I had my chemo today. It was hard going and I feel absolutely rubbish now, but having had it delayed for three days due to low platelet levels I was still very glad to have been given the go ahead.
The first day of each chemo cycle is a very long one. We start with blood tests around 9 am and finish any time between about 4.30 pm and 7 pm, depending on all sorts of factors. It’s a long time to spend in a windowless room, so usually I try to unhook my pump and take a wander into the corridor where I can sit down and see the sky. The nurses are amazing, coming out to give me the next infusion when they hear my pump beeping, popping out for a chat and even offering tea and biscuits.
This afternoon, as I sat in the corridor staring at the blue sky, I noticed the display of advice booklets standing by the door. My attention was drawn to this:
Now, I’ve been on the Macmillan website in the past, so I know these booklets exist. And being me, I’ve read the one on End of Life, on the basis that being prepared is half the battle. It isn’t easy reading – trust me. But today, through the chemo fog, it made me giggle. I sat there thinking – I wonder if, on the other side, there’s another booklet, the next in the series, a Guide to the Afterlife. I wonder if you turn up at the Pearly Gates and are handed a map and some instructions – what activities happen when, how to make the most of what’s on offer and so on. A bit like arriving at a nice hotel. That’d be great.
Don’t get me wrong. I don’t have any great belief in an afterlife. And, even if it does exist, I’m not at all sure it’s like a luxury hotel. But it made me smile. It made it all seem a little less scary. I’m still fighting and I’m still here. But if and when my day does come – in 5 years, or 15 or 50 – then rest assured. On arrival, I will be asking for an upgrade to a room with a view. And I will see you in the bar for Happy Hour cocktails.
Last November when I was going through treatment for my primary breast cancer I blogged about the top ten words or phrases that, as a breast cancer patient, I feared or loathed the most and wanted removed from the dictionary. In the last few weeks and months since my secondary diagnosis, I’ve revisited these. Many have changed, some remain. Here is my current list:
1. Prognosis. Once you’ve been told you have secondary breast cancer, you know what the ultimate prognosis is. There’s no getting away from it. The bastard disease will almost certainly get you in the end. Once you know this, it’s a matter of when, not if. And frankly, who wants to know that? The worst case prognosis for someone in my position is 6-9 months. The best case is unknown. You can’t live the rest of your life – however long that may be – fretting whether the end is coming this month, or next.
2. Scan. I’ve blogged before about scanxiety. I think the best way to deal with it might just be to remove the word “scan” from the dictionary. In my favourite TV show, The West Wing (also the subject of earlier posts), the President’s team develop a superstition about using the word “recession”, so they replace it in their conversations with “bagel”. So I vote we do the same with the word “scan” – let’s replace it with something anodyne. Why not “pencil”? Or “cardigan”? “I’m going for a cardigan today”. It has a ring to it.
3. Results. Worse than a “cardigan” is what comes after. The “cardigan” doesn’t actually change anything. But the results do. They change your mental state. They may change your course of treatment. They may change the prognosis. No one likes results day.
4. Progression. The worst sort of results. We secondaries girls are happy to be Stable Mabel. We are ecstatic if our mets have shrunk. What we dread is progression – the news that the mets have grown, or developed elsewhere. The news of progression of this awful disease takes your breath away. The very fragile state of mind that you have managed to maintain – just about – is shattered in an instant. The horrific reality of your own mortality leaps up and thwacks you between the eyes yet again.
5. Brain. I think it’s fair to say that brain mets are the mets that are the most feared. Not that anyone wants mets anywhere in their body. But the brain is the place that we hope will remain unaffected for as long as possible. For some of my sisters in arms, the brain is the first or only place the little cancer seedlings grow. For others, brain mets are a sign of progression. Treatments are possible but grim – whole brain radiotherapy, cyber knife and the like. Driving is no longer allowed, so independence is drastically reduced. For me, the possibility of brain mets is one of the scariest of all possible outcomes. This disease has taken my boobs, my hair, my energy. Please not my brain as well.
6. Hospice. Even writing the word makes me feel cold. As much as people can tell me that a hospice is a place where you can go for support, pain management and other positive help, to me a hospice is simply a place you go to die. Yes, people go for short periods and come out again. Yes, you can go just for the day. But the underlying rationale is to care for the dying. I don’t want to go near one.
