Hi there.
A bit about me, I’m an Emergency Staff nurse who has been diagnosed with oropharyngeal cancer HPV related 
After an extremely rocky start where I had a reaction to the general anaesthetic for a biopsy, emergency review and tweaking of PEG Tube due to extreme abdomen pain, and then 2 night stay in hospital with shortness of breath ( all in the space if 6 -7 weeks), I am struggling to see any progress and need some practical advice on how to cope with it all.
I’m such a control freak and this is definitely out of my control.
I also very much appreciate this is only the beginning; 2 weeks of radiotherapy out of 7 completed and 1 bout of chemo with 1 more in a few weeks time. I know it’s a long road ahead, but I could do with some advice please.
I’m such a foodie and everything is tasting of sea water! I have tried multiple drinks but everything is tasting of extreme salt. Does anyone have any recommendations please? Does it ever ease? Does it get worse ( I hope not )
I think I can survive most things but this constant thirst that I cannot quench is awful. I’m stringing water into my leg to keep me hydrated but then I get a taste of salt after each syringe full.
Many thanks from a person who doesn’t like being on the other side of the fence.
xx
Hi Bexibex and a very warm welcome to the Macmillan Community but so sorry to hear about your diagnosis and journey to date.
I know from experience having been on my cancer journey for over 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable), Asbestosis and Prostate Cancer that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you look to join and put up your own post in our dedicated…….
…….. support groups.
These groups are safe places to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.
To connect in with the group please click on the link above……. then once the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
As always the Macmillan Support Line is open between 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 and financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
