Hi Lorraine

It all sounds so horribly familiar. Hope you take advantage of those extra home help hours , you dont even realise how exhausted you are and when youre that tired you cant think straight ( I cant anyway)

Thinking of you

Geri

xxx

Hi Elkay,   Thank you for finding the time to post and updating us all, we've all been wondering and thinking about you and Ian. Your're both in such a hard place at the moment, so I'm glad your will be getting some more practical help.  Being physicaly exhausted (I recall the pills/sickness/wheelchair/hosp) does not leave much to deal with the emotional side, can only begin to imagine how you are  feeling.  Hopefully extra help will enable more time to be by Ian's side, even if talking is difficult your presence must be such a support  -  keep strong.

Hope you're feeling a little better and that the new pills have helped by the time you read this. Take care, gardenlady.

Hi Lorraine

I don,t come on here as much as I did as I,v not been doing that good myself & didn,t feel I could say anything positive to help anyone sorry. But I often think of you & Ian and wounder how things are with you. Reading your last post I really feel for you, how hard it is looking after Ian & seeing him getting worse. At least you know I understand been there done that ect. You sound like your doing a brilliant job looking after him, he,ll be so proud I know my husband John was of me. I just really want to say hang on in there , I,m thinking of you sending love to you at this horrid time  if you want to talk now or later please feel free I,m here.

Love Gioux  xx

Elkay,

Thinking about you, know you are facing the most difficult time in your life just now.  Take all the help you can get so you can spend precious time just being with Ian - if you have to do everything for him yourself you will run out of energy.  I feel like I know you both having read your posts since I discovered this site after losing my Dad - I am thinking of you, and hope that Ian is able to enjoy the time he has left with you, and that you are managing to get at least some rest.  With Dad I found that although he was dying, the last while with him was a very special time for us all, every moment counted, it had to.   Katielouie x 

Hold onto your hats - this is going to be a long post!!

Lyn - naughty you - what on earth was I doing on your spreadhseet!! Yes, going through photos is exquisite torture.  From our first trip away when we bought a digital camera (Dec 2006) to now I have so many photos and all are stored on the computer in chaotic order.  One day they will need tidying and the best ones printed off and put in nice old fashioned pick-up-able photo albums and even more put on those flash digital photo frames.  But for now I can only cry when I look at them.  Good on you - plodding along is OK - and for all those people who just have something "pahsartive" to clutch onto - those few good, well days must have been lovely for both you and hubby.  Congrats on the baby bump too - something really lovely to look forward to and not far away now....  Please don't call yourself a pessimist - you are no more a pessimist than I am.  We are both realists.  We are dealing with the reality of a dangerous disease.  And only the rich can afford to book non-refundable trips.  The one time I got cocky and did the "pahsartive" thing we lost $800 deposit on a Greek Islands cruise July 2011 - lesson well learned!!  I hope the scan results are as good if not better than you want.  Yes - it is more exquisite torture - this stuff is so normal for those in the health system - they just don't get how awful it is to wait - until they enter the system themselves.

Jules - ta for the hugs and virtual flowers.  The flowers especially I appreciate - don't have to worry about watering them or have their petals fall off all over the carpet hahaha.  I love your bouncebackability word and have adopted it - usually using it to describe Ian after horrible days - but I think it rubs off on me too.  I think my sanity is intact - but only because madness would require much more energy than I have to spare at the moment!!!!

Ann - you are right about the reserve tank - it is much deeper than I ever knew and my capacity for patience and compassion is greater than I ever knew.  Yes, most days it is "one foot in front of the other."  Not too much skipping for joy these days.  I start casting yearning looks at the clock at 7pm longing for bed and oblivion.  When my cellphone alarm app (yes, I may be 57 years old but I have embraced phone apps hahaha) goes off at 8am I cringe at the thought of getting up to start the plod through another day.  Ta for the virtual flowers and hugs from you too - my vases runneth over 

Waterbabe - yes, kittens and dark beer soothe the brain and the bowels.  My lovely Esther starts tomorrow doing one hour paid direct by me, then 1 1/2 hrs paid by hospice on Wednesday as usual, and another hour paid by me on Friday.  And if that isn't enough to keep the place clean and tidy and leave me free to concentrate on Ian, I'll hire her for Tue and Thu too.  I know the tidiness of my bench and the "ironing in waiting" shouldn't matter but they do and we can afford the help thank goodness.

Geri - you have walked the exhausting, emotionally-draining walk - you know only too well what life is like for me and Ian now.

