Hi all,

Just seen all the latest threads!

So Hilts I don't know but maybe the chemo does make you more sensitive? Kev had the vasculitis on his legs which were covered in red/purple blotches and itched as a severe reaction to sulphoids in the antibiotics he was given. Hope it goes E45 may help? They gave Kev steroid cream and a tub of Hydromol (like lard) lol.

Lee/Scott all good wishes to both dads. Distraction as Hilts  says! And yes I talk to Kev about you guys like I know you all which shows how helpful this little band of OC warriors is to us all! I think of those who haven't posted in a while. Great to hear from RayB!

Bfg you were definitely quicker than Kev as he was diagnosed at end of October but didn't start chemo until end January which was a long haul especially during another lockdown! 

Distraught - I hope it helps that there are a number of patients and family on here who can relate to how you feel and to know that you can come the other side. I'm not going to repeat what others have said already but I agree the waiting/not knowing is very difficult to put it mildly. I was gagging each morning I got up and the fear is awful. Once the treatment starts you have a plan to focus on.

My husband's path took some unexpected and life threatening twists and turns as you will see from my previous posts should you wish to read them. However, with the brilliant care from the experts and all the NHS staff he has come through it, against the odds at times and we are beginning to get our lives back.  As others have said Google is not a friend and the stats are out of date and don't take the individual into account. Everyone on here whilst having similar treatment has not experienced the same effects/outcomes. Be assured the upper Gi Teams are brilliant and my suggestion would be ask them anything and take everything a step at a time. It's not an easy road but it can be done. I found Macmillan nurses on the support line helpful. Also some have used Maggies. We only had phone calls with consultants etc and didn't meet the Oncologist until January. Look after yourself too and ask for support if you need to. The team did a holistic assessment and I asked for physiological help as I knew I was finding it tough as we have previously experienced traumatic situations.  Sometimes talking to strangers is easier than friends.

keeping the faith for everyone 

Milly
 

Morning all, hope everyone's OK and keeping on trucking along on their respective journeys.

Some good updates to read about your Dad, Lee and progressing with the op to throw everything at it and Hilts with your man breezing the corrective op and back to his antics with the pints !

Just completed the 4th and last, post op treatment yesterday - so a week of feeling grimey and GOG like (BFG-ism!) then can focus on trying to get fat again over Xmas - bring on the Quality Street, haha !

Thanks for all the kind help and support along the way on this journey, it's been a roller coaster but you've all kept pulling me along and towards the finish line !

At my hardest point, post op treatment Round 1 when I felt the worst I ever have, and said to my Wife (amazing Claire, soldier throughout and many moments of feeling like a single parent - not easy orchestrating all 4 of them single handidly whilst I was KO'd in bed some days, but she's trooped it thru and am in awe of her) I don't know how I can do another 3 of these and felt like I was going to have to Tap Out early, but you all kindly encouraged me through, and I've done it !

Thank You !

Hi Redski,  great news well done . Sounds like you have all got through it together,  big congrats to you. Enjoy those Quality Street!.

Lee

HEY Redski, 

Good to hear from you. you've done it too then - thousands of clapping emoji's. FINITO x

The post op chemo is tough, tough, tough, BUT through it you all are. In my view that is when recovery really began- so tins upon tins of quality street is your xmas 'research project'. As for mine and the pints, nothing keeps him away from that research (: The cough had now completely gone, so he can no longer claim 'medicinal' - psychological therapy will be his new quest ): 

I can certainly relate to your Clare (:- it's weird though, I felt okay about it at the time,  it was like 'right, this is how it is going to go' it was afterwards that it caught up with me when I had a lot less to do !. Flat spot about 4 months ago, but feeling better again about it now.

My notifications are back today- weird 

Anyhows, off out with my friend for my birthday- husband in charge of home front with NO beer

Keep on keeping the faith

Hilts x

Happy birthday Hilts...after the last year or so I think you well deserve a big celebration...enjoy

Thanks Hilts. She can probably relate to you too. On treatment days and bad days ; she's managed to jet wash and re-seal the entire patio and the driveway, paint the garage, paint the shed, treat and coat protect all the fences and a bunch of other DIY madness that kept her mind off things, made her feel productive and get a good sense of reward at the end of it. Made me chuckle as I think you said you did similar things too from memory.

Happy birthday Hilts! Have a fantastic time!

Cheers

Bfg

Thanks for the reply, it helps to hear from others who have been there.

We are still waiting for a response from the hospital following the PET scan, they said results would be available within 2 - 3 days.  All this waiting around for something to be decided and hopefully, treatment started, is driving me insane.  

Her is bearing up better than I am if truth be told.   I just want them to say he is a suitable candidate for the surgery and chemo and this waiting around not knowing is torture.  The initial diagnosis based on endoscapy, CT, bloods, ultrasound etc is showing localised and 1 (maybe 2) lymph nodes.   If this is confirmed when the PET scan results come through, will this mean he will be offered the surgical route?

I am also left feeling why on earth did we have to go through the bother of CT, ultrasound, bloods etc if it doesn't give a definitive result?  Why not just PET scan straightaway?  All this testing has just wasted yet another month while he gets worse

I have a very close friend whose OH went through this same procedure almost 8 years ago, so she's been a massive help but I am just so frightened and cannot sleep or think properly.  I am trying to keep from him just how I am feeling and am attempting to be positive and strong - it;'s not easy

Hi Redski,

Well done! Everyone on here appears to have found post op chemo more difficult. However you've done it and in a couple of weeks you'll be quaffing beer and chocolates lol.

Hilts Happy Birthday girl - go dance on the tables and have some FUN! 4 pints????

keeping the faith 

Milly