Hi Debbie,

Thanks for your message and well done for completing your treatment, it must have been tough.

I won't be having a tube fitted, apparently I don't need one but I am concerned at this. I'd rather have one than struggle to swallow soups etc. I may bring this up again at my next meeting with the doctor. I've had a lot of help and support and I certainly intend to accept this going forward as childcare and getting to and from the hospital will probably be an issue as the treatment and side effects progress.

I will probably be in touch again soon, with many questions! So pleased to hear you had a clear scan recently, I look forward to hearing the same news in the next few months.

Nicola

Hi Nicola,

Well done for managing to eat 'normal' food so soon after your operation.

In relation to the Cisplatin chemotherapy, my sessions were 8 hours long - one day per week. I would arrive on the ward at 8am and they would hook me up to the drip and that would be me for the rest of the day. I trundled off with my bag on a trolley-type contraption to have my daily radiotherapy zap. You can read or watch a movie on a tablet / phone etc. You will most likely be in a room with several other people having the same thing done so there will be people to chat to. You can read and drink tea/coffee etc. You will probably have a meal supplied if you are there all day. The chemo apparently affects different people in different ways - most people have no problems at all. I suffered extreme vomiting but that was because the hospital staff did not issue me with my anti-sickness medication as they should have done. I was given some whilst I was there but I wasn't given any to take home - just make sure you don't leave without it!

The making of the mask is a strange experience but certainly nothing to worry about. I experienced no pain or discomfort and it is interesting to see the lengths they go to in order to make sure that the rays hit the spot. They then use the mask each time you go to make sure that you are in exactly in the right position each time. I now have my mask at home and I shall use it to frighten burglars and noisy children! The RT zaps only take a few minutes (between 10 and 20 in my case) and then you're free to go. I would liken it to an X-ray at the dentist.

In relation to being able to carry on as normal, again everyone is different and I think that most people are able to do most things albeit perhaps a bit slower than normal. At around week four I found that the excess mucus became a bit of a problem - I didn't like having to continuously clear my throat on the train and I certainly couldn't drive. I think it might be wise for you to work out a contingency plan for getting to the hospital if things get bad (which they probably won't). Maybe a friend or relative who can be available to take you should the need arise. The hospital should also have the means to supply transport if you cannot make the necessary arrangements. If I were you I'd work out my stand-by plan and then see how things go. I think the same can be said for caring for your daughter - you will most likely be able to but it would be good to have a plan for what would happen if you should happen to find the going tough. As I said though, most people find things manageable but the unexpected can always happen.

Overall I would say that I was self-sufficient for all but around 10 to 14 days of my treatment. Please remember though that I don't have children to worry about and I think it would be wise to try and remove some of the pressure that this might put on you by teeing up a trusted friend or relative.

In relation to worrying about the risks that people tell you about. I take the view that they have to outline all of the possible negative effects but that the chances of them happening are very low. It's a bit like when you read the leaflets that come with medication - if you took it all as being likely to happen then you'd never take a tablet again!

I can promise you that the time will pass very quickly.

Feel free to ask any questions and good luck (not that you need luck with your super-human powers!).

Best wishes

Simon

Hi again Nicola,

I just wanted to send you another message after reading your concerns and questions to Simon.

Myself I have no peronal experience with chemo or radio therapy, thankfully, but I can tell you that my Dad was pretty much un-affected by his chemo therapy for the first few weeks.  Eventually he was given more anti-sickness medication but it never made him feel as bad as he thought it would.  It was actually the radiotherapy that took his strength more than anything.  Well that and his cancer of course.

You have had a major and from what the surgeon has said, successful operation and your immediate recovery seems to have gone well.  I am worried that you are pushing yourself too hard, especially after being told about the extra treatment they want you to have.  It can't be easy when you are a mother to a two year old and again I have no experience to help you with that either but please just give yourself a chance and take your time.

I hope you don't mind me saying all this I just don't want you to use up any extra energy that you will need later.

Take care of yourself.

Garf. xx

Hi Nicola,

I have been away for 18 days and missed posts.

The mask is no problem. They put soft warm plastic mesh sheet on your face which sets as it cools. There is a hole for your nose and also for your mouth.

They smooth it to your face contours whilst its warm. You are lying on your back and the mask reaches down to the bench you are lying on.

In use it is clipped to the bench to hold your head firmly but comfortably in place for the RT.  I expect your RT will be similar to mine as I had radical

surgery also. I apparently struggled during the operation and my left arm and shoulder were black and blue as a result. They told me they

called me the 'warrior'. I stopped making blood about 3 days after the op and had 4 transfusions to sort it out. I started RT and Chemo about 4 weeks after

leaving hospital. To walk 200yds was an effort, before I started. I improved as time went on.

