Hello to everyone, my name is Julie and my partner Martyn has been diagnosed for the 2nd time with cancer of his voice box.
He had laser surgery in Aug last year has this was advised as the best course of treatment by Martyns ENT consultant,has the cancer was only at a stage 1,after that a biopsy confermed that everything was clear. Martyn then started to get a pain in his ear and breathless in Feb of this year and his already horse voice was slowly getting worse.
Martyn was then sent for some scans and we have now been told that he has a stage 4 cancer in his neck, Larynx and Lymph Nodes. He has been told he has to have his voice box fully removed.
He is a lorry driver and is the day after being given this devastating news he is jumping back in his lorry as if nothing as changed.
I am so worried for him as at the age of 41 how will he cope with this lifestyle change.....

Hello Juliee

Martyn and you might find Ananth's experience with his cancer of the larynx inspiring.

Best wishes
Vinod

Hi Juliee,
I was just 42 when the cancer struck in its stage 4 and the doctors gave me no chances in regarding to save my voice box. It was a major conflict withen myself - if I was ready to loose my voice or try and fight the cancer. I may have my voice box today - but trust me its as good as not having one as the only way I communicate is through my stoma and have been feeding through a peg tube in my stomach for the last five years. I havent even had a sip of water orally in all these years. Juliee, as I say very often - the clock can never be reversed and its best to look at things in a positive manner and move on. You will be surprised how many new things one learns about oneself and how to make a good living. The idea is to accept what the cancer has left behind - after effects and scars but be happy that one stood up and faced the cancer and won.I lead a very happy life nown and even with my set backs I have learnt to work on various projects and I still am the bread winner for my family.

Please tell Martyn that even if the worst befalls him and he is forced to remove his voice - everything is not lost as communication is very much possible and in his case even eating normally would be there. There is no reason why he cannot carry on with his job with the help of an orator. Tell him from my end to keep his head high and begin to look at life in a positive manner and the pains of cancer or loosing a part of ones body vanishes. Do go through my story as Dr. Joshi has advised - it may be bring you around to realise how to turn the negatives of cancer into positives.

Do write if you have any questions - I would always be there to give you a helping hand.

With warm regards to both Martyn and you,
Ananth

Ananth, Thank you so much for replying to my posting, I printed off your story and we both read it, you have been through so much and come so far, i find that with this happening to antone, but at such a young age so hard to come to terms with, My first thought was that martyn will never be able to say 'Happy Birthday to the children again and tell me he loves me, but of course after reading on I find that he will be able to speak even without his voice box.
His op is now planned for the 15th of may,and waiting 3 weeeks it so very hard, it seems such a long time, we had hoped it would have been sooner but has the consultant has clinics, etc that was the soonest they could fit him in.
Thanks again for replying again, hope to hear from you soon, Bye for now Julie X

Hi Julie,
There will be many many more times then you can imagine when you will hear Martyn not just saying but singing Happy Birthday to the kids and even though his voice will not be the same as earlier ( most girls find my voice husky...!!)you will be the one he will keep telling you how much he loves you.Life is all about taking things out of anything - good or bad and converting all to something positive for oneself and the family in every sense of the word. I am sure Martyn is one great survivor and you not wont but dont have anything to be worried about.

I can well imagine the waiting period - it is really frustrating as one just wants to get it done and over with. Keep these weeks happy and full of fun and let them be fond memories of his pre operation days.I actually find it strange that one has to wait for such a long time to fit someone in for a surgery as in my country, I just walk into the hospital and the maximum I would have to wait is either of the next wednesdays or saturdays. More then often I would pick a saturday and be the first to be rolled into the OT ( 0700 hrs ) and would be back in my room by noon. Spend the night in the hospital watching TV and next day being a Sunday - get back home.Things are very different here in India. There are only two kinds of people - the HAVES and THE HAVE NOTS. the latter have a bad time as most of them cannot even afford three square meals a day let alone the cost of medicines. I never ever thought about this when I was well, okay and travelling all over the world ( by the way, I had an apartment in Paddington, which I sold off once I got my cancer ) and now when I see them, I see the reality of their sufferring. I do try my best to help them out as much as I can through various NGOs and programmes. I personally finance and take complete care of 25 kids who are in the final stages of cancer.

Anyway - thats really moving out of track. Do keep me posted on Martyn and just keep giving me the good news as thats all there will be.

