Hi Gill Nicola Simon and Guzzle

I hope you have all been well this week especially guzzle now that you have finished your treatment....hows its going?

Well as for me ...it' s been a week but it's felt like a week and a half

there was my whinging about not getting enough information then "wham" .... take that one.....information overload

I had my dental check on tuesday and all was fine...so thats good

went back to Addenbrookes on wednesday for the results of my multiple biopsies from tonsil back of throat and back of tongue to try and find the prime site and guess what?.....nothing found...so I have no defined prime site just an area where they know it must be originating from

so I met with my ent consultant...who I must say is excellent and he just took us through what this meant and whsts now going to happen

I then got introduced to my oncology registrar and my macmillan nurse....who I must say both made me feel so at ease right from the off

my macmillian nurse took me through a few things and gave me that brilliant sheet so I can claim free pescrptions for the next 5years... well thats one benefit of cancer I suppose....but she also wanted to know about my kids how old they were and if they needed any help....so thats was a good thing to know

my oncology restistra then too my through the whole process of what I am about to go through, the side effects and the whole kitchen sink

so... im on csplatain...and yep simon I will make sure I get my sickness tablets

yep I get my imrt radio therapy but because they have to blast me all over the neck area...4 places ..backmof throat, glands on the right, glands on the left and the lump on my neck but because they have to blast a wider area they have to be careful not to damage bits like the thyroid and majore arteries to the brain....so im having something called tomoradiotherapy... this is so precise it target only those areas that need targetting and because of this it delivers higher doses....this will make me more fatiqued a lot quicker but will hopefully lessen the damage to parts of my neck not impacted by the cancer

so we spent over an hour with my oncology registra.. I then got introduced to my oncology consultant

after that it was my radiotherapist who took my through the process of the mask, talking bloods and the radio therapy session

I then got introduced to my dietiction who explain the peg, feeding oral hygien and how important it is to keep the swallowing mechanism goin......it was strange to have a dietition that wants me to put on weight

the only person I did not get to meet was my speach therapist...but I am sure that will come

Oh and because I have to have tomoradiotherapy I have to have all my treatment at addenbrookes...I was hoping to switch it to norwich so I could get into work....but that aint goung to happen ... oh well

so this tuesday im off to addenbrookes to have my bloods done my mask fitted and a planning scan so they can calibrate the areas to target the radio therapy

then on wed 2nd I have my pre treatment meeting

tuesday 8th I start my radio therapy but I also get my peg fitted...im in overnight to make sure that the peg is ok then radio therapy again

back on thursday to get bloods and radio therapy

then friday 8 hours of chemo....

and thats me starting my 6 weeks....im sure its all coming back to you now

As of yet no one knows im ill and we have kept it quiet so far but my daughter finushed her gcse s yesterday we told the kids ... which was difficult but had to be done

then today its the rest of the family

then sunday and monday close friends

so as you can see its been one hell of a week....but youve all been there

Hi Vatch,

Your situation and treatment plan are very similar to mine. Same chemo, same RT and also the fact that there is uncertainty about the location of your primary site. My diagnosis was eventually described as Tis N2 M0 SCC 'presumed' primary left tongue base. Although I am 100% confident that the cancer has been successfully dealt with (because my lymph node swelling reduced and then disappeared as soon as the treatment was underway), it is still described as 'presumed' base of tongue at each of my check-ups.

It might be worth asking if your cancer is considered to be HPV positive. There was a lot of publicity about this when Michael Douglas (the actor) was diagnosed. When I asked I was told that I was HPV.

You are 11 months behind me - my treatment started on 29/07/13. I have now had 7 clear monthly scans and in a years time you will have had these too.

As previously described, I got off to a bad start with extreme nausea - largely due to the hospital messing up my anti-sickness meds. I didn't have too many issues with skin burns. My skin did go red and sore but it never broke down in the way that some people experience. I did apply lots of the skin cream though. I spent a few weeks unable to eat and a period when I was unable to talk. It's all worth it though.

I hope that you have a smooth ride similar to Guzzle. I know that you have your business to think about.

Feel free to ask anything you want.

Good luck mate.

Simon.   

Vatch, the only difference is they found it in my tonsil whilst I was under surgery. So as well as the neck dissection they took the tonsil. IM 8 days out. Eating well and almost off painkillers. I found the cocktail of them had nasty side effects but if needed. IM eating well. Bit taste a bit off. Tried a beer last night to no avail but coffee nice.  I have just cycled 15 gentle miles and may do the Liverpool to Chester ride next week if up to it. I wad luck not to need a tube. I recommend a blog on word press called the radioactive man by a guy called Theo not far from you who has been through this. Its a numerous but informative guide. Remember effects vary greatly between people. My neck burn was probably the worst for me and that came post treatment. Let me know if you need anything mate. Simon how are you nice to hear from you. Let me know if you fancy a bike ride next weekend!

