Heavy Stuff - little bit of doom and gloom (sorry)

Oh, I can't say how pleased I am to read comments and have a some new followers. It's a dispiriting idea to think of my blog floating around in cyber-space with no-one to care for it apart from me. Hooray!!

I'm in a spin today as I try to decide what I can do to help myself through this tough patch I'm experiencing. I can't escape from the numbing anxiety which overtakes me at times throughout every day and twines itself into my dreams at night. I guess one thing is that I don't know what would exactly happen if the cancer returns in terms of actions and any possible further treatment. I know that my prognosis wouldn't be good but I've shied away from a detailed discussion with my consultant because it's all so very very scary. Reaching that place called remission has been as far as I've wanted to travel along this road. I was told by another doctor that it would be 'grim' if it returned. However it has occurred to me that maybe I'd be less haunted if I knew more and assumed less. What does 'grim' exactly mean? Knowledge is power and all that!

Oh but I'd have to be brave to have that conversation - even though I assume the worst should I relapse, hearing the worst from my doctor would be awful. But maybe just maybe I might find some glimmer of comfort from being armed and prepared.

Phew!! Sorry to be so serious. I just didn't bargain for struggling with stuff like this at my age. But who would?? My son asked me today if I could live for another 55 years. I was about to say of course I couldn't but then I realised I COULD actually live another 55 years. I'd be 95 but what the hell? Roll on undignified old age, I'm ready for you - I just hope the kids come to visit me. At least being a threesome, they can share the burden!

Woman Around the House

Well, I came over all house-wifely today - a bit of a surprise for all concerned. I decided that I HAD to sort the piles of stuff which had accumulated around our house and which had become mountains of Everestian (!!) proportions as we wait for our loft conversion to be finished. So with the baby flapping around in the middle of the floor, swimming in paper I attacked it all with gusto. Gusto at the beginning which quickly became something less energetic and more bewildered. Recycling and shredding - blocked the shredder, filled the kitchen with bags of paper, magazines, envelopes and junk mail. And now I hope the recycling lorry is coming tomorrow or I need to spend the day carting it all somewhere noble and green!

Also - note to myself. STOP eating biscuits in the evening if I want to revisit svelte pre-cancer, pre-pregnancy body. Gym visits are all very well but I'm going to have to forgo a few pleasures I think for a little while. Diets don't really sit well with my philosophy of life however neither does allowing myself to look like a middle-aged mum when I'm only just 40. There's nothing like a bit of vanity to distract oneself from troubles and woes.

Hard Work

The kids have just been exhausting this weekend. I love them dearly which goes without saying, but oh my god would I like to have a bit of space at times. Being a parent is so unbelievably difficult at times I think. Ed wakes up at 6.15 every morning and despite threats, cajoling and even trying to appeal to his better nature (ha ha!) he continues to do so, just as he continues to appear in our room and his sister's as well. He wakes her up although having just started school she is exhausted and badly needs to sleep. The noise they both subsequently make, sends me into apoplectic levels of fury - not always dutifully suppressed as a good parent should - and always, always wakes the baby.

By the time it's 10am we've all been awake for what feels like an eternity. Of course that's what you sign up for when you make the curious decision to have three children in the space of 4 and a half years - but if I'd known it'd be this tiring I'd have had my family in my early 20s! Of course that's ridiculous as I didn't meet their dad till I was in my 30s but you know what I mean!!

So despite what more noble people say who have faced a life threatening illness, I do still sweat the small stuff. And what's more I feel guilty more than ever when I do although I can't really imagine how my responses on an everyday level to everyday stuff would or could be different. However I do strive in theory to be more zen-like though - think I might take up meditation, so watch this space.

And while I feel bad for yelling at the kids today, I'm living with so much worry everyday that it's quite overwhelming at times. It's not their fault of course but sometimes their clamour and chaos is exactly what I can't deal with as I wake up after yet another night of terrible, scary dreams in which the worst happens over and over again. I need peace and quiet to soothe my troubled mind and that's not really what kids do! That's why this whole situation continues to be a tragedy for our family long after I seem ok to everyone else. Live with me for a while and you see that I'm not really ok at all.

