Last Update (21/05) - Ho Hum, Seconds out - Round 4!

Hi Peter Great to hear you are doing so well , Regarding the jaw exercises and everything else I can only vouch for them as they really do work. Get out and walk is a life saver imho. Regarding lymphoedema it's a matter of massaging your face etc . I had it like a turkey neck for a while but had a neck dissections so happy days no more Lymphoedema to worry about. Keep up the progress and always think positive . All the Best Minmax 

Hi Peter, re lymphoedema.

“There is not a lot they can do in the hospital for me with the lymphoedema – its down to using the massage techniques he showed me to move the fluid.  This is exactly what I wanted to know as the oncologist only showed me 1/3 of what was needed to do when I saw him in March and I was wondering why it was not getting any better!”

Fortunately, my lymphoedema was relatively mild however I was referred to the clinic to be given exercises that could do at home. I was also given a “Hereford Collar” to wear. I don’t recall any mention of these on this forum but it was easy to wear and hopefully did add to the manual massages.

Wishing you all the best with your recovery and your upcoming scans.

- John

Hi John just so you know they can send out a video of what to do as I had in-depth training on it but had a neck dissection so very little there nowadays . All the best Minmax

John, thanks for that.  The session was really useful as it explained why this is happening and how to manage the lymphatic system to help it drain using massage.  Having the opportunity to see a professional who understood the issue was immensely helpful.  The massage is for home use - thus the statement that they really can't do anything in hospital - but I do have the right to self refer back for the next 5 years. 

They suggested an update on the collar which looks really useful, but it is not on prescription and it is out of stock for a few weeks...

If you search "Lymphoedema Support Network" on UTube then you will find the video recommended to me.

Hi Peter, thank you for sharing your journey with us. I am newer to this forum, but have been following your story for awhile. I hope you are doing okay post-treatment, sending you all the best in your recovery!! ~Tara

Hi Tara

I am doing well, thank you.  Recovery is a long haul but 10 weeks in and the final large ulcer on my tongue has finally healed over so the pain is still there but more manageable.

Still on relatively soft foods, but now the ulcer has really started to heal I think in a week or so I will introduce more adventurous foods into my diet.

I've a PET/CT scan on the 14th May and see the consultant on the 21st.  Fingers crossed it has gone. 

H again Peter! I'm sorry to hear about the tongue ulcer(s), they are so very painful :( Hopefully the pain will really start subsiding for that last large ulcer you are dealing with. And, I'm sure you are looking forward to the adventurous food part of the recovery :)  This treatment is so rough.  I'm nearly 10 mos post-treatment, and I just started feeling somewhat "normal" again maybe about six weeks ago.  I wish you all the best with your upcoming scan, and I look forward to seeing your updates :)  My scan in November was clear (just had inflammation), and I have my next one close to the date of yours, on May 10th.  Thanks for sharing your journey, and sending you all the best from the U.S.!

newtothisforum said:

My scan in November was clear (just had inflammation), and I have my next one close to the date of yours, on May 10th. 

Hi...as a matter of interest how often are you scanned post treatment? is this MRI or PET/CT?

We usually get just the one a few months after CRT finishes but we are reviewed for five years.

My last one is today.

Interestingly the ulcer finally healed over on Tuesday night.  By this morning I am absolutely pain free, although I can still see the nasty mess inside my mouth.  I was able to have tomato soup last night (the acid in it always had me on the ceiling) without any issues .  A couple more days and I am going to introduce some really solid food into my diet to get away from the soft pastas, fish and shepherd  pies which are getting so monotonous.