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Virgin throat Cancer sufferer

Vatch
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Hi all

I have just been diagnosed with Throat Cancer (28th April) and although at the moment Docs can only find the secondary site (right neck lymph node), they are still looking for the Primary - I've had my CT and PET CT scan done and nothing found, so I am now going in for multiple biospsies to find that prime site

Although this started off very rocky I have been told that its not only treatable but cureable, so I suppose i am luckier than some on here and aware of it

I am a very positive person and am just taking this all as it comes to me .... as I am sure you are all aware there is a lot to take in when you are first diagnosed

I think the biggest problem with me at the moment is i dont feel ill .. I just had a sore throat in Feb, which did not go, my glands were up, but one never went down so went to the docs who sent me to the hospital and within a few weeks i was diagnosed

I am sure at some point the treatment is going to hit me but i am still unaware to what extent ... and i know its different for everyone

Whilst Docs are still trying to find the prime site I am getting close to starting my Radio and Chemo Therapy for 6 weeks .. I have also been told that the Chemo should get rid of the secondary tumour in my neck lymph node so they are hoping not to operate and i wont lose my hair ... but i will deal with that one when i get there

As I said, I have difficulty defining how ill i really am (not as bad as some of you on here i know) I still play Squash, Football and take my wife Salsa dancing, but i guess whilst going through the treatment i am going to have to slow things down and look after myself

So i just wondered if any of you on here had gone through similar treatment and if there any advice you would like to offer

From what i can see constipation appears to be a big issue and some suffer with terrible sickness

But from the point of starting my treat whats my rollacoster to recovery

Oh and any information about having a peg fitted and how that works and for how long going forward would be appreciated

onwards and upwards

  • Offline in reply to Deb67

    Hi All

    Sorry not to have checked back sooner, its all been a bit of a whirlwind and Ive had to put some work things in order so as to create some free space to concentrate on getting better.

    I am now fittrd with the Peg (Monday) and a PICC line (Today) and tomorrow I have lots of different appointments including a date with the mask.. I think the mask is the thing I fear the most to be honest and will let you know how I get on. This blog has given me hope, I am a natural optimist and strong willed. I hope I can summon up as much courage as you all have.

    It is a very scary time, but I have a fantastic partner and three kids to live for.

    More to follow over the next few days.

    Mike

     

  • Offline in reply to Mikeymike

    Mikeymike hang in there I remember those days then and everything just appeared so massive so daunting and so important ..... But now I am 11 months everything else is a breeze.

    for me the peg fitting was the worst I was in pain for days but it gets better quite quickly.

    the mask fitting is just another massive step in the process, you know you are having your mask fitted but when it gets fitted its a strange terrifying feeling.... But be patient this mask is your friend mines called bob and hangs in my garage .

    i am not sure if I gave you my blog but it details all the stages I went through its on gammaraygary.wordpress.com/about/

    shout if you need anything you are about to enter a time when you are going to need all the help you can get from those close to you and your dear friends....take that help as it's not just you going through this.... I sometimes think having cancer, going through the treatment and being looked after by my darling wife was the easier option....it's hard on those who watch you go through this too

    There are a lot of people like me who are now out the other side of what you are going through we are all here to help you through this

    goodluck m8

  • Offline in reply to Deb67

    Hi Debbie!

     

    ive been absent from this site for a little while and wanted to cat up with how you were doing the accidentally came across your message on Vatch's thread. So glad to hear things seem to have gone well, you brave brave lady! Keep us posted! I hope you're managing to get some rest. Much love.

    Nicola xx

  • Offline in reply to Mikeymike

    Hi Mike,

     

    just came across your post and wanted to offer my sympathies for what you're going through but also offer my help and support. I've been through similar and I am now 19 months in remission! Other than the scars you'd never know such an awful thing happened to me so you will get through this difficult time and your little one will keep you going as did mine. Best of luck and keep us posted.

    Nicola

  • Offline in reply to Nicola2209

    hi all

     

    I hope you are all well and mending well

    Big day for me today it's a year to the day that I finished my 6 week programme of Chemo and Radio Therapy ... and so celebrate I am out strutting my salsa moves to a live Cuban band ...

    It's amazing looking back on my year and the last 6 months have been amazing health wise.

    The first 6 months out of treatment was hard and crap, but now I am alive, i have some saliva, 80% of my taste back and I am back salsa dancing, back on my mountian bike, back playing 5-a-side football (although i spend most of my time playing in goal) and last week i played my first 18 hole round of golf in a cancer charity match ( I need a lot of practicing), still not fit enough to play squash yet, but it will come.

    So as you can see I am nearly "NORMAL" again and although i still have "routines" to help me through the day, i look as if i function like any normal human on the street ... which is all i wanted.

    Guzzle looks like you a lapping it up on holiday there.... Nicola, Irene, Simon (aka ...) Deb and everyone else I hope you are enjoying the summer and lets decend on Guzzle soon

    To all the rest of you survivors out there ... life is good and I wish you all the best

    Vatch

  • Offline in reply to Vatch

    So happy for you, congratulations!

  • Offline in reply to OC

    Hi Vatch

    I hope you had a great time dancing to the Cuban band!

    It's great to hear how well you are doing.

    Thanks for keeping us updated.

