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

Hi Jaxter 

Its good to hear that our experiences are useful to others and if there were good things to come out of cancer then this is one of them. 

My hubby had a lump appear in his neck - he had had a cold so we thought it was to do with that. We sort if forgot about it and he decided to get stuck in with his running.He lost a few pounds and 5 weeks later we noticed the lump was still there and a bit bigger. So iff to the GP and to cut a long story short he was diagnosed with stage 3 tonsil cancer and lymph node tumours. A big shock for a non smoking, vegetarian, running , minimal drinking 54 yr old. Even more if a shock for me as a nurse as I hadn’t even heard if tonsil cancer. 

So our journey began - tonsillectomy and biopsies, 5 cycles of Cistplatin chemotherapy and 30 fractions of VMAT radiotherapy plus a neck dissection and here we are nearly 3 years cancer free. 

Its a tough arduous road - not just for the person with the cancer but for their families too. As his main carer you will need to be strong when he isnt able to be and it can be a very lonely time. 

Its great that youve read Hazel and Ians blogs abd I wish Id written one from the carers perspective as Im sure it woukd have been of help to others . Anyway good luck with the dentist tomorrow- I had been strong until we saw the dentist and Paul had to have 4 teeth removed that were healthy but could cause problems following the treatment in the future. So please be prepared for any possibility. 

If you’d like to ask any questions or chat then feel free to send me a friend request and if I can help then Id be happy to.

best wishes

Emma aka Newlymarried 

Ian, Hazel and Emma - thank you so much for your replies and for making me feel so supported and 'at home'.  It's so kind of you to keep returning to the forum to offer assistance in the way that you do.

As expected, teeth from both sides of my husband's mouth need to come out and he's due to have the extractions sometime next week.  Not pleasant, but if it prevents possible problems in the long term, then it's worth having done.

Dave - wonderful news about your scan.  I'm so pleased that your birthday's been such a good one.

Ian, Hazel and Emma - thank you so much for your replies and for making me feel so supported and 'at home'.  It's so kind of you to keep returning to the forum to offer assistance in the way that you do.

As expected, teeth from both sides of my husband's mouth need to come out and he's due to have the extractions sometime next week.  Not pleasant, but if it prevents possible problems in the long term, then it's worth having done.

Dave - wonderful news about your scan.  I'm so pleased that your birthday's been such a good one.

Hi Jaxter,

Your welcome and happy to help.

I also had both side back teeth extraction and to be honest wasnt the most pleasant experience and took a little time to recover. My gums are still a little effected on the left hand side after treatment.

This will delay start of treatment slightly but nothing to worry or be concerned about.
Also hope done in one go under surgery as my dental consultant was going to start pulling them a few at a time over a few days. No chance !!!!...I waited the little extra to get booked into surgery and done that way.

Please keep us posted on progress.

Onwards and Upwards

Ian

Yes, it's being done under general anesthetic - 6 out in all, so quite a big emotional impact.  The Oral Surgeon said she hated to take out such healthy and well cared for teeth!

They seem to have arranged the extraction so that it allows just over two weeks between it and the proposed start of chemoradiotherapy.  Hopefully that will be enough for him to recover sufficiently, but I guess there's no way of telling how speedy the healing process will be until it begins.

Hi Jaxter sorry to hear about Teeth extraction s I was one of the lucky one s and didn’t have any taken out. But the radiotherapy is so targeted I think I was lucky and the teeth that I had had already lost one on upper one on lower jaw was enough for the beam to work with if that makes sense.

look at it this way if you can extraction after treatment can involved all sorts of problems ie hyperbaric chambers for up to 2 weeks of teeth need pulling for up to 6 months after treatment. Little consolation but a positive spin if at all possible.As you will get to know over time this cancer keeps taking things but keep in your mind the positive things the biggest being the end results .

keep in touch please we are all here to help .

Hazel x

Hi Jaxter as Ian says we’re here to help - we may not always have the answers and are no substitute for your medical team but we have lots of tips that may help you and your hubby aking the way. 

My hubby had his 4 - healthy teeth - extracted under general anaesthetic- the oral surgeon saud I can take them out now uf you’d like - err no said hubby - you’re putting me out to do it. I remember being very emotional about it . When he went in to have the extractions the staff in the day unit kept asking why he was having it done as he looked so well - we couldn’t believe he looked fine but had this thing growing in there. His GP phoned in the evening to see how he was and I remember just blubbing. 

