December 26, 2012 § 14 Comments
I’m not going to write a post about being ill or my bad leg today. No, this post is about my new Rudolph jumper and some memories it has invoked.
My brother, Andrew, whom I love and adore and with whom I shared a difficult and mad 70s childhood, is one of the worlds worst buyers of presents, ever. Some of his presents should go down in history for their tackiness, the teddy bear on a bike is one that springs to mind (I ended up giving it to the scouts for their jumble sale – isn’t that awful). But I have begged my brother to either let his wife, Bev, buy the presents (she is very good) or give the money to a charity on my behalf, or better still, don’t buy me any presents at all, I really am happy to just see him at Christmas, that is present enough for me (at this suggestion, he said I was being selfish, not allowing him to give me a ‘proper present’).
For several years this worked and Bev bought the presents and all was well. Then this year I woke up on Christmas morning to one of the worst presents anyone could have possibly bought me…a Rudolph jumper….ARGGGGGGGG
Now I know they are ‘in fashion’ but really, I don’t care about that, I actually screamed when I opened the package, then sat, face aghast for several seconds while it sank in, then realised, “Oh God, Andrew has bought the presents this year”.
Now me and my brother have a very close relationship, born out of particularly horrible shared experiences of Christmas. Let me give you an example. We were brought up in a very poor household, by quite old parents. Our mam and dad had a full set of grown up children by the time me and my brother were born and so by the time we were around and wondering if Santa was on his sleigh, they literally couldn’t be bothered. Coupled with that, they were of a generation that had lived through rationing and World War 2, so gift giving was not at the top of their agenda.
One year, our mother actually told little Andrew and Susan that they had a choice this Christmas, “food or presents, which will it be?”. Being sensible children and knowing our mother didn’t have that good a sense of humour, we chose the food – however, it still turned out to be egg and chips for Christmas lunch that year.
So out of this close relationship I am able to be quite frank and honest with my bother, so I called him up after the shock of Rudolph had worn off and I just had to tell him it was possibly the worst present he’d ever bought me and that is saying something. He got quite upset at this and I did feel a bit guilty, but I held my ground, otherwise god knows what might turn up next year. I said that under no circumstances would I be wearing it when I came round to his for Christmas dinner today and in fact I would only wear it under several other layers of clothes, to keep warm. He continued to be upset and I did feel pangs of guilt about being so honest about Rudolph and his merry nose.
That morning I continued to hum and har over that bloody jumper and as I got ready to go to my brothers for Christmas lunch the guilt took over and before I knew it, I was wearing the jumper and you know what…I think it actually quite suits me.
When I walked into my brothers house, he saw me wearing the jumper and clapped his hands with glee, his big ugly face lighting up, how I love him: My brother is one of the best things about my life.
Oh and you can see in the picture of me and Rudolph above, my moon face from the prednisolone has come down a bit, but its still quite puffy.
December 23, 2012 § 3 Comments
To all our family, friends and readers
I hope you have the most wonderful of celebrations – whatever it is that you celebrate at this time of year. No matter what has gone before, Christmas holds the magnificent opportunity for peace and love. Since I can remember it has been a special time in the life of my family. I hope ti is for yours as well.
Merry Christmas and thank you for all your wonderful support.
Love Suz x
December 23, 2012 § 2 Comments
I’ve just had a little holiday break after my treatment. You don’t realize how fantastic a holiday is and how much you need it until you take it !!! Even though the last few months have not involved much hard work, the ability to just get away and change the routine is itself refreshingly therapeutic. While of course not much happens when you are unwell, I never felt quite comfortable doing nothing – not being pre-occupied with something ‘meaningful’. For some reason being on holiday gives you permission to escape from all the things you usually worry about. If nothing else – this is why holidays are a MUST !!!! Let’s face it, the worries will be waiting when you get back (as I have found out all too quickly). We really need to stop being so hard on ourselves.
Anyway my list of the ten best things about holidays:
- Eating fresh fish and chips
- Being anonymous
- You can’t get an internet connection
- It doesn’t matter what the weather is – you can relax whatever happens
- Reading the papers – from front to back over more than one day
- Going out for breakfast
- Walking along the beach
- Slowing down – literally !!!!
- Going to bed late
- 10. Not having to clean the house
By the way – am still bald !!!!!
December 21, 2012 § 3 Comments
Dear Blog Readers,
just a post to wish you all a Merry end to the year; whether you celebrate that as Christmas, or the Winter Solstice (my favourite) or the Dongzhi Festival, or Pancha Ganapati or Al-Hijira (already begun) and Hunnukah (already done) whichever one you have chosen in life and I’m sure I’ve missed several out, sorry.
Whatever your religion or philosophy, whatever your gender, or the shade of your skin..I wish you the happiest of times now and always.
(And wouldnt it be a better world if none of the above mattered)
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.
December 5, 2012 § 11 Comments
The thing about dermatomyositis is that is can permanently damage muscles and that’s something I’ve been hoping wouldn’t happen to me. If you’ve been reading this blog, you’ll know I’ve got a ‘gammy’ leg – ‘gammy’ translating to a lot of pain in my left leg and associated swelling, when I do a bit too much exercise (by too much, we’re talking here of minute amounts of exercise, not climbing a mountain or anything).
So the other day I went out for a lovely lunch with my daughter, Elaine. We went to a suburb of Newcastle upon Tyne called Heaton, where there’s a few nice vegetarian and generally bohemian type cafes, over a fairly short distance.
In the first cafe we went to, called Sky Apple Cafe, we had a very delicious all day vegetarian Big Breakfast. It was such a lovely bright, crisp, blue sky, winter day that we decided that we would walk to another cafe, Heaton Perk, for cake and decaff coffee, the walk being about half a mile.
Now recently I’ve been building up my strength and stamina and I’ve been able to walk about half a mile (with a couple of rest stops) so, I was fairly confident getting to the the cafe for my cake. So, off we went, on the cold, crisp, bright day and made it, slowly, to Heaton Perk. Once ensconced, we talked about life and books and politics and how much I miss travelling. We ate gluten free lemon drizzle cake and drank steaming decaffeinated coffee and decided that life doesn’t get much better than this: Little pockets of happiness and cake.
Then we walked the half mile back to the car and off we went.
Doesn’t sound like much exercise does it. Well today my leg is swollen and very sore again. When I walk my knee buckles under me and the joint is very painful as well as the muscles around it. It’s so frustrating, not being able to even do a little walk without this happening. How on earth can I get back to where I was at this rate. However, I am utterly grateful Im not in a wheelchair like a lot of people with this disease.