Comments!!!

I'm having a few 'comment' problems. Think it's sorted now. If not, would someone email me to let me know. Thanks.

By the way Hattie and I did go to the park this morning. We fed the ducks, played on the swings, admired the squawking peacock and walked a long way. A much more satisfactory morning was had by all.

Seeking a Bendier Me

I took the baby to 'baby dancing' this morning. As we pretended to be running around, swinging and playing in the park, I looked out of the window out at the beautiful spring day and I wondered why we weren't actually in the park!

I'm not feeling great at the moment - really tired and achy, trying to tell myself everything's ok - and I realised that sometimes I need to do the things I know would be best rather than what I think I should do. I don't think Hattie would have minded walking in the park, feeding the ducks and looking at the animals. Sometimes I don't want to be part of a group, doing what I'm told - and I don't think Hattie does either.

I need to get fit - doing those kinds of activities (dance classes with the kids for example) reminds me how much my body has suffered over the past couple of years. I'm so stiff and inflexible - I need to start doing stuff to become fitter, stronger and more bendy! Walking, Swimming? Yoga? Pilates? Riding? Running? What's your advice? Help me out here. I need some informed ideas......

What I Did This Weekend - and other thrilling notes

I had my chocolate by the way. In case you're wondering.

So - our weekend went like this....

Scrapped dance classes for various kids in favour of a long and happy family walk. Well Rog and I were happy and the kids took it in turns to be happy while the others moaned generally, complained of welly-related problems specifically, and dropped various aspects of clothing pretty much continuously. Hattie has lost her hat - say no more.

We hastily put the kids to bed in the evening and settled down to watch 'The Hurt Locker' which strangely was already on our cable new releases. I was not at all sure that I wanted to see this but Rog assured me I'd get into the mood for a depressing war-film very easily indeed. And I was gripped and moved in pretty much great and equal amounts. But I hate the title. No-one knows how to say it - is the emphasis on the 'hurt' or the 'locker' or equally on both? How pretentious to give a film a name which even after watching it, one is still no wiser as to what it means! I had to do some online searching to discover the truth. And apparently it's wartime slang for 'a place of extreme pain'. There you go. But as for how to say it, I'm still none the wiser.

Yesterday I took Ed to his riding lesson and made fish pie - that was about the sum total of the excitement.

Actually though, I do love taking Ed riding. It was a beautiful spring morning and the metro trains thundered above us over the viaduct framed by a cold but bright blue sky. The stables are right in the middle of the city with the outdoor arena literally underneath the arches of the viaduct jostling for space between tarmac and scrub. The ponies are deeply unconcerned by the regular rumbling and rattling of the trains - more bothered I think by the drips of water which fall many feet from the iron rafters of the bridge to land anywhere in and around the arena. Sometimes, if it's been raining these drips become something more like a stream. But not yesterday. Spring was in the air even in the city itself and Ed rode tall in his new hat and back protector. I'm not at all sure that this is a past-time I really want to encourage - it's expensive and not ideal I guess for a boy with haemophilia. But Ed enjoys it and I enjoy it too, remembering my idyllic country childhood when I was lucky enough to be able to ride my own hairy, muddy pony every day.

My kids are having a different kind of childhood to the one I had. They're city kids but with the advantage of living near the most glorious countryside - Northumberland is truly breathtaking with a fabulous coastline. They have their Grandma's pub by the sea to visit just an hour's drive away and the beautiful and truly remote cottage up in the Highlands of Scotland where we're planning to spend a few weeks this May and summer. So maybe they have the best of both worlds in some ways. But I do still hanker after that country idyll.

Maybe we'll move someday in pursuit of the dream- if we can bear to uproot ourselves from what really feels like our family home.

What Do I Want?

I want CHOCOLATE.

Thanks

This is a thankyou. To Tracey at uno,dos, Tracey for your thoughtful message on my last post. You are right - I do need to 'listen' to what the information I read is telling me. I subsequently read that people who undergo bone marrow transplants can struggle for quite a while with long-term fatigue. Apparently it is a well known side effect.

