I am Kateman's husband. K has been coming to this site for months. I have not felt able to view or participate - until today, after spending several hours exploration. I was impressed by the humanity of the participants. I want to join this community and talk about my cancer experiences and concerns. Best wishes to you all.

Herman

Welcome chap,

let's hear your story then. As someone who was treated at the LRI i am interested to know your story.

cheers Tony K

Hello Herman

Another post to welcome you to the site. I also had an operation for tongue cancer last year at the LRI. I joined this site soon afterwards and, as you say, have found everyone really supportive and helpful. It has been a great comfort to me to be in touch with others who have shared similar experiences. Hope to hear more from you soon.

Best wishes

Gwyn

Hi and welcome.
liz

My story. Main details: I went to dentist within a week of symptoms (Dec 06). After 4 months of repeated visits - tooth removal and root canal work - the dentist finally decided on the need for a second opinion. My maxfax appointment came through for early June. 6 weeks later a cancer diagnosis, and 6 weeks after that (30th August 07) the operation.

Tumour removed, and lymphs in neck taken, But the reconstructive surgery failed. 19 hours in theatre. The blood supply kept clotting. So no flap. Obturater in its place.

3 weeks recovery with the fabulous Kinmonth folk then home to wait for chemo and radio to begin. Began Oct 21. What can I say? I had not begun to adjust to facial loss before plunge into that world!

Mucus and nausea, and mouth ulcers for weeks. Then had to be admitted into LRI Osborne Oncology for 2 weeks plus of hell. I had an infection that took industrial strength a-bs to get to. Complications. And I could not speak, so I relied on nursing staff's co-operation in reading my written notes. Terrible time. The PEG feed was causing staff problems for some reason. So many problems at this point.

Went into Kinmonth again briefly, wonderful people.

Where am I now? After 2 months of being flat on my back and sleeping as much as possible, making sure that I kept all of the many appointments (thanks to Kate) I now have the energy to be depressed and anxious. I have so many contacts but feel so isolated ... More on these aspects at a later date.

One major factor in my low morale is the issue of 'Optimism and recovery' or positive thinking and cancer. I feel so confused by the evidence around this debate. I see the Doctor has posted on this in the form of a questionnaire (Oct 07).

Anyway, I will return to this topic in a later post.

I wish you both well, and look forward to future exchanges.

Herman

Hi Herman, sorry you have had to join but here is another welcome to our exclusive club. I don't know how I missed you wife's previous posts but I did. You have had an awful rough time of it but lets hope that things are now on the up. This forum is a great place to be for carers and patients, so ask, scream, shout, whatever you like there is always someone to listen and advise is always available.

Things will get better.

Good Morning Herman,
May I add my welcome to those of your other "new friends".
You seem to have had a tough time old chap I hope things take an upturn from now on.

It is now just turned four years since I visited the dentist because my lower denture was rubbing and causing an ulcer (so I thought)The dentist was a young chap, recently qualified,and clearly on the ball. He refered me to Pinderfields (Wakefield)and within the month I had experienced the roller coaster of X-rays, scans etc and was recovering from the operation in Leeds General. When I read of other people's experiences, including yours, it makes me realise how lucky I was to choose a dentist who was so diligent.

It is easy to understand your confusion about optimism and low moral; in these matters time really is the great healer.

I wish you well Herman, as I am quite sure all MCF members do.Please keep in touch and if there is any thing you need to know go right ahead and ask, someone on this site will have an answer for you.

Keep Smiling
John

Hello Herman
I was touched by your post and your words brought back the memories of confusion, sadness, anxiety and all the other mixed emotions we experience as we make our way along the cancer trail.
My husband finished his treatment in September last year, but as you know, the problems don't end there! There have been hurdles and setbacks, celebrations and gratitude for success to date.
I don't get to post too often these days because I have started a new job and don't have the time in the mornings to catch up with the latest posts and by the time I do have some time in the evenings, everyone has responded to any new posts! The time delay is a bit of a barrier in that respect. I'm being very naughty tonight and am up way past my bedtime (it's 3 minutes past midnight as I write!)
I would like to say though that life is sooooo much easier and better than it was just a few short months ago and if you can manage to get through each day as it presents itself to you, roll with the ups and downs, allow yourself to feel however you feel, and be kind to yourself hopefully you will find yourself writing this same message to another new member on the board before you know it. I hope so. When you are in the thick of it, it seems like it will never end, so in this instance it's probably best not to look at the big picture but to break things down to the here and now.
Good luck to you both. Post away to your hearts' content because there is always an ear just the click of a mouse away.
Love from Down Under
Deborah