Take care to you and your family,

Ananth

Juliee,
I support all that Ananth has told you, I lost my larynx to cancer at the age of 46 and now use oesophagal speech, which is voice created in the food pipe by swallowing air, a speech therapist taught me but it does depend on the indovidual, how much surgery is required residual muscle strength etc. I fart and burp a lot more than I did before but that is a side effect of air going into my gut as a by product of speech. I still maintain my employment as a contract negotiator although on intial diagnosis that did not seem to me to be a very realistic option. What I was not told prior to my operation was that I would become a neck breather i.e. I breathe though a permanent opening in my neck called a stoma. This takes a lot of time to get used to, not so much from the patient's perspective as the act of breathing is automatic you just get air to your lungs from the stoma instead of mouth or nose, but rather for family, friends and strangers. The reason for this is that the "valves" which protect the lungs from food or drink taken in through the mouth are also removed in the operation and without a stoma the patient would choke by their own saliva even if they chose to starve. Martyn will be fed by a tube while the initial wounds heal and he can again swallow without difficulty, in my case that took a week, 7 days. After that again depending on the individual real food can be taken varying for the next few weeks from mushy through to normal. I was starving at the end of a week for I like my grub (as my colleagues will testify) and although I was getting all the nutrition I needed it did not of course feel as if you were being fed. So my first meal was roast chicken and all the trimmings which I really enjoyed helped down with copious quantities of water. Of course I can't eat and speak at the same time now but I was always taught that it was impolite to speak with your mouth full so no problem!!

Unfortunately a side effect of the stoma is that manual labour becomes more difficult as bending and stooping can cause interference in breathing but you just have to slow up activities to suit. I spent last Sunday afternoon digging in the garden but now it takes twice as long to do half as much, but I still get there in the end.

I am a Christian and pray for Martyn's recovery post surgery, he will no doubt have radiotherapy which is tiring and he may be off work for a substantial period of time and I also pray that you will obtain all the benefits to which you are entitled especially during the transition and recuperation period. As I am not in manual work I returned to work after 3 months part time for the first couple of weeks then full time. For a few months until I got my confidence I would use e-mail as my main communication tool in the office but gradually found comfort in using the phone and now it is second nature, it certainly puts off those annoying marketing calls trying to sell you anything under the sun.

So its a different life after the operation but it is LIFE and we need to cherish the life we are given for as long as it is in our power to do so. Martyn may have to change occupation but he can still earn a living and support the family, what he will need after 15th May is a great deal of love and encouragement, the immediate sight post surgery is not pretty I likened myself to Frankenstein minus the neck bolts for example but my family made me laugh and pain management is really good these days. Electronic speech is available almost immediately but again made me sound a bit like Donald Duck so until I learned oesophagal speech I used pen and paper.

My advice to Martyn is to remain positive and be encouraged by his survival not to think of the difficulties but respond to the new challenges life will inevitably throw at him.

Good luck to all your family as they face this anxiety with courage, treat Martyn exactly the same after as you did before for he is the same person, he may need help with communication but everything else he should cope with fine on discharge. God bless you, Martyn and all whom you both love and may you know the comfort of God's love and grace through this traumatic episode of your lives.

Thank you so much replying to me, I find this helps a great deal and I have found that me passing on the message of support to us both and your own personal stories to Martyn it does seems to have lifted his spirits.
He tells me that he is not worried about the pain he faces after the surgery and during his radiotherapy 6 weeks after surgery, but the fact that they told him that by removing his voice box it is only a 50/50 chance of curing the cancer.We are going back to see the head and neck nurse on the 9th of May where Martyn will also see the speech therapist and they have also arranged for him to meet up with a gentleman that has also lost his Larynx.He also has a appointment for his Pre-op assesment, bloods,etc etc,on the same day, but I find it such alot of information to take in, in such a short time.
Again thanks to you all for replying it does help us both to keep our spirits up...
If anyone has any tips of things martyn or myself could take into hospital that would be great.... Thank you xxx

Juliee,

My advice for the hospital stay is for Martyn to take in plenty of material to read, it can be soooooo boring, for the first week after the operation I did not even have a break in the routine for meals. Visitors are a huge comfort.

No one can give us a guarantee with cancer and I am afaid it remains a concern at the back of my mind, for I have proven susceptible to the pernicious disease so it could come back at any time but I cannot live my life worrying about that, I would make myself ill - mentally.

With respect to Martyn the cancer has been found and is being dealt with, age is a factor of course you are so young therefore any threat to curtail such a relatively short life is bound to pray on your minds. The only answer I have for that is to treat each day as it comes and be grateful for it and live life to the fullest extent possible when you have the chance.

I am fortunate in that I have a Faith which enables me to believe that death is nothing to be afraid of even though when I think about those I would leave behind I feel sad for and worry about them. I am 58 this year but none of my or my wife's parents nor their siblings reached retirement age of 65, and I feel since my triple heart bypass 4 years prior to my laryngectomy, that every day since has been a bonus which I treasure and cherish.

We all must pass on: it is always just a question of when not if, but only a few lucky ones know in advance roughly when their time will be up and can therefore put their affairs in order.

I empathise with Martyn, but I have had 16 years since my first brush with death following severe heart disease and must encourage Martyn to think positively about the future. We have such wonderful surgeons and consultants in the NHS and are truly fortunate to live in one of the most advanced societies and economies in the World. He like I will be well cared for and not only by the professionals but by you and his family. Laughter is truly the very best medicine and if we are happy today we can look forward to tomorrow with confidence whatever it may bring.

