To HRT or Not

Things are just crazy around here. I'm feeling absolutely shattered at the moment - lack of hormones, oestrogen in particularly apparently to blame - as I discovered today at the hospital. I've been taking a break from the HRT as things seemed to improve a bit in the hormone department back in October, but things have crashed even further into menopause than they were at the end of my treatment. All very depressing. I'm really having very severe menopausal symptoms which are disturbing my sleep and wrecking my days really. The aggressive treatment I received has led to an aggressive menopause.

I don't want to take the bloody bloody HRT - I've had enough of taking 'bad stuff', and I want to be as healthy and drug-free as possible. I don't want any of the potential side effects thank you very much. On the other hand, my oestrogen levels have dropped to such an alarmingly low level that if I continue not to take HRT apparently I'll need regular bone density scans to check for osteoporosis. Also, taking HRT would apparently have a marked positive effect on the desperate exhaustion I'm feeling, the sleeplessness and the swamping hot flushes which dog me night and day.

The problem is that I'm struggling - struggling with dealing with the kids, with managing my exhaustion and everything else at the same time. I'm only a year away from experiencing 'all they could throw at you' as the doctor today put it when describing my treatment. That treatment - the chemotherapy, stem cell transplant and radiotherapy still leaves its legacy today, and I had a newborn baby to attempt to mother through that experience as well as the other two kids. I never really rested then and I sure as dammit can't rest now. Perhaps struggling to stay off HRT is more than I can cope with now. HRT would undoubtedly provide me with some respite which I bloody need. What's a little weight gain, sickness and extra risk of getting various cancers? (yup, I could certainly do with that one!!)

If I'd gone into the menopause naturally I'd NEVER have considered taking HRT. But now everyone close to me, the doctor included, clearly thinks I'm crazy for even considering doing without it. But then they haven't had poison dripped through their veins for days on end. I know, I know -it got rid of the cancer, for the time being at least, but at some severe personal and lasting cost.

And, now I want another baby. Sort of. At least I would like the chance of having one. Most of all I'd like those good old hormones back. No-one's holding out much hope though. I think I had a bit of secret faith that my body might perform miracles, but now even I'm losing faith.

I don't know.

Ed

Ed had a bleed over the weekend in a tendon in his thigh. He was hobbling by the time he came home from school on Friday and couldn't climb into the bath by the evening. I tried to treat him and couldn't - I found the vein and then it popped as I was giving the treatment. On the other arm, I couldn't even find a vein and was fiddling around until he'd seriously had enough. On Saturday morning, I tried again twice and then had to admit defeat. Consequently we spent Saturday afternoon in the hospital until the nurses could find time to treat him.

I was mostly worried that Ed would lose confidence in me and start to believe that I can't give the treatment. He was in tears but he said he'd never thought I couldn't manage.

So tonight, when it was time to give him his weekly treatment - we were all pretty stressed although I was trying, probably unsuccessfully, to hide it. And I managed - with Ed giving me encouragement all the way.

It's bloody hard this - I got a telling off from the haemophilia centre for not bringing him in immediately on Friday night when I couldn't treat him, but I was making decisions which I thought was best for Ed. However it didn't fit with their treatment protocol. I can see their point but I knew that everyone needed to go to bed and that Ed would be ok until the morning - it would have been un-necessarily disrupting to have had to get in the cold car....

Anyhow - I'm so pleased that I can move on with confidence again - and that Ed can trust me to do the best I can. His pale tearful face on Saturday was desperate.

Majorca not Mumbai

So - plans have changed.

Now Rog and I are going away at Easter for a week and my mum is having the kids. I thought long and hard and realised that exciting as India would be, I'm not in the mode for exciting at the moment - or not exciting in that way. Rog and I have been through lots, lots, lots in the seven years we've been together - and we've not been away for longer than a couple of nights on our own in that time. With me being as ill as I've been, inevitably our relationship has been under considerable strain. Now we're just starting to get back on track - and a week away (in sunny Majorca - I booked it this morning!!!) will certainly help.

I'm so excited....7 lie-ins, meals brought to us and cleared away by someone else, no one to sort out but ourselves. I'll miss the children but we'll have some fun - which has been in short supply around here for some time now! We've already entertained ourselves for much of the day deciding how long we'll rent a car for and how many monasteries and beautiful little villages we can pack in to the week. As well as serious R&R, serious reading and serious coffee consumption.

