Cancerversary - it's been 1 year

First thing in the morning on Friday 18th July 2014 I went to the hospital for an ultrasound scan. I thought I'd be back in work by about 11am. Instead, after texting Glen as he was in a meeting at work to tell him where I was and what had happened (I hadn't told anyone I was going for a scan) I found myself emailing my line manager and one of my friends in the office to tell them I wasn't coming in, and why.

A few hours later my friends started getting text messages that read as follows:

I went to the hospital today having
been referred by my GP for an
ultrasound scan. My left nipple was
going in a bit. I had an ultrasound,
mammogram, and 4 biopsies. I won't
be told this definitely til I meet the
surgeon oncologist next Thursday but
it seems I have breast cancer which
has spread to my lymph nodes.
They're 99% sure they just need the
pathology report for confirmation. I
don't know what to say really I just
wanted to tell people myself.

This doesn't feel like a year ago. It feels like a lifetime ago.

There's actually only two things I really want to say.

1. I'm alive. Phew.

2. Thank you to everyone who has been in my life this past year. It was you that got me through it. Thank you, from the bottom of my heart. XO

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

(Couldn't resist ending on the drain worm.) 

Ps...

PPS 

Today: 

Surgery #2 - Day 1

Piece of piss

I rocked up at the hospital at 7am on Monday last week, and checked in to Ward 23a. This ward is closed on weekends, except for clinic on Saturday mornings, so every Monday morning is a fresh new start with a brand new batch of patients. (If I worked on this ward, that would please me very much.) I was shown to my bed, my home for the next few days, which was in the middle of the section of the ward in front of the nurses station. It had 6 beds - 3 along one wall and 3 along another. I spent 5 days on this ward in January so I felt right at home, and set about unpacking my bag, laying my things out - basically playing house in my little bay.

The surgeons, registrars and anaesthetists started to arrive and do their rounds. The first one I spotted was Dr Death - the Anaesthetist of Doom, my nemesis. I took a deep breath. I practised my lines in my head. "Aint no talk about morbidity gonna scare me this time, pal. I am a bad ass, hard as nails, fearless cancer surviving warrior. So take your scaremongering about the risk of death from general anaesthetic elsewhere, mister!" But Dr Death actually came nowhere near me. Instead I got a lovely anaesthetist who had no apparent obsession with morbidity. "You've had anaesthetic before. A long operation in January. No problems. Good! When did you last eat and drink? Do you get acid reflux? Any questions? No - great. See you later!" I don't remember his real name so his new nickname is Dr Cool, Anaesthetist of No Fear.

Once I'd been visited by the nurse to do my observations, the registrar to go through the consent and other forms, and my surgeon to draw all over me with a marker pen, I sat back in my chair and did some people watching.

I was genuinely not in the slightest bit anxious. But I was clearly the only calm one. The girl next to me ended up crying her eyes out behind her curtains. The woman opposite was nervously babbling away to anyone who walked by, telling them her life story. And the old woman in the corner was clenching her fists, snapping at her husband on the phone, and complaining about the crying girl every time a nurse came over. The crying girl could hear this, and it made her cry even more. I knew I was last on my surgeon's list for the day, which meant maybe 7 hours of waiting (with NIL by mouth!) so I got my gown on, climbed in to bed, and easily went to sleep. As I'd told my friends: this surgery was going to be a piece of piss.


A glass of wine on the beach

I think it was around 3pm when I was woken up and told it was time to go down to theatre. In the little room where you are given the general anaesthetic there was a bit of debate about where to shove the cannula in. It couldn't go in my right arm because that was the surgery side. I thought it couldn't go in my left arm because I've previously had lymph node clearance and there's a risk of lymphedema (aka Fat Swollen Arm or Hand For The Rest Of Your Life). But the anaesthetist didn't want to put it in my leg because of the risk of a DVT. My surgeon came in and had the deciding vote - left arm. He was confident it wouldn't lead to lymphedema. So in went the cannula and MY VEIN DID NOT COLLAPSE! Big up to my body for recovering so well from chemo over the last 6 months. That arm didn't even have locatable veins in January, let alone ones that would withstand a cannula. I lay back and did Dr Cool's counting down game. Imagine you're on a beach with a large glass of white wine, and count down ten things that are great about where you are. I managed to count down from ten to four, and then wondered aloud why I was not yet asleep, and that's the last thing I remember.