7. Palliative care. In some people’s language, the treatment I’m getting now is nothing more than palliative care. My cancer can’t be cured, but I can be cared for while I try hard to put off the inevitable. I reject that wholeheartedly, no matter what anyone might say. Palliative care to me is about caring for the dying. I am not dying – I am living. And fighting bloody hard to stay that way.
8. Angel wings. The awful euphemism used when someone dies – “X has got her angel wings”. It is meant to be soothing, to be uplifting, to make it seem less bad. But it doesn’t. I’m as guilty as the rest of them for using these words, and I’m so sorry for doing so. There’s nothing soft and fluffy about dying from cancer. There’s nothing hopeful to be found in it. It’s dreadful and black and sad.
9. Normal. There’s no such thing any more.
10. Brave, inspirational, amazing. Last time I blogged on this subject these words were on my hit list – and they remain on the list. I am none of these things. I’m terrified, not brave. I don’t want to inspire anyone to live through this – I wouldn’t want anyone to have to. I am just dealing with the shitty hand that I have been dealt in the only way I know how.
I saw my counsellor today. It was extremely cathartic. And I realised that I find it easier to speak the truth to a stranger than to my loved ones, easier to type it into my blog than to say it face to face.
I’ve not been feeling great since my Big Chemo day last week. The physical exhaustion has created a form of emotional exhaustion. I’ve spent quite a bit of time over the last few days wondering why I’m putting myself through this treatment, whether it’s all worth it. Why am I doing this, when I may very well die from the disease in any event? Why invest so much in fighting to stay with my family, when the treatment means I don’t have the energy to be with my family? I think that most of this wondering has been done subconsciously as I’ve not been dwelling on it greatly in my conscious mind. But today it all came tumbling out.
I don’t think I realised quite how down I had been feeling until I started talking about it – and then the floodgates opened. I’m sure it is a result of feeling physically battered by the treatment rather than anything else. I spoke about how I have been feeling but how I don’t find it easy to share it because I need to be strong, I need to not let my loved ones be sad, I need to support them. And as usual, I was given a gift by my wonderful, wonderful counsellor. She told me to let others support me. She told me to look after them by letting them look after me. She told me that I don’t have to set myself such high standards the whole time. I am allowed to be sad and fed up and to let it show. I’m allowed to think it’s all rubbish – because it is. It’s ok to show my true feelings because it doesn’t matter if it makes people sad. I am a strong person but that doesn’t mean I have to be strong all of the time. If letting it out makes me feel better, helps me regain my positivity, then that is good.
So here is the truth. The truth is that I’m shattered, physically and mentally. The truth is that I’m tired of trying to be strong all the time. The truth is that my choices are between dying and living as a patient – not living as me. The truth is that this sucks. The truth is that whilst I love my family and friends and my job, I don’t love my life at the moment. The truth is that I feel strong and positive a lot of the time, but weak and sad some of the time. The truth is that fighting Genghis is the hardest thing I have ever done – and it’s certainly not a battle I would have chosen.
So please don’t tell me I’m brave or strong or inspirational or amazing. Because the truth is that those words make it harder for me to be truthful about how I’m feeling. They set a standard that I feel that I have to live up to. And the truth is, it’s hard enough to live at the moment without that standard. This is hard. This is horrid. That’s the truth.
A very religious man was once caught in rising floodwaters. He climbed onto the roof of his house and trusted Gd to rescue him. A neighbour came by in a canoe and said, “The waters will soon be above your house. Hop in and we’ll paddle to safety.”
“No thanks” replied the religious man. “I’ve prayed to Gd and I’m sure he will save me”
A short time later the police came by in a boat. “The waters will soon be above your house. Hop in and we’ll take you to safety.”
“No thanks” replied the religious man. “I’ve prayed to Gd and I’m sure he will save me”
A little time later a rescue services helicopter hovered overhead, let down a rope ladder and said. “The waters will soon be above your house. Climb the ladder and we’ll fly you to safety.”
“No thanks” replied the religious man. “I’ve prayed to Gd and I’m sure he will save me”
All this time the floodwaters continued to rise, until soon they reached above the roof and the religious man drowned. When he arrived at heaven he demanded an audience with Gd. Ushered into Gd’s throne room he said, “Lord, why am I here in heaven? I prayed for you to save me, I trusted you to save me from that flood.”
