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 Emma- Thank you. Can I ask you something you mentioned-you said I am near to the 'toughest part'... I know you said your hubby was admitted into hospital-with what? I can't imagine things getting any tougher!  My hubby was very nearly admitted with dehydration but we just managed to swerve that, that was a low point, but I find each day, even each hour he is very different. I just enjoy the times he's feeling ok. xx

Hi there Other Half - of course you can ask what ever you like and if I can help then will.The Oncologist may have mentioned to you that the radiotherapy continues to work for about 2 weeks post treatment with it building to a crescendo at about 10 dats when the side effects are at there worst. Paul had severe vomiting and nausea plus copious secretions that I just couldn't manage at home despite his RIG. He couldnt tolerate any fluids and was so dehydrated that he needed to be admitted for a syringe driver and IV fluids. Everyone is different but I think that they all experience this ramping up of side effects and not having the daily visit to the hospital fir support can make it a really anxious time.

Wishing you luck for the last few days and please feel free to ask any questions you have Im here to offer support.

best wishes

Emma xx

Thanks Emma-that's useful to know as no one has mentioned about the 10 days post treatment, I will be on guard that day!! I think my hubby-Joe may get a bit frustrated as I think mentally when the treatments finished you want to return to normal & it sounds like that just isn't the case. But we will get there in the end! 

We've had the analgesia bumped up a bit today so that should give him a bit more ammunition to fight this battle of swallowing! 

Thanks again- it's really helpful & appreciated Joy xx

Hi Hazel

Mark is originally Bradford, now living in sunny Devon. He’s tough but not as tough as us local lasses but I have enough fight for both of us. 

Thanks for all the advice and tips, I have a napkin of scribbles as my bible so far!

Treatment starts on 27th, half term week for us which is a *** but no way we were delaying. 

We would normally be spending the summer backpacking around south east asia, this year we are looking forward to a cheeeky week all inclusive in Menorca. It had kids pools and all that hell but they will love it and seeing as we are going to rip their bubble apart I think they deserve the fun and us all the alcohol and sun we can consume before that hell turns into radiotherapy hell!

Just starting to tell people close to us and I’m. It sure it feels real, I find myself consoling them and then having to listen to tales of left up toilet seats etc, how cancer focus’ the mind!

Jo. X

Hi jo it’s quite common even me the patient had to console othervfsmily members. !!! Refer them to my blog then they will see the hell thst csn be radyit will shut them up and save u the hassle. 

Yep us lasses are tougher than men me bring female 3 % are femsje that get  it are female the men couldn’t understand how I was coping positive mental attitude got me there. Tell your little ones maybe don’t mention the c word we didn’t with our 8 years old grandson just said nana going to have a very sore throat and may not be able to swallow so might need a feeding tube for a while. We let him taste the food supplements hevdoon dtoppedvasking after that justvssid nana they are vile poor u. Kids. 

When is Menorca then ? 

H d

Hi Jo 

No problem any time. Im surprised they haven’t mentioned that the side effects ramp up just when you think youre over the worst. I always say just batten down the hatches - you know its coming so you are forewarned and can be prepared. Pauls neck also broke down during tbus time and needed specialist dressings to manage the pain and exudate. Although youre no longer sering the medical staff everday don’t forget uou can still phone them and get him reviewed if you’re concerned that he isnt coping or is more unwell than you expected.

Keep on with the pain relief- you get no medals for suffering and tell Joe that this is perfectly normal as he comes to the end of the treatment stage. 

Stay strong and we’re here to support you both.

best wishes - and as Hazel says onwards and upwards 

Emma xxx

Sorry to chip in here .... don’t make the same mistake I did with my husband applying cream just before he went for treatment ... it’s a bit like greasing a chicken before it goes in the oven oops .! I cream his neck all day long  . I hope your husband is doing ok , 4 more treatments left for mine ....thank the lord xx 

Thanks all

Hazel, Menorca is this Friday, cannot bloody wait. We have decided to be very honest with the kids, the eldest is 10 and rwmembets loosing her uncle to the same cancer 4 years ago, she know he’s had his tonsils removed Ed and as soon as we mention there is something wrong she will link the two and think can we. Not only that but we are both medical so she is pretty exposed and I think avoiding the ‘c’ word as some friends have suggested would loose her trust in us. 

Hi Emma

wrve had very little support or guidance, if any really, all our, or rather my knowledge/expectations come from here. Diagnosis 8 weeks ago and we’ve seen a CNS twice, we’ll diffetent ones that pass ownership to the other. !

Ginpo, thanks. We will avoid all creams u TIL directed, someone mentioned an aloe Vera type spray? Xx

The hospital have given Chris all  his creams . First we had an emollient , next came the Gel & once treatment ends we will be given silver nitrate. The hospital have been really on top of all his pills, creams throat sprays etc. Just been lent a nebuliser , nothing seems too much trouble . We were told just to use the creams prescribed by them . Nice and cold from the fridge ! X x  PS have a wonderful holiday . X

creams we have been given are. Diprobase & Flamigel RT 

The hospital have given Chris all  his creams . First we had an emollient , next came the Gel & once treatment ends we will be given silver nitrate. The hospital have been really on top of all his pills, creams throat sprays etc. Just been lent a nebuliser , nothing seems too much trouble . We were told just to use the creams prescribed by them . Nice and cold from the fridge ! X x  PS have a wonderful holiday . X

creams we have been given are. Diprobase & Flamigel RT