We did all go to Hadrian's Wall yesterday though. We had a lovely picnic and a fabulous walk and I can honestly say that I felt the legacy of my awful Friday lift while we were walking - mostly I suspect because I was too busy thinking about how completely shattered I was. Think I'd better keep on with those trips to the gym! Impressive hey?!

Moving On?

Spent the day today at a conference supposed to help me to live beyond my cancer diagnosis. For half the day I was irritated and the other half of the day I was in tears. Probably not the intended outcome of the day but there we go.

So we're planning a long walk in the Northumbrian hills tomorrow. Not visited the Tyne Valley? Fabulous countryside and astounding history literally at your fingertips as Hadrian's Wall winds it's way along the hills like the spine of an enormous animal. One of my favourite places on the planet. I reckon connecting with the wall and maybe with those long-ago homesick Roman soldiers - breathing in the pure air of the fells - will help me infinitely more than anyone in a stuffy conference hall could ever do. Enough already!

We need to get the dog we've been planning for when things pick up and I get broody again for the fourth child I can't have. Now's the right time. I'm not at my broodiest yet - I know it's going to get much worse than this but I think a dog is just what we need. This is a new time for me - I'm feeling well and we could all do with such a happy addition to the family. But what kind of dog? This is the source of many happy musings. She has a name already, and she's a she already but will she be a Boxer or a Border Terrier? Or a woolly mongrel we can love anyhow? Whoever she is I can't wait to pack her into the car with all the kids and take her to visit the Romans up on the beautiful moors. All these good things I think will help me to assimilate my experience and find a way back to some kind of inner peace.

Dreams

Well, today I woke up exhausted. I dreamt last night that the cancer had come back. In the early, early morning with the older kids cuddled into our bed one either side of me, I sleepily and accidentally spoke of my dream. And so began the conversation which, along with the dream, continues to haunt me all morning. My son asked me if last year I had been afraid I was going to die. I replied that I supposed I had been a bit. Major understatement there. I said that I'd been lucky that all the treatment I'd had worked. Yes, he said, but if it comes back again you won't be lucky again. I was amazed at how much he knew - although we've never kept stuff a secret we thought we'd been effectively opaque about the future. And amazed at how courageous he is to put into words such the cataclysmic fear we all feel. My daughter, 18 months younger, just wound her warm arm around me and said that she would keep me safe from the cancer. And you know what? I almost felt she could if I could just suspend time and stay in that moment.

And then we got up, had breakfast and went to school!! Watching the kids disappear through the classroom doors my heart felt heavy for what a burden my small children, only 4 and 5, carry inside themselves as their day unfolds. And today my heart feels heavy for myself too.

New School, New Pink Shoes

Of course alongside all the scary heavy stuff is the everyday stuff. Martha started school last week and is now hopping along beside Ed as I walk them into the school playground. The organisational skills it takes to have two kids at school took me a little by surprise. I find it a remarkable strain of intellect and memory to make sure that there are ironed uniforms, packed lunches and returned notes in book-bags on the right days. My thoughts as I'm in the supermarket, making sandwiches, cooking tea or ironing shirts swirl around in a strange soup. I worry about dying, I return to snapshots of the past year, I wonder when and if and how I could go back to work and I wonder how to make my way back to the ordinary and how to find a happy place there. All this in the car between home and school!! And of course there was a time not so long ago when I could not happily assume that I would see Martha's first day at school, let alone the baby's. This is quite a lot for one small brain to cope with really.