I know - I'm so lucky to have my mum who's prepared to take on all three kids. She works hard - at 62 runs her own thriving and fabulous pub on the Northumberland coast so having the kids will not be easy. I wish my dad was around to help (of course I wish my lovely dad was around anyway - not just to help while we're away!!) but he died 10 years ago. My husband's parents are both dead too - so the kids are a bit short of willing grandparents to lend a hand. But I know my brother and sister will help too......

Vince... you were right when you commented after my last post that Rog needed to get away too after what he's been through. We'll have a laugh and a rest - and I'm planning to go on a riding trip to Mongolia with my mum next summer when I'm truly fit and well. Life's looking up.

P.S.

I meant to mention the dreadful earthquake in Haiti - which sure as hell puts all one's problems in perspective. That's the trouble with blogs and with having been ill - you become so bloody self-centred. I just wish there was something I could usefully do apart from give money. You poor poor country, poor mothers, poor fathers, poor orphaned children. Poor separated and amputated families. It breaks your heart doesn't it?

Meditation in Newcastle, Chill-out in Rajasthan

Ahem! Just clearing my throat really. I'm still here though.

I'm feeling so overwhelmed at the moment that I'm struggling to find time for the blog.

I've started meditiation classes on a Tuesday night - which seem amazing and interesting, but everytime I close my eyes and start to try to 'follow the inspiration' I fall asleep. It was the first session on Tuesday. I was sitting on a hard chair, in a cold, draughty room, in a strange and unsettling part of town, with a group of people I'd only met that evening. And I fell asleep. Honestly, I despair. I'm not sure you can sleep 'mindfully', which is what I suggested to the teacher when I woke up. I was bloody dreaming for god's sake! She was non-comittal.

I'm prescribing myself some early nights and stress-free days - ha ha. Otherwise I may as well just go to bed on Tuesday so I can sleep in more comfortable surroundings.

Stuff with the kids just seems to take over. I can't find time to read, write, exercise or sleep properly.

Thanks, by the way, for everyone's lovely and supportive comments to the last couple of posts. If I was American I might say, Gee, you guys!!!! But being truly British I can only express my thanks much more formally.

I know this post doesn't really have a 'thread' exactly, unlike my other seamless offerings (threads, seamless....?...), but it's an achievement to get to the computer.

Oh... and I might be taking a trip to India with my mother at Easter. Now that's more like it! No kids - Rog says he'll have them. For 10 days??? I'm not sure I can leave them, or should leave them... but it's an 'Easter Chill-out'!!!! In Rajasthan!!! Tempting - oh so tempting. A once in a lifetime thing to celebrate being well and looking to the future. But kind of selfish. And more than kind of unselfish to look after three children on your own when you don't have to. Aargh. What do you think?

What Now?

I'm feeling motivation to sort out my life. Does it need sorting? Well - I need to think about which direction my life is travelling in I suppose. I need to decide when to return to work, whether I want to leave Hattie at all and start that dodge and dance which all working mothers experience, and which I remember so well.

We need the cash - that's the trouble.

But honestly would my two or three day per week salary be worth the dropping kids off at the crack of dawn at breakfast clubs and nursery? Is it worth not being able to pick them up from school every day of the week? Would it be worth the awful calls in to work to tell them I can't come because Ed has a bleed, Martha's been sick or Hattie has chicken-pox? Can I cope with having anything extra to do in the evenings beyond what I do already? Because along with secondary school English teaching comes a hell of a lot of marking, planning and other miscellaneous stuff which would have to be done after the kids are in bed.

Where would my writing come in - a commitment which I find hard to keep at the best of times?

But, I need a career. I'm kind of between things at the moment. Really, I'd like to re-train. I think teaching and me have come to a parting of the ways, so if I did go back to work soon - back to teaching - I think it would only be a temporary solution. In the longer term - and it's so scary for me to even think like this after the past 18 months - I need to find something rewarding to do which can ultimately pay the mortgage when I go back to working full-time when the kids are older. Rog's 10 years older than me and although he's not over the hill, neither of us are spring chickens and we have a hefty mortgage which won't be paid off for another 25 years. If I re-train soon, I'll have a good 10 years to build up a career before he retires. Hmmm.

Have you noticed that I'm talking about the future? The long-term future. Somehow, I'm daring to begin to let out that breath I've been holding for the longest time. I'm only a year in remission and I've a long long way to go before I can say I'm clear of all this horror. But I'm feeling an optimism I haven't been able to even look sideways at since all this started.

And I'm thinking of trying a boxercise class. I'm a bit lacking in the old muscle-power so the experience might be somewhat humiliating!

A Year in Remission

I had the scan yesterday and today I found out that all was clear.

Inbetween the spaces of these words you might be able to glimpse at the kind of day I had today....

