I was diagnosed with jaw cancer in .February, and had an operation to remove the mandible and replace the bone with a bit of my fibula on 7th April. The operation was long, and my tumour was apparently large, and to be honest, I wanted to die for the first three days and the next five weren’t much better. Then my tracheostomy was removed and I got back a voice of sorts. Next the feeding tube was removed, and after twelve days I went home, feeling broken and very different from the person I was when I went in. It’s now four weeks after my operation, and I do feel more active and able to cope, though eating is still a problem, and I don’t like the rearrangement of my face.
I did get some good news, however, when I saw my surgeon for the lowdown on the histology of my tumour. Apparently, although the tumour was large, my clever surgeon had managed to get it all out, with clear margins, and no cancer in the lymph glands. As a result, I was offered four weeks of radiotherapy instead of the expected six, as all the doctors had expected a different histology result.
my dilemma is this, and I’d be grateful for any input from fellow cancer sufferers. My husband is disabled with Parkinson’s, and until my cancer was diagnosed I had been his sole carer. We have been given an hour’s care for him a day, in the morning, but otherwise the burden has fallen on two of our sons, who live in Brighton and London, and therefore have to travel a long way to help. This they’ve been doing, but obviously can’t do long term. Each has spent every other week looking after us, but they have their own lives, and I feel enormously guilty leaning on them like this.
i am seriously wondering whether to refuse the offered four weeks of radiotherapy. The side effects of radiotherapy to the head sound absolutely horrendous, and many are long term. I don’t feel well enough yet to begin this, yet it starts in 10 days’ time. I have to travel to the hospital and back each day, as there is no facility for accommodation, a journey of one and a half hours each way. Then there is the good result, which implies that I am cancer-free. I should add that I’m 81, and believe life is about quality, not quantity.
So, I’m hoping you kind people out there can advise me, or tell me your stories, and help me make up my mind.
Hi Goolden and warm welcome to the Macmillan Online Community although sorry that you had to find us and especially sorry to hear about your diagnosis and ongoing challenges.
A cancer diagnosis (in the family) can be challenging in so many ways but talking with others who are walking the same type of cancer treatment journey will help you navigate this difficult time.
The Community is organised into cancer specific support groups so can I recommend you join our supportive Head and neck cancer group as this will be a good place to connect with patients and families navigating the same type of cancer treatment journey.
To join a group just click on the link above then choose 'click to join' or 'join' (depending on the device you're using) on the page that opens.
You can then introduce yourself by putting up a ‘New Thread’ or hit the box with the X on the top right (phones), you could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service can give lots of information, support, financial guidance or just a listening ear. We also have our Ask an Expert section, but do allow two working days for replies from our expert team.
All the very best
Hi Goolden. I'll try to answer this here but please do pop over to the Head and Neck group Mike has pointed you to.
Absolutely brilliant that you managed to get through all this.
Re the RT the side effects are significant but not everybody gets them and there are two things in your favour. One, the beam will be targeted finely and should avoid much of your throat which is where we feel most of it and two, you are getting only four weeks instead of the routine six or seven. This will lessen the effects considerably. Please do talk to your consultant about this.
One of our community members, Terry, who goes under the name of Penrod had similar surgery. He has a blog HERE
Have a read of it, its informative and very entertaining in a macabre way that only us cancer patients can understand
Good luck
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
