Hi Nicola,

Sorry to read that you're having a few problems with your graft and ulcers. Any oral pain seems magnified doesn't it? Great that you're managing to eat fairly well though. Keep experimenting with the diet! It  was interesting to read about your Bailey's experience - I would have assumed it would have slipped down being cream based, but obviously the whisky element of it caused the burning sensation. Bless you! Good news about a few sips of wine though!

Work is going well. This is my first full time week and I do feel as if I've never been away. The majority of my role is office based and I have a certain amount of autonomy within the office ( in other words, I can do as much or as little as I like! Haha!) It's the class teaching that's most draining! 30 little darlings all wanting attention! Luckily, the staff have ensured I have little planning to do, just delivering and marking! I also have the advantage of knowing that my working schedule is punctuated with regular holidays!

You asked how I knew when I was ready to go back. I think I began to realise that my stamina was improving daily. I seemed to be planning and achieving more and falling asleep less frequently during the soaps!

If my surgery had gone ahead as anticipated, I wouldn't have gone back, but this temporary, medical limbo helped me make my decision (plus the salary is welcome!)

I would say, don't rush to go back! We all 'heal' at different paces. Take advice from your medical team and also be guided by your own feelings. You'll get there, but make sure you're physically and mentally ready.

I'm keeping everything crossed for you honey! The waiting makes this process much trickier for us all! (I'm counting the weekends until my scan so I know how you feel!)

Take care, hugs to you, Jo xx

Hi all hope things are going well and everything crossed for ultrasound Nicola. Thinking of you as I know waiting is horrid. My shoulder and neck feel great. Just a numb ear. Its hard to believe I had cancer as I feel so well. Radiotherapy up next. Tube or no tube. That is the question?

Going home tomorrow. Could have really gone today but two nights nor bad.

Speak soon. G.

Hi Nicola,

I'm sorry to hear that you're waiting on a result again - isn't that always the way with these things? I agree with you in that I don't think the doctors, consultants and nurses appreciate the draining impact that all the worry and waiting has on us.

Shame about the Baileys. I'm able to drink non-chilled lager although my tongue does get sore after a couple. Scotch and 'flat' non-chilled coke slips down a treat though - give it a go if you like scotch - it makes the world seem a better place.....

I'm still having the awful night-sweats and I get the PET scan result next Wednesday. The extra tooth, as I call it, is still there and is now quite large. The oncologist says that he thinks it's bone. I'm still waiting for the hospital dentist referral to come through. The bone/tooth doesn't bother me as much as the night-sweats. I'm back at work on 4 or 5 hours a day - it's quite draining but it's getting easier. It was good to catch up with people at work and I found it strangely uplifting.

One piece of good news is that my ulcers seem to have cleared up. They did last much longer than normal ulcers which go after a week or two. Hopefully yours will go the same way.

Keep us posted on how things are going, Nicola.

Go on, have a scotch!

Simon XX

Hello everyone,

Good news - the lump in my neck is benign. Apparently it's common to have these nodes in your neck but mine is quite large. I think they are going to keep an eye on it. So I feel I can finally enjoy being in remission! Thanks for all of your supportive messages yet again, I honestly don't know what I would do without this forum sometimes. It's so comforting to discuss these things.

Guzzle, I agree with Simon, get the tube! I was told I wouldn't need one but I requested one anyway and I'm so glad I did. There is no way I could have managed without one. Now I've requested it be removed and they've said not yet! Silly to think they originally told me I wouldn't need one, now they say I must keep it a bit longer. Glad to hear you're feeling ok though. I remember feeling really well too so was strange to feel so well at the same time as knowing I had cancer.

Simon, I didn't used to like Scotch but now...who knows?! My tastes are completely different so maybe I'll give it a try. We're out for a Mother's Day lunch this weekend and I'm going to have a three course meal (well try, anyway) so that'll be interesting. It's also nice to feel I can do something so 'normal'.

I had a little chuckle about your tooth (only in a light hearted way of course) it's really odd to think that can happen when you've had a full set of teeth for years!

Jo, thanks for the advice on returning to work. I'm struggling with the fatigue at the moment which I'm told is normal after the radiotherapy however it doesn't seem to be improving. And of course when I go back to work it's not just a case of getting myself up and ready, it's a case of also getting a toddler up and ready too, then doing the nursery drop off and pick up etc. I think it will just come to a time where I will have to bite the bullet and go for it, then deal with the tiredness at the time. Well doe you for going back full time though, sounds as if you have supportive colleagues, as do I.

