29 Oct 2016

Our Mummy

Joanne Ruth Hudson
1961 - 2016

Mum died at home on Thursday. She hated it when we called her brave, but she was so brave. She bore her illness with a formidable will. She knew how she wanted her final weeks to play out, and she had the strength and courage to see that through. Mum was not afraid to die.
She kept her sense of humour throughout, from joking about catering her own wake, to giving us massive cheeky winks while barely conscious. She referred to her tumours as her 'woody lumps', and her innards as her evil doughnut. Nothing was beyond laughter.
It was an honour to be able to help care for her, to return some of the love and care she gave us.

I wanted to write about Mum's life, but I can't find the words. Words are not enough. Her life was not one marked out by events, but by a wellspring of love.
She is so beloved of so many. Her six older siblings, particularly her twin brother Nick. Her nineteen (I think) nieces and nephews, and their children and even grandchildren. All her friends. Mum loved to provide, whether it was love or food or a listening ear. She cared about everyone.
She married my dad in 1984, and they were best friends. A perfect fit. Dad has done absolutely everything in his power to look after Mum, for all her life and through to her death. He is a good man, a wonderful husband, a perfect dad. They have been a template for how a marriage should work, something to aspire to.

Mum and Dad, as you know, have raised a great brood of children. We are proud to be her children, proud to be made of the same strong stuff as her. Mum was mighty. I hope we can be half as mighty.

We have to find our way without her now, but together. She raised us to believe in love, and family, and togetherness, and forgiveness and we will honour that.

All your kind messages, your well wishes and your sympathy, all your love, has been gratefully accepted and passed on. Mum loved reading all the messages you sent. Thank you all so much. The sheer outpouring of love proves how special Mum was. I hope I've been able to convey a little bit of her wonder.

We love you Mummy

Mum loved Cromer, and she particularly loved the Cromer lifeboat. At Mum's request, there will be a collection for the RNLI at her funeral. If you would like to donate on her behalf, you can do so here.

18 Oct 2016


When I was working, we had patients dying all the time. They used to die in threes, or so it seemed, of all manner of causes, at all ages. We had a list of palliative care patients and they usually were on there because they had been issued with a DS1500. A DS1500 is a form that says you will die within a year or six months. It is a death sentence, created by the government to give you fast access to disability funds, and to pension payouts. I had known some of these patients for years. One had had a cancer in the 1980s as a youth, and been left with suppurating radiotherapy burns which still needed dressing three times a week after twenty years.I had seen that patient three times a week, because the appointments coincided with my shifts, for several years when the cancer came back and they were gone in weeks. The weird thing about working in a GP surgery is that you get to know these patients really well, until they are dying and then they drop off the radar. They become restricted to home visits and fasttracked phone requests for medication and dire oncology letters. The terminal rarely visit the GP surgery. In eight years, nobody died there. We had a birth. We had bloody emergencies in the waiting room. But nobody died. One person had a heart attack and died an hour later in A+E but I never saw anyone die in front of me. Death became everyday, something we all sympathised and empathised with, but the nearest I came to the reality of it was the grief stricken relatives in the weeks afterwards. It changed my perspective on what 'old' was, partly because I was but a youth myself, but partly because teenagers were cut down alongside the very elderly. The idea of death occurring in generational order vanished as I saw grieving spouses and parents, young grieving children, grieving grandparents. Grief doesn't give too much thought about how old the dead are, only about what is lost, be that potential or memories or both.
I became obsessed with death, surrounding myself with literature on pathology, interested in the myriad ways the body could fail, and from there, an interest in more generalised anatomy. But I never saw anyone die.

My first experience of dying predates this, of course. My friend Daisy Fuller. She died in 1995. She was ten years old. She was ten days younger than me. She had leukaemia and hers was the first funeral I ever went to. I was in the choir, and the church was packed and we sang. I don't remember what we sang. I don't remember seeing her coffin. I still visit her grave whenever I'm in the area.
Then my baby brother. He would be seventeen now. He was very teeny tiny. We had his coffin the house the night before the funeral, and it was the only time he ever came home. His name was Thomas. We don't forget him. He's buried just across from Daisy.
Then my grandparents. I was sixteen and they died within eight weeks of each other, both of cancer. Grandad went first, suddenly it seemed to me. Granny a little after after what felt like many months of illness, but was barely eight weeks.
There have been so many others since then, those I loved, those I barely knew, those who were kind to me, helping me gather chickens as a panicking teenager and those who gave me lifts to work. But I never saw them die.

