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Reply by KathCull_admin

31 Jul 2014, 2:55 PM

Good morning,
Jodie - what a lovely photo - thank you for sharing it. So important to enjoy the moments - people may be tired of my repetitive quote but one that I appreciate so much is "We do not remember days, we remember moments.." Cesare Pavese
I wish for you and Mick rich memory making.

Xenia, on the theme of memories, I am so glad you and John both plan to visit your grandson's new home - more memories.

And one more quote - for you both who love your husbands (I imagine that is a word you are happy to use Jodie:) I read this quote and thought you might like it:
Love recognizes no barriers, it jumps hurdles, leaps fences, penetrates walls to arrive at its destination - the heart."

Katherine

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Reply by jorola

28 Sep 2014, 6:54 PM

It has been a long time since i have written about my own situation. We had a good scan July 9. Mick really struggled with eating as i said before. He lost a total of 40 pounds in 4 weeks before he could really start to eat enough to start gainig weight again. At the end of Augut he stated to cough again including coughing up blood. we both were prepared to hear the worse. The scan was done Sept 9. We were shocked to hear there was no spreading and the tumor had actually shrunk more. There was inflammation of the lung tissue that at first they treated with antibotics as if it was pneumonia. That didn't work so the dr treated him for pneumonnitis (which he thought it was in the first place but wanted to try the antibiotics just in case). Mick was placed on dexamethsone. A hateful but helpful drug. When his mom was on it she went days without sleeping, was very paranoid, aggressive and had the energy of the energizer bunny on steroids. A week and a half on the med Mick has had a few side effects - the energizer bunny effect and some problems sleeping. I had bought him a classic car to fix up -as it always was a dream of his right - after we got the good news from the sept 9 scan. He was so excited, the dex made it more so. we had an agreement he had a monthly budget for fixing up the car. On the dex he blew 5 months of that budget in less than 5 days. I had to take away his bank card and visa and give him a cash allowance. Not the end of the world but a pain. It was still cute to see how excited he was about the car.

However the last 2 days have placed me on edge. He has begun sweating profusly again. He was doing this off and on about one month for the diagnosis of lung cancer. I have been researching dex and sweating is not a side effect of being on dex or as result of tapering off the drug which he did start 3 days ago.

I am scared the cancer is back but the objective information (the scan of 3 weeks ago) tells me i am over reacting. I am going to call the Cross Cancer Clinic tomorrow to talk to Mick's nurse. I am hoping i am just told to relax but ever since we started this journey a part of me has also thought the worse case scenario. For sometime now I have been able to quiet that part but right now it is taking over. Thank God i have some ativan still.

Ps - any thoughts to getting spell check for the forum? i am a horrid speally and rely heavy on it. Sorry for the errors. I tried to fix it best i could. LOL sorry just trying to find some humour

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Reply by Xenia

28 Sep 2014, 7:11 PM

Hello Jodie:

So good to hear from you since you last posted. The wedding picture is a picture of happiness and I wished all this would continue for you both.

With cancer, John has lung cancer, it is always ups and downs. You mentioned Mick is sweating so much. I have found this to be so with John and no one seemed to have an answer. Some days more than others. His Tshirts are wet and his hair and face wet and he has a flushed face. I will have to ask about this when the nurses come.

I am sorry to hear Mick is not doing too well and my prayers and wishes are with you both.
John had some very bad days this past week. I had to stay with him all night on Thursday, he vomitted so much I couldn;t see where he had so much liquid in his body. I need to have the rug cleaned by his bed as he projectile vomitting and I asked about this at the pharmacy as he had been put on a new drug but they said no. He didn;t eat for two days, to-day he had some porridge (or do we call it oatmeal?) and a bit of banana. He went back to bed after 30 minutes as I insisted as I didn;t want him to have any reflux. He has been in bed since and tells me he is having those terrible floating symptoms in his head. I gave him juice and he didn't want anything else so I do not insist but he has to have some juice being a diabetic on insulin as well.

Son and one daughter came over and did some clean up of the store room for me. Lots of things we do not need anymore. Yesterday son cleaned up the patio and got rid of my planter that has seen better days. Also, yesterday, another daughter (we have 3 and one son) and grand son, only l we have, came over. Daughter babysat while I went shopping for a bit and grandson took me to the casino. No winner, won some lost some and then came home after 3 hours. Good to get out and grandson is so good.