Gardenlady - thanks for your message.  My emotions are well and truly dulled by the exhaustion - or maybe its vice versa

Gioux - I was sad to see you're not so good.  It hasn't been long since you lost John and you deserve some peace and tranquility yourself rather than tough times.  Don't worry about ticking the "pahsitive" box - I spell it phoenetically because that's how people tend to say it - they put such energy and emphasis on it and it's such a silly word.  What's positive about people facing life-threatening illness or death.  Ian and I (and I am sure many others on this site) can do "cheerful" sometimes and "hopeful" too.  But we think the way the word positive is bandied about it is often insulting and disrespectful.  So don't feel bad about not being "paaahsitive."  Enough of my soapbox tirade!!  Do you know the one thing I would want most in the world is for Ian to smile at me as he passes like John did for you.  When you wrote about that I cried then and my eyes are leaking again now.  It said so much about the relationship you and John had.  And the cruelest thing is that because Ian's blood/calcium seems to be almost out of control, he is going to sleep more and more and then slip into an irreversible coma and then die.  So no chance of a loving smile for me and that hurts so much and makes me envy you so much.

Katielouie - you are so very, very right - the time we have now is utterly precious.  I have been offered respite time away from Ian several times by hospice etc.  Don't they get it?  I will be apart from him soon for the rest of my life.  I usually say no I'm fine but one day I was angry and I said just that to a nurse.  She didn't suggest it again.  Can see I'll be wheeling that out again in the next days or weeks but it's a pretty powerful sentence and so very, very true.  Yes, although your Dad was, and my husband is, dying, this time together is very precious and caring for a man such as my husband is a privilege.  And it's the least I can do to repay him for 37 1/2 years of friendship, then courtship, then happy, loving, laughter-filled marriage.

Where we are right now...................  The Pamidronate IV on Friday 8th failed to work.  By Tuesday 12th Ian was in a lot of pain, talking a lot of rubbish and had lost the use of one leg with little strength in the other.  He's now lost untold kilos of weight.  The lovely strong body I loved so much has gone.  Ian had the sexiest legs and tightest cheeks (if you get my drift) I had seen.  Now his legs are scarily thin, his arms ditto, and the huge belly that looks like a beer-lovers gut is actually the huge tumor pushing further and further out.  Most of the pain is now in Ian's spine and lower back where damage is being done to the nerves down to his legs.  Last Tuesday I tried to shower Ian and he ended up stuck on the showering stool sobbing with pain, unable to stay in the shower or get out.  How I got him out/dry/back to bed I don't remember.  At one point I asked him to "score" the pain like the nurses ask - he said 10 out of 10.  Terrifying.  I rang the hospice and they upped the pain relief in the syringe driver by 50%.  So bed baths "a la Nurse Lorraine" are now the order of the day and I have no problem doing this - I know every part of that lovely man's body - why would I have a problem sponging it?  When we next had a visit from the hospice nurse, Ian being Ian was bright, chatty and perky.  I wanted to "brain" him.  I knew the drug hadn't worked.  I knew without a doubt that the blood/calcium was climbing up again.  When your husband asks you in the middle of the night (when you hand him a piece of toast with Marmite) if you've made fish sandwiches for the kittens too, you know he's talking gibberish and he's ill!!!  So, yet again, I put my Advocate hat on and insisted a blood test was needed.  And bingo - the blood calcium which had been 3.0 on Monday 11th (well above the 2.2-2.6 normal range)  by mid-week was 3.3.  So (at last) the next-generation drug, Zometa, is wheeled out - just a few mls of the stuff - the teensiest, tiniest IV bag you ever did see.  And it was brought to our town by the hospice nurse to be administered in the cottage hospital here because it only takes 15 minutes so it would be ridiculous to travel 40 minutes each way for that.  But to get to the hospital we had a dilemna.  By that time Ian couldn't even transfer from the wheelchair to the car seat.  So I called the local ambulance/shuttle which has a wheelchair hoist.  Unfortunately the driver who was on thought she (yes a she - and I'm not being sexist here -  just saying it like it was) was taking part in a demolition derby and completely ignored Ian's grunts and groans from spinal pain.  So if this IV works (and it's a big If) I will have to get an ambulance next time so he can lie flat.  The NZ health system strikes again - $65 to get to the local hospital for an emergency (and that's assuming an IV is classed as an emergency) and $145 to take Ian 3km home.  If I had the energy I would scream blue murder, but I don't.

