Hello,
I stumbled across this forum when trying to make sense of what’s happening to my mum. She was diagnosed with HPV cancer on her tonsil, base of tongue and lymph nodes all on one side. They had said there is some white dots on her scan on the back of her voice box they need to biopsy under general too. At the appointment they told her she needs radiotherapy and chemo and a ct of her lungs. Today she got a call from her consultant to say they have cancelled the ct (which was today) and have opted for a full body mri which I assume will be this week.
She’s only 59 and I’m 33 and terrified to be quite frank. I have kids and a job and I’m trying to keep going and be strong for her. Mum is still working, going out and living life as normal until she can’t anyone I guess.
The not knowing if this will be treatable or not is the worst part. I know treatments have been mentioned but now they want to check her whole body and I so scared for that result.
Thanks x
Hi Tankyn and a very warm welcome to the Macmillan Community but sorry to hear about your mum’s diagnosis.
A cancer diagnosis in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer type and support challenges will help a lot (I have a totally different type of cancer)
As you can see the Community is actually divided into dedicated Cancer Specific Support Groups (Discussion Rooms) so with this in mind and to widen your support platform can I recommend you also join and post in our dedicated Head and neck cancer support group. This is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.
As for the practical and emotional challenges of supporting your mum you may benefit from joining and posting in our Carers only support group where you will connect with others navigating the exact same support challenges.
To connect with a group click on the “Bold Italic Links” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
It is an emotional time supporting your mum so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and support all the family.
Do get back to me if you need further help navigating the community.
Hello Tankyn
Please do pop into the head and neck cancer group. I hang out there and I’m just coming up to my five years at the end of January.
HPV cancer is curable. It responds very well to radiotherapy so hold onto that.
Have you had mum’s results yet?
We are a friendly bunch and there’s always somebody around to talk to…. Even on Christmas Day.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