It took two months to realise Mum would really die. Two months. I was terrified when she first got ill. One Sunday in June, I went straight to her house from a day out hoping that she wouldn't be as ill as she sounded. Alas, my mum lacks the clinical signs of infection and the only indication she wasn't right was a slightly raised pulse. I thought she would be OK with antibiotics. She got worse. I sent her back to the doctors because she was afraid to take herself. I told the doctors I thought she had a bowel obstruction. They missed the tumours. They sent her home with another pack of augmentin.
And then she went on holiday, and her bowel burst and poisoned her and I still don't know how she survived. My dad rang me and told me her bowel had burst and she was going to surgery and I had faith, faith in medicine, that she would survive and she would be OK and this was horrible but also the best thing because she would be OK. I told my siblings the same. This was unhappy but at the same time, survivable. She was in the best place, and it was unfortunate that the best place was miles away, but she was safe.
Later that night, Dad told me what the surgeon had told him, and I travelled to be with him while they told her. I still had hope. I still thought it would be OK. They can do so much for cancer these days. They can do so much. We went to see her in ICU, and she was so pleased to see us, and me and my dad sat with her while the surgeon told her what he had found. When he said they wouldn't have operated if they had known, I thought my last spark of hope died. I was wrong. Metastatic adenocarcinoma of unknown primary. Multiple metastases. Circulatory shock. She recovered at an astonishing rate, and was able to come back to Peterborough.
The surgeons in Peterborough were optimistic that they would get her fit for chemo, despite Mum saying over and over that she didn't want it. And then they couldn't give it anymore, and I think that was a small relief to Mum because she hates and fears hospitals. When she was first discharged, I felt so absolutely responsible, the way you do when you go home with your firstborn. Responsible for keeping her alive, for keeping her comfortable, for looking after her.
I don't feel like that now. I realised after a particularly bad weekend that, no matter what I did, I would not ever be able to save her. I already knew I couldn't, but knowing objectively that you can't, and accepting it are two totally different things. Mum's like the knight in Monty Python And The Holy Grail, armless and legless but still going. But the reality that I would have to watch her die was slow to come, and hit me with terrifying force. I lost my grip and I fell down a hole for three days, and then I came back up and I felt more at peace.

She's still here. She's STILL HERE. She is still alive, and she can sometimes talk though she sometimes can't, but she can give me a kiss and I can stroke her hair and moisturise her and she is still here. She is still Mummy for a little bit longer. I have stopped expecting her death with every silence, stopped panicking at every text, stopped thinking ahead, stopped trying to save her, stopped thinking it is my responsibility to save her and stopped feeling guilty for Not Doing the thousands of things that would have made no difference.

We don't know when she will die. We have never known when she will die. She has always been certain that she does not want to know. She does not want us to know. She has known too many people given six months who have had years and too many given years who have had weeks. She does not wish to labour under sentence of death. There's a strange feeling of being adrift because Mum no longer goes to hospital. Who is in charge? Does it really matter? She is in charge. She knows what she wants. She is mighty in the face of death. We love her so, so much. We just want to keep her.

She's still here.

14 Oct 2016

Two Child Rule

In the turmoil of Brexit, I had completely forgotten about the forthcoming changes to tax credits. From April 2017, only the first two children in a family will be supported by tax credits, and children born after April 2017 will not. I cannot find anything about what happens if you have more than two children and are already claiming tax credits for all of them. Perhaps the government haven't thought about that. Maybe I will have to choose a child to stop claiming for, a Sophie's Choice. Also, when my eldest ages out of payments, do I get to claim for the other two again? How is this going to work?

I mean, there are other rules that are frankly ridiculous like single parents now having to look for work when their youngest child turns three (from January 2017). It's ridiculous because you only get 15hrs free childcare per week and childcare costs literally cost all your wages - the reason I don't have a job at the moment is because I cannot get a job that would pay more than the FOUR HUNDRED AND FORTY POUNDS it would cost me for 40 hours childcare in an educational setting per week. There's a reason the old rules required parents to look for work after their youngest child was in primary school - the school-age children account for a mere £60 of that.

The pension age has also gone up, which means the scope for grandparents offering free childcare to the working is much reduced. And yet the government's broad family policy takes for granted that there is a reciprocity of care in family units. The idea that Mummy and Daddy have two children, Daddy goes to work, Mummy looks after the kids until they are a set age then finds a job for 'pin money', while Granny picks up the children for her and then, later, Mummy uses the first years of her retirement to look after Granny and Grandad and Granny and Grandad in law is still very much the typical scenario visualised. If informal care was taken out of the equation, the cost to social services would be astronomical.

