Soon to be

[pw5599]

I'm new here and not a widower....quite yet. I'm hoping to hear from other members and contribute what I can. Here's a very condensed version of my story.

My wife of 30 years at age 50 was diagnosed with stage 4 lung cancer in July of this year. A secondary tumour on her illiac (hip) bone is what brought her to being checked out back then. We were told it's stage 4, terminal, no cure, and any treatment would be palliative. Despite radiation, chemo, and hyperthermia treatments it has continued to spread and now involves her brain, pancreas, and liver. It is clear there will be a death at the end of this ordeal, we just dont know when. I have been grieving her since July and will have to go through the grief caused by her actual death any time now. So far I've been strong and am there for her at all times but it is getting harder to stay strong.

At the time of diagnosis and subsequent 2 week hospital stay I managed to work a few days but decided I couldnt be at work, I had to be with her through this and went on disability. I first used up all available sick days, about 3 months worth. I'm almost to the point of entering into long term disability if approved. There will be hoops and I dont know if I'll qualify. I find this confusing. My disability is worse to me than a physical ailment as far as being able to be productive at work and what better reason is there than this to be on disability?

She needs me to be with her and I need me to be here with her. She can barely walk and now spends most of her time in bed. She's lost alot of weight and is quite weak. Her pain meds make her sleepy and confused. She needs help with almost everything. I manage meds, all household chores, meals, take the calls from concerned family and friends, go with her to every treatment, test, and doctor appointment, etc. There's been several hospital stays amounting to a total of about 5 weeks since July. I have no other option than continue to do it this way and my job has to take a back seat or if it comes down to it, I'd have to leave it. I could not bring myself to drive away every morning and leave her alone for 9 hours.

The amount of stress is incredible and part of that load is to do with my job. So many feelings on that one. I keep wondering if I'm unusual for being away from my job for so long. What's normal, accepted? What do others do? How can they manage to if they go to work? She is on disability from her job and without my income we would have more financial stress but we have access to money through our home's equity so I dont consider money to be an issue.

[hazelharris]

hi pw5599 my heart most definitely goes out to you there are many on here who have been in exactly the same place as you are now and they will all feel desperately sad for you there are no words to express how deeply sorry i feel for you it's a hell that no one could ever understand or even begin to know what it feels like in this desperate situation unless they have been through it themselves
of course it's hard to stay strong where we find this strength from i will never know we are forced to find courage to face the days its love for them that keeps us going as best we can
your job has to take a back seat these days will pass and you are needed at home forget work stop being stressed about it most firms are understanding in these situations just make sure they know whats happening and that work has to be put on hold for now you say you have enough to get by on so put this stress down you have enough to cope with without this worry the future will take care of itself
you are among friends on this site who will always be here for you if you need to talk or you can pm us anytime you will not be alone
i send my love and prayers to you your dear wife and your family
hazelxx

[gumek]

hello dear pw, first i want to say so very sorry for all that has happened to your precious wife and yourself, there are a few here who have been right where you are now. you didn't say if your in the UK or US, there are support agencies in the uk through Mcmillan nurses, the cancer units can help with finances. i'm retired from work and was able to be here 24/7 when my husband was in the last stages and all throughout the horrible ordeal.
i would have chosen to be there till the end even if it meant hardship, we know that the time will come when your dear wife will go from here, every moments with her is precious, my heart goes out to you, if you have children, other family members and friends allow them to carry you, they will want to be there. we offer a sad welcome to you, our forum friends know and understand the hard road that you are on, please allow us to be here for you. some of us pray, the prayer we all cry out with is for our loves to be healed, my prayer for you is to be carried, comforted and strengthened and for all the support you will need including financial, will be provided.

love and a hug

chrissie. xx

[pw5599]

Thank you for the responses, and so quick! Great to be here amongst people who understand this ordeal. I am in Canada and very lucky that we have many medical services as part of our medicare system, and most of course are free. I dont think any modern civilized society should leave their citizens to bear the financial burdens and hardships of serious illness.

We do have a home care nurse who comes once a week and any other time when needed. They have been fantastic. All treatments, hospital stays, doctors, etc. with the exception of the hyperthermia ones (a private clinic in BC) have been covered.

As for my time with her, I did decide that I'm needed here for her now and I try to put the thoughts of my job in the distance. I've been handed a very important role and not one that anyone would want but I do take that responsibility seriously and vowed to do my best.

We are both so lucky to have employers with such great benefits but as I have found out, getting disability for me is complicated and stressful. As a coworker pointed out, do what I can to go along with their system and take whatever they will provide for as long as possible. The proper people at work do know what is happening and I was advised early on to make sure any claims are based on what I am going through rather than saying I want time off to be a caregiver. That does not qualify one for disability.

Thanks to you all here, I know sharing my thoughts will help me through all of this.

[kaza]

hi pw

I was very sad reading your story, your story is almost the same as mine when my darling geoff took ill and then finally passed.