Hi Guzzle,

I'd love a bike ride next weekend - trouble is I live in Surrey and work in London. Your neck of the woods is a bit too distant!

Vatch,

With your project planning head on I think you need to adopt a two-pronged strategy......

1. Hope for the best.

2. Prepare for the worst.

By prepare for the worst I mean things such as doing everything possible to avoid nausea - once it creeps in it's very difficult to shake off. Try to keep as active as possible throughout - frequent and gentle is better than short bursts. I decided to briskly walk at least five miles on every treatment day - I made my travel arrangements so that I had a one mile walk from my house to the railway station and then a 1.5 mile walk from the station to the hospital, each way. As I was running 30 odd miles a week pre-treatment this was easy at first but then slowly got more testing as things progressed. I was unable to walk even a mile at the end but I kept it going until week 4. Also, do everything possible to keep your calorie intake high throughout. If you can't eat then make good use of the tube - little and often is better than large meals. Get into the routine of turning your PEG through 360 degrees each day (I did mine in the shower). Keep a record of what you eat and your daily calorie intake. Record side-effects and symptoms as they happen and take this to your consultations. Write down questions as they occur to you and take these to your consultations as well. Get some support arrangements in place in case you should need them - how will you get to the hospital if you can't go under your own steam for example?

These are just my thoughts - you'll probably get better advice from your Macmillan nurse . Good luck.

Simon. 

Hi simon and guzzle....thanks for coming back...hows things

guzzle you must be one super human bloke....you appear to have dabbled in the impact of side effects....im happy for you that you have to....

simon your advice to has been brilliant too

from talking to the pair of you and via my treatment team I have great exposure to the spectrum of issues that I am about to face

Although im nearly 52 I still play 5 s side for an hour each week I play golf squash and for the last 6 months have taken up salsa dancing with my wife...so I know im in reasonably good shape going into this....and as you said simon its important to keep fit during to .....so im going to have one last game of squash and then after I have beaten my opponent...then tell him I did so whilst having cancer ...hehe...and I think I will get a couple of games of footie in.....but these will have to go as they will put too much stress on my body I think...so im going to try and keep salsa up as it quiet energetic..but I also have two dogs and I guess the 3 of us are going to be doing a lot more walking round the village

I have also decided that im going to start writing a blog .... my daughter is helping me with all the techi stuff there.....as I cant repeat myself 20 times to all the different groups of friends I have... I will be too tired and sore to do that.....so as soon as that is set up I will get that on here

as for me ... well I am entering the known unknown....I know the spectrum of good to bad I just have no idea where I will sit in it....most probably all over the shop....I am preparing myself as much as I can but I thjnk flexibility is the key here and making use of the brilliant technical team i have and friends and family support that I havd around me

well happy fathers day to all fathers reading this and its a shame england didnt come out with anything last night but I would rather going out fighting in the way thdy did than some of the boring performance we have seen in other cups....sorry changing the tune somewhat...

Vatch a change of pace is good! And happy fathers day. Having kids keeps you going. Have a look at the blog I mentioned on wordpress.I am Definately not superhuman but was lucky. Ive lost a stone. I've lost a lot of fitness. Ive just slowly jogged 2  miles as I need to build up but its easier if you have been active. Conditioning gos during treatment. You will lose muscle and fat. This is doable though and its over very quickly. I think Simon mentioned that he finds cycling easier impact and I agree. Regards, Gary

Hi Vatch

Glad to hear that you have your treatment plan in place and have some idea of what is likely to happen in the future.  Hope you are like Guzzle and have few and light side effects.  There again I think Simon is right in that you should hope for the best but prepare for the worst.

Enjoy your last game of squash - how your opponent is going to feel when you tell him you have beaten him while having cancer I am not so sure.

Very best wishes for the future and keep us up to date on how you are going.

Best wishes.

Gill

i all i hope you are all well ... better than Englands chances in the World Cup finals after that loss tonight ... we were never going to win it anyway

So it was back to Addenbrookes Wednesday just gone for bloods and a planning scan ... oh and to have my mask made too ... thats a weird experience ... it reminded me of the film Alien ... when they put the warm membrane over your face and it just molds to your face. looks cool though when its all dry

It was funny though it suddenly gave me a feeling of what i was about to go through over the next 6 weeks ... this mask and i are going to become very close i think ... literally yes i know.

so how are you all doing .... been out for your bike rides etc

Vatch, you can keep the mask. Im two weeks post treatment and feeling good . Taste a bit off but had first solo beer! Attempting 50 Chester bike ride Sunday. Keep me posted. 5 Liverpool players in England team and a 6 th wins game!