    Best wishes

    Jane

  • Offline in reply to Moderator Jane

    hi all

    I thought i would just post an update as having cancer is not just about going through the treatment, it's also about dealing with the impacts of the treatment

    Well if you are following my posts, I am now a year and a month out of treatment for throat cancer and doing ok if i say so my self, although my review team keep telling me i am doing brilliantly, but i guess they see how this type of treatment impacts on a wide verity of people, so i have to bow to their superior knowledeg there.

    My posts have slowed down somewhat as I have been enjoying the fact that i can once again get back out into the human race and appear "Normal" once again. I have no visible signs of what i have been through and even those who know what i have been through, appear to treat me as they did before they knew anything

    I found a lot of my close male friends avoided me and now that i am back in circulation, they ask me nothing about it and just go on as nothing happened ... and why should it be different? I like it this way.

    Physically

    1. I still sleep like a baby at night and once i am in bed.... 5 minutes and I am out and thats for a full 8 hours, or until my alarm goes off for work. Before I only needed about 6 hours and even at the weekend I would get up at about 7:30. Not now ... I am laying in bed.

    2. Taste --- a big thing ... you just don't know how socialble eating is and when you have no taste, how anti-social it becomes. But now I have a large element of taste back I can enjoy a meal and be sociable with it at the same time. Taste is all over the place though and i risk offending my wife at times when she cooks a shop bought pie and i ask "Does this pie taste bland or is it me?" I have been lucky so far, as they have been bland shop bought pies. I will not say that I am 100% back on taste, I have no craving for Chocolate and stay away from icing as it tends to agrevate my teeth, but in the main i can enjoy food.

    3. Energy, well before my treamnet i played football, squash, golf and went salsa dancing on a weekly basis. Now I still salsa dance, had my first couple of games of golf (and did ok), I am back to playing 5-a-side (but spend most of the time in goal) and I am no where near being fot enough to play squash. but I have now bought myself a mountain bike and try to get out for 20 mile rides and i have joined a gym to try and build up all the muscle i have lost.

    Due to losing just over 3 stone and losing about 60% of my muscle tone i do get a lot of issues with lack of strength, I i can only take my dogs walking for about 40 mins before my back start to cramp up.

    My neck, through the tomotherepy, is still very restrictive in its movement and I am having physiotherapy to try and a) straighten me all up and b) extend the range of turning and bending my neck ... but i have a great physio therapist who stretched amd massages all though tightened neck muscels out.

    Oh one good this is that the skin around my neck is as soft as a baby's bum, as I suppose in reality i have had a chemical peal ... plastic surgery ... but enforced, not through choice.

    I am now up to bi-monthly rewiews at Addenbrookes and all that happend now is that I go and get a brilliant clean of my teeth then the doctor sticks that uncomfortable camera up my nose and down my throat. all is ok there.

    So as you can see ... if you are going through this treatment ... hang in there it gets better and I am not the only one on here that can vouch for that ... Superman Guzzle is testiment to that

    That's me until the next time

    Happy Recoveries

    Vatch

     

     

  • Offline in reply to Vatch

    Hi Vatch,

    Though not on the cancer journey myself, have in the past dipped in and out of your thread. Am absolutely delighted that you have 'reported back' and updated your story and just wanted to wish you all the best going forward. What an inspiration you (and Guzzle) are to anyone going through treatment at present. Sending very best wishes and virtual hugs.Jules

  • Offline in reply to jules54

    hi all

    I just thought i would update my post and yes I am still very much alive.

    For those of you who are not aware of my tale, I am now 15 months out (Aug-14) of Chemo and Tomotherapy (radiotherapy) for throat cancer.

    After losing just over 3 stone I have now been able to put back on a stone, but most of it has only just come back on in the last few months. My wife thinks thats because I am now at a gym and muscle weighs more that fat ... i like that theory so i am sticking with it.

    After losing all sense of taste, I now have most of it back, but some foods (only a small amount of) I have not taste for at all) ...strange that one.

    I still have trouble swallowing a pizza or sandwich, but with the help of liquid, it gets down

    One of the benefits of the Tomotherapy is that i sleep like a baby over night, by the end of the week I am tired, but its noticiable.

    My voice still has no power to it and first thing and last thing at night it goes croaky. Still I am off to my beloved Spurs Europa game in a few weeks time (first game since my cancer) so I expect to have no voice the following day.

    After finishing my treatment in Aug-14 I phased myself back into work from Oct-14 and by the end of Nov-14 i was back at work full time. That was hard in the early days as it takes me 1 hour to drive to work and there were days when i look back, that i should not have driven home.

    Now I am fine though and can copy withthe pressuresm hours and driving to work

    Although my treat during my cancer was excellent, the aftercare on the NHS falls way below standard ... in my ara anyway. I joined a gym and got specific physiotherapy from my work policy and i can honestly say that these two things have been a major play in my getting to where i am now

    Now

    - I can walk my dogs, without getting muscular pain atthe end of the walk

    - Getting back to my intermediate level Salsa dancing class

    - I play outdoor 5-a-side and beginning to spend less time stuck in goal now

    - I brought a mountain bike and can get out for 2 hour 18 miles treks in the forest

    - I have also managed two rounds of satisfactory golf, although i had to use a trolley (I usually carry)

    - I have also been driving a lot recently, attending university open days with my daughter

    So from the above you can see there is a life after treatment.

    Just thought i would update you all

    Guzzle, Debs, Nicole, Simon, Irene, Jules, OC, space1999 and everyone else I ahope you are all doing well too

     

    Vatch

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