The Rt is painless and takes about 15 minutes to set up and then the machine moves slowly to (for me) 3 points, 2 sides and the front.

Each shot lasted about 30 seconds, so perhaps about 20 plus mins for setup and actual RT.  I remember they drew aim marks on my neck and

jaw with a black marker of some sort.

You might find it helpful for putting on weight to ask them to prescribe Fresubin 400cal drinks. These come in various flavours. Having just come back from the UK

where I had problems with feed, I found I had lost 4+ lbs. In 2 days having my normal diet (food bags via PEG 2,300 cals) plus 1 Fresubin I regained 3lbs. 

My Chemo took about 3 hours each friday and I did not suffer with sickness. I felt a little tired on some days but then I did not have a child to look after.

I hope all goes well for you. Try and stay optimistic it helps a lot be positive about your ability to succeed, as you have so far.

Regards

Colin

Hi Nicola,

Just wanted to say Hi and that I've been thinking about you.

Hope you're managing to have more 'up' days than 'down' ones and that you're managing to eat a little more.

It's good to see that you've got some great support here from fellow tongue cancer sufferers who can answer your questions and give you some insight into what to expect from the next stage of your treatment.

Keep smiling, big hugs, Jo xxx

Hi Simon,

Thank you for replying to my thread again and thanks for answering my questions. I've not been on here for a few days as I've had a low week where I've felt tearful and down about the situation and afraid of what's to come but I've picked myself up a little now.

I have a dental appointment next week as apparently my mask can not be made until any dental treatment is complete but my radio and chemo is scheduled to start in just over two weeks time. I think I'm more nervous about this than I was the operation as it is something I will have to face on a daily basis whereas the operation was done for me whilst I was put to sleep and completely unaware. I was told I would not need a feeding tube due to them only treating one side of my tongue however I have requested that I have one to be on the safe side. If I have difficulty swallowing they will admit me to hospital and feed me via a tube in my nose which means staying in hospital until I can swallow again and I can't risk that happening with a two year old to look after. So I'd prefer to have the PEG fitted and if I don't use it then at least it was there as a back up. How did you find the procedure of having the PEG fitted and removed?

I think you are right and I will take your advice and I will make arrangements to fall back on should I need some help at home and with getting to and from the hospital, but I will see how it goes to begin with. This is the first time since finding out I have cancer that I've felt a little angry and upset. I find myself wondering why this has happened to me and I look around at others and wonder why it didn't happen to them. Life was already tough enough as a single parent and now this too, life can be so cruel. My life is on hold for at least another few months but I just keep looking ahead to the day when I'm told I'm all clear.

Thanks again for all of the info, it really has helped as I prefer to know what to expect. I will keep you posted.

Speak soon.

Nicola

Hi Garf,

Thank you for your message. I'm trying my best to rest as much as I can and not do too much and I'm trying to stay strong and positive but I've reached a point where it's become hard to stay positive right now. I keep thinking ahead to when it's all finished and I can get back to normal, that's what's getting me through, along with my little girl.

I'm expecting a tough and gruelling time ahead with the treatments but I'm just going to have to keep telling myself it won't be forever but yours and everyone else's lovely words do really help me to look on the bright side so thank you.

Speak soon,

Nicola

Hi Colin,

Thanks for sharing all of the info. It really helps me to know what to expect. I'm currently on three Fortisip drinks a day, these are the nutrition drinks that have been prescribed to me. I'm drinking them along with eating food, I have been managing more solid foods this last week or so although I don't seem to be gaining any weight. I think I'm may try some takeaways!

I'm trying my best to regain my positive attitude, hopefully by the time treatment starts I will have it back again although I've been a bit down for a few days but I'm sure I'll snap out of it soon. I'm sure you are right in that a positive attitude helps with being able to succeed, I'm sure thats what got me through my stay in hospital so I will try to apply the same attitude throughout my treatments.

Thanks again for your post and I'm sure I will be in touch with more questions.

Nicola

Hi Jo,

Thanks for your message and I've been thinking of you too. I hope you and stumpy are becoming good friends and getting used to each other!

As I mentioned to Simon, Colin and Garf, I've been a bit down for a few days but I feel like I've picked up a little these last couple of days, I think your positive attitude is rubbing off one me! I'm dreading what's to come, as I'm sure you are too and yes it's great that I've been able to get so much good advice and information from other tongue cancer sufferers. I hope you've even able to speak with others with your type of cancer too as it really does help.

Glad to hear you sounding your usual positive and happy self as you have also dealt with so much recently. Your virtual hugs are greatly received and I'm sending hugs your way as well.

Nicola x