I shall pray especially for you, Martyn and the wider family so that you may all know the love and fellowship of God which is the essence of Faith.

Yours affectionately DWR

Thanks again Dancing with Roses for replying,I wil start collecting the reading material ready for Martyns stay in hospital, I am quite curious to know exactly how much martyn will know when he wakes from surgery,will he be highly sedated for a while and when will he be able to start drinking and eating. He was gob smacked when the Head and Neck nurse told him he wouldnt be eating a T Bone steak and chips again, surely that cant be true? can it...
They have told us that his op will last between 5 and 8 hours and if they have room martyn will go into Intensive care for the first 24 hours.
I am quite prepared for the Frankenstein look and I am quite able to prepare myself for that moment when I see him, he found that some what amusing when I told him (of course minus the bolts)!I hope that he will find his breating some what easier once he has the operation, as his breating has become quite strained recently, they are keeping a close eye and have said that if he does have any problems they would be able to laser some of the tumor away as a temporary measure until the larynx is totally removed.....Hope to hear from you again soon and thanks again X

Hello Juliee,

I must say that Martyn's condition sounds more acute than mine was at date of surgery and therefore must qualify my reply by saying this was my experience. I eat normally and have done since day 8 from the operation, but I do require plenty of water/juice/milk/coke etc to drink while eating. Dry food like bread can get stuck if not chewed well prior to swallowing, but you can't choke as there is no connection with the lungs. I spent 24 hours in ITU (Intensive Care Unit) which was 2 days less than for my heart bypass. My operation was long it is complex and skilled and although I was out of it I recollect my wife saying it was over 10 hours. When I recovered from aneathesia I recall a tickling sensation in my neck and the desire to pee and to cough. The nurse was at my side almost immediately and I signed my desire for the toilet and was told I had a catheter and just to release my water I then pointed to my neck and the nurse told me to cough which I did spraying her and the roof and wall of the ITU with accumulated blood. It took the nurse quite a while to clean up.

With respect to being able to eat I am afraid that you must heed Martyn's own advisors in my own case I had to wait until the wound healed sufficiently to prevent communication of food from the oesophagus to the rear of the stoma and at 7 days was sent to the x-ray department to swallow barium meal which indicated that I had healed well and could attempt light food, such as porridge, scrambled eggs, custard and jelly. However I was starving and ordered roast chicken and trimmings and managed with pleanty of water to down most of the meal to the astonishment of the nurses who cautioned me to be careful. When I got home 3 days later I celebrated with a chinese takeaway my favourite mixed meat chop suey with egg fried rice which I demolished completely.

However as I say that was me I have been particularly fortunate (for which I bless the Lord) and I would not wish to give Martyn false hope when his clinical advisors are being so cautious, it may be I am sorry to say that Martyn's surgery will be more invasive than mine or it may be that they are just being typically overcautious and presenting the worst case scenario to avoid being chastised later.

I must admit that I never thought to ask these questions before my operation. I understood that if I did not have the operation I would die and so the consequences of the operation was of little impact to me by comparison, so like the stoma, my intravenous feeding for 7 days came as a shock to me. I had expected to lose my larynx and my voice but had imagined everything else would be just as normal, boy was I wrong.

Physically after the operation I felt wonderful, it was a relief to be alive, and free from acute pain which in my case became manifest as excruciating earache. But there was another patient who had had the operation some time earlier whose gullet (oesophagus) had constricted such that he could no longer swallow. He was still on an intravenous feed when I was discharged, I do not know what happened to him. A nurse suggested that it could have been psychological as he had come into hospital to have his gullet stretched which was successful but he could not put solid food in his mouth without what we say in Scotland "cowkin" a reaction much like putting your finger in the back of your throat to induce vomiting.

So be prepared Juliee for a variety of sights both in Martyn and his fellow patients but maintain your positive and caring attitude for it means so much and will be such a boon to Martyn. I was most distressed by my wife's patent revulsion at my new look, not her fault of course, but I have heard of wives never being able to come to terms with the stoma and refusing to look at it. Maggie now does not give it a second thought but we are 11 years on, for the first 18 months it was not so conmfortable for her. Some wives have to be able to aspirate the stoma with suction devices, Maggie has never had to do that for me luckily, and I doubt she could do that without being physically sick especially during the first year she is squeamish, not her fault. We have been blessed and I truly pray for you and Matyn and hope that your experience wikll be as close to mine as possible. Do not lose faith Juliee, DWR

Our prayers are with you both and as I had said all will turn out right!

Hi Juliee,

I know I put up a small note yesterday but am keen on knowing on Martyns condition as a matter of inetest and concern. If you feel upto it, please do me a favor and send me some details about his coping up.

Take care,
Ananth