Kristina and Vikki

I am leaving this computer keyboard right this minute and going down to the bedroom where Ian is sleeping at 10am in the morning.  I am going to throw back the covers and leap into bed and throw my arms around that man and cuddle him tight.  I only hope he isn't dreaming and thinks I am a burgler or something

Thank you for your lovely words, both of you.  You are "walking the walk" - you are so entitled to "talk the talk."

Lorraine

Hi Lorraine

Just thinking about you and Ian today.  How is he and how are you coping yourself.

Mickied

Hi Lorraine,

I guess you have been giving Ian a very long cuddle.  No posting here for a while!

Hello to all the others on this thread too.  It's a hard place to be but we have to help each other.

I haven't posted here in a while; my husband has been very tired, with little appetite.  Chemo was knocked back today because of low white blood cell count so once again I have the excitement of administering injections over 5 days.  But the prospect of delaying chemo is not unpleasant (maybe we 'll manage to get some fun in this weekend!) and my husband was asking afterwards what he could do himself to boost the WBC.  I said eat.  Not because I know it would work but because I think he should.

I hope Ian keeps enjoying the food you make him, and the laughs you share.

Expat xx

Hi lorraine

I was wondering how you guys are doing. I hope you are still tucked up in bed.I love bed -it is like being in your own little bubble for a while

best wishes

emma

Hi you guys

Thank you for looking out for me.  It's been a tough fortnight.  Slowing getting tougher and tougher.  Ian was having so much of what he called "discomfort" but which he was rating on the pain score as 3 to 6 that he just seemed to be slipping away.  He wasn't getting out of bed till 11am or more, hobbling down the hallway to the lounge to sit and snooze for hours, then hobbling back to bed exhausted at 10pm.  Thankfully the decision was made to do ten radiation sessions to reduce the size of the abdominal "mass" which got to 14x10cm despite all the drugs.  The fact that the system let that mass get so big before doing something about it makes me furious - and I got lectured about my anger issues by the hospice nurse.  Counselling was suggested - and declined!!  Our social worker has been with us through the hospital and now the hospice for six of the seven years' fight and she said I have every reason to be angry - opportunities have been lost and the disease has progressed to a dangerous point because of mistakes and ommissions.  How sad is it that I researched "cancer in para-aortic lymph nodes" many months ago and knew a mass would put pressure on the adjacent kidney - and yet the oncologist was declaring two weeks ago that he'd never heard of that happening.  But to his credit he got Ian urgent radiation therapy which starts with a tattoo session on Monday and will start in earnest on Thursday we understand.  The radiation oncologist was a lovely, open, forthcoming, helpful man who answered every question willingly and gently reminded us that he couldn't offer a cure.  IF I THOUGHT FOR ONE MOMENT THAT RADIATION COULD HAVE CURED IAN I WOULD GO ABSOLUTELY BALLISTIC.  I asked the oncologist eight or ten months ago if the "mass" which was at that time only about 5cm square could be dealt to by radiation and he absolutely, categorically refused.  Now when it's huge, it's become a possibility   The radiation oncologist says he can drastically reduce the "mass" but that it will rear its ugly head again somewhere else - we understand that - but this is buying Ian more time and that time is precious.  And since I "rattled more cages" yesterday we have increased pain relief for Ian who has bounced back today, happier, more alert, tidying up in the kitchen, walking rather than shuffling......  The roller coaster ride continues..............................

So is your Bonfire Night the same as ours Grumpy?  Is Monday 5th November your 1st day of Rat Relief??  I'll be thinking of you as I play "join the dots" with Ian's radiation tattooes

Sorry to hear about the wonky cell count Expat.  Well done you for administering jabs - I have done things in the past seven year journey that I never thought I'd have the stomach to do but jabs won't ever appear on my CV.  I'd have to put my head between my knees and breathe deeply to administer a jab - and I don't think Ian would be confident about that technique

Our roast lamb lunch is almost ready - the wonderful smell of lamb and rosemary is wafting across my kitchen and under my nose.  Better get the veg sorted.  What a shame we haven't got a sunny day - with Ian happier and more alert, it feels like it should be sunny to celebrate

All the best you guys

Hi Elkay, its kazakaz here, I just wanted you to know that I am thinking about you both, as you know I have already lost my soul mate back in May, just treasure every second that you have together, try not to dwell on the future there will be plenty of time for that later, I can't tell you how to cope or what to do, but you know it is not going to be easy, it will be the worst time of your life, I know mine was and is still very very raw, but somehow, and I dont know how, we cope and carry on. My heart goes out to you, it really does and I just want you to know and remeber that I am thinking about you both and sending you a massive hug.

