC charities do but thank God for this site, & the hard work of its founders, & those members who go to meetings to fight for us.
Love to all & as John says, Keep Smiling. Fran.

Hello Ladies,
Thanks so much for replying to my post. It is enormously helpful to talk to others who are in the same boat! One positive for us has been the founding of a head and neck cancer support group at our local hospital (The Luton & Dunstable). It was started by a great MacMillan nurse and a speech threapist and we are working towards a 'buddying' system to try and support those who are just diagnosed and about to start treatment. Hopefully this will prove to be a success and in any case just getting together once a month has proved to be very positive - there have been lots of stories to share and of course there is always someone worse of than you! As you can imagine the most popular topic of conversation is food (lots of fantasising) and our laryngectomy members are thinking of starting a choir - thank God for people with an irreverent sense of humour! We have had various forums and have discussed everything from diet, loss of confidence and even travel insurance.
One of my disppointments has been what they don't tell you - for example, Neil suffered a nasty bout of oral thrush and was really scared when he told me he had white gunge in his mouth and a sore throat - when he saw his doctor he was told that this is a very common side effect after radiotherapy to the head and neck! It would have been far less of a worry if we had known that in the first place - also Neil had a 'dewlap'which came up during treatment - the oncologist explained what it was and put his mind at ease but again, surely it's better if we are forewarned of these side effects.
Anyway, onwards and upwards and I must say that since Neil's visit to the homeopath last week he seems to have turned a corner - it maybe just coincidence but he does seem more positive and at the moment he is scoffing bowls full of spaghetti carbonara or pancakes with syrup, cream and ice-cream. Goodness knows what his diet is doing to his cholesterol levels but at least he is eating!!
Love to all - and Liz, I have read your story and my heart is with you.
Margaret

Hi Margaret, I haven't used homeopathy myself but they do use it for patients at my wifes day hospice and it seems to work for 70-80% of the patients.
You should never apologise for "rambling on", if you need to get it off your chest then people here are happy to listen. We've all been there in one way or another. Hagg.

Hi Margaret

Another post to welcome you to the site and hope you will get as much support from it as I do.

I have never used homeopathy (can't quite get my head round how it might work) but I do feel the opportunity to talk to someone is invaluable (mind you I would say this as I am a psychologist!) I had some hypnosis while I was waiting for my op and this was really helpful.

All the best

Gwyn