Hi Annabel,

Thanks for letting me know about the book.  I got myself a copy and can't put it down! It's written well and some of the ways Lia Mills has so described things are spot on and I can relate to a lot of her thoughts and feelings.

I was looking through the discussions to find an update with you and your journey and how you are doing but couldn't find anything recent. I hope all is well with you.

Nicola x

Hi Colin,

I hope all goes well with your operation and that it's nothing too serious. Will be thinking of you.

I'm doing ok, dreading the PEG procedure tomorrow but it's just another hurdle. Treatment to start in two weeks from now and just want to get on with it now.  I'll let everyone know how it goes. My mask will be made on Thursday, this has all been delayed a couple of weeks due to my teeth extractions which is frustrating but all will be finished by christmas thankfully.

Nicola

Hi Jo,

I've been thinking of you, how is your chemo going? Is it like radiotherapy where the side effects don't show straight away? Or do they kick in immediately? Were your hands cold afterwards? It's nice that they warn you of such things, it shows that they care and we're not just 'another patient' to them. I feel like a bit of a celebrity when I go into my clinic at the hospital as everyone who works there knows who I am and what I've been through and can't do enough for me. I'm finding it hard to gain weight, I put on a couple of pounds then lose them again but I'm trying to eat well and have the odd takeaway too! Is the chemo affecting your appetite?

You sound so positive, keep it up as before we know it our treatments will be over and we can think about getting back to normal again.

Speak soon,

Nicola x

Hi Simon,

Good to hear your throat is recovering, lets hope your tongue catches up too. You have approx 9 weeks to get it in order ready for your Christmas lunch! I hope your plan works out for you.

Looks like my Christmas lunch will be a nutrition drink via my PEG tube this year. It's is being fitted tomorrow, which I'm not looking forward to. It seems that you were lucky enough to have it done under a general anaesthetic. Oh well, at least my teeth came out whilst I was under a general, I don't suppose I could be lucky twice!

I expect the thrush you have in your mouth is a result of all of this treatment and being run down. Funnily, that was what my doctor diagnosed me with when I very first went to see him about the ulcer on my tongue which turned out to be cancer. How wrong was he?! As far as I'm aware, it's fairly easy to treat normally so I hope that clears up for you soon. Sounds as if you are well on your way to getting back to normal again.

Speak soon,

Nicola

Hi Garf,

I can not imagine how awful it must have been to have five teeth out whist being awake and aware of it! I think that would have hindered my decision massively if I wasn't having a general anaesthetic. Well done to you for enduring that! But yes you are right, no more tooth ache on that side of my mouth, it also makes brushing and flossing a lot quicker too!!

The swelling is still there on my tongue but I'm told its normal and I shouldn't worry about it so I'm trying not to. I've too much else to think about right now so I've put it to the back of my mind for now, but I do hope it goes back to normal eventually as it was all looking really neat before. Smiling and laughing hurts at the moment as there are still some stitches in my mouth but soon enough my mouth will be a lot more painful! I still can't quite get my head around the fact that this is all happening to me. I wonder when it will feel real.

Take care,

Nicola

Hi Nicola,

Just seen your post and wanted to wish you love and luck for tomorrow!

Sadly, the chemo effects were pretty instant! I left the hospital with tingly fingers and a numb arm. I then woke up in the early hours of Thursday morning feeling so sick! Got very upset by it  all! I now know I need to take 2 anti sickness tabs at bedtime, after the next infusion! Lesson learnt!

As the days have passed, I don't feel too bad, but like you, weight is becoming an issue! I've lost 2 lbs since last week and although my appetite is good, the nature of the chemo is causing diarrhoea! Taking more tabs for this too! Boy, do I rattle!!

On Saturday night I had a well known brand, burger for my tea! Just fancied one! And I was a bit of a rebel and had a bottle of coca cola! (Fizzy drinks and a stoma = high winds!) maybe this storm is all my fault! Hehe!

The community nurse rang me today and she's dropping me off some more high protein drinks! Hope these help with the weight gain!

Celebrity status eh? Quite right too! I've no doubt you've become well known because of your attitude and the way you're approaching your treatments and recovery!

Keep smiling, honey! 'Normal' is just around the corner for us both!

Let us know about tomorrow,

Big hugs, Jo xxx

Hi Nicola,

Lovely to hear back from you, and I am glad you got the book and have enjoyed it. You are right it is well written. If my memory was better than it is at this age I would have told you about it before your op. I think overall it's a very positive read. I hope it encourages you to continue to write your thoughts and experiences. Such things might help others in the furure.

As for me and my journey, I am fine as far as I know my dear, My treatment was just the total hysterectomy because I was lucky that my cancer was found at stage 1 grade 1, so I am very lucky. The oncology nurse on my last visit told me they do not expect it to return in someone of my situation. I still have to go for 3 monthly check ups for 2 years and then 6 monthly check ups for 3 years.

I still come on here to help others if I can because I got such a lot of support when I was pulling my hair out with worry. These people have become virtual friends and are very important to me now. I sometimes think maybe I don't need to come on here anymore but if supporting someone can help then it's worth it. Some of the chatting on here is really good and funny. And why shouldn't we have fun just because we have a cancer diagnosis. We are all more than the sum of our parts.

I am really glad you have got through your operation so well, I am sure tomorrows minor op will go well too. I will be thinking of you and look forward to hearing from you afterwards, hugs

Annabel.xx

Hi Nicola,

I just wanted to join Annabel and Jo in wishing you the very best of luck for tomorrow.

You have been through so much up to now including some extra that you weren't expecting, I don't know where you find the strength to not only carry on with the treatment but to actually want it to start as soon as possible especially while looking after your daughter. Having said that I am sure she is a good source of strength for you.

Take care and I would say keep smiling but since that is a little painful right now I will settle for a minor grimace.

Garf, x

Well you will never believe my bad luck. The 'PEG' procedure failed! The doctor accidentally pierced my stomach lining as he was piercing the hole into the skin of my tummy and all of the air from inside my stomach came flushing out and is now stuck between my stomach and my skin. So the procedure couldn't continue. I'm now left in absolute agony as all of the air is putting pressure on my tummy and its swollen as if I'm five months pregnant. I can barely move due to the pain. It's awful and certainly something I can do without right now on top of everything else. I was in hospital for two days then sent home with anti biotics (to prevent infection) and paracetamol but the paracetamol was not strong enough. So I was admitted to hospital again yesterday, had a CT scan and an X ray which both show no signs of infection, but definitely a perforation and lots of air. Another operation was suggested to clear out the air but then that idea as abandoned and I have been sent home today with tramadol and more anti biotics.

I'm so angry with that doctor as now I'm in so much pain and can't care for my daughter properly so have to stay with my parents. Also, I was nil by mouth for about three days this week and can't eat much now due to the stomach pain and I'm supposed to be gaining weight before radiotherapy starts. I also had things planned with my daughter this week as I wanted to make the most of a few weeks of normality before side effects of treatment kick in and I've had to cancel those plans. I know all procedures come with risks but I was not warned of this risk. The doctor responsible said it happened because I only had millimetres between my stomach lining and my skin where as most people have a couple of centimetres. The PEG is now planned for Friday but this depends on how my stomach

I've lost trust in the medical team who dealt with this and they don't seem to know what's wrong with me. At first they said the air would disperse on its own within 24 hours but it didn't so then they say 48 hours, now they are staying a couple of weeks. Feeling very down now and worried that my tummy will never go back to normal.