The rain has stopped for the day and it is sunny here on the West Coast (Vancouver and fraser Valley) and it certainly looks like Fall. Love this season. But it reminds me of Hoggie Carmiachael (if that is the correct spelling) playing the piano and singing, Autumn song (I think) words which make me sad. "But I miss you most of all my darling when Autumn leaves start to fall.) Good old songs where you could understand the words and listen to the background music.

All for now. Keep in touch.

Xenia

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Reply by NatR

28 Sep 2014, 8:12 PM

Hello Jodie and Xenia,

i agree reed we need a better spell check on the forum - but til that happens - I forgive each of you:) and you need to forgive me:)

despite the typos we are all sharing so much about the daily struggles and the highs too.
the important thing is to keep sharing!

Jodie I am sorry to hear about Mick and the tough days you both have been having, wish I could help with the fears and the side effects

I loved to hear about the car and micks excitement - sorry about the way he tore through the money - but over all, it sounds like a positive focus for him - and for you:) knowing he has a goal to work on.

i do hope you can continue to keep the faith and hang in there - but I do understand how heavy your heart gets worrying. Sending you my thoughts and two hugs!!

Xenia - you are doing such a great job of caring for John and I know it must be so hard to watch h in pain, being sick and frightened.

thank goodness for your kids and your grandson who are all helping in small ways to get things put away , sorted out and even get you out of the house

i would have been pleased to hear that you won a nice sum at the casino - but as you said you had a good time with your grandson and a much needed break.

I am cheering for you both :) Xenia and Jodie - letting you know I am listening and caring from a distance.

xenia I do know what you mean about the Fall, the sentimental songs about the ending of summer / there seems to be much more felt when you hear such song lyrics - when you are going through difficult times...

My thoughts go out to you as well as any other reader of this thread -

i also had an afternoon where I was viewing the stress of a family member who doesn't understand changes in her life - and how hard it is to watch her struggle and be stressed because no one can ease her anxiety.

change is so hard for us all - even those of us watching others go through change we cannot control. So you see - I do kind of get what you are saying :( and I am encouraged by your strength - and I hope you can feel some support from me ;)

best wishes,
natR

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Reply by KathCull_admin

28 Sep 2014, 9:34 PM

Hello everyone,
Good to hear from you Jorola – and good to hear that the news for Mick has, for the most part, been good. I understand your worry though – never being quite sure what symptoms mean and as you say often thinking the worst.

Spell check - the only way I have been able to 'fix' this for myself is to write the post in a word document and then cut and paste it into ‘reply’ box.

Xenia you are an amazing woman – you have learned to roll with a lot of punches and I learn from you. Thank you.

NatR you are a great cheerleader – encouraging people and letting them know you are in their corner.

Thank you ladies for all you are to those you love and to us in the community.

Katherine

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Reply by jorola

29 Sep 2014, 3:53 AM

Thanks everyone. I can always count on you all for support. I sure needed it today.

Thank you for humouring me about the spell check. I was just looking for a laugh and wanted to apologize for my spelling.

Hey Xenia, sorry John is struggling. I really feel for you both. I am glad you have such awesome kids helping you out. Like you I love the fall. Here in Alberta we hav had unusal warm weather reulting in the leaving still turning and prolonging the beauty. I have been soaking it up. Usually we have no leaves and snow by now. We did have some snow but it was very short lived.

Tomorrow is a new day everyone. May it be a good day for all.

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Reply by Xenia

29 Sep 2014, 3:03 PM

Good Morning All:

Keeping in touch. Having a bit of a sad day, John was up for breakfast for 1/2 hour and then told me he feels he is dying yet his body wont let him go.

He says I keep feeling I am leaving and then come back. I can;t explain it. I tried to reassure him that his body is not ready to let him go and as he used to say "when my numbers up, my numbers up". He looked like he needed reassurance it is time to go.

As we talked I said to him maybe your soul is looking for a time to leave you. He looked at me bewildered as I tried to explain to him, we are not religous but we do believe in ahigher power or what one calls their beliefs) that his soul is what makes him as a man, his laughter, his goodness, etc. Then he went to bed.

As I straighted his bed and got him in and went to do a few things he called me and said "My soul", yes, John what makes you YOU and he seemed satisfied and is now sleeping quietly.

