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Reply by Xenia

05 Jun 2014, 3:34 PM

Good Morning All :

I just read Mary's message and I too was told John would pass within 6 months, that was last October. When the 6 months passed I was quite out of sorts, wondering why a time line had been given. Then I got in contact with the professionals on this message board and the explanation helped me understand.

COPD was one of the diagnosis for John, lung cancer, congestive heart failure, renal failure and diabetes the rest. The professionals and our doctor and community nurses explained that with COPD it is hard to diagnois a time limit as the patient can rally one day and seem perfectly healthy then the next and a few days or so it looks like the end.

I just went through this with John this Sunday and Monday. He had so much pain and was helped by the morphine. Then about 9:00 pm. when he was in bed and I was on the telephone he called me, I need a pill. He had pain in his chest and up to his jaw. I gave him his pill and then realized that perhaps he was having angina and I should have given him his nitro spray, all these things happening in a short span. He was worn out and weak for the next day or so, however, this morning he was up at 6:45 and is now resting in his chair. With the uos and downs with COPD and such I too feel that I am going through ups and downs, wanting to leave and go out, then wanting to come home, just in case. All the feelings are mingled and I am coping the best way I can. I find that at times I am sad, other times rushed in my thinking, sleepless nights and long days but I am glad to be with John and he apprecites it.

I was on my 4 hours respite yesterday and asked him if he missed me when I was out. No, then I asked why do you ask me what time I am going to be home. Well, he replied I want to know, but you are asleep when I come home, yes, I know he replied, it is just that I need to know that you are coming home . So another repite day has passed and he woke up to find me at home waiting to talk to him about my day out. Thank goodness he is not a man who needs my constant attention. He never complains and is happy with what ever I do.

I find that on the message boards we all have our ups and downs, each of us tackling the problem in a manner that is suitable for us that perhaps would not work for anyone else. I find that reading the problem solving helps me and I use some of the advice as it is from someone who is going through the same situation I am in. I feel the pain and can share my pain and know that I am not being judged or that it is a professional who has book learning and perhaps has never gone through what we are going through. Knowing that we can share our hurts with another person and not be judged is what keeps me going.

To all keep sharing you help me through many a day and night.

Take care.

Xenia

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Reply by NatR

05 Jun 2014, 3:56 PM

Good morning Mary, Xenia and all reading this thread,

its ts really great how each of you telling your stories helps one another. I feel so honoured to "listen in" and learn from everyone as you share your journey with caregivinb and support

truly wishing you all a good day - know that your efforts are gifts given to your loved ones and that your care matters deeply

glad to be connected to you all!
sending my thoughts across the country and hoping today that you feel the same encouragement that I see on the threads:)
best wishes,
NatR

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Reply by jorola

05 Jun 2014, 10:09 PM

I couldn't agree more ladies. I want to thank each of you for your understanding and sharing your experiences with me. we saw our GP yesterday. he asked that mick come see him so he too can see how he is doing and work with his cancer dr's better. He is a very smart man andhas a good heart. He was so please with how Mick looked yesterday. He was goign to call the cancer dr's after and just chat but he is hopefull that Mick can beat this. Mock and the dr's concern was me. I looked like crap. all three of us had a good chat. Your are all right. I know i expect too much of myself. I need to remember I am a fiancee and mother first, a friend and then all that outher stuff after. I feel better in the sense i feel i am starting to get things inpresprective and acknowledging my limiations. Day by day, right?

wishing you all a great day

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Reply by KathCull_admin

17 Jun 2014, 5:13 PM

Hi
I was just reading through the posts on this thread. I so appreciate everyone's comments and stories - even though everyone has different lives - there are shared experiences that help to lighten the load - as you live 'day by day'. I imagine Jodie sometimes it's moment by moment. There is a little article Caring for Yourself written by the Canadian Virtual Hospice staff you might find interesting.

I am glad the last meeting with the doctor was more hopeful for you and Mick.

How have things been over the past week? Are you finding you are getting more rest?
Take care
Katherine

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Reply by Xenia

17 Jun 2014, 5:52 PM

Dear Nt and Katherine:

Just turned the computer on and wow, did I need this email. Especially the Caring for Yourself article on your email Katherine.

I haven't been on line for a while, I fell and of course black and blue, then a bit red but paid no attention, caring for John and I am stoic for pain. Daughters came over last Tuesday and had a herring, literally. They thought I had a blood clot as my leg was really red and wollen. One daughter had gone home with her visiting cousin from Windsor, so Gayle youngest daughter who was staying with us, called her back to be with John as she is taking me to ER. 10:00 pm. get there and I was in ER from 10 alm. till 5:00 a.m Wednesday morning, then back for a ct scn...to check for clots, my ddimer was 2520 and it is supposed to be 500, I had allready been put on antibiotics and an intervenous drip. Back at 8:30 for scan, wait till 2:00 pm for them to read it and back on drip...I have cellulitis, seems a scratch and a bug got it going.

I was so angy , why did this have to happen now as I had to arrange for trips to the hospital, have someone watch John as he is on more morphone and is unsteady, what a get too but I have such good support from kids and nurses. To-day he dr. comes to check all of Johns meds, etc as he is off for a month and wants to make sure all is undercontrol while he is away. Also can contact his partners. What a great doctor.

