Hi there

i was diagnosed with ovarian cancer and it felt like a life time of waiting to see if it had spread after my chemo. I totally get it's the unknown part I think that scares us the most. I'm one of the most impatient people ever so I understand the stress involved in waiting for that call. It will come and when it does whatever the outcome that's the time YOU then take control. Please listen to me when I say it will pass. If you ever need to chat I'm here

normajean

Hi Al

Its been some darn fine weather this week .  I have been getting out on walks too whilst I can .  
 

My wound has almost healed over now but the scar tissue is a lumpy mess and feels totally weird  ,I guess the sttiches would have kept it neat and tidy if tthey had stayed put .  The issues I have is the soreness I had already pre biospy but I managed to eat a pizza and cheescake tonight - first solid food for 3 weeks .  Everyone  says the same about eating well now whilst you can , i dread the thought of losing any more weight - not got much to lose and even when i do eat all the bad stuff my anxiety burns it up  ..  

Lets hope you breeze the treatment like you have the biospy , if you start before me , I may need hints and tips 

Off to stroll the Malvern Hills tomorrow , weather cools down after the weekend ..  

Have great one and catch uo soon

 Jo

x

Morning Al and Sue 

Hows things? any updates? .  I was back at  ENT yesterday. I was told last week to just turn up but that did not sit well with me so I emailed my CNS nurse and she told me to arrive at 10am.. well come 11:30 I  still hadnt been seen , asked what was going on as so many were just arriving and going in ahead of me .. I was then told I was next, however another 5 still went in ahead of me, I was finally seen at 12 noon only to be told my Biospy final result was still not back.. I could have cried afer waiting for 2hrs 15 minutes .  So,  I had a bit of a whinge that since last weeks appt , I had no call for PET scan, no maxfax appt for teeth, not appt for mask etc etc.. so , CNS nurse said she would sort Maxfax whilst I was in and she did manage to get me seen almost immediately , which made my day a little bit more worthwhile .  

Was told by Dentist two teeth would not survive treatment and needed removing both old filled teeth that were more filling than tooth , so she got that booked for next day (today).. I am just now home , less two teeth , with a very numb mouth, one tooth was a ***** to remove.  Now told to stick to liquid food today, haha  , I only started eating solids again end of last week so I'm back to soup. I have two stitches in my mouth (from the ***** of a tooth) , will they stay put I wonder or make a sharp exit.  Hey ho! 

I am now told to go back to ENT next Tuesday again (3rd time lucky)  with no set time on the hope the biopsy is back.. it will be 5 weeks past biopsy by this time.  At present it is being diagnosed as Squamous cell cancer to my soft palate with  6 weeks radiotherapy and 2 Chemo required .. if biopsy shows deeper tissue then that will change and surgey will have to take place..

I did my MRSA swab ready for peg surgery whilst in yesterday too .. 

So,  my treatments cogs are a little jammed at the moment .. but I have ticked the teeth issue off my to be done list  .. lets hope I dont feel like I  have been hit by  Will Smith when my numbness wears off  (lol)..

Love to both and anyone else who wants to join in !

Jo

x  

Hi Jo, 

sorry to hear about your diagnosis, I unfortunately got mine yesterday too, and I have been diagnosed with a rare salivary gland cancer :( in which they hadn't really heard off. 
i felt like I had been hit by a truck, I was like I'm 29 years old this can't be happening :( 

the next steps for me are MRI , chest x-ray and the sit with the MDT team next week. 
 

X

Hi Jo and Sue,

Glad to hear you have got things moving Jo, if all be it a bit slowly, and good news that it was only 2 teeth that had to be removed (remember how stressed I was that I would lose teeth during the biopsy?.....I dodged a bullet there!) You sound much more resolved now about you upcoming treatment. 2 hours wait!......grrrrrrrrrrrr......they have no idea how stressful waiting is!.....having teeth out is my specialty!....for some reason I have hardly any left on my top row but all of them on my bottom row....I once joked with my dentist that I must have Aliens blood for saliva.

I had my PET scan last night and it was a bit of a doddle tbh (I actually drifted off under the scanner :laugh:). For some reason I started to panic when he was puttting the cannula in.....think it was cos he took about 5 minutes to do it....I still can't watch the needle going in but I'm fine once its in. It was funny being escorted to a special toilet because I was radioactive, I joked about being a 'Ready Brek' kid but he was too young to get it :laugh:

Anyways he reckons my surgeon should have my results (along with the lymph and tongue biopsy results) for his team meeting on Thursday morn when he will discuss with his collegues the way forward for me so I'm expecting a call either Thursday or Friday.....stress levels are up hoping that nothing else appeared on the PET scan but no matter what I will beat it.