And the pink shoes? The baby finally seemed to be doing enough walking to warrant some sort of footwear. So I took her to the shoeshop to be presented with a ghastly array of gender afflicting styles and colours. The only two shoes in stock which would fit Hattie were a terrible boys' mock-trainer or shocking pink leather shoes. Others with not much more to recommend them could be ordered but I wanted them then. So I bought the pink ones! I sort of didn't have a choice but I'm still ashamed. I cannot stand the way little girls are pushed into the pink, sparkly thing. I've never done it with Martha who wears cool jeans, sweatshirts, pinafore dresses and stripy tights and - at the moment- isn't into pink. What are we telling our girls about what it means to be female? Nothing very interesting, empowering or creative that's for sure. But the baby now has bright pink shoes - at least she's too young to know that her mum has no sticking power in the pink shoes or not pink shoes debate which rages through our land!

My Calamity 2008-9

In April 2008 when I was 31 weeks pregnant with our third baby, I was diagnosed with a very aggressive and rare form of non-Hodgkins Lymphoma. By the time the tumour was found, it was the size of a large grapefruit and sitting next to my lungs and heart. Had I lived long enough to go into labour I would certainly have died as my heart and lungs could not have taken the strain. The baby would also have been in grave danger.

Up until the point I took myself into A and E one Monday tea-time, I’d kind of been carrying on as usual. Granted I was itching all over and had since Christmas, experienced appalling upper back pain. I’d visited osteopaths who proclaimed to be able to see ribs out of place, my midwife who said the itching was hormonal, my GP who listened to my chest when I explained that I was finding it hard to breathe and who said I was tired and should consider a couple of days off work (as an English teacher in a high school), and in desperation an acupuncturist who claimed to be able to sort out my pains. But nothing worked, and in the middle of making tea, taking kids to nursery, marking essays, going to Sainsburys, cleaning the house and being pregnant, I began to wonder if my pain would ever recede. I spent two weeks trying to sleep downstairs on the sofa, sitting up and leaning forward because it was agonising to lie down – even the pressure of a cushion or pillow on my upper back was excruciating. But still – I got up and went to work in the mornings exhausted and stressed because bizarrely it seems now it didn’t really occur to me that there could be something seriously wrong!

I guess the thing was, I had always been so healthy. I’d had three pregnancies from my mid-30s and sailed through the first two with no more than horrendous morning sickness to worry about. I suppose it was just inconceivable to consider that something serious might be happening to me. Actually just once I remember asking my husband, Roger, in the middle of the night if he thought I had cancer. And then I dismissed that thought. Rather unhelpfully, the health professionals whom I had visited also clearly thought it was inconceivable that something serious was amiss.

So, I got to the point one tea-time in late April, 30 weeks pregnant, as I was sorting the kids out when it occurred to me that I really was finding it hard to breathe and that I could feel a rustling, crunchy crackle somewhere in my lung. My back was agony as usual. I phoned Roger, asked him to come back from work because I thought I needed to go to A and E. I vividly remember being very calm, and sitting on the arm of our sofa waiting through the half an hour it took him to get home, trying not to worry the children as I took deep and careful breaths.

He dropped me outside the doors of the hospital with the kids in the back of the car and went home to put them to bed. Inside the A and E department I sat in a cubicle waiting for a doctor to see me. All around I could hear people with sore backs and sprained ankles being patched up and sent home. The doctor who finally appeared was lovely – she listened to my explanation of all that had happened and then listened carefully to my chest. She said she thought she could hear something and thought I should have a chest x-ray - even though I was pregnant. She said that at 30 weeks the baby was fully formed and they would protect it with sheets of lead. I had that x-ray and the nightmare began.

Of course they found something all right! They couldn’t diagnose it from the x-ray, so there followed a week of CT scans and biopsies. Initially they thought it could be lung cancer – I don’t smoke - but I would have to wait for the results of the biopsy. Roger and I were completely stunned – our world was crumbling about us. Thank goodness for my mum who took control at home and made sure the kids were fed and taken care of. I remember being obsessed with the fact that I had no life insurance – we had been about to sort it out, in fact the forms were on the table at home, but we hadn’t done it and now it was too late.

