December 31, 2012 § 8 Comments
Well it has been a bit of an odd year. A year out of perspective, one that really, I’d rather hadn’t happened. But it has and I need to get on with my life and move into the New Year and take advantage of the freshness of that change.
I was talking to a friend this weekend and she said to me, “but Susie, when people have life changing events happen to them, like being told they’ve got an awful illness, they change their perspective on life and start to make changes, do things they’ve always wanted to, you need to do that too”.
I just didn’t know what to say, other than, I just want normal back. Yes, I did go through a period where I had an almost religious reaction to my diagnosis and felt I should do something ‘worthwhile’, but I quickly moved into the next phases of denial and depression. Maybe that’s a failing in me, but I can’t force myself. Yes of course I’d love to travel and achieve some professional goals and loose weight and spend more time with friends and all the usual stuff you want to do in a new year. But, what I really want, is normality, to be able to go for a proper long walk without fear of hurting myself so badly, that I’ll be unable to walk for a week, to not feel dreadful all the time and tired and sore. If I can achieve this in 2013 I’d be very happy with that.
To all the blog readers, sick and well, hope your 2013 is everything you want and hope for.
December 15, 2012 § Leave a comment
Well my apologies. I have without a doubt been missing in action. It has been a busy time for me of late – my daughter finishing school and all the various celebratory events that go with that; my last chemo; then my last two does of rituximab (sorry forgot how to spell it); my visit to the haematologist; trying to find some work and in the last week, taking a short break with my family on the western australian coast. So it has very much been facing up to trying to manage all the other realities in my life and not feeling bombarded. So maybe the best thing to do is to just reflect on some of these over the course of a couple of blog entries.
Well Katherine finished school a couple of weeks ago. What a milestone that was for us all. I am very proud of how she has managed her own issues to get to the end of the year. It has been a tough one for her as well. I have to say that there were several times – dating back to the start of the year – that we didn’t think she would make it through the year having to battle the demons of anorexia. As I have said before it is such an awfully insidious disease. Anyway, through sheer strength, determination and courage Katherine made it through and while her final results are not in yet and we won’t know which university course she gets admitted to until the new year, she has done exceptionally well. Her determination to work hard and get terrific results constantly surprises me – and for someone so young, her strength and focus is inspirational. She is working hard to beat the anorexia and I am sure that with the focus she has – that will happen. We would all like it to happen quicker than it will of course, but these things take time. She is also working in a local cafe these days – since just after her exams and is really enjoying that. It is giving her a sense of achievement and, of course some cash, so that all goes some way to help her feel better about herself. I say that while also wondering why it is that such a beautiful girl both in character and looks and with so many wonderful qualities, could ever think otherwise. Her beautiful red hair, fine features and pearly pale complexion which I treasure so much and which make her the beautiful girl she is – are not features that she values. Life is cruel sometimes. It plays tricks on all of us.
December 10, 2012 § 6 Comments
I’ve been putting off going to the dentist for ages. Well, I have had a good excuse, but I really had to bite the bullet (pun intended) and just go, as I’ve had a bit of tooth ache.
You’d think, after having gone through all those horrible invasive tests when I was diagnosed with dermatomyositis; Crying like a baby after the horrible muscle biopsy, having all my bits prodded and poked and various metal things inserted in various places, you’d think the dentist would hold no fear for me.
Well think again.
I hate going to the dentist, even though my actual dentist is lovely beyond duty and kind and sweet and caring.
I first met my lovely current dentist, after a particularly horrific experience at the dental hospital with an impacted wisdom tooth, she righted the wrongs, lets just leave it at that. Anyone reading this, who has had the misfortune to have an impacted wisdom tooth, will know that this is no laughing matter (more mouth references, I can’t help myself). In this case, not only was it impacted, but it was also infected. I can’t quite remember how I ended up at the dental hospital, but I had at one point, two students and their lecturer trying to saw their way into the tooth, hidden by some pesky bone which just wouldn’t budge (yes, it was like something from a horror film). Oh and I forgot to mention, the anaesthetic wouldn’t take, after many attempts and so this was pretty much done with no pain relief. At one point the dentist was virtually standing on top of me trying to extract that tooth. Dear god, it was horrific, yes worse than the muscle biopsy, maybe worse than childbirth, Im undecided on that, certainly up there with childbirth. I ended up sans wisdom tooth (some may argue, sans wisdom too) and I couldn’t eat solids for a week because my mouth was so swollen – there is an analogy there with childbirth and something else swollen and painful, but I’ll leave that to your imagination.
