Tonight I really needed something to make me laugh. This picture from someone on Facebook did just that for me. The squirrel totally reminded me of Howie Mandel. He’s a Canadian comedian and he’s also a judge on America’s Got Talent. Love that guy! :-)
I’ve just completed this book by Dawn White. On Friday we discovered that Cancer Care had a resource library for patients and their families. Imagine that? It only took us 5 weeks to even know it existed. Sheesh!! We walked out of there with our arms loaded with reading material. :-)
This book is written by a woman from Manitoba who’s husband was diagnosed with Multiple Myeloma and how they learned to navigate the Manitoba Healthcare System. I could totally relate to so much of what she wrote and it gave me the courage to stand fast in asking for a different doctor.
I would encourage anyone that is going through a health crisis to read this book. Dawn offers so many good suggestions to help patients and their caregivers during their journey.
It’s only 2 pm and I already feel like I’ve gone through a full day. This morning I had a bit of a scare. Well, it was more than a bit of a scare, it was a LOT of a scare!
I just wanted to post something quickly to say thank you to all of you who read my last post and either commented on my blog, fb page, or messaged me.
With this damned cancer, I am so lucky to have such a fantastic family around me, and such great caring friends…..both new and old friends. And it is having that support around me that really keeps me going at times like this when everything is tough.
I will get through this next bit….I am confident in that. Just bear with me while I get there.
Love you all……………….
So today I did something that I had been putting off for about 6 months. I had some bothersome skin tags in my armpits that I continually nicked with the razor when I shaved. It seemed like every time I booked the appointment, something would come up and I would have to reschedule it. The last time appointment I had booked ended up being Mr. B’s first chemo treatment and I had to cancel two days before the appointment. I’m sure this clinic was REALLY impressed with me. So I hopped on bus and made my way downtown by myself. On Tuesday Mr. B offered to drive me but I politely refused. Well, not really so politely. I said,”Not while you are still taking breakthrough morphine!”. Turns out he wasn’t in any shape to drive today anyway. He was in quite a bit of pain again last night and today so his mood wasn’t very good. And yes, I do have my driver’s licence but I really hate to drive. I mean, REALLY HATE TO DRIVE. It causes me all sorts of anxieties just thinking about it. So I took the bus and grabbed a taxi to come home. I had a new client that was dropping his paperwork off and I didn’t want to take a chance on being late if I went home by bus.
While I was waiting for the taxi, it really hit me. My life will never be the same again. I better get used to doing things by myself. I read so many other blogs and the patient is still doing things like working and poor Mr. B can hardly even walk to the bedroom. We only leave our condo for Mr. B’s treatments, blood tests and doctor appointments. I’m starting to get cabin fever. :-(
Today was a dex day. Know how I knew? Well as soon as I walked into the livingroom and even before I could say good morning to Mr. B, he announced that today was a dex day. Was he trying to warn me? LOL
Today we flushed Nitro down the toilet. We think he died some time yesterday. I hope he is in fish heaven. :-(
I haven’t written for a while….largely because I have been really chocca trying to get on with things. But the last week or so have been really tough and I’m really feeling lost and don’t really know why or how to cope with it all.
I don’t seem as able to cope with things since the summer and I find that all so frustrating. When I first got told it was time to start treatment, it was on the basis that my life would go back to ‘normal’ afterwards, but that just hasn’t happened. To everyone around me, things are fine again, life is hunky dorey, and I should be happy…..but I just don’t feel quite like that. I go through phases where I can cope….and then bang, it all seems to come tumbling down. And not always for any good reason. Recently, just trying to redo our bedroom has all seemed far too much. In the past I’d have thrived on this, but this time I just can’t cope. I can’t multitask. So trying to do the room, help at school, keep in touch with friends, and organise a ball has all just got on top of me. And I can’t deal with the fact that I can’t find what I want. I do nothing else all day, so feel it is down to me to find what we want for the room and when I can’t, I just feel like a total failure. And what makes it worse, is that I know it is only me that feels like this. Not Nick. He is brilliant and just wants me to be happy.
It’s not straightforward I know. At the moment I’m particularly sad as one of the guys from our ‘Under 50′ site, died over the weekend. I always find it hard when something like this happens as it brings home just how real my myeloma is and just what might happen to me. I’d just felt back on track mentally, and it has sort of brought everything crashing around me. I hope to dear god that my remission will last many years, and I have been living life thinking this, but when people die or relapse, you realise that what you wish for in life doesn’t always come good. I can’t stop thinking about her at the moment and I didn’t know her more than to write to. It just makes me feel so, so sad. God it’s all so rubbish.
Things are hard work these days. Nick thinks that part of it is that I have to learn to deal with being in remission. I feel like I should feel lucky to be in remission. There are people I know who have relapsed already, and god knows how they’d feel reading this – probably thinking that I should thank my lucky stars. But what do you do? I seem to be fine for a while and then things just build up and get on top of me. I don’t sit there thinking ‘It’s the myeloma’, or ‘I’m so unlucky’, but most of the issues we have these days come back to the fact I don’t really know whether I’m coming or going these days. I don’t know whether I have 6 months ahead of me, or 6 years. How do you live your life on those terms. With 2 kids, I can’t just go ‘sod life’ and do what I want. I still have the things I have to do everyday. And we still have the financial obligations. I want to go back to work if I’m going to be well for a long time, but not if I relapse this year or next. I want to enjoy the kids and have special time with them, but don’t want them to become spoilt or think that we can do that year after year. But I hate the idea with everything that I will assume/hope that life will be ok for ages, and that if I relapse I’ll look back and wonder why I didn’t take the opportunities when I had them.
Somehow with all of this I still feel obligated to so many people. Like I can’t let people down. Luckily my oldest friends are being really good…and I am very grateful to have people who I know in the main, take me for who I am. Now. But to so many people around, I feel I have to put on a bit of a show. Maybe we all do in life. It just really stresses me out now as I feel the conflict like I never did before. I want to be selfish and put Nick and the family first and foremost (and not care what the wider family and friends think). But I can’t do that. It’s just not me. I worry too much what people will think of me…or how little they’ll think of me. It frustrates Nick to pieces…..he just wants me to be happy again.
So, the question is how to get that back. I think I am happy when I’m busy…I feel like I’ve got it all under control. But then something seems to break me very quickly and I collapse. I don’t feel sad most of the time, but I think Nick is worried that I’m not very happy with my lot. I suppose it’s not really surprising but it must be so hard for him. How do you deal with it if you think the person you live with hates their life. Which I don’t. Not most of the time. But I do find it tough. And conflicting.
God, quite a self-indulgent post. But I really needed to write some of what is going through my head down. And hey, this is for me more than anyone else too.
More wine needed I think…….
Usually when you go to a doctor, you trust that they are skilled in the type of illness that you have and that they will provide you with the care you need.