If the cancer had returned my prognosis was as good as terminal. Please bear this in mind as you follow me through the day.

I knew that scans were discussed in the morning by the multi-discipliniary team. So this morning I was kind of ok. I took Martha to her speech therapy appointment at 10.30 and took her back to school. I went to the supermarket to get some stuff - getting close to lunchtime now - getting wierd and trembly and twitchy in the queue.
By the time I was home the stress levels were ratcheting higher.

From 12, baby elsewhere, I huddled on the sofa next to the phone, waiting.... I had arranged with a nurse that she would call me in the afternoon. But the call didn't come. I tried to call and the phone rang and rang and rang. At each ring I thought that someone would answer and after necessary and desperate explanation somone might tell me my fate. But no-one answered the phone. All afternoon I repeated the call. By the time that I spoke to someone and expressed my desperation clearly enough, it was close to 4pm. They promised a doctor would call me back. And half an hour later, she did.

I'm pleased of course - understatement there!! I'm relieved and able to look my children in their eyes tonight. But I'm wrung out like I can't tell you with the level of stress I've had to manage today. There has to be a better system of care for people like me at times like this. I'm 40. I have three kids under 6 and I need to live. It was possible that I could have been given what would have amounted to terminal diagnosis today. If I hadn't kicked up an almighty fuss today, in all probability I wouldn't have been told anything at all and faced a harrowing weekend. It's not as if they said it was impossible to get the results so quickly. In my last conversation with the consultant and specialist nurse they agreed that it was reasonable and entirely do-able that I got the results today. But in the end the plan collapsed. That's some of what they were discussing on the radio the other day when I wrote my post. That sense of abandonment which I and so many others have experienced when we're not receiving treatment anymore. And all the doctors, nurses and other staff have got to know me well over the past 18 months. And I know they care about what happens to me and my family. I know my day was not made so unbearable on purpose. But unbearable it was.

However - it's clear, it's clear, it's clear. And I've achieved a year in remission. I'm going to spend the weekend planning how to move forward into 2010 with all the happiness and optimism I can.

My New Bag

Oh, oh! I went shopping this morning to buy a friend's little boy a present and somehow I bought myself the most beautiful Orla Kiely bag! It was reduced in a sale - but still it was more money than I have EVER spent on a bag. I don't do bags either, in fact to pay for my beautiful bag I took my purse out of my old, old bag that I've had for years. I have a couple of other old bags with which I ring the changes - but that's it.

Something must have gone to my head.

I justified it to myself as a present to cheer myself up before my scan tomorrow. I think that taking it into the hospital and subsequently taking it everywhere is just what I need. But I do feel guilty enough to leave it in its plastic cover from the shop until Rog gets back from work and agrees that I can keep it.

Wouldn't he be just a bit churlish to make me take it back? You're on my side for this aren't you?

Strangely, just as I was dithering over purchasing said bag, an old lady walked past and said out of the blue and unsolicited,
"If you can afford it and you love it, you should have it. You don't know what might be around the corner."
I took this as enough of a hint from the karma crew to scuttle off to the till clutching my bag.

I bought some clothes too - but that's another story.

Have found a way to ease those school-run, pre-scan blues. Spend some money.

But, THIS Morning.....

Tops of traffic lights
Our giraffe point of view delights us all.
Even me.


My children sliding through slush
Shrieking with pleasure
My delight turns to hassled irritation.

Short, sharp commands
Humourless.

And restless guilt
Annoyance with my churlish self
For the rest of the day.

This Morning

6.00am - Ed woke Martha and they started to talk VERY loudly in their room. But after major threats last night before bed following weeks of early rising, they stayed in their room and didn't thunder upstairs to see us every few minutes in tears after arguing - miraculous!

6.30am - Our alarm went off. The Today Programme filtering into the freezing bedroom (our heating timer has not yet been fitted on the new boiler). Hattie started chatting to herself in her room. Rog, needing to get to work early, hauled himself out of bed and went to put the heating on and make the kids' porridge while I had a reluctant shower. I'm sleeping so badly at the moment that I feel tired even in the shower.

8.00am - Rog long gone, kids dressed for school and Ed ready for his Monday morning IV treatment of Factor 8. Secretly, I've been feeling pretty stressed about this since yesterday evening. But, I manage despite not hitting the vein the first time.

8.30am - kids and I out the door to catch the bus to school as our backyard and lane still has too much snow to easily use the car. Bus takes ages, long walk down the slippery, slushy hill to school. Ed falls once (thank god I managed the treatment) and Martha twice. I manage to stay on my feet thanks to my lovely Hunter wellies. Can you guess how pleased I am with my wellies?

