Just want to connect with you.

Hi 

First if all you’ve come to right place we all send hugs so here is one from me .

we can’t diagnose on here all we can do is tell you our story’s , I am now 17month post radiotherapy for tonsil cancer with several effected lymph nodes. My story is in detail in blog info below. But briefly I had a lump above my collar bone thought I has pulled it cycling ! Umm little did I know it was a primary cancer in my tonsil amd the lymph nodes were holding the dead cancer cells.the rest is history .

please don’t press it prod am sure it won’t do anything but yiu never know ,Tuesday isn’t that far away keep off st google stay with Macmillan of cancer U.K. sites.

yes we’ve all played the waiting game ,when you’ve got results come back on or if yiu need reassuring come back there’s a few if us in here who’ve been there done it got the t shirt so to speak!

sending hugs

Hazel x

Hello Allthecolours and welcome (sadly) to the group.

Personally I had no pain at all signalling a problem so can't help you with that, just a little lump in my neck.

Great that you have such a good support network around you; I'm repeating myself here (so apologies to members who've heard it fifty times before) but I really do think this journey is tougher in many ways for our nearest and dearest, because you'll get constant care and attention from brilliant professionals....and they won't.

Best wishes to you and yours and a big hug (I love a hug)! 

Thank you, Hazel. I don’t have long to wait until Tuesday, and I’m hoping I will get some information from the ENT appointment.

Well done on the blog: I’m sure it must be helpful to people who read it. I am a poet, so I’m sure this whole experience will give me ideas for writing, when I’m ready.

xx

Hello, and thanks for your reply. It was particularly helpful because my husband keeps all his emotions well and truly hidden. I have started encouraging him to gather support for himself as a result of what you said. He’s phoned the Macmillan helpline this afternoon while I was out with a friend. He also says counselling is available via his union. I’m hoping there will be a local support group where he might meet someone he relates to.

Thanks for the hug, too.

On the subject of counselling be on the look-out for some potential depression post treatment. Many (me included) suffer quite badly when it's "all done" and you no longer have the security of your MDT blanket around you; it's literally a type of PTSD. Rather than write out how I felt I'll take the lazy route and quote from my blog, happened about five or six weeks after the treatment was done...

"After all the stresses and strains I decided we deserved a bit of a break so I booked four nights in a yurt in mid April. They're only about five miles from home but looked right up our street http://www.blackdownyurts.co.uk/  and indeed they were, absolutely beautiful. Unfortunately, two or three days before we were due to go, my mood completely went off a cliff. Subsequently found out that it's not uncommon that after all the intensity of the treatment and initial recovery people can get depressed, but I've never felt anything like it in my life. I literally had no motivation to do anything at all, all I wanted was to stay in bed and I had no idea why, couldn't begin to put my finger on what I was depressed about. Horrible time, for all of us obviously because Deb (wife) and Josh (son) had never seen me like that, and sadly Deb and I just managed two nights at the yurt (second of which I got out of bed at 3.00pm) before we had to come home because I was such a miserable sod.

Anyway, saw my GP and got given some anti depressants, then got a counselling appointment at "Force", who are a cancer support charity in Exeter. Walked in, sat down and burst into tears, couldn't speak for ten minutes. But the guy was brilliant and between him and the pills I picked up really quite quickly; very unpleasant few weeks though."

You’re welcome hugs are free ,look forward to reading your poetry when you are ready. 

The blog gave me some sense of control if that makes sense in what was basically an uncontrollable situation by me .

please come back to us after your e n t appointment.

sending hugs 

Hazel xx

Really interesting what you say about your writing giving you a sense of control. I have taught therapeutic writing for people with mental illness and have used it myself to overcome childhood trauma and resulting depression and anxiety as an adult. Writing is powerful, and healing!

Thanks again, and I will report back on Tuesday!

Louisa

Xx

Thanks for this. I’m so sorry to hear you suffered this horrible depression. I understand it can come as a late side effect of chemo, which is good information to have when making decisions about treatment. (I have bipolar, so my GP will be watching my mood like a hawk.)

You have also reminded me that it was terrifying leaving the hospital with my baby daughter after she had been there for 40 days; leaving behind the consultants, surgeons, nurses, dieticians, and the children’s ward psychologist who gave counselling sessions. 

I hope your depression is well and truly banished now. 

Thank you for your posts.

Louisa

Hi Louisa 

Thank you for your comments, one of main reasons I am continuing with blog is so that people can see and get comfort from   my experiences ,post treatment.Yep am 63 next month but still riding my bike and looking forward to getting back romSpain for a few weeks biking and hillwalking .i was lucky I didn’t get any depressing thoughts , but can see where everyone is coming from, when you have your last radiotherapy it’s a bitter sweet moment as you are leaving the bubble that we’ve been wrapped up in in my case 7 weeks Monday toFriday Constant attention from drs, nurses and The wonderful radiotherapy and chemotherapy teams .

i still remember that first Monday after treatment ni where to go no one to see and I felt so ill , I hadn’t felt that ill  before treatment or during treatment .So definitely something to be aware off.Fingers x for Tuesday x

extra hugs Hazelxx

Really appreciate your honesty. I have similar feelings having gone through extensive surgeries and treatment over past 7 years. One day I wake up feeling positive for future and the next day it is the complete opposite. Sharing feelings and anxieties is so important so no-one feels alone and afraid. Always remember your GP and Team are only on end of phone!