Scared newbie

Hi Basbas

Hope your appt goes well today.

Linda x

Hello Aly

Just wanted to drop in and say Hi. I was also diagnosed with cancer of the soft palate and will soon be starting six weeks radiotherapy and two  lots of chemo. I am also very scared about what lies ahead when you read the side effects that occur but then you do hear of some positive ones too.. so, lets hope we can be the ones to post those positive ones in the weeks to come.

I am due a PET scan next Weds and I meet radiology, speech therapist and dietitian next Thurs. I have asked my doctor for medication to help me sleep and I have some medication to help the days where I still do get overwhelmed, those days are fewer now but sadly still happen. I found Mothers Day a very hard day.

I am also constantly popping painkillers too, sometimes codeine as my mouth has been a mess since my biopsy, 5 weeks ago which was under general anaesthetic.  All my stitches came undone within 48hrs of the op and now it is just an unhealed mess in my mouth and it worries me that radiotherapy will also be taking its toll on an area that is already in a bad way. I look at it and think, how will it ever be back to normal ever again. I struggle to eat and speak to people now, yet I am supposed to be building myself up in the weeks before therapy , easier said than done with my mangled up mouth 

Jo

x

Hi Jo as stupid as it sounds it’s nice to know what someone is going through like me , I think I’ve had all my tests now , like you I was put under general anaesthetic for a biopsy on my soft pal & uvula , they didn’t do stitches , they did explain before what they did but I was so scared I wasn’t listening ! Something to do with heat , I’m waiting for an appointment for my first oncologist meet , they did mention 2 chemo & 30 radiotherapy 6 weeks plus a peg feeding tube , I’m trying to eat as much as I can but I’m really not a big eater anyway & the pain/soreness doesn’t help , my hair has a mind of its own now too haha that’s my pride & joy , I do hope we can follow each other on our journey & help each other , what you’ve already gone through sounds horrendous Jo , you take care , keep in touch xx

Hi Aly,

Indeed, when I first became aware that something may be seriously wrong with me,  I was looking for others with cancer in the  'exact' same area and couldn't seem to find anyone.  So, without sounding mean, I am happy to meet you here too and to be so close in our therapy.  I have to have a PEG fitted too, no date as of yet.  I am not too worried about that as my dad had one fitted last year and the procedure was simple enough and he had no issues with it whilst it was in.  When my dads was removed they simply snipped the tube shorter and pushed it inside and put a plaster over the small hole.. lol .. job done , the small piece of tube they push in , simply passes through your body like food and he now looks like he has a tiny belly button on his side.  

Well I have very long hair too and its about the best thing I have going for me . haha!  So , I asked my consultant last week if the Chemo would cause hair loss, as tbh, that just adds insult to injury and she said the type I was having , Cisplatin,  would not cause hair loss but I may suffer a small amount of loss at the nape of my neck where the radiotherapy will be working around ( I can live with that) .  I hope that is true  .  I am due at my hairdressers on the 21st and I was going to cancel , I mean, why pay for hair that isn't staying put so I will confirm with the radiology team next week unless some of the lovely folk here can confirm on hair loss with this type of chemo .. 

From the day my doctor referred me under 2ww cancer path , weight fell off me from anxiety, I think I lost a stone in just over 2 weeks , and I didn't have a stone to lose, I am desperately 'trying' to eat as much high carb as possible to gain  weight back on but whilst anxiety lingers I don't think I will and much like you , eating is painful and after eating the easiest of things, my soft palate area is really aggravated.  

Anyway , I tend to ramble on too much , sorry ! 

I am ABSOLUTELY  by your side here 

Jo

x 

Oh the nape of your neck , thanks for that I wondered where they did it ( I know my hospital might be different ) what worries me with the feeding tube is cleaning it & putting the feed in me  I also have an appointment as I don’t even wash my own hair I go to them regularly, seems to me you’ve had much more info than me , what area do you live in Jo ? Im glad I have you to compare notes if I knew how to friend you on Facebook I would but I’m not very technical  I was feeling well Jo , I just thought I had an infection in my mouth , I haven’t lost any weight or lost my appetite, I feel fine apart from the sore mouth , antibiotics didn’t work or penicillin so my Dr referred me to the specialists that was back in August last year after having a sore mouth since June , I saw the specialist about 2 times from August to November , I never got any results through , I couldn’t get hold of anyone , my Dr had to keep trying to get through to them on many occasions , it’s only the last couple of weeks they’ve actually done something, all rushed xx

He’s right. Cisplatin  does  not cause hair loss. The treatment beam exiting at the back of your head will leave some hair loss but it will grow back. Some people do get hair thinning just through the stress of all this 

Thanks Dani , that is reassuring ! I would think any stress hair loss would have kicked in for me by now , but I wont be too presumptuous on that just yet .  

Hi Jo my hair was shoulder length I lost a crescent shape at the back where like Dani says  the beam comes out the longer hair covered it up My hair did thin but not that anyone apart from me noticed. I did use a special wela  shampoo can’t remember name if it was for chemo patients. I did have  cisplatin  and that DIDNT cause hair loss in the traditional way that chemo does so be assured in that rexpect it’s only  the radiotherapy that will cause hair loss at nape of neck. It started growing back straight away when treatmentbdinished. What I didn’t do was have any highlights out in for 6 months that killed me lol. 
Hazelmx

Just as a point of interest, men often lose some beard hair from the entry point of the RT beam; but unless you work in the circus as a bearded lady won't be a problem for you

It's actually made shaving a shorter process for me so no complaints at all!

Ah , oddly I don't have Facebook, never really had time for it , I went there briefly but let it become dormant .. life is/was/still is/may be more so now,  hectic so just left it alone.

My sore throat  was much of nothing really , started end of December into Jan but nothing that I even really took painkillers for , then noticed it looked a little odd and lopsided in my mouth.  Like you,  I got antibioctics but nothing changed  then I noticed a small lump on the left side of soft palate  so thought I would zip along and see the Doc , when she said she was referring me to rule out anything more serious , it felt like the floor had opened up and I was in a never ending free fall and from then on the swelling seemed to just get bigger and bigger and the larger it got the more uncomfortable it became. Sadly, the biopsy was what did me the most harm , well the stitches rejecting. 

You must be gutted with those delays and lack of responses , I know I would be .  I think myself lucky that mine kickstarted just when covid rules were lifting but I still haven't had covid and it now worries me and I oddly wish I had had it and got it out the way, though of course some get it repeatedly anyway so I guess its  never really safe.,.   I did even think what was going on with my mouth was a result of my last booster which I had 15th December as it all seemed to happen after that , but of course it was a  pure coincidence. 

I am bordering Hereford and Gloucestershire. my daughter schools in Herefordshire , but I am medically under Gloucestershire / Cheltenham hospital. 

I haven't  had my Cancer staged yet, maybe that will follow my PET scan, I know lymph nodes are the normal got to spread with throat cancer and my consultant didn't seem too phased and said any lymph nodes would be dealt with via the radiotherapy / chemo etc if they showed to be affected.  My biopsy result took quite a while (5 weeks) and I think my process is a little out of kilter with others.. lol .. I have a habit of having to be different to the norm,  even my family call me Calamity Jo (should have used it has my profile name lol) . ...

I think I know why I ramble too much ,,, I can't speak too much at the moment so I make up for it in written word

Lets hope any interaction with the PEG tube is brief for you or not at all  ..some do actually make it through therapy without having tubes , we can always hope

Jo