The final violation in the Recovery Room

First of all, for context, I just want to recap my recovery room experience after surgery in January. That was an 8 hour surgery where my surgeon removed all my breast tissue including nipple and areola, removed all of my lymph nodes, took muscle from my back, moved it round to the front, and along with an expander implant, used it to create a fake boob, then replaced the skin lost with a skin graft from my back, attaching that to blood vessels and stuff under my arm.  In January when I came round in the recovery room I felt fine. It was a bit sore, but I honestly felt fine. The nurses, and my surgeon, kept telling me to press the morphine button. "Don't try and be brave about pain." I wasn't. I just didn't need it.

This one was 3 hours surgery, tissue removed, expander implant put in, stitched back up. No node removal, no messing with my back, no skin grafts etc. Simple! Easy! It's why I was so calm and had been telling my friends it would be a piece of piss.

I was wrong.

This time, as I came round, the first thing I realised was how much horrendous pain I was in. Oh. My. God. I think I might have screamed. I know my body was writhing around all over the place, legs thrashing about. It hurt more than anything has ever hurt me before in my life. And then some. Now when I'm in hospital and asked how painful something is on a scale on 1-10 - that is my reference point for 10. It was excruciating. They gave me morphine, and more morphine. They gave me codeine, and tramadol. And more morphine. And despite the fact that this was the one part of my body which had remained unviolated throughout cancer treatment, I didn't hesitate for a second when they offered to shove some diclofenac up my arse.


The nurse that didn't belong on Ward 23a

The cocktail of painkillers started working and the pain subsided a lot, and after a while I was taken back to the Ward. The nurse who had been with me in recovery and who wheeled me back to my bay was so lovely and kind. Another one of those guardian angel nurses. She said goodbye and a nurse on the ward who I'd never seen before started doing my observations. Blood pressure, temperature, oxygen levels. She said she needed to find my paperwork and left. And then she didn't come back.

After I while I started to stress. Where had she gone? Where were the other nurses? I couldn't reach anything. I couldn't sit up. I heard that nurse's voice at the nurses station. Some of my friends were calling in to ask if I was back yet. I heard her tell them yes, and that she would pass the messages on (she never did). I realised the other nurses must be away doing the switching over from day shift to night shift. I tried to reach my phone but I couldn't. I looked for my buzzer. I didn't have one. I looked for the bed controls. They were out of my reach. I looked at my table - that too was out of reach, and there wasn't even any water on it anyway. I started to cry. I was weak, in pain, and stranded in the bed, unable to move or reach anything. The other patients around me were all fast asleep. The crying turned to sobbing, and the stupid nurse finally noticed and came to ask me what was wrong. I asked for her to pass me my phone which she did, and if I could have some water. She  said yes but again, didn't come back. I sent a few text messages to friends telling them I was alive but what was going on, and then couldn't help but start crying again. I assumed she must be one of the night nurses and that this was the way things were going to be. I cried myself to sleep!

I was woken up (probably very soon after) by a different nurse who needed to do my observations again. She asked me if I would like a cup of tea. Yes! I said, "I think I'm meant to have a buzzer". She showed me the buzzer that she'd put next to me. I looked around and realised she had made everything right. The bed sides were down, the buzzer and bed controller were next to my hand, the table was moved closer and a glass and jug of water within reach. She brought me tea, and was kind to me, and was lovely, and I fell back to sleep feeling safe and ok again. I never saw the horrible nurse again. Apparently when one of my friends called she had said she was a bank nurse so I assume she was just covering the time the others were switching shifts.


