Kate's Blog

Follow me if you will as I try to navigate through the ups and downs of my world.

I'm writing this blog to help me make sense of all that has happened - from my diagnosis with non-Hodgkins lymphoma while pregnant with my third child in May 2008
, through to my reflections on chaotic family life as I try to pick up the pieces of my life again.

The kids are so small, and I'm working hard to keep us all safe and to stay in remission.

Stay with me - it won't be all doom and gloom I promise!

Saturday, 19 September 2009

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.


TheChieftess said...

What a heart wrenching experience you've had. You are strong and brave to have endured and kicked that tumor into remission. I found your comment on the South Pasadena City Blog and wanted to check out your blog...think of this as a big hug from California, and well wishes for a healthy and happy life!!!

thomas.forsyth said...

Beautifully written. Lovely pace. You are amazing. x

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