Hi

I just wanted to thank everyone involved in this thread, as reading it has been incredibly helpful over the last few weeks.

My husband had a swelling on his neck diagnosed as cancerous at the start of this month (April 2019).  It was a shock: he's never smoked, rarely drinks, cycles regularly, eats sensibly and is in good health - or so we believed.  Since then he's undergone a CT scan and biopsy which have confirmed the tumour as being at the base of his tongue and HPV16+.  He hasn't had his tonsils removed, as the sugeon doing the biopsy/panendoscopy thought they looked OK, but going by the scan the consultant thinks one has been affected, as well as some lymph nodes.  He gets assessed by the dental team tomorrow and has an MRI booked for the end of this month, plus whatever other appointments are yet to be arranged, with chemoradiotherapy due to start in about 4 weeks.

The last couple of weeks have been stressful (to say the least!), but this - and a couple of other similar threads - have been incredibly useful, as have the wonderful blogs by Ian and Hazel.  Having an insight into the treatments and their side effects meant that we felt quite well informed about what lies ahead even before speaking to the hospital consultants, and instead of everything being a blur, we were able to take in what was said and manage to ask some sensible questions.  Without all of you generously sharing your experiences it would have been a very different story.

Because of that, I wanted to let people know how important this thread has been for us - and that all your tips for coping with the treatment etc have been gratefully noted!  It's not a good situation to find ourselves in, but we feel pretty positive that we'll come out the other side in one piece.

I hope everyone who has posted, or who might be reading this, is doing well and continues to do so. 

Thanks again, and best wishes to you all

Have to echo this, prepared me so well, a Godsend.

Hi Gem

Am sorry to hear of diagnosis and wish your father all the best with his treatment.
Am glad you found this thread encouraging as so many of us have pulled together to help one another and pass on experinces and tips and encouragement.
I have also written a blog from the get go, warts and all, and would suggest you might find that helpful in terms of what potentially your father can expect and when. I have detailed a timeline of each week as it happens and there is also a helpful section on tips collected along the way from many as well as my own. There is also a link to Hazels blog on here and also worth a read.
You will also see from my blog that my biggest recommendation is to drink as much water as you can. It not only hydrates but also uses throat muscles and was one of the best bits of advice and medicines I was given by my specialist team
On the issue of paracetamol , that should only be taken if not on co codomol. Paracetamol and morphine together is fine,which will be needed more than likely, but I'm sure all the pain management and medication will be strictly controlled by medical support team

Have a read of blog below and among other things you will find lost of additional tips and advice and please let me know if I can help in anyway at all.
Happy if you wanted to friend request if you feel you wanted a more one to one oppertunity as treatment progresses or just to ask questions or chat more freely.

radiotherapythroat.home.blog

Onwards & Upawards
ian

Sorry to chip in here Gem .., your dad will need more than paracetamol that’s for sure , not sure how it works abroad but on my husbands first radiotherapy treatment he was given Paracetamol , cream for his neck you need loads of this, anti reflux medication ,& mouth wash . Since then he has been given co codamol & more paracetamol , more cream , toothpaste & morphine ! I’m really sorry to load this on you , as you must feel so helpless . He will also need to try and keep his weight up so I give him loads of milky puddings , yogurts , porridge & thenlike basically nothing lumpy but this has only been in the last few weeks . He is having 33 fractions of radiotherapy and has 8 left . side effects have started to really kick in this week & took morphine for the first time last night. I think this treatment gets worse once it has ended for a few weeks at least . I am sure they will give him all the pain relief that he will need at the hospital as it’s strictly monitored . Here they also have a dietician & speech therapist appointment every week . This chat room is lovely I have had a lot of beneficial help here . I brought him a humidifier tonight as his throat is so bad at night I hope it gives some relief . All the best Gem for your father . Love Ginny x x PS I feel so awful posting like this but he will need more pain relief for sure . And water , water  more water & tea ! 

I don't mean to jump in, but I am.  It must be awful for you being far away and not really knowing what's happening.  Perhaps it might be a good idea to suggest to your father to ask one of the team to put a pain ladder management plan into place for him.  It's really important that your fathers pain is kept under control.  Don't be concerned if morphine is on the list of painkillers. When I say list your Dad may need a combination of painkillers.  What Gingo has said is so true.  Pain management is crucial.  I ended up back in hospital because my pain was not being managed.  I was so lucky that a brilliant junior doctor was on when I was admitted to hospital.  A busy ward.  Once she got me sorted with the pain it was like night and day.  I wasn't undergoing any treatment.  That was just after having one tonsil out.  Oh my, then I get told the other tonsil had to come out..  Second time around wasn't so bad because I was taught how to manage the pain.