So off I go to finally enjoy being in remission and not have to worry about this or that for once!

Speak soon,

Nicola xx

Hi Nicola,

Absolutely brilliant news about the lump. Hopefully you can now begin to relax and concentrate on your recovery.

Good luck with the Scotch - remember, flat non-chilled coke is the key.

Best wishes to your and your daughter.

Simon XX

Delighted for you both. Have a wonderful mothersday.Im at home and apart from a numb ear/neckfeel good with full shoulder function. So pleased about your lump for you and your daughter. Ill be really relying on all this expertise for RT. What do follow ups look like for you all? I.e. Intervals,scans etc?

thanks team!

Hi Guzzle,

Glad to hear you are at home and feeling ok.

You will have regular reviews throughout RT, mine were weekly. They checked my mouth/tongue, checked my weight, prescribed anti biotics or pain killers and creams to sooth the skin etc. and gave advice. I also saw a dietician each week to give advice on eating and tell me how many of the fortisip drinks I should be having. I also saw my specialist head and neck nurse and speech therapist each week who would just check up on me to see how I was doing and I met with my oncologist a few times during the six week treatment period. I also had to have weekly blood tests during the treatment as they need to check this before giving chemo.

Since treatment ended I was seeing my head and neck nurse, dietician and speech therapist weekly, then fortnightly, now it's every three weeks. I've seen my oncologist probably twice since RT ended and I won't see him again for another year now (all being well) and I have a check up at the ENT clinic once a month and I will continue to be seen by them for five years. My head and neck nurse is always at the end of the phone though. The support is amazing and I really believe that our NHS steps up when dealing with cancer patients.

I had my baseline MRI scan a month ago and I don't believe that I will have another scan now.

Let us know how you're doing and when you will be starting your treatment. All the best.

Nicola x

Fantastic news, Nicola! You are really having a bumpy old journey.

Debbie

Hi Everybody

Quite a lot of activity on here since I last checked in!

Nicola, I couldn't believe my eyes that you were having more bad luck and waiting for further scan results.  However delighted to read your latest post - phew! Have you had your 'back to work' counselling session yet?  Was it helpful?

Guzzle, welcome to the club doesn't quite right when it's the last club on earth you want to be joining.  However it sounds like you're already finding it helpful, as I certainly have.  I finished my six weeks of RT (with weekly chemo) on 31st January and am starting back to work next Monday - very gradually, 3 hours a day, 3 days from home and 2 in the office.  My treatment and support pretty much echoes what Nichola has decribed although there will be variations from hospital to hospital.  What I can't understand is that there would be any question of not having a PEG.  Much as I hated having it put in, I couldn't have done without it and mine was inserted as 'routine' i.e. they didn't ask they informed!  I had mistakenly thought I'd be eating properly with my PEG removed before I started back at work but it looks like that is some way off.  I had my two month checkup yesterday and while they are very pleased with my progress and happy with my graduated return to work, they did tell me I need to be trying harder with my eating.  I guess I knew that!  I am finding that I am struggling to eat almost any type of savoury food but managing sweet stuff OK - cereals, milk puddings, fruit (it used to nip my throat but is fine now) etc.  Having given myself a kick up the rear yesterday I tried to tackle a small plate of mince, potatoes and veg and managed about half of it before feeling a bit nauseous and didn't want to risk losing it altogether so gave up and followed with a yoghurt.  I have to keep trying though because I'm told if I persevere it will get easier.  I can't really describe what the problem is, not just the taste, the textures too.  I could quite easily have given myself the nickname Guzzle before all this happened to me and can't believe I now have no appetite or interest in food.  Hope that doesn't sound too negative.  As everyone will remind you, we are all different and have quite different experiences on the eating front.  Hopefully it won't be too much of a problem for you, but I would certainly agree with Simon and Nicola that if they are giving you a choice re the PEG, you should certainly accept it.  Best of luck with your treatment and keep using this channel to let off steam and share experiences.

Simon, best of luck with those PET scan results and hope the night sweats and extra tooth don't give you trouble for much longer.

Jo - delighted to hear your return to work is going well.  I will heed your advice not to overdo things!

Between paragraphs I've been tackling some chicken, pork and mushrooms in white sauce with rice.  As usual am struggling after a few bites.   They say my taste buds might also improve when I'm off all my meds which are gradually being reduced now.

Best wishes to you all and everyone I haven't mentioned!

Irene x