“Yes you did my child” replied the Lord. “And I sent you a canoe, a boat and a helicopter. But you never got in.”
I’ve heard this story on more than one occasion. The moral is clear – don’t ignore the signs. They may be indirect, but they are the assistance that is needed. That’s easy to say, but sometimes it is hard to spot the signs, hard to know what they are and what they mean. I do think, though, that one of the good things to come out of this battle with Genghis, is that I am getting better at this. Here are four signs that I have spotted in the last few days, that I have allowed myself to follow.
The first came in the form of a food supplement, pressed on me by a friend. I’m always sceptical about this sort of thing. It’s always suggested or given with the best of intentions, but I trust my oncologist when he says that if cancer were curable purely by diet, why would the NHS spend so much each year on treatments. This particular food supplement wasn’t suggested as a cure, but as an aid to dealing with some of the side effects. It sat in my kitchen for a few days. I Googled it – the reviews were very mixed. But then my bloods came back poor, and I desperately wanted chemo to go ahead. So I took the supplement – and my bloods were good enough to have the chemo. Sign number one – don’t always be such a sceptic.
The second sign was also food related. If I had a pound for each of the times I’ve heard that vegetable juice (and kale juice in particular) would help me, I’d be a rich lady. I’ve always railed against juicing as a cure for cancer. That’s not to say that it’s not healthy, though. Anyhow – last week, a friend at work introduced me to a new cafe that has opened around the corner. It is a healthy food/organic style place offering, amongst other things, fresh juices. Including kale juice. I’ve not yet tried it, but it’s there in front of me. I might just yet. Sign number two – don’t ignore what’s under your nose.
The third came in the form of more practical assistance. So far I have rejected any thoughts of claiming help from the government, although I am a candidate. I was unwilling to apply for a Blue Badge, because I don’t feel that I’m disabled. I was unwilling to claim PIP (Personal Independence Payment – a benefit payment for the seriously unwell) because I don’t have to rely on the money. I was also under the impression that PIP would only be available to me if my doctor filled out a form certifying I had a terminal illness. To do this seemed to me to be tempting fate and it was just a step too far. But one day I checked – and I don’t need to claim I’m terminal to get PIP. And suddenly, the whole idea of asking for some extra help no longer seemed so bad. One of the nurses had already offered to help me with the forms. So in the end I went ahead and did it – claimed PIP and asked for a Blue Badge too. Sign number three – don’t be pigheaded.
The fourth sign was very physical. Some years ago, my kids bought me a mug with “Super Mum” written on it in big letters. I’ve always used it at work, and with pride – it reminds me of my kids all day long and it reminds me that I should be proud of being a working mum. The other day, as I was getting ready to leave the office, I took it to the kitchen to wash it. Somehow, I dropped it, and it smashed. I was really quite upset and struggled to avoid the implication that I am no longer a Super Mum. The next day I had chemo and during one of the conversations with the nurse, I found out that I have been tolerating one of my chemo drugs for longer than any of their patients has done before. However, it’s pretty clear that my body is now starting to struggle a little with it. But that’s not the end of the world – there are alternatives, or they can reduce the dose, or the frequency. The fact that I have done so well, and that there are alternatives, made me feel really chipper. I felt like I have been Super Mum, but it doesn’t matter so much now if I can’t keep it up because there are other ways to go. Super Mum can reinvent herself. Sign number four – as Maria said in The Sound of Music, every time the Lord closes a door, somewhere He opens a window.
Wow! This blog has been shortlisted for an award!! It’s the BritMums Brilliance in Blogging award and it’s in the Inspire category.
Now you know how I feel about the word “inspirational”. Nonetheless it’d be kind of great to win it. So if you like what I write, please vote here: https://www.surveymonkey.com/r/bibs2015
Here are some reasons I’d like to win:
1. To raise awareness of secondary breast cancer and thus promote investment in research.
2. To encourage more young women to check their breasts. Breast cancer is NOT an old person’s disease.
3. To help others in a similar position realise they aren’t alone.
4. To highlight how precious life is.
5. To give my kids something to make the proud of me and to help them realise that some good can come from this horrid situation.
6. To allow me to thank more publicly those who are so important to me and those helping me on this fight.
7. To give me extra fuel for my fight.
So please, take the time to click through and vote. Thank you.
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.
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.
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!
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.
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