Hi Luckyus.

How is the husband have you been giving him lots of loving after his bad fall, we men are so strong you women dont under stand how frail we can be. how did princess 1966 get to know you I have sent her a message to see if I can help.

I know what it is like waiting for infomation, I was lucky, I didnt wait more than a couple of weeks, maybe it was because of how bad my cancer had got. are you looking forward to christmas not because of the bad health, have you got any kids, my grandkids have just gone home they have been up for the weekend keep you young.

Well look after both of you good news is around the corner keep in touch.

michael.

Hi Micheal,

I was so glad that luckyus replied to my message because at the time I was so down I thought I was the only one going through all the negative thoughts I felt a bit selfish and ungrateful for the excellent treatment I have had.  Just over seven weeks ago I was admitted to hospital with what I thought was a chest infection. I had never been ill and had never smoked in my life although I did live and work in a smokey environment when I was younger.  I had a camera up my nose and the doctor looked really shocked.  2 days later I had a laryngectomy as I was struggling to breath, they also took a biopsy. Everyone kept saying I would be ok and not to worry about things, and the word cancer was never mentioned.  A week later I was told I had cancer of the larynx and had to have a laryngectomy. After two weeks at home I went into hospital and had the operation . I was on auto pilot and did everything I had to in order to get home as quickly as possible. Everyone said I was going a fantastic job!.

I have been home now for three weeks nearly and I have the most awful feelings that I wish I had not had the operation as I feel like my voice is not good enough to have a proper conversation and unless I get eye contact with the person I am talking to I am being ignored and therefore don't have an opinion on anything. I thought I should be feeling lucky, grateful and relieved but I am frustrated and depressed that this has happened.

My scar has healed well but the skin around my stoma is still inflamed so I have not been able to use the sticky pads and cartridges which I think will be easier.  I cannot understand why I feel so bad and feel ungrateful as I have had excellent medical treatment and my husband has been the best with emotional support and practical help too, he has been at my side throughout.

I am glad to hear you are 3 years down the line and are doing well, I just have so many mixed feelings I don't know where to turn.  I have also refused radiotherapy as the side effects frighten the life out of me, this is all to much to get my head around in 7 weeks.  I hope you don't mind me bending your ear like this as you have probably guessed my feelings are all over the place.

I would love to hear back from you as I do not know anyone else that has been through this.

Thank you and best wishes,  Chris x

Hi,

Thanks again and pass my best wishes to your husband, Good Luck to you both.

Chris x

Hi Chris.

You say laryngectomy do you mean a partial or total like I had, voice box removed, stoma in throat. as I had a total lary, I have a voice valve fitted that after a lot of patients learned to speak, did you have a large flap after the op. why I ask this is because people I have met ask different questions about how I care for myself now and after the op. did you meet someone that had the op. before you had yours to show you what the op. would look like after surgery, have you been told how to put on base plates and filters on they help with the fluid build up. like I say to people did you get a suction pump, and a nebuliser to take home, I use the nebuliser a couple of times a day it keeps the fluid thin so you can blow it up so it dosent block you chest and give you a chest infection, I have had 2 since my op, dont worry just go to the doctors and get antibiotics they soon clear up. that is the thing about our conditions we have to look after ourselfs more that other people, what have you been told what to do to look after your stoma do you get your equipment from countrywide supplies, they have a lot of different things I have tried a few as I find that some of the base plates have sticky stuff on them that pull the skin of so I have tried a different firm and they are better, another thing I have a small neck and it is sunk a bit so I have to have a large base plate to cover all of my stoma. ( hope I am not boreing you ). haveing a lary, there is so much to look after, I just get up go on the nebuliser, clean my stoma, bathroom ready for the day. I know from experance that they is not many people that have had our op, and a lot dont want to talk about it but I find it helps a lot to talk to someone that is going through the same, so they can pass on things that they find that helps. well I will leave it at that if you would like to talk more get back to me, are you on facebook as I talk to a friend about the same thing and I could in private give you my email.

Look after your self there is peop;e here to chat to in the same boat.

always helping michael.

Hiya Micheal,

Thanks for your reply.  I too have had a total larry and they had to take out part of my thyroid gland and other lymph nodes etc. My cancer actually blocked my throat and I needed to have a trachie two weeks before my laryngectomy as I could not breath.  The cancer also exited my neck and I had an open wound on the front of my neck.  Before the operation I told the surgeon I did not want opp if it meant doing a flap from my chest, so they were brilliant and just pulled up the loose skin from my chest instead.  I have a large scar from ear to ear which had staples and has healled brilliantly. The skin below my stoma is still quite red but the consultant said I can use base plates once I see speech therapist on Thursday.  I too use a nebuliser but I have been told to use it 4 to 5 times a day.  I bought a power inverter so I can use it in the car as we like to travel a lot.  I have a suction machine from when I had my trachie but have been told I shouldn't need it with the larry.  I have been ordering my supplies from countrywide too.  My neck on the left from the middle to half way up my left ear is still totally numb but specialist said it is nerve damage that should ease in 3 to 6 months.

My massive problem is that they want me to have 6 week course of radiotherapy with a small dose of chemo at start and end of treatment, but the thought of the side effects terrify me. Did you have any radiotherapy after your opp?  I would have to stay in hospital all week and go home weekends as it is too far to do journey every day.  The side effects I cannot deal with are the burns on the skin, mouth ulcers not being able to swallow or eat and having a feed tube inserted and too many more to list.

I know there will be people who say I should just get on with the treatment, as at least i,m alive and it will give me a better chance to keep it that way but I am truely terrified about being poorly and having to live with the long term side effects.

Anyway I will sign off now as I am going on and on.

I hope you are well and keep up with the advice to us who are still trying to get our head round things.

I am on facebook and have an e-mail but not sure how to put info on here so it is not public.

Take care, thanks

Chris x

Hi Joeninty

I just knew you would be so much help even though my friend went through this i am in awe at what she must have done with out us ever knowing. you are a star

big hugs and many thanks Luckyus

Hi Mermaid 1966.

I have just sent you a long book on another thread about radio etc, I see you have a total like me, I think I will give you my email address so I talk better to you, yes I am on facebook also if you want a chat, but talking about our problem is beter on email, if you want to know more I will put my email up for you.

I didny have a lary tube in when I went home yes I had radio, a feeding tube I will have to explain why etc.

hope to hear from you

michael.summerson@tiscali.co.uk.

Hi Luckyus.

Glad to be of help, hope I am helping you as well, the op. I and a few have had isnt nice but look on the bright side I am well and hopefully helping a few more, there are a few things that I have not said but it dosnt matter it outcome is I am better do most of the things I did before.

hope to hear from you again,

michael.

hi Micheal

Funny as it is, you and the others on this post were helping me before you even new i existed i read this for weeks before joining the site. and i bet others are reading this gaining help but never knowing how to join in. I dont think andy new what he started when he posted, between you 4 that were the start of this post you have helped me so so much.

Thanks again and again i still am so grateful

Luckyus