Diagnosis yesterday.

Hi Pauline, welcome to the group. It is shocking and scarey when you are told you have cancer, it is alot to take in, now  things are moving on and you have got your treatment plan you will start to feel a little easier about it all. The treatment is tough but doable, many of us on here have had it, and are here to tell the tale, and help if we can. Lots of people have the same fear of the mask as yourself, however many say it's not as bad as they thought it would be, when you go for your mask fitting,tell them you are worried, they are very good and hopefully  will ease your fears. If you have any questions or worries, just ask away on here, someone will always help if they can. All the best.

Regards Ray.

Hi Pauline. So sorry you have your diagnosis at last. 

To take things one at a time. Have a look at this link here Having a mask made

There is a good video there and you might like to take a look at the treatment link at the side of the page.

The radiographers making your mask will be very gentle and caring. You will be talked through it and it really isn't as bad as you imagine. To me it felt a bit like warm damp towel over my face. It has small holes in it and you can breathe without problem. Ask them to cut eyeholes in it. It makes it feel less claustrophobic during treatment. Don't be scared. 

As for being incapacitated, it's a matter of degree and we are all different . There's no getting away with it. you will get a very sore mouth and throat. You might not be able to swallow food. I was fed by nasogastric tube for a few weeks. Others have got away with drinking fortified Fortisips or Ensures orally. You'll be very well looked after. Nothing much will happen for the first two weeks with the RT and after that you'll get pain relief. The chemo might make you sick for a few days but you get anti sickness medicine.

All in all it's a bit grim but it's only for a few weeks and it will save your life.

Deep breath, get on with it and stay with us. There are loads of people here to give you a hand.

There are also bits and pieces in my blog that might help if you haven't already looked

Hi Pauline. Sorry you found it yourself  on here  none of us really want it to be long so yes treatment is pretty intensive I was 61 when diagnosed but if I can do it anyone can I was well and truly wimp I cry if I broke a fingernail but I got through it Dani is explained all about the mask making they are very good that they do it every day so they’re very calm and very reassuring please don’t be afraid of it I treated mine as my best friend it was going to get me through this and it was going to save my life that was my way of looking at  it. my blogs below might give you some tips and some help keep popping on here will all help you get through it.

Best advice keep of Dr Google stay with us on here and take everything one day at a time don’t look too far in front and you’ll get through it.

Hazel x

PS

i have a friend who had the same cancer as you and a year later she is well, has married her long time partner and they have settled into a new home together with their young daughter. So life is good 

Hi Pauline, Been there, had that done. Mask not so bad as. you expect. I had laryngectomy and now speak with the aid of a valve. Had 25 radio treatments, not pleasant but not too bad. Had last treatment almost 3 years ago so got used to living again ! . You will come through it so don’t worry ( too much) . Take care, Geoff.

Hi Geoff. Welcome to the community. So heartening to hear that you are doing so well. 

Hi Pauline. Hard luck but as everyone says on here it is manageable. Perhaps the most frustrating advice is that everyone's different. We all suffer from the same things but not all of them and not all at the same intensity: what is easily bearable by one is really tough for another. I had the same cancer as you and my treatment ended last December. i was given the all clear in April. 

My personal experience was that the mask was not too bad - as somebody else says its like a damp flannel when they're making it. Your first thought is "i cant breathe" but then you realise you can perfectly easily. 

I was advised to have a PEG (feeding tube into the stomach) fitted. I'm very glad I did - it meant I never had to worry about getting food down my throat. Towards the end of treatment and for several weeks afterwards, when I was feeling nauseous a lot of the time, this was a blessed relief. 

For me (and you can look up my post elsewhere) the worst aspect is still not being able to eat properly. And it's always just over the horizon when it's going to get better. It really does seem to get better but it's not knowing how long its going to take.

I took a lot of comfort from looking through these pages - knowing that lots of people had been through it and come out the other side and many were far worse off than me. Slightly annoying when they're better off than you (!) but you feel happy for them. And there's plenty of good advice here.

Best of luck, it'll be over before you know it.

J

Hello Pauline - sorry you find yourself here but this chat group felt like a lifeline when I got my diagnosis last month.  It's scary (almost surreal)  to get a cancer diagnosis and I, like many others, never thought it could happen to me - it almost felt like I was watching a film! But here we are and we will help each other throughout this bump (lump) in the road!

I had a mask made a couple of weeks ago and it really isn't that bad - quite strange and very sci-fi - but not as bad as I expected. Just see it as part of the process to wellness. It's completely perforated, so although the tightness make you think you can't breath for 1 second, you obviously can - just take a deep breath if your imagination starts running away!

I start treatment next Monday (6 wks RT + 2x Cisplatin chemo on day 1 and day 21). I had my left tonsil removed in May, it was biopsied and came back HPV+ which is apparently very responsive to RT.

Keep us posted and ask any questions. I'm about a month ahead of you so can share as I go along.

Helen x

Thank you, that would be great. PET booked for tomorrow.  Can I have ask you, I have  whats becoming a very painful throat and this lump seems to move about?? . Its becoming increasingly more difficult to swallow yet alone eat. Have they suggested anything to you to help?????

Hi Pauline,

I had a large lump on my tonsil, which I could really feel when swallowing and when lying on my back. But I had my entire tonsil removed last month, so now I don't have issues with swallowing or feeling a lump as such; now I just feel the scar tissue where the tonsil used to be (sort of dry, hard to explain) and scar tissue where my wisdom tooth was extracted on the same side right next to my (removed) tonsil. So, I've gone from one odd feeling to another completely different one!

Will you be having your tonsil removed? Or an op to remove all or part of the tumour? This may help alleviate the 'lump in the throat' feeling. Although, you'll likely still feel 'something' from the scar tissue and mouth trauma in general from having it removed, if that makes sense.

Helen x