9.30am - Back home. Hattie very lively - damn, need her to sleep so I can do all the house stuff needed. Manage to put on the washing at least. Make my smoothie - need an energy boost.

10.30am - Sign up for the 2010 5KM Run for Life. Surely I can manage that by the summer? Decide that I'm going to get a pedometer and start walking seriously. I'm going to try to cut down on my carb eating in the evening too, to try to lose some pounds. Hmmm. I'm so exhausted by the evening that I can't imagine managing without my baked potato or rice - but we'll see.

10.45am - Hear on Woman's Hour a speaker from Macmillan Cancer Support, and a cancer survivor talking about the long-term effects of chemotherapy and radiotherapy, and realise that I have been suffering from some of these for the past year since I went into remission. The exhaustion, for one, has definitely been a factor to contend with, over and above that which comes with having three small kids. The radio programme was discussing the fact that when you finish your cancer treatment, you are really cast adrift back into your life with very little guidance or warning about how you might feel in the coming year or two. Consequently, I have been really pushing myself to get fit, lose weight and generally resume normal things long before my body is ready for that. Particularly after the very aggressive treatment I received. Of course going back to all the old stuff is what I want - but the frustration I've felt that I haven't been able to manage all the goals I've set myself has added to my stress and not helped my peace of mind. I only finished my radiotherapy this time last year - I now begin to see that I've been asking too much of myself for much of that time. The scan coming up on Thursday is obviously focusing my mind and my thoughts on all of this. If the results are ok (pray god they are) I think I need to treat myself more gently and try not to vilify myself because I'm not looking or feeling my best yet. That will come with time and care.

New Space

I spent this morning sorting out our spare room, in the attempt to turn it into an office.

Since we moved into our house four years ago, Rog has worked every night on the kitchen table, leaving books and files behind him in the morning as he sets off to work. And for four years it has driven me demented. It's not his fault - until we finished our loft conversion, we needed every inch of space to squeeze in the children we kept producing.

The spare room, which used to be Martha's room until November contained a shameful secret. Behind the soft toys, and general child accoutrements hid storage boxes containing piles of papers, letters and statements. For a time they had a colourful rug thrown jauntily over them in a futile attempt to disguise them. But they remained there glowing under their cover. We just did not have any room - every corner of our house has been bulging with stuff that needs to be sorted, discarded, recycled or stored properly.

When Martha moved out of her room to share with her brother, we were finishing decorating the other rooms. So this little room became the repository of all sorts of 'stuff' which temporarily or permanently needed to find another home.

Pah! Anyone with me here?

And while the rest of the house, due to mammoth sinus-y effort over Christmas was finally finished, this one room remained full to the brim of all that hadn't been rehoused.

But - no longer is it like this! This week while being snowed in - forced to suspend my normal life for something much slower, I've been working on that little room. This morning I spent two hours while the baby slept sorting through boxes, creating piles for recycling, shredding or keeping.

These boxes were mostly full of things from my single life, before I'd met Roger and before I'd had my kids. I spent the morning transported back to another life. I found photographs which I'd forgotten, in which I'm smiling unconcerned little knowing what the future held. And of course it held both good and bad. But I look at my skinny pre-child, pre-cancer self and the nostalgia at times is almost too much to bear. The past 10 years for me (my thirties) have been truly eventful - by far the most eventful decade of my life. And I kind of feel exhausted for myself.

This January 2010 I'm hoping firstly that I'm around for the next ten years - something which didn't cross the mind of my 30 year old self - and secondly that the next ten years are rather more peaceful.

And now that little room is tidy and sorted - waiting for its desk and Rog to move in with all his work clutter. And I can reclaim the kitchen table at last.

White-Out

I have blogging block! I think it's because of the snow - Roger and the kids are still at home: no-one can travel anywhere at the moment. It's like an extended Christmas holiday without the presents. They're all driving me mad. I didn't realise how much I'd secretly been waiting for everyone to get back to where they normally are on a Wednesday, so that I can organise my life the way I want it.

We're all milling about the house - ok, the kids can play in the garden and have snowball fights, which is quite fun - and ok I always complain that I don't see enough of Rog in the term-time, but...... in fact but what?? It's not the end of the world. It's just that strange sense of hovering in limbo, not doing all the usual stuff which takes some getting used to.

Crazy crazy snow. I can't remember snow like this since I was a child. The folded icing-sugar frozen waves hang, suspended in the crisp air, over the edges of roofs. Every now and again there's a strange cracking roar and snow avalanches off a roof finally sufficiently warmed by central heating inside. I find the noise scary and unsettling - suddenly I can begin to imagine why you'd want to avoid an avalanche on a mountain-side.

