Hi Lorraine,

Yeah I'm exhausted by your posts and I only have to read them not live through them!

This business with Ian's pain sounds a nightmare. I'm glad it seemed to ease down to something paracetemol could control, though from what I gather about Ian, you'd always wonder if he was "toughing it out" rather than really feeling better. 

Hope you caught the plane ok.

Very quick hello.  Changed the flight last night to 1pm to give us some breathing space so am now throwing the last of the packing into the suitcase (what else of course by some meds).  Have been for the ultrasound.  It is the "mass" in the para-aortic lymph nodes (twice as big now as 23rd June CT scan) putting pressure on the kidney and ureter.  A report is being passed to the hospice and the oncologist.  I have asked the hospice nurse if their palliative care runs to a stent to ease the pressure but she doesn't know.  Because of my personality, and my need to know in order to cope better, I had looked all this stuff up months ago when the mystery mass in the para-aortic lymph nodes was first mentioned.  Thank you Wikipedia because your information was bang on.

So, out the door we go, mindful that this is almost certainly the last trip together - feeling the fear, but doing it anyway.................

Talk to you soon.  Take care!!!

Lorraine

I guess you'll see this when you get back - hope you had a great trip!

Expat xx

I've not been on here for a while, mostly as I felt a bit of a fraud, well my husband's cancer is paled into insignificance when compared to everything you've gone through, you're going through with Ian.

I hope you have some enjoyment on your birthday but it's difficult to imagine it especially if you're thinking it will be your last together. It's just ghastly and it makes me cry.

Hi expat,

Mynahs as equivalent to starlings puts me in mind of the far east. A mynah bird in Thailand used to perform a variation of his(?)  mating display at our breakfast table in order to beg food. He/she was one of hundreds.

At my work I'm often treated to sightings of Jays, Green Woodpeckers, Great spotted Woodpeckers, Firecrests, an occasional visit to our fishpond by a Heron and even more occassional visits by the local Peregrine Falcons. We have resident Kestrels and an owl that I haven't been able to positively identify but think is a Tawny. I really ought to get my head around the various "seagulls" we see. I know there are Herring Gulls and Black Cap Gulls but I've not looked closely enough  at the petrels and terns.

I'm a "birder" rather than an ornithologist or twitcher. I don't care about the rarity, it's just observing the behaviours that intrigues me.

Best wishes

Russ

Hi all

What a birthday it turned out to be.  Akaroa on Banks Peninsula is just delightful - a sleepy little village that balloons in size during "the high season" but in the off season, such as when we went, has a population of 800.  I adored it and would love to live there one day.

Off we went, clutching anti-inflammatories, paracetemol, morphine and antibiotics - oh and some clothes too!  All were put to use during our stay, some occasional, some regular.  We did very little - Ian dosed heaps, I rediscovered the joy of reading for pleasure hour after hour, we only watched TV one night when it was too stormy for there to be any people-watching out the apartment's window, we ate lovely food, drank one glass of excellent wine every day and were smooched and comforted by our gorgeous little apartment every day.

My birthday was a bittersweet celebration.  It was lovely to have Ian with me still for that day.  We went shopping for his gift to me (chosen by me - me? a control freak?) and I went all funky and bought some silver chunky fashionable jewellery - a necklace and bracelet.  Hanging off the necklace were "bits and pieces" including a big heart and a key.  I said that key was Ian's key to my heart.  He said no, it was the key to my chastity belt.  A bit late in the day to find that key I would have thought after 35 yrs 8mths of marriage!!!!!

Then in the afternoon while Ian was having a nap, his cellphone rang and the "bitter" part of the day arrived.  The life insurance company had offered an advance to help meet the Erbitux drug costs.  The lady asked if it was a good time to discuss the policy.  I said it was and she proceeded to tell me they wanted to pay out the life cover in full immediately.  I was appalled - of all days - it was supposed to be my "happy day."  I said I couldn't talk more, I'd have a think about it and get back to her when I had my head around that.  Then I climbed into bed with Ian, wrapped him in my arms and we cried and cried....