It has been useful to read all this stuff which I had been putting off. It has reiterated what a tough time I've been through in terms of treatment - and reminded me how amazing it is that I'm still here to write this. I really do need to let myself relax more and remind myself that I'm really not 100% yet although I look as if I am. And that's partly the problem. I feel as if people are saying - you're out of hospital, a year away from your treatment. Why aren't you ok? But maybe they're not, maybe that's what I'm saying to myself. Anyhow - if anyone is saying that, I'd point out that I have had extremely high dose chemotherapy and a bone marrow transplant, plus radiotherapy. Not to mention a caesarean and a new baby while that was happening. And all that happened in the past 22 months. Couuld that be why I'm struggling with this overwhelming exhaustion?

It's helped to know all of this and to see it written in black and white. When I was going through it I literally took one step after another and kept my head down. Now perhaps I'm starting to process what happened.

I have decided to try to make early nights a priority for while. It can't hurt can it? Maybe it'll help. And I need some help that's for sure.

That old devil again

Oh dear. What did I do last night? Well, I gave in to the awful demon which hovers sometimes on my shoulder and for the first time since I was diagnosed with non-Hodgkins' Lymphoma, I looked the disease up on the internet.

From the outset I'd decided to entirely trust my doctors and not to read lots of scary, complex stuff which I'd half understand. And I stuck to it. The battle seemed too overwhelming without confusing the issue. I was very clear-headed about this decision much to the bemusement of some of my friends.

But last night for a couple of hours I surfed around. My version of the disease is very rare. Last night I found out just how rare. I found descriptions of the type of chemotherapy I'd had with medical analyses regarding its harrowing nature. There were accounts of deaths having undergone the chemotherapy I had, and accounts of deaths after the stem cell transplant I underwent. There were reports of the long-term effects of the chemotherapy - heart disease and other cancers.

But worst of all I stumbled across a study written for a medical journal. In this study out of 152 people who presented with NHL only 7 had the type of NHL which I had. Five years later, out of the 7 only 3 were stll alive and they had all had surgery to remove the tumour in their chest which I didn't. My (enormous) tumour was shrunk by the chemotherapy and I still have a lump of scar tissue left in my chest. Of the 4 who died, 2 died of chemotherapy related issues while having treatment, one died after the cancer had returned having been in remission for 6 months; and one died when the cancer returned after 46 months!! Oh my god! My consultant very clearly told me back in October that I wouldn't be anywhere near safe or even with the danger considerably reduced until 3-5 years have passed. That's not until 2012-2014. So I knew that. But imagine sailing along 46 months into remission feeling ok when the bastard returns. That's nearly 4 years. I've only been in remission for 1 year. It's all too much.

Of course it does NOT NOT repeat NOT help to read all these things. I've been feeling much more positive since my scan in January and have been more able to look into the future with something approaching equanimity. And I really have been shaken by all that I read - and there was much more than what I have described here. I feel quite traumatised really although reading all this hasn't told me much that I didn't know. It's just very very hard to read it all in black and white. Rog is very cross with me for doing this and upsetting myself although when I was first diagnosed he confessed that he'd spent hours looking online as well. I don't feel that I can burden my family and friends with all these new worries or rather these old worries which have reared their ugly heads again. So I'm using my blog instead. I hope you don't mind.

I think I need to try to rise above the anxiety although that's easier said than done. But, it is easier than it was. I hope it is anyhow. It's not feeling so easy at the moment.

However, it's another lovely spring day. Perfect, now - which is all anyone of us have after all.

Spring?

Am posting this post (??) from my new Toshiba netbook. I love it very much. I bought it for myself on the understanding that I would, really really would, write regularly. Not only on my blog, which recently has been a bit neglected but also taking care of my other projects which also easily become buried under a pile of domestic chaos.

To change the subject completely now, I have to be very British and comment on the weather. It's a beautiful spring day. After three solid days of rain - when doing anything not in the house has been a serious hassle - even walking to the car - the sun is out, it's cold but not freezing and the sky is blue. The birds are shaking out their bedraggled feathers and it feels like spring. Hooray for the first day of March. I can feel my spirits lift - and recently they've been rather down. Life's hard isn't it? You have to take your pleasures where you find them don't you? The past couple of years have taught me that.