The forecast is for snow into next week. I'm already getting worried that I won't be able to get to my scan appointment next Thursday, but I think I'm being a bit dramatic as we do live in the middle - well sort of on the edge, actually - of the city. I'm sure I'll get there.

I need to break out of the snow-induced torpor. Eating a fabulous, luxury beautifully cooked fish-pie (although I do say so myself) hasn't helped on the torpor front. Excuse me anyhow, I have to go and put another log on the fire and make a cup of tea.

Snow

It's too snowy now - the novelty is wearing off. It's one thing when we can all mess around at home, making snowmen, walking to the park and playing with the woodburner but quite another when everyone has to go to work and school.

It's freezing - well below freezing - and the old cliche regarding the British inability to cope with wintry weather, is proving to be true. Our car is rubbish in the snow, is not 4-wheel drive, and slips if it even smells ice. And the kids' school is on a very steep hill. And I need to go into town tomorrow. GRRRR.

On a different note, my scan appointment came through. Next Thursday. And the results as soon as possible after that. Every time I think about it I feel weak with horror.

Quite a while ago I wrote a post about my son Ed's haemophilia and how I'm learning to give him his IV treatment at home. Last week was the first time I treated him completely on my own and it was a success. Today I was unable to bloody well find a vein and after poking around in the poor child's arm I had to give up. It's so frustrating - and he's so amazingly good. I'm going to have one more try tomorrow morning and then ring the haemophilia centre if I can't manage. It's so important to me to be able to do this smoothly and well. But, sometimes the nurses who've been doing it forever aren't able to do it either, so I'll have to be patient with myself.

Christmas seems a long way off already!

P.S.

Thanks Diney at Older Mums Are Fun for mentioning me on your blog and handing me the 'High Five Baton' - I'm hoping that my previous post fulfilled my responsibilities satisfactorily. I loved your post about your poor son's travelling hardships in order to be home for Christmas. Thanks so much again. It's good to know we're practically neighbours!

I'm passing this on to Rebecca at Letters to the World whose peaceful and readable blog is one of my favourites.

New Year

So, Happy New Year to all. I hope 2010 is good for you.

We had a lovely time - my cousin and her family were staying with us, and we spent New Year's Eve eating, drinking and watching Jools Holland. By the way, while we're on that point - does anyone know, can anyone categorically and definitively reassure me that Jools Holland's Hootenanny is LIVE!! A terrible rumour was spread in our house on New Year's Eve that it was pre-recorded. No!! Surely not!? Help me feel better about this.

On a more serious note I was going to write something about my New Year resolutions and all that stuff - but instead I think I might just consider the things about 2009 which were good despite the obvious pressures I continue to face, as well as thinking about what I want to achieve or hope to happen in 2010. It's all a bit obvious really and all a bit corny I suppose. But I do think lists can be cathartic and positive - depending on what you do with them of course. So here goes....

2009
1. My family - my kids and my Rog, and my mum, brother and sister and their lovely families
2. Managing to stay in remission
3. Hattie reaching her first birthday and me being there to celebrate it
4. Getting to my 40th birthday
5. The birth of my newest nephew
6. Our much planned and very exhausting camping holiday in France
7. Being around to help Martha through her first term at school
8. Starting this blog
9. Doing my memoir writing course
10. Finishing our lovely loft conversion
11. Getting our woodburner
12. Learning to give Ed his treatment myself
13. Unpacking those Christmas decorations for another year

And for 2010....

1. Continuing to stay in remission
2. To stop catching every bug going - watch that immune system strengthen again!
3. To write regularly - not to forget that book hovering in the back of my mind
4. To get fit and lose weight - to look fantastic for my 41st birthday in May
5. Lovely kittens and a puppy
6. St. Petersburg and Rajasthan - maybe...
7. Another nephew - or maybe my first niece this time, we'll wait and see
8. Summer-time holiday with the kids
9. Finding the perfect A Level teaching post in September
10. My mother meeting someone to share some fun with
11. My sister with another bun in the oven
12. Everyone I love and care for staying well and healthy - please!!
13. Unpacking those decorations for Christmas 2010, being about to celebrate two years in remission

Not too much then!!

I'm quite pleased that New Year's Eve is over - it's a scary time for me as I feel forced to think again about what's been and gone and what might be to come. I'm childishly sad that Christmas is over - as always so quickly, but it's kind of a relief to get back to normal days again. And every day is a step forwards towards a lighter future.