Please help

One of my club of cancer bitches, the beautiful Andrea, is campaigning for a change to the way benefits for cancer patients are calculated and paid.  I asked her to explain what the issue is. So in her own words, here it is:

After finding out that my children are not entitled to free school meals even though I am claiming ESA (Emplyment and Support Allowance), I was incensed to find out the reason why was because in my lifetime of working I have paid enough National Insurance. There are two types of ESA benefit; one is contributions based and the other income related. I qualify for the former so am entitled to much less. ‘But I don’t understand?’ I said to the lady on the phone ‘I’m claiming ESA because I am off work due to having cancer, what do you mean my children can’t have free school dinners?’ In a nutshell the ESA department doesn’t care why you are claiming, or for what reason, they just make their calculations on whether or not you have paid in enough National Insurance. Hmm but this doesn’t make sense: surely if I have paid in enough to the big pot, when I am ill and need help i.e free school dinners/child care/dentist/opticians/blue disabled parking badge etc….and all the other benefits that you would usually get how can I not qualify? It seems that that is the case. So enraged was I, and on the advice of one of my auntie’s oldest friends who is a bit of a campaigner herself,  I decided to start a petition. At first it was a knee jerk reaction – I was mad as hell and something had to be done. What could I do? I know: start a petition! But what will I do with that petition? At first I wasn’t sure! Now after four days and 3,008 signatures and more being added by the hour and a lot of advice from my darling breast cancer buddies (7 Bitches) and many other friends from the Younger Breast Cancer Network I know exactly what I need to do. After tweeting my local MP on Friday and him responding, I have now emailed him outlining why I am petitioning and how the benefits system regarding cancer patients needs to change and am hoping he will agree to meet with me and help to support me in my fight to get the government to create a standard benefit available to all cancer patients which is fair. I will try to get some kind of media coverage and do whatever I can do to have mine and all the millions of other cancer patients of this countries voices heard. Since starting the petition I have heard so many heartbreaking stories from families whose lives have been turned upside down by this dreadful disease but have also been left with no money, no way to buy food, pay the rent or mortgage, going into thousands of pounds worth of credit card debts and even losing their homes. This is morally so wrong, especially for many people that have worked hard all their lives and paid their taxes, to be told ‘Sorry, NO’ when trying to claim some kind of benefit whilst battling a life threatening illness, going through rounds of chemo and radiotherapy and endless hospital visits. How is a person with a cancer diagnosis meant to get through all this treatment and get better if they have the added worry and stress of where the next meal is coming from, or how they will even get to the hospital for treatment? Something needs to be done, somebody needs to listen, something needs to change. If you agree and would like to help then please sign the petition and help me make a change!

So here is the link to Andrea’s petition:

https://www.change.org/p/david-cameron-mp-change-the-laws-regarding-benefits-to-cancer-patients?recruiter=149971010&utm_source=share_petition&utm_medium=facebook&utm_campaign=share_page&utm_term=mob-xs-notification-custom_msg

Please help by signing. 

Hatched, matched and dispatched

Like many of my tribe, I’ve always been a teeny bit obsessed by the social and personal column in the newspaper. Whilst normal people call this the births, marriages and deaths section, in our family this has long been known as the “hatched, matched and dispatched”. 

It has been a measure of the years rolling by that my primary focus when browsing the HMDs has gradually shifted. As a tween, it was the bar and bat mitzvah pictures (particular the outfits and the hairstyles) in the Jewish Chronicle that attracted my attention. Gradually, as people’s grandparents began to pass away, I started to read the tributes in the dispatched columns. It was fascinating to piece together a life from the snippets in the notices. Old age and death felt so far away at that point. Almost before I knew it, it was the engagement announcements that became the most interesting – who did I know who was getting married and who were they marrying? And inevitably, as night follows day, it wasn’t long before friends were “sprogging up” and I became a critical reviewer of baby names in the births column. 

I now seem to be at a very odd stage in my life, in that all forms of announcement have the potential for personal resonance. There is still a trickle of friends finishing their families. There is the occasional wedding. And yes, there are deaths too – not just in old age. The past few days have been like a snapshot of my own personal HMD column. It’s been the circle of life, writ large. 

