June 2012
Mum is holding her own most of the time right now, apart from an occasional bout with nasty nausea/vomiting. Its lovely to see her very chirpy since her decision not to have any further chemo and recent visits from far flung children and grandchildren have been highlights. Its been good to get some extra help set up with the nurse coming once a week to visit and homehelp there to shower her and do some housework 3X a week. I am so thankful for these support networks available to us. They have certainly taken a lot of pressure off me for now and I've been able to get the car serviced, a hair appointment etc. I'm even keeping up with notes for school, mufti days and such!
But all the time I feel like this cannot last. I am on edge waiting for the next downturn. Expecting to arrive and see her suddenly much more jaundiced, or not eating again, or a new flare up of pain. I know I shouldn't borrow trouble and I want to just enjoy this lull while it lasts but I cannot escape the knowledge that harder days are coming and waiting for that quickly drains the joy out of now. Everything is bittersweet, precious time together always tinted by the knowledge that it is limited. I think its both a blessing and a curse, this journey towards goodbye.
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May 2012
Today was special - often I am so busy organising things for my mother-in-law, managing appointments and medication etc that I don't get to just be with her and enjoy the special person she is and the impact she's had on her family. I had hoped to get her out into the garden which she loves and misses (but feels scared to go out into alone.) Unfortunately the day was bitter cold and very grey and grim, so the garden was not a good idea. Instead, after I gave her injection and made a cuppa, we were able to just sit together for about 2 hours. She got out her jewellery box, I pulled my armchair close to hers, and we looked through all the treasures it held while she told me the stories behind each item. I won't forget this morning, it was a greater treasure than anything Mum's jewellery box contained.
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May 2012
You are so right about finding a calm time if possible. Such a helpful tip, thank you. And in the end if we skip a few home readers at times on this journey it isn't going to matter. Your understanding and wise encouragement are such a blessing to me. Thank you.
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May 2012
That is beyond horrible!! Must have been so very stressful for you and your wife.....Thanks for the perspective your experience provides too. That was some pretty tricky juggling you had on your hands and its encouraging to know you got through it. Like a few people have said, I shouldn't sweat the small stuff (like the home readers). None of us should really. Something I need to keep learning and being reminded of all the time.
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May 2012
Thanks Rikki for your kind words and encouragment. Your comment about our home brought tears to my eyes! And probably a good cry is just what I, and my little girl, need. You're so right about mother's guilt too. Just creeps up on you....thanks for making me more alert to its insidious approach.
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May 2012
This evening my bright little 6 year old daughter who is in the top reading group in her class, sat and stared at her home reader and grumpily refused to even sound out words she could easily manage or to think about them related to the pictures etc as they are meant to do. And I am ashamed to say I got really cranky with her for not trying - my husband is still at work even now (8:30pm) thanks to some horrible deadlines he cannot escape, and I feel like I am not keeping all the balls in the air. Not even close.
I spent today meeting with the Palliative Care nurse at my mother-in-law's home then taking her to a GP appointment, squeezing in a little shopping and getting some washing off the line, cooked spaghetti bolognaise for dinner, got the dishwasher going - it all seems so small, so minor, and why does it leave me frazzled and exhausted?
Its a little thing in one way but its not how I want my home and family to be. And how can we bring Grandma here if this is what our home is like? She surely doesn't want to be listening to home reading dramas and a short tempered mama during her last weeks.....
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May 2012
Thanks PA - I so deeply appreciate the comments from people on this site who know what we are facing and have been able to encourage me. Sometimes its so good just to know you are not alone in this.
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May 2012
I think your wife is very brave to have asked this question. We are at the same point with my mother-in-law. In her case she simply can't handle any more chemo and is content not to have any more. But none of us have been able to get the words out in any of our appointments, even though the question is there preying on our minds all the time. So in some ways, your wife's courage is a blessing to me too. Although obviously every patient is different, your sharing this part of your journey gives me some kind of framework to apply to us. I know we have to work up the courage to ask this, maybe at the next appointment with palliative care....Thank you for the example of courage you and your wife are. I hope all goes smoothly for you to take the time off work.
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May 2012
I also agree - I was having just this conversation today with my mother-in-law as we spent more time at our local cancer care centre. Everyone we have ever met in these places has been kind, caring and gentle and we are grateful for them all. While its not an environment anyone wants to be in its a blessing to have this sort of care when you need it.
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May 2012
Mum was discharged from hospital yesterday and its lovely to see her back in her own home, more relaxed and comfortable. I've been shown how to give her the daily Clexane injection she needs following the blood clot and the first one this morning went smoothly. Phew. I suspect I will be mastering more new nursing skills such as this.
Today was also our first appointment with Palliative Care. Intimidating name especially when you've been there before. (My father-in-law also died of advanced cancer 7 years ago.)The doctor was very kind and gentle and yet was able to talk directly about some things that have just been too hard for us to verbalise. Just couldn't bring myself to ask about any sort of timeframe though. I need to have some sort of idea so we can make decisions and plans but maybe I can ask in a different context when Mum is not part of the discussion. It was good to find out about the specialist nurse who will come and see her, the doctor who can do home visits, the palliative care beds at a local hospital, options for pain relief etc I feel like I have some concrete information I can work with now.
The odd thing is that Mum thinks she is really well now after her stay in hospital. She told the doc she was "really fine" when he asked. And she IS so much better than when she was admitted. But....she seems to think it will last and that she doesn't really need any help from Palliative Care. I don't think she really has any idea how sick she is at this stage, which is kind of frustrating and makes it hard to help her. The doctor told her gently that she is not going to get any better than this and it will only be a downhill slope from here. I hate the feeling of waiting for the next downwards step. I know its coming and we will handle it with their help. I think I need to learn to live in this day and moment only. Not something I've ever been good at!
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