I am fine but feeling sad at times as the meds make me sleepy, John's deteriortaing condition and the help from the kids can be overwhelming. ONe daughter who is in denial that dad is going to die as he looks so good has taken conrol over which sister or brother will do what , checks to make sure we have enough groceries, has our son be the tax and porter. We love her as this is her way of coping good thing she is the baby and is loved by all. Herhusband is great and their son, our only grandchild are great too, as Saturday I was at the hospital getting the IV treament and they cooked spahgetti, cleaned up the dishes, pots and pans etc.

This morning our oldest daughter had her day off, came over at 7:00 a.m. to watch John while our son drove me to the hospital, cleaned the house, changed the beds and all the things that hadn;t been done in a while. Tomorrow she comes at 7:00 and stays till I get back in an hour or so then goes to work, which thankfully is a few blocks from where we live, son will take me to hospital and then I get my 4 hrs respite to zonk out. Think I will shop then come home and sleep if I can and let the caregiver look after John.

I sure am selfish talking about myself but I feel teary eyed today and not wanting to feel sorry for myself I decided to share and hope this gets me through the day.

Thanks for listening.

Xenia

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Reply by moderator | modératrice

18 Jun 2014, 2:06 AM

Hi Xenia,

I'm so glad that Katherine's post arrived in your inbox just at the right time. What trils and tribulations you've been through with your own health. Thank goodness for your children. They have really stepped up to help out, even the youngest who seems to be in denial. Everyone has their coping mechanisms - denial can be useful for a time too perhaps.

Please don't feel selfish talking about yourself. This is the place to do it and to get teary eyed. There are enough circumstances in this journey where you have to keep the stiff upper lip and put your concerns, feelings aside Not here. This is about you and hopefully sharing the burden can help with your health and healing.

Thanks for updating us Xenia. Stay in touch.
Colleen

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Reply by marstin

19 Jun 2014, 10:53 PM

Hi Xenia,

You know you are among friends here so go ahead and let it out. You are weary and in pain yourself. You remind me of how my Mom used to be when she took a tumble. She would be so angry with herself and often called herself stupid. Accidents are just that, accidents or maybe something telling you that you need to slow down. Hard to do I know when you are a caregiver.

It's great that your kids are stepping up and helping you out but I'm sure it's a little difficult to allow someone else to take charge when you are used to doing things your own way. I have a daughter that can be a little bit of a control freak and can cause her sister to become very irritated with being bossed around. The controlling one has yet to actually let anyone see the pain she has suffered from losing her Dad whereas the other one has been very open about it. I guess we each figure out how to deal with the sadness in our own way.

How are you feeling today? Are you managing to get some much needed sleep? I certainly hope so. Sending healing thoughts to you.

Hugs,
Tracie

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Reply by jorola

23 Jun 2014, 4:37 AM

A bit of an update on MIck. The radiation was supposed to stop on June 19 as the radiation dr said the tumour was to close to his heart to expose him to further tx. They did a scan and he now has radiation until July 11 for a much smaller area. Second round of chemo ends tomorrow. HE has done pretty good again but we know from last time that his worst days were the last day and the next 2 days after chemo ended. He lost his hair so now it will look like I am marrying a 12 yr old next month, lol. I truly don't care - just want him to be healthy again.

I have been dping better. Doing some counseling and my psychiatrist and gp have been working with me to help me with my own mental well being. I think I will actually go back to work next week providing Mick coninues to do well.

I thank everyone for their support and wish everyone a great week may it be filled with peace joy and laughter

Jodie

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Reply by jorola

28 Jun 2014, 6:45 PM

BOth of us are having a tough time today. The radiation burns to his esophagus is so bad he can't eat. Anytime he tries something - and it has been all liquids lately - he says he feels like razor blades. He is forcing himself to drink protein and meal replacement drinks to try to get something in him. I must add that he already has severe peripheral arterial disease and lives with severe chronic pain. Mick has always just dealt with it and never complains. He does not take painkillers for that as he does not want to become dependent. He has tried the Pink Lady and morphine syrup and neither worked. My heart breaks seeing him in so much pain. Luke warm weak apple cider with honey in it gives him some relief from the pain in his throat so he takes a swing of that, then a swig of boost then another swig of the apple/honey drink. Only way he is able to get something in to him. He has dropped another 8 lbs this week - down to 198.He is so weak it scares me. WE just got good news last week that the tumor is 1/3 of the original size after only 3.5 weeks of treatment (from 5 cm to now leass than 2). we were so excited and try to hang onto this news and struggle through the next little while. Radiation is now done July 4 and hope that he will begin to heal so he can eat better. I am just so scared ofhimwasting away now.

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Reply by NatR

28 Jun 2014, 7:13 PM

Dear Jodie,

it must be just heartbreaking to watch Mick go through the treatment that is killing the cancer but making his life so hard:(. I am sending you my thoughts and prayers today - hoping that Mick continues to hold his own, and that he manages to keep getting some calories into him.

i have heard that the treatment is worse than the illness and it seems so - but you have to hang onto the results - the shrinking cancer.

its also hard that his hair has gone but you know a lot of people shave their hair off and bald is considered beautiful these days ;)

sorry i I am intermittently responding to posts on the forum but I am wanting to write today to let you know I am thinking Of you both today.

Xenia I was sorry to read about your fall and your leg injury and infection :( I know it's really hard for you to keep on top of everything you have been doing for your husband and home.... But it's good your kids are able to help - and I know that's still not enough because caregivers just don't like to give up their work and attention to everything.

sending you hugs as well Xenia;)
best wishes for a peaceful weekend to each of you
natR

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