The news of Jojo’s death on Friday has prompted the most phenomenal outpouring of tributes and love. Jojo could have filled an entire newspaper with these messages, never mind a single column. So many people have been affected, so many people have expressed their love, respect and admiration for her. I have learnt so much about my mad ginger liver mets twin in reading these messages and have such tremendous respect for the amazing person that she was. Like many others, I find it very hard to come to terms with the notion that a young, vibrant, energetic woman can be there one minute and gone the next.  There must surely be many echoes of her somewhere in the cosmos. 

Jojo’s passing has left a gaping whole in my gang of cancer bitches. One seat at the table of seven is empty and can never be filled. But it is being kept warm. Just before Jojo died, Andrea found a tiny ginger kitten in her house. Our gang has called her Jojo Gingercat and she will forever remind us of her namesake.  A new life – not necessarily one for the HMDs but nonetheless to be celebrated.  Here she is:

  

There have been other new lives too. Friends have just had a little boy, reminding me of the birth of my own son, four and a half years ago. I will never have another child, a fact which I have still not completely come to terms with. In the pre Genghis days we hadn’t ruled out having a third. That possibility has been snatched away from me. I’m well aware that I am very fortunate to have two beautiful children – so many of my online community have been robbed of the chance of any kids by this horrid disease – but I resent the fact that my childbearing has been curtailed by illness rather than by choice.  It has meant the death of the chance of life, and that stinks. 

While that hope has died, another was rekindled at the weekend. A very dear and special friend married for the second time, to a very lovely and loving lady. Having both been unhappy for some time, their relationship offered them the chance of fulfilment once again. It was the first second wedding that I’ve been to and I wasn’t quite sure what to expect. I found just what I’d hoped for – an atmosphere of love, support, warmth, mutual respect and hope.  I couldn’t be happier for my friends and wish them all the happiness in the world.  Oh, and a very long time together before their story moves from the matched to the dispatched, of course. 

Births, marriages and deaths. The circle of life. Welcome, baby. Congratulations, friends. And rest in peace, Jojo. 

Jojo

My incredible friend Jojo died last night. 

Jojo and I were online friends but we’d also met in “real” life.  Like me, she was a regular feature of the online breast cancer world, through various groups. Like me, she discovered a second breast lump just by the site of her first, when she was finishing treatment. Like me, she soon discovered that her cancer had metastasised to her liver. Like me, she refused to accept the worst case prognosis and attacked her illness face on with a new treatment plan. Like me, she planned ahead to a day when the treatment might, just might, be over. 

But she still died. 

The world is a poorer place. Jojo was such a strong character. She was a party animal. She was artistic, funny, articulate, intelligent, bullish. She wrote a phenomenal blog (please read it – you’ll find it at http://www.themalignantginger.co.uk).She sang and wrote music and made art. She didn’t care. She was an individual. She was a personality. She was just 32 years old. 

Jojo, thank you for everything. Thank you for your support and friendship. Thank you for making me laugh. Thank you for sharing a small part of your life with me. Thank you for showing me how to keep going. Thank you for wearing that pink bracelet even though you hated pink. Thank you for your expressiveness. Thank you for appreciating the flowers I sent you last week. Thank you for being my liver mets twin. 

I wish we’d had more time as friends. I wish we’d had that next night out together. I wish I’d heard more of your music. I wish I’d made it to your not so surprise party last month. I wish we’d have talked about dying as well as living. I wish I could have done more. I wish you’d taken that money your friend raised for you and spent every penny – I don’t care on what. I wish your chemo had worked. I wish you were here to read this. 

The world is a poorer place. 

Party on, Jojo. Until we meet again, my friend xxx

Once Upon A Time

I have a small secret. I have a guilty pleasure. One that I think about lots, even dream about. I am a teeny bit obsessed. The object of my obsession? I blush to write it down. A U.S. TV show called Once Upon A Time. It’s available on Netflix and I am addicted to it. 

