My sisters cat was the same when I did my exercises!!!  They must think we're very odd :)

Hi Peter, I had to smile to myself when I read your note about my positive attitude.  I can assure you I have my pitch black moments!  I remember when I had my teeth extraction, such a silly thing but I sat in my car and thought I would never stop crying :-)  I'm sorry to hear the tube fitting was tough, I've got no experience with this, I'm glad it was just a one time exercise though, another tick behind you.

You must be apprehensive about the next period, it's a means to an end but that doesn't make it any easier at all I know.  Counting down the days helped me, planning food in advance so I wasn't scrabbling around finding appropriate food helped, also not waiting for the pain and taking regular meds. I'm sorry I can't offer more.  How are your family coping?

Re the indigestion, the hospital gave me "Antacid & Oxetacaine" suspension as well as being a liquid antacid, it's has numbing properties so it helps numb your mouth and throat too.  I found it helpful before bed.

I'm 3 weeks post treatment, still no sign of taste buds, so even though my throat is a lot better it's hard to summon any excitement for food!  My cancer was never found so they aren't sure what my next steps should be - risk of radiation from repeated PET scans plus they don't know where to look.  They are considering a one time 3 month scan and then nothing else if clear.  My biggest issue now is from my neck dissection, which you guys didn't have so you won't have this.  The scar is very tight and it makes neck mobility an issue and has left me feeling ‘strangled' all the time, I'm working with physio but it's quite wearing, it won’t likely ever be normal again.  I want to unscrew my head for a while for a break!!

How are you Mary?  How’s your voice?

Take care all, Erica

Hi Everyone,

Good to hear from you both and for the updates on both your progress.

I took advice from my GP Mary and got my COVID booster and flu jab over three weeks ago, so although I cut it fine for my first chemo I was informed it was wise to get them done ASAP.

My family are fine thank you Erica, my wife has been a rock and she is coping with my increasing black days and changing moods which unfortunately being a Scot come far too naturally for me!

I've never been told why I never got a neck dissection as I was informed I would by the oncologist but I suppose each tratment plan is different, I do hope the physio improves your neck discomfort as I would imagine the mobility issue your having must literally be a pain in the neck!

Week two is coming to an end and my post chemo symptoms of nausea seem to be a constant feature, thank you for your advice on the anti acid medicine Erica, I will mention this to my doctors session tomorrow.

Glad you chemo is finished Mary did you have post symptoms? I'm having loads of cat naps but the dreams I'm having are the most vivid colourful and strange that I've ever had, some of them have my parents who both passed a few years ago trying to speak to me through a large glass window in an imaginary garden but we can't communicate, very strange how dreams possibly interpret our inner thoughts.

Spoke to the speech therapist today and because I'm having 35 radiotherapy sessions which is 5 more than normal I will have major speech issues post treatment, no wonder I've trouble sleeping at night!

Well done again on both of you coping so well on this difficult journey, I'm taking each day at a time and hoping for the best.

Best wishes.

Peter

Hello Everyone,

Happy Christmas to One and All,

I hope you are all ok. Peter - I have been thinking about you and you must be finishing this week. I hope it wasnt too difficult for you.

Since my last message, I have found it very difficult after my treatment. I got mouth ulcers that were so painful. I got a prescription mouthwash to help. No food only my liquid protein drinks and custard. I have turned a corner but it was difficult. I'm gradually getting there. My speech is poor as the back of my tongue is very week and I need to do daily exercises to improve this. 

That's it for now, just wanted to say Hello and have a Safe Christmas.

Mary x

Hi Mary, 

Happy Christmas to you too! I'm glad you're feeling a bit better, it really is a horrible experience. I'm almost two months post but I still get blisters at the back of my mouth and I don't have all my taste back but I do think every day is slightly better - it's just so slow. I hope mentally you're doing ok Mary, that you have people around you to lean on. 
During the madness of Christmas preparations and excited young children I have found I'm not doing my neck stretches and mouth exercises as regularly and I'm skipping meals because I don't have time to make something soft but healthy - so I know I need to do better. 
I seem to remember Peters last day is Christmas Eve, I imagine he's feeling pretty dreadful about now. I hope he's managing ok and focusing on the future. 
Best wishes all, Erica x

Hi Ericia, lovely to hear from you. Your right it has been very slow but I can feel I'm getting there. I'm not great at the exercises . Happy & Safe Christmas

Hi Mary & Erika

Great to hear from you both and thanks for your updates on post recovery.

I'm sorry to hear Mary that post treatment recovery has been difficult, I've been lucky in having no ulcers yet and I can still swallow food but I've lost my appetite to such an extent that with not no taste I just don't want to eat and the thought and smell of food makes me feel sick, however I've been eating and drinking like you, 4 proteins drinks a day and lots of rice and custard pots but due do the multiple radio sessions that use up so many calories I've lost nearly 3 stone and a lot of muscle mass which the dietician is concerned about how much weight and muscle I've lost.

I Finished my last delayed chemo today had to spent two overnight stays in hospital as I was not hydrated enough to receive the chemo and I have two more radiotherapy sessions to go, the last one being Christmas Eve then I'm done with the treatment and all the daily early start visits to the hospital and become like you both a member of the post treatment club!

The radiotherapy nurses told me today that post recovery is a long and arduous trial that could take up to three months before any signs of improvement show with the last to come back being taste which is the one we all want to enjoy the most.

I've also being neglecting my mouth exercises, I must try harder as my speech therapist lady is a hard taskmaster and I'd be frightened to upset her!

You must be exhausted Erica looking after young children and preparing for Christmas but with two months post treatment under your belt things hopefully will get better soon.

My youngest daughter although double jabbed caught covid at the weekend so we have decided to delay the family Christmas until the end of the December so we can all be together safely, so I have that to look forward to.

 I do hope both your post treatment symptoms improve, I'm sure they will and may I wish you both a Happy Christmas and most of all a healthy New year and look forward to speaking to you both soon.

My best wishes.

Peter

Hello Peter, its lovely to hear from you and well done in getting through the treatment.  You will get through this, its great you can swallow the soft food. You are doing great.

Welcome to the Post Recovery Club!!!

I was told when I finished my treatment that the next 2 - 3 weeks would be difficult. They also said to make sure if I get a prescription when leaving, get the items, so that I have them ready at hand at home. Even though, I might not require them yet. No harm in knowing! 

Sorry to hear about ur daughter catching Covid. Its everywhere. 

I'm cooking Christmas dinner for my Son and family. It will be a strange one, as I love Turkey and Ham with all the trimmings but instead I be having Veg. Soup and Salmon! again .... everyone will be on desert while I be still sipping soup. At least we are progressing!

Have a Safe and Happy Christmas Peter and to your family. 

We will have a chat again in the New Year please God.

Take Care

Mary

Hello Mary,

Good to hear from you and thank you for your kind words.

well that's my treatment finished now, it's been seven long weeks with probably more discomfort to come but at least no more long trips to that radiotherapy machine.

I do hope you enjoy your Christmas dinner with your son, my daughters are coming round on Boxing Day for the full dinner, whilst I'll be having the usual exciting protein drinks and custard!

May I wish you a very pleasant and healthy Christmas and I look forward to hearing from you in the New Year.

My best wishes to you.

Peter