Advice

Hi KMJ19

There were a few times when I was left waiting for appointments or felt nothing was happening.  What I always did was phone the hospital and ask for an update.  It took me a while to work out who could help me best.  I ended up with a list of useful names and when possible I got direct phone numbers and email addresses too.  My Consultant and Oncologist both had secretaries who were usually helpful.  My hospital had an appointments booking dept and I could ring them with enquiries.  My Macmillan nurse was wonderful.  If I was struggling for a response she was great at sorting it out.  

Good luck, let us all know how you get on.  xx

I can't believe you were given the information by phone with no appointment made to see someone. I know your results will need to have been discussed at the MDT meeting but I would have thought they would have arranged to see you directly after that. Maybe they've contacted you today? If not I would get hold of the CNS tomorrow. It doesn't seem fair to leave you in limbo - I'm so sorry. Its hell to live with the unknown and uncertainty.

Well done for keeping upbeat! Stay positive - you will soon have a plan.

Best wishes,

Hilary 

Good evening KMJ19 , i agree this is way out of order and you should not be told this information over the phone it should have been through a meeting with your consultant, maybe they do this to cut down on appointments at the clinic, it's so wrong especially with how you have been treated. Well done for being positive, please don't let this drag you down, you must try and speak to one of your team or the consultant's secretary at telling them you are not happy with the way you have or are being treated and ask for an appointment a.s.a.p to put your mind at ease . So sorry you are going through this, best wishes, take care.

                                                                                                Chris x

Thanks everyone for your posts - I will use some of your suggestions re. Contact/communication with the hospital team moving forward. 

I was called into clinic today - I will be having a tonsillectomy next Tuesday then  referral to oncologist to start radiotherapy and chemo. There is a lymph node which was identified on the pet scan at C3 but the consultant is happy that this will get sorted during treatment rather than carrying out a neck dissection.  

Once again, thank you to everyone who has taken the time to reply to my individual posts and other contributions within this forum. You have kept me sane since I was given the dreadful news almost 4 weeks ago. You are truly inspirational. 

Thank you xxxxx

Hi KMJ Don’t worry too much I also had a lymph node near my c3 spine that wasn’t operable ie by a neck dissection but oncologist said don’t worry the radiotherapy will get it and true to his word it did. The dead cancer cells collect in our lymph nodes I had ine big one that we called Larry and several poorly differentiated one including the one near my spine. I d you've read my blog  you will see that 8 month post radiotherapy I am biking in Spain and walking living my life. Ok back him with in wet Yorkshire now but enjoying having our grandson to stay. The road  can be rocky treatment is hard but  doable and outcome tends to Ben good. 

Any questions just shout out 

hazel 

Hi Hazel, 

Thanks for your post and for sharing your experience. 

I have looked at your blog (albeit briefly) and was telling my mum about your journey and active lifestyle this afternoon 

You are amazing and have definitely contributed to my positive outlook. 

I am planning on returning to your blog once the treatment begins. 

Best Wishes xxxxx

Hi KMJ Thank you pass it on to rest I of yourvfamiky  we’ll will save you having to keep repeating to everyone itbwillmguve them an indication of what you may have to go through. The mask the treatment etc will be the same , I found it the easiest way for people to even imagine what I was going through. 

Ask away anything you want to know , when you start on the blog scroll,Dow in tomyhe beginning as with it being a blog latest post is the first  you will see infinity that makes sense. Good luck for next week come back on and tell us how you’ve got on when you feel like it Remember painkillers are there for a reason don’t suffer in silence you won’t become addicted to them if you are taking them for pain. I take nothing at all now apart from my b p tablet and omaprazole for acid reflux which was brought on by the radiotherapy 

h xx