Elliot cannot understand my devotion. He rolls his eyes whenever he catches me watching it. He’s not entirely wrong. It’s not exactly highbrow. Here’s the premise: the show takes place in the fictional town of Storybrooke, Maine, whose residents are characters from various fairy tales transported to the “real world”. I’m into season 4 and so far we’ve seen characters from pretty much every traditional fairy tale plus a whole host of traditional stories and Disney tales too: Snow White, Sleeping Beauty (in her Disney personification as Aurora), Rumplestiltskin, Beauty and the Beast, Hansel & Gretel, Rapunzel, Peter Pan and Captain Cook, Robin Hood, various Alice in Wonderland characters, various Wizard of Oz characters, Ariel, Maleficent, Cruella de Vil, Anna and Elsa and so on and so on. It’s a traditional good versus evil story, with each series featuring a new principal baddie. 

I LOVE this show. From the description above you are probably wondering why  on earth I waste my time on what sounds like a total load of tripe. It’s not highbrow. The acting is variable. The storylines are ridiculous. The green-screening is a bit poor. The suspension of disbelief required to watch this thing is immense. 

There’s the obvious reason. It’s escapism, pure and simple. It’s a return to childhood. It isn’t intellectually challenging. It’s like a big piece of cake – not all that good for you but it makes you feel goooooood and it’s gooey and sugary and just great. There are handsome men (check out Prince Charming and Captain Hook) and beautiful women in lovely clothes. The goodies always win. No one has cancer. 

But there are two other reasons why I like this show so much, and both of them have resonance in my current battle. The first is that the show is a great showcase for strong women. The three main characters are Snow White, her adult daughter Emma and the ex-Evil Queen, Regina. They are the leaders, the characters who repeatedly save others, who figure out how to protect their loved ones, who stand for morality and goodness, who stand for love and strength. Emma’s nickname is The Saviour (I won’t spoil the story by explaining why) and although the Christian undertone is a bit much for me, I think it’s kick-ass that The Saviour is a woman. 

Various conversations yesterday reinforced the value to me of strong women. One brought home to me again how much I value my articulate, independent, strong, intelligent female friends, how much I look up to them, how happy it makes me to have these wonderful women in my life. Later, Tali asked me what the word reputation means. I explained and she then asked me what my reputation was. The first word that came to mind was strong. She asked why. Did I have big muscles? Elliot explained that I am being strong in fighting Genghis, because cancer is scary.  Again, she asked why. He reminded her of what a friend told her a few days ago (that some people can die from cancer). She got it. 

Strength is such an important quality for me. My own strength is a key part of who I am. I often joke that I have inherited my grandmother’s steel backbone. I don’t choose to be strong but nature and nurture have conspired to make me that way. It is written into my DNA. And thank Gd. It’s certainly coming in useful. But it’s also important to me to be able to share that strength to help others. And it’s equally important to find that strength in others. When I look at my closest friends, one thing they all share is strength of character. No one is a flip flop. 

The other main reason I love the show is that at its core is a marriage characterised by true love and partnership. In Series 1 we find out how Snow White fell in love with and married her Prince Charming. Their true love is key to saving the day on more than one occasion. The relationship is written as a marriage of equals and the characters work together as partners. It’s certainly not a case of the big man protecting the little woman. In a very simplistic way, it is a reflection of my marriage. I am blessed with a truly wonderful, happy, equal, supportive, nurturing, special relationship. Elliot and I are partners. We sustain and nourish each other. There is no “I ” in our marriage – just a “we”. It goes without saying that we contribute equally, in every way.  

I certainly don’t take any of this for granted. That said, I am often surprised by how relatively unusual our marriage is. Many people we know seem to exist in marriage as two individuals, sharing a home, kids and parts of their social lives. Often they have different interests, spend quite a lot of their week apart, and frequently one of the pair (often the man unfortunately) doesn’t pull their weight at home. Our marriage couldn’t be more different. My husband is the most amazing man, the most wonderful father, a brilliant cook and baker, a talented DIYer and gardener, with a great brain and a real interest in the world and in politics, an interesting conversationalist. He is the person I would always choose first to spend my time with. He is my oxygen. He is my life blood. And that’s before I consider how wonderfully, kindly, gently, lovingly, protectively, fiercely he is caring for me as I try to vanquish Genghis. We are truly partners in life. Its not a fairy tale – it’s real. 



The Rosie Project

Last year I read a novel called The Rosie Project. It’s a sweet story, about an autistic man looking for a girlfriend. The title stuck with me, for obvious reasons. Today I feel like it’s an apt way to describe my life at the moment. Life is no longer a series of events. It is one big project – fighting Genghis. 

