Hi. I had adenoid cystic carcinoma in my mouth 13 years ago. It was removed and I had a 4 week course of radio therapy. Apart from being left with an ora nasal fistula for which I have to wear an obturator everything has been good. I’ve continued to have an annual check up with a CT scan of my thorax every other year. However 3 weeks ago I had a 5 day headache with badly disturbed vision which was diagnosed as a particularly nasty migraine. However, despite the headache almost disappearing I continued to have vision problems so last week I went to the opticians. Because I had lost part of my field of vision she thought that I had had a stroke and wrote to my GP. I got a same day appointment with a nurse practitioner who prescribed blood thinners and statins and did an urgent referral to the stroke clinic. However the day after my vision became much worse and my son took me to A&E where I had a CT scan of my head. This ruled out a stroke but indicated 2 areas of swelling, which because of my history and the fact that my blood results didn’t show any sign of infection, they strongly suspect is cancer. I have been put on 8mg of Dexamethasone daily for 10 days, am having a full CT scan on Monday and also need an MRI scan of my head. I have a good support network and whilst my head is in a bit of a spin I am so worried about my 31 year old son who has recently split from his girlfriend and is back home with me. Any advice?
Hi Lyndylou52 and a very warm welcome to the Macmillan Community but sorry to hear about your ongoing investigations.
As you already know navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer type journey can help a lot. (I have a completely different cancer).
The Community is divided into dedicated Cancer Specific Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Head and Neck Cancer support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group click on this link> Head and neck cancer 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)
When you are ready you can introduce yourself 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.
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 give support to all the family.
Do get back to me if you need further help navigating the community.
