Hi Mo

do as Jane says ring the hospital,I used to find emailing the Macmillan team was also a good way to see what’s happening.The timetable in my case was 63 days from diagnosis to treatment staring or my health trust would haven uncurred a fine and guess what everything was done for the 62 nd day and the morning of the 63 rd treatment commenced. 

Tend to agree with Jane re lung issue as our lymph nodes hold the dead cancer cells in our necks if that makes sense before any strays start to migrate southwards. In my own time span to start with I had 2 lymph nodes that were affected and by treatment time the last ctbscan showed I had 5 one nig one and the others were smaller sontry not to dwell on the issue of spread easier said than done .but once it’s all system set to go it does work very quickly. 

Fingers crossed you hear something soon.

Hazel x

Hi Jane and Hazel

Thank you for your response, its much appreciated.  My case is a bit different to most on this thread only joined because I was after a bit of advice on feeding tubes.  I have stage 3 in the Epiglottis, been told Radiotherapy wont work as its in the cartilage, so best chance 60% of a cure is laser surgery.  had all the USS and CT before MDT meeting and was also told that there was something at the apex of my lung so refered to lung clinic and a PET scan but that it would not interfere with treatment of the throat.  Got pre op appt and surgery was booked for last Thursday.  Got a phone call late Tuesday to say it had been deferred by consultant until after PET scan.  This was done on Friday and now i have deathly silence so I have no idea what is going on.  Am under Southampton and they use a private company for PET scans who guarantee results in 48 hours so this is why I am getting antsy.  Sorry for long post.  Normally I am a happy upbeat person but this silence is killing me...

Thanks again and hope all are having a good day xx Mo

Hi Mo

Okay Im more in the picture / loop now. I had 'something in my armpit' on scan and got referred to breast clinic just for the joy of it. They knew best there what it was or rather wasnt but just piled on the angst.

48 hours to report.... then the team has to meet on their allocated MDT day to discuss presumably? You were told it wouldnt interfere with the epiglottis so take (keep) that on board for now.

I only had throat and neck surgery but am keeping my pals who were diagnosed around the same time as me company on this thread and a 'heres what you could have won!' eye on things.

I guess the question you have is 'has it been reported on yet? and 'so whats happening now and when?' 

Good luck. Keep us posted please. 

x

Hi Mo re pet c t scan you aren’t on your own with it bring out sourced Leeds do the same I had a 10 day wait for my results that what they told me but actually were back within 4 days. 

Although yours is different to ours keep in touch. 

Hazel xx

Thank you Hazel,Ian and Jane for your advice of your experiences-it's really reassuring and stops me getting myself all worried-for nothing too by the sounds of it. I think my husband is pretty on track-which has cheered me up. I re read your blog Ian (the weeks we're currently at and it's very helpful). I like your quote about taking the stairs in recovery-gosh how true!! I would be interested in your action plan to exercise etc you got so I will PM you-thanks.

You're right Jane about psyching yourself up for food-that's what he does and it's nice to hear he's not the only one and it's normal. You sound like you're doing really well and you say you 'only had 3x surgery' wow! there's no 'only' about that. But 4 weeks post op you sound like you're doing fantastic-well done.

Good luck Mo with finding out more-phone the hospital tomorrow in the morning and tell them you need to know by the afternoon and you will be phoning back.

Night all-thanks again for your support-much appreciated and you made me feel so much better. Joy x

Ian/ Hazel

One if you recently posted a list of top tips, I’ve been back through the last 10 or so pages and can’t find it, any chance of you copying and pasting it again please?

Cheers for all you advice that you come up with. X

Hi - re Tips

I have a bunch of tips and all together in one section of my blog ( near the end)  hope that helps.

radiotherapythroat.home.blog

Onwards & Upwards
ian

So a little update and following my latest appointment with medical support team yesterday.

To put into contex my tretament stopped last November and I have been having lingering side effcets a little longer than some. That said, I was reminded my my specialist nurse again that recovery to a new normal can take up to 2 years. My consultant also refers me to this two year period of road to recovery.
This will obviously mean different things to different people but I guess the point they made to me is that some will have lingering side effects that dont really stabalise properly for around 2 years.
Also to bear in mind that some, including myself, who have had tonsils out that this operation itself can take a full year to recover from.
All in all I have learned to accept from the people who know what they are talking about and I tend to follow professional advice. Have also learned there are certain things we can do to help ourselves and why I have found it so helpful to be back in the support system and with an action plan.