While I was was on chemo, the project seemed entirely manageable. It was broken down into small chunks. All I had to do was get through the current cycle, then the next scan. But as of this morning I am officially on a chemo break. Despite a blood transfusion last week and a platelet transfusion on Tuesday, my platelet level is still very low and chemo was therefore a no-go today. We had a strategy meeting with my wonderful oncologist and agreed that now is the time to take a break from chemo and let my bone marrow recover. I am going to have the lump taken out of my breast and when the chemo is out of my system I am going to have SIRT on my liver. I’m also starting on tamoxifen to try to ensure that the liver lodgers don’t have the chance to grow while I am waiting for SIRT. 

Stopping chemo for the moment is clearly the right thing for my body but the news has not been great for my mental state. Instead of facing small chunks of treatment, I now feel like I am looking the illness as a whole straight in the face. On chemo, it felt like I was walking down a path with benches placed at regular intervals. My job was to get from bench to bench. Now I feel like that path has become a wide road. The benches have disappeared and the road stretches ahead, with no obvious end in sight. Not only that, but my crutch has been removed. Vile as it was, the chemo was working and that gave me comfort. I don’t know whether tamoxifen or SIRT will work. So I feel uncertain about the next stage of my journey – and very exposed. 

On the plus side, I do hope that the chemo break will put the Rosie back into the Rosie Project. I want to be me again, not this shell of a person with dark rings around her eyes, with little energy, with a dry mouth, who can’t drink a glass of wine or a hot cup of tea. I want to look in the mirror and recognise myself again. I want to be able to run around after the kids at the weekend. I want to be able to eat spicy food again. I want to have the strength to make dinner in the evenings – I did this last night for the first time in weeks and it felt so very good to produce a meal, to give Elliot a rest from it, to eat something that I had made, to wait on someone else rather than being waited on. 

Making the food made me realise once again that being a patient is quite a selfish state. You spend a long time not thinking about anyone else until you start to forget that you have to think about other people and when you then do think about other people, it’s quite a challenge. So as part of the Rosie Project, while I am on this chemo break, I’m challenging myself to stop being the patient unless it’s absolutely necessary. I’m putting on my big girl pants and pulling them up under my chin. We are all stations go on the Rosie Project.  Watch out Genghis!

Sadness and happiness

Yesterday was a tough day.

I awoke to the news that one of my online friends had passed away.  She was a beautiful and very special person, with an inspirational attitude (I don’t use the “i” word lightly).  She had made her peace with the fact that she was dying and had found ways to channel what energy remained into creating lasting memories for her children.  She had found serenity.  She wrote this to me, just four weeks ago:

“Think, everyone’s on a journey. Ours a rocky one but look at our legacy. Our blood running through their veins, our wisdom, our image. Their magical path to make & I’ve no doubt the adversity will make strong, wonderful souls who stand united. Everyone must leave, I teach my kids to be mindful of death so they grasp life & for you & me… Coping mechanisms are the key.. Let go of old you (easier said than done I know!) enjoy what u enjoy! Buy that dress, cake, champagne whatever makes you happy & when you feel the sadness, go with it.”

What wisdom.  And yesterday, I felt the sadness because the world had lost this truly special lady.

The day got worse when I learned that my platelet levels had reached an all-time low and I wasn’t able to have my chemo.  Instead I had platelet transfusion and I will see my oncologist tomorrow to discuss how we go forward from here, as the chemo is clearly battering me.

To top it all off, one of my very best cancer friends found out yesterday that chemo is still not keeping her liver lodgers under control.  She has been in horrid pain for some weeks and is now going in to a hospice for some pain management, in the hope of recovering enough to take part in a clinical trial.  She seems in reasonably good spirits, but the “h” word (hospice) panicked me and I am unable to get her out of my head.

So the sadness grew and grew.  It is hard to describe but it is definitely palpable.  It is like a wave – starting far out to sea, swelling and growing, crashing on the shore. It is like a piece of music, building, repeating, reaching a crescendo. It has a colour – a sort of grey, purple, smoke-like quality, suffocating and all-consuming. And with the sadness comes fear – fear for my friends, fear for my own future, fear for my kids and my husband and my parents of having to deal with life without me.  I know that my chemo is working at the moment, but the sadness quashes the hope and allows the fear to find a way back in.  The sadness renders me heavy-limbed; the fear pins me down.  It is hard to see beyond, to grasp the positivity.