Hopefully they can get him in quickly so he can start healing. IHave they mentioned a PEG or a RIG to help with feeding during the treatment? Paul had a RIG and although he was resistant at first it was definitely the best descision to have it. 

Anyway keep in touch with how things are going and feel free to ask any questions you may have.

best wishes and good luck

Emma xx

Calm before the storm!!!

So I am trying to enjoy this lovely Easter weather before my treatment starts on Tuesday. I feel absolutely fine with no symptoms, its hard to realise you are infact seriously ill. The sad thing is that in the next six weeks they are going to mess you up big time and I can’t help thinking is this the best I am ever going to feel again…

Two Chemo and thirty Radio blasts to come, I thank all who have helped me come to terms with this via the forum for your support and kindness, I will update this thread and also those who have been kind enough to private message me support. Hazel (bless her she responds to absolutly everyone) Ian (another who offers help to all), J4, Clara, London and Jimbo, also Amy who is waiting to see what her next step is on this ****** journey. I wish I could feel a bit more positive but I am still terrified of everything that is to come our (myself and my wonderful Eileen) way.

Happy Easter to you all and thank you XX

Hi Cotswold

Good luck with your treatment and more importantly recovery.
It can be challenging sometimes but there is really high success rate with this and you will have seen the positve outcomes from a few of us here so hopefully that is ecouraging to you ( and others).

We are all here to help and support you any way we can along the way. and please keep us posted on progress

Onwards & Upwards

Ian

Hello Cotswald.

Best wishes for your upcoming treatment,hope all goes well.

Perhaps after you get a couple of sessions under your belt it will be less scary for you. Its the unknown that makes it so scary I think.

Our thoughts are with you both,keep in touch & Happy Easter.xx

Hi Colin 

deep breath hold you head up high u can and will do it. I totally get how u are feeling I was the same  I cried  my self to sleep the last night befire trestment began. Was u ever going to be the same person again the same wife the same mum. Hand on heart I can say yes u am cancer has not and will not define me. I am still the same person not any different I have told people not to treat me with kid gloves n no one has the only allowance any one us making fir me is I can’t eat as much meat as I did before so I have more veggie s now and I make John have more fish. !

some people say cancer makes a new you and u get used to it. I decided I didn’t want s new me I wanted me so positive mental attitude you will get there we will drag u along. 

Please let us know how Tuesday goes 

as Ian says onward and uowards

hszel from a soggy Spain to all my u k mates enjoy the sun while u csn coz I’ve 2 more weeks here n want my SUN back 

ps agree I felt really well as well prior to it sll stsrting ! But ferl good now apart from poor saliva but it’s getting there slowly 

haxel love to Eileen x

Hi there Cotswold and you are definitely right in describing it as the calm before the storm however a storm ends and the sun comes out to shine again so hold onto that. 

My hubby was diagnosed with tonsil cancer and lymph node tumours in Dec 2015 - a massive shock and he was so well. The only symptom was a lump that had appeared in his neck on the right side. The last thing on our radar was cancer - we are vegetarian, non smoking, practically non drinking and run most days. As you say the thought of them pumping chemicals and blasting him with radiation when he was well seemed mad. Whenever we told anyone they looked at us in disbelief.

However 5 cycles of Cistplatin chemotherapy, 30 fractions of radiotherapy and a neck dissection later he has been in remission and cancer free for nearly 3 years. Life was different for a while and yes we do have to check menus when we are planning to go out to eat to make sure there’s something he can eat, I spend a fortune every week on bottled water ( Evian being the vintage of choice) as he is a water connoisseur, chocolate doesnt taste the same , his tennis serve and golf swing have taken a battering and his thyroid is knackered by the radiation but its a small price to pay for him being here. So the reason for me saying this is - yes the treatment is damn tough and arduous - takes its toll on you and your loved ones but you will get through it and come out the other side. Take a deep breath - tell yourself your kicking this things backside into touch and just take each day as it comes.

Were here to help and its great youve read Hazel and Ians blogs   to help along the way. Wishing you so much luck for tuesday and pop back to let us know how your getting on and ask any questions you might have. Feel free to send a friend request if you want to chat more.

Best wishes 

Emma