Ian's hospice nurse says she has seen Zometa not work at all - but she has also seen it work wonders and give patients several more weeks of wellness and life.  Ian will have a blood test tomorrow morning at 9am (8pm Sunday in the UK I think).  If you think of it, please send virtual cross-fingers to wrap around that little vial of blood.  So much rides on that little bottle.  If Zometa has done it's job, Ian lives to fight lots more days (perhaps even weeks).  If it hasn't, what I think is a tough job now, will get much tougher.  Not physically - once Ian is in a coma I won't be to-ing and fro-ing with cool drinks, tasty morsels, urinals and wheelchairs will I?? It will be emotionally tough and even now unimaginable.  Only those of you who have been there know what faces me next.

Don't forget - please cross your fingers!!!!

Love to you all 

Hi

Hope this will be a 'good' morning and that those results are what you and Ian so much want and need.  You are so wonderfully open about what is happening in your world and I would defy anyone not to be moved about the journey you are both so bravely taking. I am nowhere near this point with my hubby as yet (though the fear of the future what ifs exists I try to push them away). He has slow release painkillers every 12 hours but is still able to look after himself and even drive (I dont!!) and  do some consultancy (used to  be full on engineer travelling the world) at present. Reading your story reminds me how lucky I am at and that I should be rejoicing at what I have but sometimes the selfish, frustrated me takes over and I want the life we had before diagnosis in early 2012 (who wouldn't eh).  Typing with my fingers crossed is difficult but I wish you all the very best of luck with the latest treatment as though practically we all know it cannot cure the cancer, being pain free would indeed be a wonderful reward for the effort you are both putting in to your personal battle.  Now I am tearing up so will just send more of those virtual hugs, flowers and say your sense of humour is still shining through the pain. Hang on in there. I am so pleased you are now having extra help, as with the physical nature of the beast becoming more demanding it will also be good for you to have someone to keep you company (for hopefully some normal conversation too!!) giving you time to gather your wits (and perhaps they will see both sides of Ian you are dealing with). Strange how men can put on a front even in severe ill health when 'outsiders' appear. My hubby does the same at his hospital check ups though at home just sits and stares at the TV waiting for his next drink/meal (but manages when I go to work to make a drink, leaving the washing up to the one that does, hey ho). Taking care of yourself is no doubt on automatic pilot along with most of your day. Big best wishes to you both.  Jules

Lorraine,

        I have been reading and watching Ians and your progress down this path you are on. I have been truely humbled by all that you have written, so much so I did not want to respond to you and interfere. However I now admire you so much that I felt I should send you my best wishes and support however I can. You are doing a full time nursing job on top of all your other roles that you and Ian have shared over a liftime. You have even found time and energy to respond to so many people on this site. As I said I have admired you enormously.

       I am not surprised that you would scream blue murder if you had the energy, you have both been pushed to the limits, I do not understand why the system in NZ expects and allows a man in Ians condition and in such pain to have to suffer further for his treatment. To my way of thinking that is inexcusable.

       I send you Lorraine virtual hugs to hold onto for when you need them and my thoughts are with you both.

                     Annabel.

Hi Lorraine,

Just to say I'm still reading your posts and thinking of you both.

I'm not sure if the question about fish sanwiches for the kittens was delerium or a sarcastic joke on Ian's part. Or maybe a helpful suggestion? You didn't say whether you actually had (made fish sanwiches) or not.

Hope the calcium levels are kicked into touch for a while.

Virtual chocolates (you may have enough flowers)

Russ

Hello Elkay and Everyone,

I am a newbie , but I think  have "earned my spurs". My lovely, brave Ray died just 25 days ago. I started reading here the day after and have been amazed at the bravery and cameraderie of all you girls. And I thought I was the only one! How stupid. Elkay, I need to tell you that despite everything the final time can be quite a special time. Ray had been unconscious for three days, at home, with end stage colon Ca /liver failure, fully sedated and comatose by nature of the organ failure ¿ but I KNOW he knew I was there. Our last day was spent with me just cuddling him all day and talking to him ¿ his breathing settled right down until it was very, very gentle and then after seven hours of cuddling ( yes, he was always a softie for a hug) he just gently sighed and forgot to breathe in. I looked around and saw he was unbelievably smiling. It was like a final miracle - I had been so determined to carry on looking after him ¿right till he didn¿t need me any more¿, but was obviously v. scared of what I was taking on.,.. but in those last moments I knew we had been lucky despite everything.

You are clearly doing , what so many of us do ¿ looking after your man for as long as he needs you ¿ whatever it takes . Believe  me , it does make the final parting a little easier to know that you were there for them.

Stay strong ¿ you have obviously given enormous support to others

Best regards sue-ps , uk