Take, for example, my mum. Mum has been eligible for hospice care now since approximately 1st September (probably a little longer than that). Instead, my wonderful dad has taken a sabbatical from work and is looking after her himself. If we children were older and had less tiny children, we would be doing more to help. Inpatient hospice care costs £446 per day, on average. That's almost £20000 my parents have saved the government simply by coping. The hospice care provided at home costs approximately £20 a day, a very different price indeed.
When older people go to nursing homes, they now usually have to sell their homes to fund their care (approximately £2000 a month, depending on care home). Those who have never owned homes have their care entirely funded by the government. It is much cheaper for the government to rely on familial care, and people staying in their own homes: the population of older people in nursing homes is around 295000 out of a potential population of eleven million.

The tradition of intergenerational caring is as old as humanity, but is rapidly being outpaced by modern life. Since the 1970s, the average age of childbearing has increased as women pursue careers and, indeed, are expected to pursue careers. My mother had me at 23, which was about the average at the time. I had my eldest at 23, but I am a young mother among most of my peers. I cannot care for my dying mother because I am tied to very small children, a thing that would have been less of a concern if my mum had developed this illness in ten years time. My mother, still working until her bowel exploded, has never been able to offer free childcare because of her own career.

But back to my original point. I had forgotten about tax credit changes, but was reminded last night of it by this article in the Independent. Women who have their children as a result of rape will be exempt from the two-children rule. That is the right thing to do, but it very much frames the idea that poor people have children for benefits at the feet of...women. What of men? Take, for example, my middle son. Conceived within a marriage where both parents worked and barely qualified for tax credits (NEWSFLASH: the vast majority of families claiming tax credits are working), yet born into a single parent, workless family. It's not his fault that things changed so quickly. It's not my fault things changed so quickly. It certainly wasn't something I anticipated when I got pregnant with him, although he wasn't conceived in abuse. I don't know whether I should have aborted him, as to not to cost the taxpayer money. It is women who will continue to suffer the brunt of these cuts. The woman happily married with three children until her husband leaves, or dies, and suddenly only two of her children are acknowledged by the state as actually costing money to raise. The woman whose contraception fails her, but can't bear to have a termination. The woman who loses her job.

The proposal that women who have more than two children and claim tax credits ARE EVIL unless they are RAPED is so offensive to me. I don't understand why more people aren't talking about this.

10 Oct 2016

First, Smash Your Egg

Jon Snow has just written cancer on an egg, and smashed it with a cricket bat. This is how Channel 4 thinks you should stand up to cancer.

Smashing an egg doesn't reverse the mutations that lead to cancer.
Smashing an egg doesn't make cancer easier to spot.
Smashing an egg doesn't make money for cancer research.
Smashing an egg doesn't make people sign up for blood and bone marrow donation.
Smashing an egg doesn't do anything at all for Stage IV cancer.
(Stage IV cancer is "Sorry Mrs Hudson, there's nothing we can do" cancer.)
Smashing an egg is probably not going to make anyone frustrated with cancer feel better. It's a fucking egg. Smash up the china section of John Lewis after scrawling 'cancer' all over the plates, and you might feel a bit less frustrated*.
Smashing an egg doesn't do anything except get Jon Snow's face all over Twitter.
To quote, you know nothing Jon Snow.

Instead, take your egg. Boil it. When the water comes to the boil, put your toast in. When the toast pops, take your egg out, decapitate it, butter your toast thickly, sprinkle with salt and eat. That's a good and useful thing to do with an egg.

Perhaps I'm being sensitive. Mum's still dying. Who knew dying could be so difficult? What nobody tells you on these cancer adverts, on these smashed eggs, on these tits-out-for-cancer memes is that dying of cancer is hard.
My mum has lost around five stone, maybe more. My mum can't stay awake. My mum is in pain, despite strong opiates. My mum is chronically dehydrated. My mum can barely speak. My mum hurts.
My mum is so glad to be alive.
Three months ago, my mum was still at work.

Cancer is vicious. Cancer hurts. People you know are dying of it, and they maybe don't even know they have it. Cancer is terrifying. Cancer is not a smashed egg on the floor, looking for clicks and shares.

If you would like to do something genuinely useful for cancer, please consider:

Donating blood. Blood products are so useful in almost all cancer care.
Donating bone marrow. Some types of blood cancer can only be treated by bone marrow transplants. You won't be asked to donate unless you're a tissue match, so it's only spitting in a cup.
Donating to Macmillan in my mum's name. Macmillan nurses offer a lot of practical and emotional support, and also coordinate cancer care.
Donating to SecondHope who are researching treatment for Stage IV breast cancer
If you are in Lincolnshire, donating to St Barnabas Hospice who are helping Mum stay at home.
Donating to Cancer Research UK who have coordinated the Stand Up To Cancer campaign and for whom the initial egg was smashed in the first place.

Your money makes a difference. Cancer doesn't agree to give you a freebie cure in exchange for likes and shares.

* Please don't. Cancer doesn't get you out of criminal vandalism, alas.