My heart goes out to you.  It must be so hard for you being far away from your Father.  Gingo is also right up there when it comes to weight.  What I don't agree with is eating rubbish when the body needs nourishment and steps taken to help build the immune system up.

This is not going to be an easy road, but as the old hands will tell you, 'it's doable' .  When I say old hands I mean that with the utmost respect..  They're the living proof that the mountains in front can be climbed.  I will keep you and your father in my thoughts.  Wishing you and your father all the very best.  Take care.

Madeleine 

Hi gem. This is hazel hi to everyone on thread smbst Santander waiting for ferry so will reply in detail when I get home. Like Ian says please read our blogs we don’t hold back any punches. Pain killers are like my oncologist says clue in the name he will more than likely need them. Where about dis your dad. Send me s friend request if I want to talk private as wrll

www.radioactiveraz.wordpress.com plus liknks to Ian’s 

hazel xx

Hi Ginny hang in there tough few weeks ahead but hey I am proof that things can only get better. Will be in touch when bsck in U.K. on boat shortly feeling good drive 4 hours up through Spain ! 

H xx

Hello-new here but been reading your posts for a bit & would like to join this group-as you seem a great (& very helpful) bunch!

I have had a few IT problems & probably will continue to-so forgive me if i take a while to return as I probably will have problems getting back on-(pw problems).

Anyway-Thanks for all the tips-been really helpful-as it's my husband Joe who is currently going through chemo radiotherapy for his tonsil & tongue cancer-into 6th week (treatments 3 chemos & 35 rads).

Currently just about managing to eat or slurp soups, maccies -boy does his tastes change! sometimes firmer stuff like cheese on toast-but getting harder by the day. All due to pain now & the thickened mucus is problematic-don't think there's much to improve that? He suffers bad post chemo-so dreading the last 1-so yes all in all-life's.....a challenge-to remain polite but wow I take my hat off to all of you because it's a tough road- & bless you all. I hope you are feeling ok- keep going as you are doing brilliantly! As for any 'Other halfs, carers' whatever-it's pretty tough too- & I do know  what that feels like but it's not about us-but to you all-take care & have an ok-even good day/evening.

Joy x 

Joy I have just brought my husband a humidifier as someone recommended on here Hazel I think . He had the best nights sleep last night having it on . He is in treatment too & suffering like yours ! Sigh x x. 33 radiotherapy fractions in total 8 left to go .

I’m hanging Hazel ! X x x

Hi Joy

Welcome to thread and do please keep us up to date with progress.

Yes, there are challenges but I often refer to the fact that the light at the end of the tunnel actually exists and the success rates for this are high.
As for "other halfs" it is about you as well. I could not have. (still couldnt) have done without my partner in all of this. It is hard on partners as well of course and they are on the journey with you not only with practical help but also providing mental streghth and often just someone to be able to talk things through. So I would say you play a vital role during and after treatment and shouldnt be underestimated what you do for us.

Mucus is one of the unfortuntte side effects but it does clear up and doesnt last that long. I also found humidifier helpful during treatment and I also used to put in some eucalyptus essential oil in a diffuser and found that quite beneficial

Good that still managing to eat and get fuel inside and there is also suppplement drinks available should he struggle a bit and your support team will be able to organise.
As for pain, I'm a great believer in that there are solutions available and my pain medication was stictly controlled by my medical support team, but I would say by and large my pain was all controlled and I wasnt in too much discomfort because of, so something I would always advise.
I have also kept a blog, warts and all from the get go and I have put a link on for ease below in case you havent seen on the thread.There is also a section on helpful tips etc picked up along the way. There is also  link to another blog from Hazel here that is also good help and worth a read.
radiotherapythroat.home.blog

Onwards & Upwards
Ian

Hi Ginny keep on hanging in like Ian says there’s light at the end of the tunnel , just some days the tunnel seems s longvway offf ! We are proof that it does work.  Will be updating my blog in next few days will let every one know. Hazel xx

Hi Ginny keep on hanging in like Ian says there’s light at the end of the tunnel , just some days the tunnel seems s longvway offf ! We are proof that it does work.  Will be updating my blog in next few days will let every one know. Hazel xx