The above horror tale, may well be behind the whole fear of dentists thing. By the way, I also only have one child…
So any excuse not to go, is used and having been pretty ill for a long while now, has played nicely into my excuse list.
But I went today and now I have to have a old filling removed and replaced as it’s got decay starting around it, BOO HOO me! Not fair, I’ve had enough this year of being poked and prodded. Santa, why me, give me a break you rotten sod!
I know that it will be pretty painless and fine, but I still feel nervous about it. If you asked me if I wanted a muscle biopsy, or a filling removed and replaced, I’d choose the latter in a heartbeat that’s for sure. So bring it on dentist, I’m ready for a drilling.
November 24, 2012 § 6 Comments
It seems there are two types of people, those that shower and those that bath. I’m normally a shower person, but I used to be a bather. In fact when I was growing up, in 70s northern England, having a shower was for posh people, or those from ‘down south’. In fact, where I grew up, I’d probably have been beaten up at school if I’d had a shower (beaten up by both the teachers and the other kids…).
I eventually did become one of the posh kids and had my first own, private shower, when I bought my first house at age 30. Even then, the house was so run down that the shower was held up by Sellotape.
Ever since, I have showered, it’s just quicker and you don’t have to wait around for a bath to fill up.
But today, I was having a sore day and my chest was bad and I felt generally unwell – probably because of tapering the prednisolone. I felt like I needed some soothing, something that would ease my aches and pains and suddenly I remembered I have a bath! That strange white thing in the corner of the bathroom with shiny taps on the end that allow water to flow out of them.
So I ran the bath and yes it took ages to fill up. But when I got into it, the immediacy of the soothing effect was astonishing. I instantly felt comforted. The aches and pains flitted off into a memory and even my breathing problems subsided. I lay there in a happy bubble feeling almost normal.
As I lay there, I remembered back to my first shower after getting out of hospital for the first time; I remembered being afraid of falling because I was so shaky and weak. I remembered needing Steve to come in afterwards and change my biopsy dressings and put my creams on. I remember feeling very ill.
And as I remembered all of those feelings I thought to myself, haven’t I come a long way.
October 25, 2012 § 4 Comments
I was having a really great coffee in a little cafe in town and on my way out heard someone call my name and say hello. I have to admit I had no idea who it was but said ‘hi’ and obviously looked sufficiently dopey and vague for them to remind me of who they were. Well even that didn’t click immediately but we started a short conversation – with me madly trying to remember who this person was. Thankfully it finally dawned on me, but not until they reminded me that I gave them their first permanent job some 21 years ago. And so now I remembered. He went on to remind me that he was just out of school at the time and was engaged in the organisation I was in as a very young trainee. On reflection I remembered him as a really nice, friendly, motivated guy and yes did recall helping him out with a job for all those reasons. Anyway in the course of the brief conversation he went on to tell me that he is now doing consulting work in the IT industry, earning an excellent executive salary. He concluded the conversation thanking me for helping him on his way – in fact said that that was the important break in terms of getting him on track for a decent career in the IT industry. I felt very proud and very humbled.
Why is this story so important? Well for me its important because it reminded me that despite the ups and downs of this year (of which there have been plenty), that I have made a difference that counts to someone. For me it was a reminder to look at the good things that happen rather than the things that are bad or don’t work out. It made me realise that the impacts we have we may not realise until years later or may never even know at all – but notwithstanding that, the impact has been made and someone has been touched. It was a sobering conversation at a time when I am thinking abut my future. I think we all have these moments. This is the one I am sharing with you.
October 13, 2012 § 4 Comments
In the area of the UK where I live there’s a scheme called ‘Healthy Life’ where if you’ve had a heart attack, or cancer, or other serious illness you can be referred by your GP to have a fitness assessment and a plan of action built for you to get you fit again. So, my GP referred me to this scheme and I had an assessment by a nurse, who has put my under the wing of a fitness instructor to…get fit…
I had my first session on Friday. To say I was pathetic overstates my capabilities. I almost started crying, trying to do leg presses. I eventually managed 2 on the lowest setting. I cried because I remembered going to the gym before this disease hit me and being able to do leg presses to my hearts content. It really hit home how poorly and weak I am. I did do 5 minutes on a exercise bike, again on the lowest setting and did some mini arm exercises and another 5 minutes on a treadmill: It’s sad and hard, but it is a start.
I am in a bit of pain today (the day after as I write) especially in my hips, but I have to keep going. The doctor says I need to find my limit and not overreach it, pain being the indicator. But I’m in some pain a lot of the time anyway, so how do I really judge if it’s the gym or the disease causing it?
Whatever, I’m going to another session tomorrow – this road to recovery may be long and hard, but at least I’m on it.