[annettewParticipant]

Thanks Mavis, we have got Macmillan support but they've not really been able to answer many of our questions, I guess because a lot of the questions as you've all said don't have answers 🙁 They have offered us a tour of the hospice, and family counselling which my sister and I have accepted and are waiting for.
To be honest our best support has been our family GP who has been wonderful and in my opinion has been a God send! She is very new to our practice, replacing our old GP (Who dad had been to several times with symptoms of anaemia prior to diagnosis and been fobbed off!!)His Paraprotein was in the 70s when he was diagnosed which I think is quite high? Anyway, our new GP has come from the local Hospice and so has a high level of understanding and experience of cancer care and has been wonderful in explaining things to us, dad, managing his pain. The problem is she has been the only one who has been supportive and informative and I can't keep phoning her with questions, so its only when we need an appt for dad for something that we get the chance to ask other questions.
He had an OPA with his consultant today, his Paraprotein is still 6, so the steroids appear to be holding that at bay, yet he clearly is getting more sleepy, uncomfortable, and the consultant said the small lumps under his body were related to the myeloma.
He didn't seem concerned about the fluid on his lungs? Unfortunately I wasn't at the appt and so couldn't ask what was causing that. They have arranged to see him again in 6 weeks. I think they are continuing to see him so he doesn't feel "abandoned" by them.
xxxx

[annettewParticipant]

Hi again,
This is such an unbelievably difficult time. Today is dads birthday, I have tried so hard to live each day as it comes but am just having a really bad day 🙁 He is visibly deteriorating, getting weaker, having much more pain, he is on 40mg MST twice a day (is that a lot??) plus oramorph a couple of times a day. His eye is bright red from a bleeding vessel that hasm't improved for a week or so now, he has fluid on his lungs so has had his water tablets increased, and his mobility is getting worse, he has real weakness in his right leg. So I start "preparing" myself … BUT his blood test taken yesterday apparently is "fine" according to the oncall GP I spoke to today (His own GP wasn't in today). Why is he deteriorating, yet his bloods all seem fine? Sorry to have a bit of a meltdown on here … didn't really know where else to turn! Emotionally I am at breaking point and exhausted 🙁
xxxxxxxxxxx

[annettewParticipant]

Hi all, thank you so much for your lovely kind words. Sorry its taken so long to reply. I am starting to understand about what you mean about the benefits of not looking ahead, not being obsessed with "how long" but just enjoying each day as it comes. We have Dad's birthday in a couple of weeks and are planning a lovely BBQ, just immediate family. Then once that's been and gone, we'll plan something else to look forward to. I am spending as much time with him as I am able. I have 2 young children, the youngest being 3 and so full of energy that she tires dad out, and although he loves seeing her, I do try and limit the time of our visits to short ones as she can be very loud! 🙂
He is starting to feel unwell again after a few weeks of feeling great. However he re started the pamidronate drip last wed, and it always used to make him feel rough so we are wondering if that's the reason. The swelling and uncomfortableness in his face has been slowly returning these last few days. But I am trying to make a conscious effort not to focus on it, and trying to help dad do the same. Very hard though 🙁
Sue, I think our GP meant that although he seems well at the moment, we know we have rough times ahead, at the end, and that with cancer patients she said they often have a very good time health wise shortly before the end? Their bodies almost have one very last attempt at fighting the cancer before it no longer.
Much love Annette xxx

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