A week later on the Friday, 31 weeks pregnant, I was given the results. Because the type of non-Hodgkins I had was very rare and very aggressive, I would need several rounds of very aggressive in-patient chemotherapy – which would entail receiving chemotherapy on a drip for 36 hours at a time, night and day. I would need a harrowing stem cell transplant and radiotherapy. The treatment would take the best part of a year and the prognosis was uncertain due to the rarity of the cancer. And I had to have the baby on the Monday! It’s impossible to put into words the chaos our lives were thrown into. Arrangements were made for the caesarean, I was given steroid injections to strengthen the baby’s lungs and told to go home for the weekend. Somehow we had to prepare for her arrival, when we hadn’t expected her for another 10 weeks. I was still at work for goodness sake – I hadn’t even started my maternity leave! Of course she would go straight into Special Care we were told and would probably be there until her due date.

The caesarean went well – it was only later we discovered that the surgical team were worried that I might get into difficulties during the procedure, as my heart was under tremendous pressure. I had insisted on a spinal anaesthetic so I would be conscious and able to welcome my new daughter into the world. And funnily enough, despite all that had happened and all that was to happen, I remember the afternoon of her birth as a happy and peaceful time. Roger was sitting next to me, holding my hands – and when she was born and they lifted her over the screen for us to see, I felt as I should have felt, as mothers feel on seeing their newborns. We had been warned that she might not cry as she was so small and that we weren’t to worry, but she was crying loudly and indignantly. She was pronounced perfect, wrapped up and taken away to an incubator in the Special Care Unit.

My chemotherapy started a week after Hattie was born. I shaved my long hair off a couple of days before it started – in the photographs by the incubator with my four year old son Ed and two year old daughter Martha, I look like a sick convict. But I wanted to prepare the kids - and myself – for a mummy with no hair. Hattie went from strength to strength, thank goodness, I endured treatment too appalling to describe, and the family fell freefall into complete chaos. Hattie came out of hospital after my first round of chemotherapy and we found ourselves in the middle of the usual mayhem which a new baby brings – night feeds especially – with me so sick and tired and bald, I couldn’t move off the sofa. I cried for weeks out of sadness that I couldn’t breastfeed, desperation that I couldn’t mother my kids as I wanted and terrible terrible frustration. I refused to stay in bed, constantly trying to do the things I needed to do and failing so miserably through sheer exhaustion. Now and again I’d find the energy to curse and swear more horribly than I’ve ever done before – throwing things around and screaming at Roger or my mum. I felt so angry – still do in fact. Illness is ugly and undignified in my experience.

A year and a bit on – it’s September 2009 – and I have no real idea how we managed. I was bald and sick until January when I finished my radiotherapy and was pronounced in remission. Since then I’ve struggled with one illness after another as my immune system is still so weak – and I have quite extensive damage to my lungs from the radiotherapy. Also I have been literally plunged into early menopause, with all the associated symptoms in heightened glory, as my ovaries have been irrevocably damaged by the chemotherapy. But Hattie’s had her first birthday and I’ve just had my fortieth. I’m getting stronger and less tired, and some days manage to feel optimistic about the future. The doctors have said that if it returns they cannot treat it – so that would pretty much be it for me. That’s very very hard to live with. Daily I look at my kids and wonder if I’ll see them grow up. But… if I can achieve five years in remission than I have beaten it. If I see Hattie start school, I’ll have beaten it. All I can do is hope. And I look at Hattie now walking, babbling and doing what all 16 months old babies do, seemingly unscathed by her traumatic start, and I think it was a miracle that I kept her inside me for so long. Because, while it might have been better for me if they’d found the tumour earlier, it certainly wouldn’t have been better for Harriet. And one year on at least we’re both here. And that’s a start.

Have decided to write about my experiences - it's all such a muddle and a blur. I've got so much to sort out: from how I coped and cope now with the kids, to how I live my life with this threat to the whole family's well being hanging over us. I'm going to try to blend the story with a current window into my life - maybe then I'll be able to make some sense of it all.