Yep, a fun time was had by all!!!!

But we perked up - just another New Normal to get used to - and went out for dinner and Ian had a glass of bubbles with his meal - after all, he could afford it eh???

We flew back on Tuesday 16th for Ian to have Erbitux.  The oncologist had returned from his overseas conference and Ian told him about the return of the groin and testicle pain and swelling and about the ultrasound.  The oncologist poo-poo-ed the ultrasound technican's ability to diagnose pressure on the kidney and declared he had never heard of that happening due to a "mass".  Hello?  How many people has he had who survived Stage 4 advanced and aggressive cancer for seven years???  So we bit our tongues (yet again) and Ian had the Erbitux that day and the CT scan the next morning.

That afternoon the GP rang to ask how Ian had managed his pain while we were away and the CT result appeared on her computer screen as we were talking.  She reported the lung tumors are even smaller than before, but the "mass" was bigger - much bigger - JUST AS THE ULTRASOUND HAD SHOWN.  On Friday the oncologist rang home and after a significant pause said it was bad news - the mass was bigger and was putting pressure on the kidney.  Surprise, surprise!!!!  Very, very hard to bite my tongue and say we know AND WE TOLD YOU SO!!    He said he would discuss Ian's case with Radiation Oncology and hopefully get back to us.  He didn't.

On Sunday I cleared our mail box and found an appointment card for a 1hr discussion at Radiation Oncology tomorrow (Wed) so I guess there is a plan   We hadn't heard if Erbitux was to go ahead today so I emailed and got the reply - Sadly no, it isn't working.  So that's it then - Ian is one of the 70% for whom Erbitux will not work.  I had had a suspicion that the "mildly grotesque-Erbitux rash" and "complete absence of diaorrhea" weren't actually a good sign.  Anecdotal evidence had suggested the worse the side effects, the better it was working.  But it was a crushing blow to have such proof.

The anti-inflammatories Ian has been taking since the 8th are helping enormously and he even feels less bloated and tight in the belly.  The morphine (when I can convince him to take some) is an occasional weapon - the weapon of his choice being paracetemol.

So the next step is, presumably, some radiation.  The hospice nurse has suggested it will only be a few days - just enough to take some of the pressure off the kidney - certainly not weeks of radiation.  I'd love to hear from anyone who's had a similar regime for a "mass" or whatever in the abdomen - this is all new territory for us.  Oh goody, another New, New, New Normal to come to grips with.

Keep up the fight everyone - every crisis we deal with and get through, we get stronger. 

Lorraine

Hi Lorraine

I'm so sorry to hear the bad news - but loving as always hearing the fun you still manage to cram into your days! I'm keeping my fingers crossed that the radiation helps. In the meantime I just wanted to pass on a quote I came across the other day, from Elizabeth Edwards. You may have seen it before but I hadn't and I loved it, and immmediately thought of you (and it seems very well suited to a lot of the brave men and women on this forum):

"She stood in the storm, and when the wind did not blow her way, she adjusted her sails"

I thought it summed things up quite nicely and I have now adopted it as my personal motto

Anyway keep us posted and I'm sending every positive vibe I can muster your and Ian's way...

Vikki

Thank you Vikki.  I love that quote.  Now I know why I prefer to wear trousers than skirts - so when the storm blows, my knickers don't show!!!!!

I am thinking of you, as well, and your husband.  I hope he's OK.

Lorraine

Hi Lorraine - just read your story.  I hope and pray that the radiation treatment will be a success for Ian.  The poor man has been through so much likewise you too but I have to admire your attitude and humour in all this - good for you and may we all join you in putting two fingers up to cancer - we can and will get through this.

Glad you enjoyed your birthday.  You deserve some happiness

Still keeping you and Ian in my prayers.

Mickied