All being well I should know by the end of next week exactly where I'm at and what treatment I will need.

The thought of having a peg fitted fills me with terror even tho I know its not a bad procedure and I'm hoping to convince my surgeon I don't need one........please keep me updated on how you get on with that.

So glad you have picked yourself up from the devastating news last week....humour is my way of keeping sane going thru all this.

Keep ticking those boxes

Sue, how are you doing?

Al

x

Thank you, and you too too. I'm still new to this chat page I keep trying to read peoples stories. 
 

I'm hoping to be able to find someone to talk to too.. so hopefully I could join in with your 3's talks. 
 

I'm sorry to read your diagnosis and story :(, how long after your results did you start your treatment? 

thanks 

S 

Hi There 

I am so sorry to hear this .  Words can't really describe the feelings when your are diagnosed and the waiting period for diagnosis is sheer hell, I know.  I was kind of prepared for my outcome as I googled my symptoms for hours on end and always came back to one answer but even when it is officially given to you,  that state of numbness is beyond description.  I have cired , lots,  over the past week.  Silly little things upset me , Mothers Day was one.  The only thing I cling to is it is treatable but the treatement can be brutal.  Like Alan, I  personally know several survivors of oral cancer.. 

I see someone diagnosed with a rare nasal cancer on the Macmillan site a short while back and they were very worried and one of the chaps there said that just because it is rare does not mean it is not treatable, but simply not heard about as much as Breast cancer or prostate cancer, etc  and this is very true.  Head, Neck and Throat cancers have very good outomes and most treatments are the same for this area.

You are very welcome to stay here on this chat. May I also suggest joining the Head , Neck and Throat group on Macmillan site  , you may even find someone who is also going through or has been through  this cancer on there  .. I am there too, so feel free to find me there, my user name is JustJo and I am in the group I  mentioned.   They are a lovely bunch .. and the ones who are now on the otherside (post treament)  provide so much support and advice and will be with you every step of the way . 

x

Jo 

Thanks Jo, I have added myself to that group. And just by a search found a lot of forums. 
i hugged my 6 years old son so much last night and just didn't want to let him go. Made the desicion not to let him know until we know more of what the treatment is going to be. So far more surgery has been discussed. 
i have never been around cancer, the last person I knew was my grandad and I was a child then. So I'm hoping these forums and threads will help. 
i haven't cried yet, well I had a couple of tears when I rang my partner as my dad came with me for the appointment other than that I feel like a bit of a monster for not crying when I think I should be. 

thanks 

S x

Hi Al ,

You are as upbeat as ever.. love it .. lol

Yes, PET scan is not a worry at all , how long did it take out of interest.  I heard it takes longer than a MRI as the substance they put in you has to travel around your bod for a while.. perhaps iI can speed that up with a few star jumps lol.. Did you glow in the dark too? lol

Peg , meh ,, I  read that it can be done with or without sedation.. I will probably say bring on the drugs and then they say you wont remember a thing, although still concious  , I did hear that possibly an overnight stay to be trained on maintaining it and using it , but I will tackle that as and when that arrives.  Tbh, I would prob go for it Al if I were you.  I have a friends on Macmillan site (you should join there too) who are so glad they had one fitted as eating and drinking and taking meds will be hard going around week three of therapy, these peeps also treated for tongue cancer.. or you could speak about having a nasal gastric tube instead? so up the nose and into the tum, again just so you can keep up with food , fluid, meds and treament moving on .  

At this rate you will be before me Al , still not even had my PET scan .. 

Re the teeth removal, I was told that no dentist treatment should be done for the first 2 years after therapy so they remove any that look like they could end up needing work on in that time frame? have you been offered a scan to check your teeth (lol at the Alien blood btw). I was given a new toothpaste too, special high flouride and told I would now be using that forever and it was now on repeat prescription for me and flouride mouthwash. again to keep teeth extra strong and try and prevent any chance of  dental treatment  later on .. seems like they really dont want you in a dentist chair after radiotherapy.  (perhaps ask your team about this to be safe) .

Is that this Thurs / Fri for your results?.. yep , I can imagine anxiety creeping in, i have this phase still going on too... (uff) 

Jo

x 

( I hope Sue is okay , but on the upside, her results were very promising , so she may no longer need to be here ,and rightly so )