Our mornings are spent over breakfast, a game or two of solitaire, I play and he watches as he is going quite blind. When we lived up North in the Cariboo, Northern B.C. we used to play many games of solitaire for a pass time in the winter months and he enjoyed it very much so I try to keep this up for him and myself.

To-day the aide comes to bathe John and so goes my day. Will try to keep my mind on other things and remember the good times. Oh yes, when we were cleaning out the store room I found a Ninja Turtle lamp my grandson had in his room when he visited as a child. 26 years ago. Now Ninjas are back in. Had my son take it to our grandson's mothers home and she will give it to him. How long ago and the memories are as fresh as ever with him wanting to be Leonardo.

Off I go. Thanks to all for your support and Jodie thanks again.

Xenia

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Reply by NatR

29 Sep 2014, 3:16 PM

Good morning Xenia and everyone

you won't believe this but it is snowing in a small area of nothern Ontario not 2 hrs away from me!!
Hard to believe in September

Xenia and Jodie I hope that today will go easily from hour to hour
you have been in my thoughts - I commend you both on your patience and long suffering natures
both of you are such strong women - giving so much love and care to your husbands

sending you positive energy :)
hugs,
NatR

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Reply by jorola

30 Sep 2014, 3:47 AM

Thanks as always nat. I admit i giggled when you said it was snowing in Ontario and not here. I born born and raised in this damn province i know i should be used to it. I think us albertans just like to complain but really it is our life. I know for me I may not ever be able to live anywhere else. Mick and I have talked about retiring in BC, but Alberta - and all it's crazy weather from tornadoes to blizzards - is my home. Still funny since we were 17 degrees C here today.

Xenia you are a very loving and kind woman. John knows this too, I can tell. As the for the lamp- LONG LIVE THE TURTLES! Cowabonga! (don't think even spell check could have helped me here lol)

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Reply by Xenia

30 Sep 2014, 3:02 PM

Good Morning and Cowabonga Jodie:

You brought smiles and laughter to my face and body when I read your email. I forgot about that even though Tyler, our grandson, used to run around Cowabonging. I wonder who the Master is.

Yes, I too was surprised you had snow already Nat, but then if you are up North, just like in B.C. there is snow already, even if it stays for a short time, then snow is predicted and you know winter is here. When we lived in the Cariboo, that is Norther B.C. I saw snow in September, was working in the garden digging potatoes (do you have to have an e on potato and potatoes? -my English training is going down the drain) and getting ready for a real long and snowy winter. We had to have our road plowed to get to the main highway and have the delivery of propane. Of course, we had a lot of wood and a wood burning stove but on the safe side we had propane for cooking and heating. That was the life John and I enjoyed. 25 acres of land, chickens, goats, cow and dog and cat. Into the forest to get wood for winter, planting large gardens, canning or is it called preserving fish and chicken. Good thing mymother was a great teacher even though I never learned to swim, these qualities taught me I could live anywhere and survive.

Ah, I digress, John is feeling much better. One week of very bad illness has worn him down. He agreed to a shower yesterday as he has only had sponge baths and he felt he could get into the shower. Once done, he said he felt like amillion bucks but he is feeling very weak. This I know as I have to help lift his legs into bed to help him lay down. We work well together,sometimes I am frustrated as John has a tendency to go too fast, especially for the care aides, even though he is ill he has to get out of the wheel chair (transport chair) and into the shower before they are able to get behind him and help into the shower. Scares the .....out of them and myself. That is why I cannot bath him as I am not stable enough to handle myself and him. Two knee surgeries and I still do the marathon in the hall but I get scared trying to help John in and out of the shower. So goes our days.

Not much happening to-day. To-morrow I have my 4 hours respite and will be going out with my daughter who lives in our city. Then I am going out for dinner with my bud who has been in town helping another friend who had breast removal surgery for cancer. the 3 stooges will be out together. Daughter insisted I do this as I missed going to the pool with my friend and Gayle (daughter) made arrangements for herself and her husband to come in from Vancouver - 35 minute drive over the bridge etc. and babysit John while I go out. This daughter is a real commandant and takes charge in a different way...other daughters are more gentle, but then each has their way of dealing with dad's illness etc.

Looks like I am writing a book so I shall have to sign off before I get into a chapter. Hear John getting ready to go back to bed after breakfast so I shall sign (should be will - shall is asking for permission from my language lessons in days of yore) off and get on with the day. It is to be sunny so I am looking forward to a day without fog and rain.

Hugs to all

Your friend in need.

Xenia

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