Back to work next week on protracted phased return with 3 days a week Mon/wed/fri to start with and 3 hrs a day. This also comes with a common sense approach and is not a tablet in stone.

I have been referred to a clinic called "move me" and they will work with me to design an exercise plan, again baby steps, and work out whats best for me and what to aim for, I will do this in my own preferred environment eg health club with bike that supports my back but they agree a plan with me.

Fatigue still not 100% but I definetely see an improvement and not up during the night and managing to get undisturbed sleep now. Still need bed during the day sometimes but this is getting less and less so I would say starting to see a brighter light regarding fatigue.Always been an early riser to up around 5/6am as usual sometimes but I'm so pleased to see at long last improvement in this area.

Diet and appetite was main discussion again as fuel intake is the biggest driver.
Dietitian again re iterated the science around good calories and wasted calories and at my particular time i should now be looking at a more healthly balanced diet.
The good calorie/ wasted calorie explanation is around trying to make sure we get as much nurtitional value as we can as fuel and to try and avoid wasted calories like chocolate/sweets crisps ( if able anyway). These are wasted calories,add no value for us and will give a high sugar hit but also contribute to any fatigue issues. A lot of us were advised to eat high calorie items during recovery like full fat milk/yoghurt/creams etc and that is to try and pile on or at least maintain weight during recovery as much as possible. the radiotherapy is still working some time time after treatment stops and our bodies are looking for glucose/evergy from anywhere it can get it. If we dont/cant eat then body will look at reserves and thats when we start to lose weight/lose muscle as body goes for fat or fuel anywhere it can. Was also told to imagine that after treament your body is still running a marathon. While understandable, so many totally underestimate the recovery period and time it take along with the side effects after treament brings.
It is not easy , i know, but I kinda tried to think of fuel intake as medicine rather than meals when I was at my worst. That said I was a case in point where I coundt/woudnt eat and was on 6 ensure supplements a day. and at one point only took 2 a day and my body eventually went into starvation mode I was told.

We each have our own way of dealing with but what has definately worked for me was going back to the support team and working out and sticking to an action plan.
Basic outline  re food action plan is that I log everything that is going into my body on a sheet and then we can sense check with team and adjust if necessay and discuss progress (or not)
So little breakfast/ something mid morning/lunch/mid afternoon and dinner.

Sounds a lot of effort and it can be but I forced myself religously to make sure I logged something at each time on the sheet and knew I had to report back what was logged. No point in lying/cheating as its only to yourself so if I missed a meal or time I left blank but these were few and far bewteen.Little more often is the key and breakfast might be oats with milk or a yogurt..mid morning...banana/yogurt..2 soft boiled eggs lunch..brioche roll if able..soups are ok as are ommelletes/stovies etc that are all easy to disgest but slowly building up energy. Avoiding wasted calories like choc/sweets etc helps. I sturrgle with chicken which is common, but stovies, slow cooker cooking with tender beef worked with mash..just some examples/ideas

So this is not just made up by myself as an idea/opinion and was advice given by my medical support team who have been fab and monitor my progres all along and for as long as I want them to.

Back to one of the favorite saying on here in that we are all different and thats true and what might work for me might not work for all, but if it helps even one person who kinda falls in line with my revovery road or experiencing similar side effect issues then thats a good thing.It may be worth a try or at least be a catalst for discussion at any medical team meetings.

As well as there being a science to our treatment there is also a science to our bodies and recovrey and I guess the trick is to find the best solutions possible to help us nudge foward in a realistic timeframe.
I've updated my blog a little for anyone who is interested and I thought i would update my thread here as well as not only is it theraputic for but it does show the progress made since I first started this thread last year. It's been a great community spirit with so many contributions and helping one another.
I hope some take a little from the medical team updates and hope it helps at least one person with a little more understanding and coming from the professionals.

note: i have an excel spreasheet that i made up to log/record my fuel intake each day and then used them to dicuss at team meeting. My email details are on my blog if anyone would like a blank copy and an example of what i completed and am happy to send on an attachment file that can be customised to be used by anyone.

radiotherapythroat.home.blog

Finally, best medcine for recovery is water to keep hydrated which also then uses throat muscles....

Drink, then drink again, then drink some more

Onwards & Upwards ( 22 days until Toy Story 4 out on realese) and to Infinity & Beyond........
Ian

Usual excellent post by the original thread starter, thanks Ian, one question; ever quantified just how much water you get through in 24hours inc bed ?