Hi
My husband finished 7 weeks of RT end of March. 10/6 is booked for full body scan and 4/7 we meet with consultant for results. The 12 weeks post treatment in some ways is worse than the 7 weeks of treatment. Side effects seem to be changing, some worse some slightly easier and some new ones. Last week we noticed a large pouch of skin appear at front of neck which is slowly getting larger. The hospital said it looks like Lymphedema but want him to wait for full body scan (10/6) this is yet another new side effect of post RT treatment. He is also finding it difficult to sleep at night, sometimes only managing to sleep for 2-3 hours which makes fatigue even worse. I am now starting / trying to ‘liquidise’ his food again as he is finding eating a problem again, some days he cannot even manage or want to have the ensure drinks
I can remember us being given the name of a cancer nurse who will be assigned to my husband during and after his treatment but do not know how to get in contact with her.
I would be grateful for any suggestions of where to go for help and advice, this is such a lonely journey
Hi Haigh, warm welcome to the forum, I am assuming by the title that your Husband had cancer of the vocal cords and the treatment has been to clear that cancer, was it chemo and radiotherapy as you only mention the RT treatment.
I didn’t have that treatment for my Voicebox cancer as they suggested a Laryngectomy would be the best course of treatment for me and I didn’t have any after treatment for any possible cancer being left.
I have however just got to the 12 month stage of my Oesophagus cancer treatment being completed and had Chemo and RT for that and as it is going at the moment very successfully, unfortunately the RT treatment continues well after the course has finished and is intended to so side effects continue for a while, I cannot say how long as it depends on the strength etc of the RT, also chemo stays in for quite a while and I still have side effects now. This is the reason no scanning can take place for 12 weeks as the body is still radioactive and the scan won’t detect any changes.
As for a Nurse contact, really whilst they normally assign a Nurse you can always speak to anyone in the Head and Neck Department – normally Ear Nose and Throat or as it is with the voicebox you will also possibly have a Speech Therapist assigned, that is who I report to for support with my Laryngectomy/neck problems
I do hope he starts to feel better and please come back if you need further support etc
Take Care both of you
Tony
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Onwards and Upwards
Laryngectomy and OC survivor
Lead Volunteer for Hampshire MacMillan Buddy Service