Love Kaz

Kaz - thankyou!! I just passed the computer on my way to the lounge.  I've made a pot of coffee and cut us a couple of slices each of sultana cake - lovely jubbly!!  You know exactly where I am at the moment and your concern and hug are very much appreciated.  It's lovely to hear you are "getting there" after the tough time you had when you lost your lovely man.

Lorraine

Not long back from the regional hospital.  Ian had the CT/tattoo session and three interviews with nursing staff - all writing down the answers to the same questions - to no doubt be passed to a paper-shuffler to collate!!!!  I was allowed into the CT room to see how Ian was set up which I had never been allowed to do in the normal CT Department so I found it really helpful, rather than trying to imagine the setup.  But I had a "What the.......?????" moment when the nurses asked Ian where was the pain/problem.  I couldn't believe it would be down to the patient to point out where his tumor or mass was.  So I piped up in My Best Rattling Cages/Being a Loud and Insistent Advocate voice and told them "there is a huge mass in the para-aortic lymph nodes."  I saw them all exchange looks - obviously thinking "We've got a right one here" and the radiologist scuttled off to read Ian's file.  She came back and I heard her mention the peritoneal cavity just as I was being ushered from the room so I knew they had the right man/body part.  After the CT and tattoos were done we were invited into a scruffy little side room to ask any questions and I made a point of telling the nurse just how unnerving that "location" question had been - how much it had undermined my confidence that this department, at least, would be able to help Ian without mixups/omissions/botch-ups.  They need to know how such a question is interpreted by the patient or stroppy carer....  Maybe their reaction will just be to ban the carers in the future!!!! 

We were hopeful we'd be told almost immediately whether the radiation was successful or not.  But the nurse said due to swelling internally, it may not be until nearer Xmas that we'll have that news.  Terrific - friends will be demanding progress reports that we just can't give and not believing us when we say we don't know yet.  So we have planned a strategy on the journey home.  We will tell anyone who asks that we won't know until AFTER Xmas - that way we will have some breathing space to deal with bad news or quietly celebrate good news before we get hassled for answers.  Ian's sister and several friends demand information but are short on any kind of supportive behaviour - they just like to be the ones who spread the news. 

So 10.50am Thursday 8th is Radiation No1 from the front of the belly and also from underneath.  Completely foreign territory to us and it's scary to be swimming in unknown waters.  It took a conscious effort not to push the elevator button for Level 2 where the chemo dayward is and to select Level 1 instead. 

Everyone we spoke to today stressed that diaorrhea was likely, so although we have a bottle of 90 pills for that which Ian has never needed, I guess we'd better ready ourselves for that.  A bit weird though in that the increased dose and use of morphine is apparently going to bung Ian up and I'm filling him with kiwifruit and wholegrain oats to keep him loose, but I am being told that he'll be "loose as a goose" for sure - duuuhhhhh?

Lorraine

Hi Lorraine

Glad to hear the first session went OK (in the end...) - it's all such a learning experience isn't it, I really never expected (or frankly wanted but we don't get much choice in such things do we) to become a relative expert in freezing brain tissue and radiotherapy side effects etc. You'll be an old-hand soon though and know your way around! You really struck a chord with me about friends/family not believing you when you say there is nothing to report - I'm glad I'm not the only one who is constantly faced with these questions and an obvious suspicion that we are keeping things from them - I have tried on numerous occasions to explain that getting information ourselves is like getting blood from a stone and that we will share what we know as soon as we know, but they clearly believe they are being excluded. Very frustrating, I get this constantly from my parents in particular, who also seem to want to be the ones to impart the news to others or at least hear it first (why on earth would you want that or find order of priority of hearing news important in the great scheme of what is actually happening I find myself wondering). Having to deal with other peoples' expectations and feelings of entitlement on top of everything else can be downright wearing, and I hope your strategy creates a buffer for you! Good luck with the charming side effects - I'm sure you're waiting with baited breath to see which way it goes

Thinking of you,

Vikki