Update . Wanna play guitar.

Hi Tim 

great news and yes some days 2 steps forward snd one back but you’ll get there in the end. Have you picked the guitar up yet ? 
Your post will give others hope so onwards snd upwards. 
look forward to next instalment. 
best wishes 

Hazel x

Hi Tim,

thanks for the update, for those of us who are following you it's great to know!  I had surgery last week for a very similar diagnosis so 6 weeks till chemoradiation can start to get rid of neck lumps.  

My main (nobody can possibly answer) concern at the mo is what to do about a holiday we have booked to Cornwall in August.  If all goes according to me counting off on my kitchen calendar, this will be about 5/6 weeks afer treatment - ie about where you are now.  The pictures of the balcony overlooking Mevagissey and the sea are keeping me going at the moment but????????  If I just felt tired and low that would be one thing, however, just one hospital in Truro would not be great if I needed medical help!   Like I said - impossible to know!!  

Anyway, thanks for the progress report, surgery has been OK but know chemoradiation is the next level!!

take care,

julie x

Hi Julie, Now this is interesting! This is a long answer..

I too had an operation called a Panandoscopy. This was an exploratory operation to determine what was wrong in my throat. The outcome was tonsillar cancer. They did remove the tonsil for biopsy at the time but the bed was still bearing cancer cells and my carotid artery was too close to allow any more surgery. My point is, would I want to get Chemoradiation 6 weeks after the op? My blunt answer is no way.  The reason I say this is because I am 65 and time is needed to heal . In the interim, I managed to picked up Covid 19 and had a good 6 weeks more before my Chemoradiation started. This gave me time to heal better for my physical condition 

When the MDT team  judge what you can take physically they judge it on your clinical age and not how numerically old you are. i.e. you could be seventy years old but present as sixty, non smoker, bmi under 25, non drinker etc. In this instance you’ll get the full monty and in the time scales they set!  
Onto your main question. Mevagissey, is a big draw and if you feel you could get there , please go. My profile fits what I’ve outlined above, as non smoker low bmi etc. and I managed to take all chemo sessions and all the rads. I’ll stand corrected but I was told only 60% complete the treatment which will set you back more than you can imagine. It is gruelling and here I am at 5 weeks and had my granddaughter yesterday for about 6 hours and I’m absolutely knackered! So there would be no way I could get a week in Cornwall sadly. I do hope you are physically fit and only 50 because you’ll heal quicker.

From what the bloggers on this excellent Head and Neck forum say is that most people need a good 12 weeks to come to some normality. In this light I’d get some more feedback from ex-patients before you commit. Good luck with your treatment( difficult but doable) and keep me posted on progress.

If you need hospital treatment as I have 3 times, I don’t know what facilities Truro has, may be worth checking as you could end up having to go Exeter or even Bristol for Cancer care. The Macmillan team will give you excellent advice too if you need an unbiased opinion .

Anyway Julie keep us all posted and I hope I haven’t put you off your holiday.

Best wishes. Tim xx

Hi Hazel, Great to hear from you! Yes, I have picked up my guitar and am very rusty. My fingers are the problem with the Neuropathy at the moment , mainly my right hand and my little finger on my left . I’m gonna persevere in the hope the exercise to my fingers will help. Will keep you posted.

I’ll post again next week after I’ve spoken to the Consultant. Meanwhile, check a post out from Julie who has replied to me about going on holiday to Mevagissey 5 weeks after treatment end ( 6 chemo/30 rads) Her question was would she be well enough to take the holiday? I replied saying it’s doable but would very difficult. Maybe you could give her some peace of mind and advice to her how you feel absolutely poleaxed at 5/6 weeks!

Best wishes. Tim xx

thats fantastic Tim thank you.  I am 52 but could be fitter and thinner!!  I am just too impatient and need to sort that out!!  I have an appointment next Friday so hope to find out more then about further treatment.  I know I def need it as neck lumps are too big and difficult for surgery.

Really don't want to give up on the idea of the holiday but prob am being unrealistic!  I want it so much for my husband and children too as they are going through this with me.  The lovely Hazel did manage to go to Spain in week 8 but who knows!!   

Will think on!

Julie

Hi Julie I am 10 weeks after 30 sessions of RT and 4 chemo and still on the mend. Still knackered and not doing much , I use to walk 3 miles every morning. I am improving though Thank God . All The Best Regards Min 

Thank you. It was grit  and determination that got me there . On diagnosis day  with oncologist I talked it over with him in great detail. I was prepared to loose my flights if we couldn’t go. It was my hubby’s 60 th birthday while we were there. So that was the main reason.don’t get me wrong it was hard we had words right up to the day of travel ( me n hubby) The journey was planned meticulously including checking in a suitcase full of ensures. I could have got off the plane at any moment right up to door closing. All you can do is see how you are with the treatment it’s the hardest thing I have ever done . My hubby credits us going g away with me starting to get a normal life back on track. I couldn’t eat any food whije out but we have our own place ehh here helped as we could pander to my whims. I would say you would need access to at least a fridge snd kettle. Fridge to store food supplements kettle to make mouthwash ie salt water rinses. 
Don’t rush either way see how treatment goes be guided by your body. 
here if you need help. 
Hazel x

Hi Tim 

I hsvr done we are all different I did fly to Spain at  week 8  for 3 weeks. But we were travelling to our own place so could cater for my own needs. Yes fatigue hits you for a  good while   Just listen to your body even now I have a 20 minute reset most days. 
cold  hands and  feet do get better or mine did but like everything takes time. Not sure if you have dry mouth ? But acupuncture I felt helped me recover my saliva. I had to pay privately. Some hospital s do provide it worth asking. 
Hazel 

Hi Tim

You are doing brilliantly it is so lovely to read these encouraging posts for those going through treatment.  I am almost 4 weeks post treatment so it gives me hope that in another week I will feel better again.  I have fatigue moments too, I tend to just rest rather that go to bed so I have a good nights sleep but yesterday I did have a little nap on the sofa in the afternoon for about 30 minutes. 

Eating wise I am about 70% eating normal food now just have a one to two Fortisips a day.  I am slow though and can only eat small portions so little and often is working for me but each day is getting better but I do have to really push myself to eat.  Taste is ok some things I can't taste at all for example I have a creme caramel yesterday it tasted of nothing and other things I can taste quite well.    I have put on around few pounds in the last few weeks I was just under 8 stone but managed to get to 8 stone 3lbs. 

Pain relief I have only used paracetamol all through and sometimes I take Ibuprofen again this is just for eating as I had (and still have) a horrible radiation burn along the whole side of my tongue but that is getting better slowly (although some days it does flare up).

Hope all goes well with your first Consultant review on Friday, wishing you a continued speedy recovery.

Sue

Hi Sue, that’s a very encouraging reply. Yeah ,  it does improve but  agonisingly slowly. We all want to wake up the next morning and be normal!

My taste is all over the place too. I had a couple of days where I thought, at last, it’s returning but over this weekend hardly anything. Putting ON weight is excellent and my dietitian was really pleased I’d put about 6lbs on. So, well  done to you.

I believe we have to respect Mother Nature and let her do the work . We all heal differently and at different rates. As long we get there that’s the main thing.

Anyway, lovely to hear from you. Keep me posted on progress and I’ll write up my events next week.

Best wishes Tim xx