Reading the last paragraph back, I am struck by how melodramatic it sounds.  Melodrama isn’t me and it is perhaps for this reason that it tends not to last all that long.   I awoke this morning feeling tentatively better.  Hope and positivity aren’t radiating this morning, but the sadness and fear aren’t either.  Today I feel that things are finely balanced.  Good news, a good experience, a happy thought will allow the light in, but bad news may bring back the grey purple fog. So I will take my friend’s advice and try to find something today that makes me happy.  Happiness is yellow and orange and warm and sweet.   Happiness takes away the fear.  People take happiness for granted but they shouldn’t, because it is so fragile, so fleeting, so easily defeated.  Happiness is like a delicate flower and needs to be nurtured.  Today I am going to water that flower.

Paying it forward

A few days ago I had a blood transfusion. This was the second one I’ve had since starting on my current chemo regime. My haemoglobin and platelet levels had both sunk very low, leaving me even more exhausted as well as breathless, and jeopardising my chances of having more chemo, at least until the levels had risen. As I sat in the Big White Chair receiving two units of the red stuff, I felt very grateful to the person or people who had donated it and very relieved that I used to be a blood donor. I had paid it forward and, as Fate would have it, was now receiving back. 

I had become a blood donor after one of my very closest friends from university was very ill with heart problems, around 13 years ago. She was born with a congenital heart defect and had had a number of surgeries throughout her life, before having a life threatening episode one sunny day in 2002. As she recovered, I looked for a way to make a small difference, to say thank you to the Man Upstairs, and becoming a blood donor seemed an obvious choice.  I never imagined that just a few years later I would be receiving, rather than giving. 

The idea of paying it forward seems quite important. I guess it’s a form of karma or “do as you would be done by”. In other words – if you want the world to treat you well, you need to treat the world well first. That makes it sound ultimately selfish, but then it’s been said that altruism is simply a form of egotism.  Please don’t get the wrong idea, though – I don’t want you to think I do nice things just to make sure I get nice things back! I guess I see it as part of being a family member or a friend, which is a reciprocal relationship so it’s not unreasonable to expect similar behaviour in return. 

I think there’s also a question as to how widely that good treatment should extend. I’m not for one instance advocating that we should be good to those we know and everyone else can go to hell. But I’m interested in the concept of the social contract – how much do we owe to society in general, and how much can we take from society? I suppose it’s the General Election which has prompted these thoughts. It is very easy to dismiss the Tories as being very much for the rich and the Labour Party for the working man/woman; and to extend this to say the former expect people to look after themselves whilst the latter expect the State to look after people. I think that’s a bit too simplistic. But I do worry that my vote must count – not just for me but for the rest of society. Just because I can pay for private healthcare doesn’t mean that I don’t care about the NHS; ditto education – if not for myself, for others.  The question then is – how far am I prepared to go for others? If I have to pay shed loads of tax for the care or education of others, am I willing to do this? And how will this influence my vote? 

It’s certainly not an easy question to answer. But I come back to this – be nice and you’ll be treated nicely. This week I received a very lovely letter from the mum of a university friend (hello Sue!). I was one of a large number of people who supported this friend during her own fight with cancer some 12 or so years ago. We were devastated when she finally succumbed. Now her mum is supporting me and I am so very grateful. I can’t imagine how hard it is for Sue to read some of this blog but she has done so and has been so kind in thinking of me. And another friend, who read in this blog of my upset at smashing my Super Mum mug, and who I have helped in the past to deal with a very traumatic event in their past, has helped me to deal with my own trauma by sending me a beautiful new Superwoman mug. I certainly didn’t support either of my friends with a view to getting that support reciprocated down the line. But I am so grateful now for that reciprocity. 

So here’s the lesson – pay it forward. It needn’t take time or money. And you may be very grateful down the line when you, in turn, need support. I am trying to live this philosophy, even in the smallest of ways. I try not to pass a charity box without making a small donation. If someone asks for my vote in some random competition, I try to vote for them. And as for the General Election – well, we shall see.