Hi. 8 weeks post treatment and scared

Will do. Thank you 

Hi JCPH

Sorry for late reply to your post but I’ve just returned from my second holiday after having T4 right tonsil cancer which by time treatment started had spread to base of tongue and activity in left tonsil too. Plus several lymph nodes on right hand side.

PEG fitted two days before it all started :7 weeks radiotherapy 2/3 planned chemos and nearly 5 weeks in hospital due to sickness dehydration and pain.

What a time it was ,scared wasn’t the word !!..I was petrified from start to finish thankfully my guardian angels Dani and Hazel and the lovely members of this group helped me through x

Waiting for my MRI and PET scan results was horrific but believe me when i say HPV related H&N cancers no matter the size( T1-4) have over 90% cure rate

K️eep that anxious brain busy(I watched anything and everything) to drown out any negative thoughts … I had 3 days post treatment where I felt I couldnt go on and many more where I was so exausted from the mucos/sleep deprivation/fatigue/pain lymphedema the lost went on and on…. but keep battling through because life will be sweet again….

7mths on Two clear scans results, cherishing every moment loving life  x

gone from being unable to even sip water to two drinking 2 bottles plus 2 fesbuin drinks(fortysips) yogurt and a trifle every day …still have PEG but Im happy to keep it in untill things improve even more .

Do  exercises each day neck ,shoulders etc watch out for swelling ( lymphedema) contact your team asap if you notice it .Keep  on top of oral hygeine routine, mouthwash sprays etc .Rest when you need to and get some sleep its essential( even if sleeping tablets short term are needed).

You will soon turn a corner back to feeling slightly normal again , notice the tiny changes and recognise how amazing ypu are for getting whrre ypu are today!!

Sorry my answer is so long all the best fpr your recovery we are with yoiu all the way x

Debbie

Hi Debbie thank you for taking the time to reply to my message! You are absolutely right about Hazel and Dani they have been amazing along with all the other lovely people who were kind enough to reply!

It's been to be honest the most horrendous experience I have had to date. I did not cope well physically with the treatment! I too Just after treatment was in so much pain I felt like giving up! The support honesty and kindness shown by the people on this platform gave me and are still giving me courage when I am at my most vulnerable and scared.

I am encouraged and feel safe knowing I am not alone in this ! I admit I am scared re the PET scan and the result but like you am doing everything to remain positive and occupied!

I genuinely want to be an advocate for others who are on this journey and really want to help.

It is hard for me right now to see and experience such a change it is hard right now to remember the positive person I once was. Hopefully she will return in time? 

You are all fantastic on here!

You have a fantastic day and weekend and I genuinely hope you continue to receive good news at your scans and enjoy life to the full!

To JCPH,

Thank you x( and you too

)Many of us feel we lose ourstrength and positivity during and after treatment and cant imagine it ever returning but you are already there ….being brave enough to post ….. all of this helps others  who are reading through , feeling at their most vulnerable point of their lives …i know I did.

T4 is only the size of your primary tumour yes it’s big but doesn’t mean treatment is less likely to work x There are others like me who had T4s and now on road to recovery…

Any questions just ask x Big hug 

Debbie

Debbielouise said:

T4 is only the size of your primary tumour yes it’s big but doesn’t mean treatment is less likely to work x There are others like me who had T4s and now on road to recovery…

JCPH 

Spot on. It just means that you get a wider field irradiated and have worse short term side effects.

I've just seem photos of Debbie in the sun. She looks fantastic

Thank you Debbie! You take great care x

Thank you Dani! I remain cautiously positive. You along with others are true inspiration! Thank you!!! 

Hi JCPH

Im a T4 survivor I got the all clear and one of the lucky 90% of people that treatment has worked for.

I had 7 weeks radiotherapy and like Hazel only 2 of the 3 overnight chemos ( due to extreme pain and vomitted).

I felt dreadful 8 weeks post treatment my Oncologist said give yourself 2 years for your body to rest and recover .

Being scared and anxious around PET or MRIs is normal keep that brain busy watching anything/everything on TV Netflix etc… plan an amazing trip for the future.

Im 7.5 mths post treatment just started taking all feed by mouth and a daily trifleor yogurt some times with alittle soup or spaghetti hoops .

Its a long and steady road to recovery .

Thinkiing of you

Debbie

Hi Debbie

Thank you for your reply.

My you had a rough time! I take some encouragement from your positive words and I am trying to keep busy and occupied!

The thing that's letting me down is I have severe tremors  (not sure where they have come from) which slows my eating down. It also affects my sleep which let's the anxiety voices start.

I sincerely hope to be where you are at the same point! Well done taking solid foods by mouth! I am eating fully by mouth but my diet is more limited and I don't have an interest in eating its more a chore . I even attempted a full English breakfast..  that was hilarious and I top up with complan. It's all a bit of a battle but taking each day as it comes. Positive positive!

I wish you well for your continued recovery and hoping you have a fabulous weekend!

Take care xx

Wow you are doing brilliantly with eating thats amazing.

I’ve learnt to control my anxiety by watching things in my phone( at first it would take 2 epsisodes to stop the anxiety voice in my head now I really hear it.

I don’t sleep untill around 5am till8ish so  every few days I take 2 zopidem which knock me out after abput40 mins of taking them and then i get 5-6 solid hrs sleep really helps x

maybe speak to your GP about your sleep issues and maybe some Counselling to talk about the anxiety /fears,Mcmillan and local cancer charities also offer Counselling including telphone or zoom/whattsapp etc.

Plus the lovely people on this group all so supportive when you need it the most x

Debbie ( one day at a time)