I too was dipping in and out of work, the best thing to do with work is agree at all the meetings, remember they have a duty of care to staff so i am sure they should look after you.

I know you are being very brave and it is hard to understand why are loved ones are taken from us with this terrible disease. I too grieved from day one when geoff was ill, every day i cried in secret but let the emotions come don' stop them.

This site is a wonderful place to rant and rave, the people on here will look after you. You only need to ask and they will be there.

I wish you peace and love and i will be sending prayers for you and your wife.

karen

[j's daughter]

pw5599, I understand your need to be with your wife now, and believe she needs you there with her.

Have you been in touch with any hospice near you? I don't know where in BC you live, but most communities have a hospice / palliative care service that will support you and your wife in your own home. Have you spoken to your wife's doctor about this? You would still be there with her, but it would give you some respite. You need to sleep, to get out for a bit, even for a walk sometimes, if you are going to be strong for your wife.

Hospice care is no charge to you. It's volunteers who come to your home and help, or just be there for a bit so you can get some rest. Please look into it. Sounds as if you need more help than you are receiving.

My heart goes out to you. This is a very difficult time for both of you. Do you have family or friends nearby who can help out?

[pw5599]

Thanks Karen, j's.
I dont live in BC, I'm in SK. We traveled to BC twice right after her 2nd and 3rd chemo sessions for the hyperthermia treatments. Those 2 trips were difficult but memorable. She hasnt been able to do chemo or anything else since Oct. due to some circumstance or another. At this point I dont know if thats good or bad. In there somewhere she had her gallbladder removed to alleviate some of the digestion issues but still struggles with abdominal and back pain.

She is under the care of Palliative Care unit and has access to all they offer which is great. Home nursing, supplies, drugs, etc. so we do have plenty of help. As for family and friends there is plenty of help there too.

I saw a Psychologist yesterday for my 1st time ever in my life and looks like she will be a help to me and for writing reports for disability. I was also advised by her to get out now and then of which I do sometimes but will try to do more of. I see her again Jan 3.

[j's daughter]

pw5599, it's good to know you have supports in place, including the palliative care services. You do need to be looking after yourself so you can be there for your wife. Bet you've heard that one before! I looked after my Mom during the 3 years she lived with Alzheimer's, and was so very often reminded to "take care of yourself" I thought I would smack the next person who said it. But it is true, of course.

And family and friends are worth their weight in loonies, aren't they? (I'm a couple of provinces east of you, in Ontario).

You've found a good forum here for support as and when you need it. Let us know how things go for both you and your wife. My thoughts are with you.

[Mart]

Pw5599
I am so sorry to hear your storey it's so much like a lot of us on here I myself
Nursed my wife who left me in April after 12 months of treatment , it's so hard to watch them fade away before your eyes and it doesn't matter what you do you just can't make them better and would swop places with them , you must forget work and spend every precious moment with your wife . Believe me when the time comes its going to be so hard for you , I know what you have coming and you will need all your strength to get through it
Thinking of you at this sad time mart

[pw5599]

Thanks everyone for the kind and wise words.

Mart, you went through the same situation and are surviving, I have to admire that. Thinking back a few months I can see how this disease has changed her. Cancer is taking her body and soul and now morphine is taking her mind. It becomes more difficult for me to remain stable. There are moments when she is the person I know and love but far too many now that she is not.

For anyone who's been through this, an opinion on treatments if you can.
She had radiation treatments, 22 on each location in August. Midway through those is when things started to change. The side effects are subtle and slow. Chemo began in that time as well, and she has had 3 with the last one being at the beginning of October. There were 2 trips to BC for Hyperthermia directly after the 2nd and 3rd chemo. That treatment was at our expense, the remainder of her treatments were covered by medicare.

Since that 3rd chemo session she hasnt been able to have any more due to some circumstance or another. One of those was a gallbladder surgery. Her nausea and digestion issues turned out to be more than just chemo side effects and I on several occasions suggested to doctors that maybe she should have the gallbladder removed since we knew it had stones. Finally that got done and she improved, for awhile. Every chemo session after the 3rd has been postponed, cancelled and rescheduled. Now it's low platelets that have stopped the chemo. They suggested whole brain radiation when the brain tumours were discovered but during a discussion with the oncologist the side effects were discussed. I already knew about them and in the end the oncologist said to us, if it were my sister I wouldnt do it. We declined the treatment.

So at this point we struggle with the decision, is it worse to have more chemo or worse to go without? We're at the point where we say, try it once, see how it goes. She handled the first 3 ok but she was also much stronger. I worry about making this decision. The new chemo is now scheduled for early January, that is if she is deemed ok to get it.

So we wait again. We'll go through what will most likely be our last Christmas together. I'll have to watch her body grow weaker and her mind go into a deeper morphine induced haze. We'll make what we can of it and I'll continue to take care of her, to give her my best in the limited time we have left.