I've been on the group several times regarding my son, who had surgery at the end of June for Mouth and Jaw cancer. I've always received good help and advice from everyone. I know I perhaps come across as an anxious mother, but it's difficult to see your own child (even though he's 50) in so much pain. He recovered really well from the surgery, but has had a few setbacks. Firstly he got an infection in his mouth which was very unpleasant as everything that was coming out tasted awful, next he moved something for his children and pulled muscles in his back, so couldn't move for 2 days, then his wife got Covid !!! Obviously he had to self isolate from her and luckily he didn't get it. However, he is now having the radiotherapy, so far has had 15 sessions (he has to have 33 in total) and he's also had 1 session of chemotherapy, with another one next week. He is really struggling with the effects of the radiotherapy as can't eat even soup (he does have a feeding tube, so at least he can get the Fortisip, he also having problems sleeping and has swollen tongue and ulcers, as well as problems with his skin. However, he has pain in his leg where the bone was removed to rebuild his jaw, he saw a doctor on Friday when he went for his radiotherapy, and he said it might be a blood clot, however as it was Friday afternoon he couldn't get an ultrasound done to confirm this. The doctor prescribed blood thinning injections which he has to inject twice a day. It obviously quite a while since the surgery, so wondered if anyone else had similar problems. Thanks for reading my ramblings, I'm afraid I'm not coping with his illness very well some days. Take care and hug your loved ones.
Hi. I haven’t had this surgery but quite a few people in the community who have do report ongoing pain and problems with the donor sites. I’m sure chris2012 has experience of this. He will be on soon doubtless with his wise words.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I largely hid my worst times from my daughter because I knew she would be upset and the fact that she would be in torment over how I was suffering would have been even more to bear. My husband hurt so much inside but did a really good job of hiding his feelings because he knew I would have to cope with them as well as my own.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Good evening Macfarlane, i remember your previous posts, all parents are the same no matter how old their children are, sorry to hear about his setbacks as it sure does not help after this sort of operation. I never had problems with blood clots but was injected every night when i was in the hospital just in case but its good they are on the ball with the injections at home. Im afraid the pain in the leg will be there for a while as it has a lot of healing and recovery ahead, maybe you could ask for physiotherapy treatment next time you see his consultant as he might be able to do the exercises at home ( if he is up to it). I was on strong painkillers for my leg and still take it when i get any pain in that area, i dont think it will ever be perfect due to the removal of the bone but it does get a lot easier. After 13 years its still ok and i can still walk very well considering what was done, i took sleeping tablets as like your son i could not sleep so it might be worth a try as sleep is so important in the recovery stage. I would come of any sort of oral food as it will help with the ulcers and tongue as the side effects of the radiotherapy might increase as the treatment continues, there are sprays that help so again have a word with his consultant as they can help ease the pain for a bit. I know its natural to worry but he seems to be making great progress, it may be slow but it will come togetherin the end. All the best, take care.
Chris x
Its sometimes not easy but its worth it !
You are welcome Janet, hope all went well today, have a good evening,take care.
Chris
Its sometimes not easy but its worth it !
