Hi Nicola

I was so pleased to read this post - what a huge relief that news must have been.  It's such a pity you had to worry yourself sick all weekend though.

I got a good report on Wednesday.  My consultant seemed very pleased with my treatment and how my skin and throat are healing.  She said the inside of my mouth is looking far better than average at 4 weeks post-treatment, however funnily enough it's only the past couple of days that my throat and tongue have become really sore and my attempts at eating have taken a backward step again.  All very frustrating but am thankful all is progressing well and just trying to be patient.

Best wishes for your next check-up and I hope you enjoyed your Mum's casserole.

Love Irene x

Oh dear Simon, whatever next?!  You are right, you couldn't make it up!  However sending positive vibes through the ether for the next stages.  I've just posted a reply to Nicola with a wee update following my check-up on Wednesday.  Happy Bunny

Hi Irene,

Excellent news about your check up - I'm really pleased. Another step in the right direction.

Take care.

Simon xx

Hi Nicola,

Thanks for sharing your case here. My mom also having tongue cancer which similar as yours. She just did surgery on 21/3/14 and 1/4 of her tongue cut. Doctor told her to follow up the radiotherapy. Can I get your advice whether radiotherapy is really good? do you have any serious side effect? Do you take any alternative medicine? Some tooth need to remove is to do radiotherapy?

Sorry for asking so much. hope to hear from you soon!

Take care

Ping

Hi Ping,

Firstly, sorry to hear that your mom has tongue cancer and well done to her for getting through the surgery.

If her doctor has recommended radiotherapy then I would urge her to go ahead with the treatment. I won't lie, it is tough but the benefits far outweigh the side effects. The side effects aren't pleasant - sore mouth, throat and neck, blistered skin, some hair loss, ulcers in the mouth, oral thrush, loss of taste buds (temporary) and a very dry mouth. However, it's unusual for most of these side effects to be long term. I am ten weeks post treatment and I feel pretty good now, most of my side effects have gone but I was quite poorly during the last two weeks of treatment (I had 30 sessions over six weeks) and I was at my worst for a couple of weeks after the radiotherapy ended, but all of the side effects are manageable with pain relief, mouthwashes etc. I was taking strong painkillers to help with the pain and I was given some cream to help the blistered skin. Eating becomes a problem with radiotherapy to the tongue, I was unable to eat for a while, but your mom may not find this to be too much of a problem if 1/4 of her tongue has been affected. Mine was over half of my tongue so possibly a bit more tricky to eat.

I had some teeth removed before radiotherapy but I understand that not everybody needs this, so your mom may not need to have any teeth removed. I took the advice of my consultant and allowed my teeth to be removed and to be honest, I don't miss those teeth!

I hope I have answered all of your questions without putting you off but I feel it's best to be honest, I for one would prefer to know what to expect. The techniques of radiotherapy used these days is better than ever so in my opinion I would take all treatment on offer.

I wish you and your mom all the best and feel free to ask me anything else.

Best wishes,

Nicola

Hi Nicola,

Thanks a lot for answering my question. It's really helps. I feel so sad for the side effect on radiotherapy and I hope that she could cope. She's 50+ years old, I feel the pain for her even she not yet go for radiotherapy. My friends and family recommend her some health medicine such as Bio-Strath supplement and Sabah Snake Grass which is herbal cancer cure. I'm not sure whether those are really good for her.

After your radiotherapy, there's nothing to follow up anymore? Can you now eat normal food (bite meat, vegetable, fruits)? My mom current condition only can eat porridge and soup, hardly can bite food.

Best wishes for you too! Take care.

Ping

Hi Ping

Sorry about your mum's illness. I am sending you the link to our information on herbal remedies.

There is currently no strong evidence from studies in people that herbal remedies can treat, prevent or cure cancer.

Best wishes

Jane

Hi Ping,

Now that my radiotherapy has finished, I'm reviewed regularly at the hospital and will be for some time. I was able to manage soft foods such as yoghurts, porridge, soups, ice cream after about 6 weeks of treatment ending then last week I attempted scrambled eggs and mash potato. I'm still taking strong pain killers to enable me to eat anything but I'm gradually seeing an improvement. Biting food is ok but it's the swallowing which is most painful, as for me, my radiotherapy was targeted at my tongue, throat and pallet. I would think that in a few months time I will be eating pretty normally again but due to the lack of saliva (which is a lasting side effect) there are some foods which I will probably not attempt again such as crackers, bread and anything which is very dry. I did eat normally again following my tongue surgery but it took a few weeks. Whilst I was unable to eat, I was drinking the special nutrition milkshakes which are a substitute for food. I also had a PEG (feeding tube) so that I could still have the milkshakes via my tube when my mouth was too sore.

There were many people older than me coping very well with their radiotherapy so don't let your moms age worry you. It's a few months of discomfort for a very good chance of a cure so very worthwhile in my opinion. Lots of people say they live a normal life again and eat well after this type of treatment.

I hope I've been able to help, please ask anything you want.

Nicola

Good news today! I'm officially in remission!

I had a check up today and my consultant decided not to do the ultrasound of my tongue. Him and the surgeon had another discussion about my scan and are happy that there is nothing to be concerned about. I will however be having an ultrasound of my neck at my next check up in one months time. This is purely for a baseline so that they have something to compare against in the future should they need to.

Needless to say today has been a day of celebrations! I had my first alcoholic drink since before the operation last September - a glass of champagne! I could actually taste it too. I'm going to attempt a pancake later as it's Shrove Tuesday!

It's been seven months of hell and today marks the end. It's been an emotional day but a day I'll never forget. Thank you to all of you for your amazing support and understanding throughout, you really did all help me through my darkest days.

Simon, I wish you luck for tomorrow's biopsy result, but I'm feeling positive for you. Please let us know how you get on.

Much love,

Nicola xx

That is such good news Nicola, congratulations and well done. We said you'd get there and you have,

hugs

Annabel. xx