Hi mate
Oh you hit the nail on the head with that positive thinking thing. I actually am an optimisitc, positive person but nothing got my back up more than reading about positive thinking and how you can lift yourself out of it. It is almost ( not quite) as bad as people telling me cancer is caused by negative thinking and stress. Sometime I could happily throttle people who tell me that kind of b...s... - implying it's all my own fault. Some are doctors who should know better!
Anyway sorry to rant a little but I do believe a little rant does us good now and then. Like I said I am positive and try and be optimistic - but that's different from being told it and some days you do like hell as feel like being positive and optimistic - and you don't want some twit (and I cleaned that up!) telling you to cheer up, it'll all be alright. No it bloody won't. It'll be okay, it'll be better than it is, it'll be copable with... You know what I mean.
I am trying to cheer you up in my own way! Doh!

Anyway welcome on board. I'm new here myelf. Really sorry things haven't been going well for you. I have a chest flap in my cheek/ jaw - aches like buggery in the cold weatehr - but obviously I was very lucky. We are all lucky if we are still alive. That's positive thinking.

Try and keep laughing as much as is possible - that's my best advice. People might think you've lost your marbles but that's their problem.

Tony

To all that have replied to my 2 intro postings: Thank-you so much. Firstly I will give personal details; My name is Martyn and I am 48, Kate and I have a 15 year old son. And I am so scared.
The facial disfigurement and speech impediment make my condition so obvious. The cause is not itself obvious, I have toyed with non-cancer explanations - a car crash was my first thought. The scars have healed well though, which is fortunate.

The appearance and voice cannot be disguised, and I tend to hide away. I only feel relatively comfortable in a hospital setting. Strangely, in between surgery and chemo+radio I was less self-conscious and went out despite scars and bruising. Two reasons I think, firstly my beard grew back quickly and I had not yet experienced the long attrition of chemo+radio.

At that time I felt strong and capable, and determined to fight. Then chemo+radio was such an intense experience, and combined with linked deteriorations (e.g the fragile condition of my upper lip led to it splitting in two, and an unplanned enlarging of my mouth area)and beard loss!, that my will just went.

In fact my identity went. During the 8 weeks of chemo+radio and hospitalisation for infection I lost myself. I am only now able to examine what happened.

Note. During chemo+radio I felt such strong emotions for those also being treated. There was such understanding and compassion among so many of these people -- also some selfish and not so nice people.

My comment on Optimism is related to the New Age views that I have encountered. This is not a rejection of complementary therapies, which I think have a legitimate place in the care world (as legitimate as counselling). My problem is with the alternative and 'spiritual'stuff. I can appreciate the use of meditation in reducing stress and anxiety, but not as a cancer cure. Likewise the dietary cures that claim to direct the immune system to fight the cancer cells. NB I am not rejecting the links between diet and cancer.

My mind has been a mess for the last few months and I am now attempting to re-build myself enough to get through the coming period.

I will attempt to communicate in a sensitive and informed manner with all those I encounter on this site.

Best wishes to all

Kate's husband 'Herman'/ Martyn

Welcome Herman. I went through a rough time emotionally too. It does get a lot better with time so hang in there. Hagg.

Hello Martyn (from now on)

You have taken the first important step in regaining your identity by telling us your real name. Despite what you see in the mirror, you will always be Martyn. Keep telling yourself that.

I look forward to meeting you at the Walk.

Best wishes
Vinod

Hi Martyn,
The fact that you are able to write such a detailed account of your illness and mental state shows you have come long way in coming to terms with your illness. You're on another stage of your recovery - moving forward all the time.
You have been through a lot even compared to the hardships we have all been through on this forum-yours seems excessive. So, naturally, time taken to recover will be longer too.

best wishes Tony K

Hello again, Martyn

Thanks for posting your story - as Tony says, you have been through such a lot. It is good that you now feel able to speak about your experiences and feelings.

I share some of your views about alternative therapies - there is so much "bad science" out there that takes advantage of people when they are at their most vulnerable. I do think that there are some things that we can do to help ourselves but I thought I lived a pretty healthy life and the cancer still got me twice.

It sounds as if you are starting to feel a bit stronger. Please keep on posting and we will all be here for you.

All the best

Gwyn

hi herman aka martin
yes i can understand that now you have the energy to be depressed after all that you have been through physically i too feel the same although thankfully i did not need rad/chemo just recovering from such surgery is enough for the body to handle but we are all on this trip together all at different stages and our partners have such a hard time too. i go to my local hospice for complimentary therapies massage/accupuncture ect and they really do help . also seeing a psychologist and she has asked me what i feel about meditation! have you heard of mindfullness it is some sort of therapy i am a bit scheptical but i may give it a go
big hug bev