Toilet trauma

Each time she woke me to do observations, the lovely nurse offered me a cup of tea. Never say no to an offer of a cup of tea! So in the middle of the night, I needed a wee. I had no catheter this time round, dammit! I pressed my buzzer and the other lovely night nurse came over. Would I like her to bring me a bed pan? NO! As if having a diclofenac shoved up my bum wasn't enough embarrassment for one day! I said I wanted to try and walk to the toilet (the sooner you are up and moving after surgery the better, especially for reducing risk of blood clots). So she helped me to sit up, got bags for my drains, helped me get my slippers on, and helped me to stand up. I stood for a moment on the spot, then told her nope, not ready, I need to lie down again.

Ten minutes later I tried again and she walked me to the toilet, and told me to pull the orange cord when I was done so she could help me walk bad to bed. I sat for about 5 minutes, unable to wee, then started to go dizzy again. I pulled the orange cord, started to flop, and the nurse managed to get me sat on a commode, holding me up, while I dry heaved and retched in to a bowl. I was passing out but somehow she wheeled me back and got me into bed, where I fell asleep, still needing a wee, wondering what the fuck Dr Cool had spiked that anaesthetic with.

After another sleep I tried again, made it to and from the toilet without fainting but still couldn't actually pee! Stupid, messed up, lazy, shy bladder!


Tuesday

Finally, daylight arrived. It was Tuesday, and I was woken up by Helen, Chief Guardian Angel Nurse of Ward 23a from January, with the trolley of painkillers, and another of my favourite nurses Sian, Supplier of Snacks and Drinks, with a cup of tea.

And all was well again  in Bay 12 of Ward 23a!

Chop chop!

I was sat at my desk at work this morning, minding my own business, ploughing through my to do list, when I saw that I'd missed a number of phone calls on my personal phone. There were two voicemail messages from my surgeon's PA asking me to call her back right away, which I did.

PA: "You're booked in for surgery on 23rd September but an earlier space has become available."

(The surgery I was booked in for in September was the preventive mastectomy and reconstruction on the side that hasn't yet had cancer.)

PA: "Because of your gene fault, Mr Krupa wanted to offer you the space, so that you can have your surgery done as soon as possible."

Me: "Ok!"

PA: "It's next Monday."

Me: Stunned silence.


So, yes, I'm now having my next surgery a week today! I've spoken to my surgeon on the phone to go over what will happen, cleared it with my line manager, started making arrangements with friends who can help with dog walking, a bit of cooking and cleaning etc.  I've cancelled Wednesday's work meetings as I'll be in hospital for pre-op assessments. I've rearranged my hair cut from next Wednesday to this Saturday. I've given my apologies to my Genetics Consultant as I'll no longer be able to talk at his Genomics event next week. I've started writing lists of what I need to do and buy before Monday....

Argh! Shit the bed!

I'M HAVING SURGERY NEXT MONDAY!

Anyway, I'm a bit in shock, I've got a blinding headache now, and a bunch of stuff whirling round my head. But I'm actually really pleased and excited.* I've just got a lot to do over the next week.

It's much less "bad" than the last surgery I had. I'll only be in hospital for 1-2 nights, and off work for around 4 weeks. (Hopefully doing some working from home sooner than that though). So if any of my friends want to stop by and visit me then please text or call me and let me know. I'll book you in!

AAAAAAAARRRRGGGGGGHHHHHHH!!!

*Having thought about it.... I am mostly pleased and excited. I have just realised that this means my veins are about to be attacked with more needles and cannulas. Feck. The things that I have loved the most about not being a cancer patient are not having anyone stab me and not having my veins explode on a regular basis.

Note to self: If they're going to stick a cannula in you, Sarah, at least make it worthwhile and press the morphine button as many times as you can this time.

Rosie

Rosie is the third friend that I have lost to breast cancer since my own diagnosis last July.

In January, Claire died. She had just turned 30. Her cancer spread to her spinal fluid and brain before she had even finished primary breast cancer treatment. I wrote a little about Claire here. I'd only known her a short time, but she was so brilliant - feisty, stubborn, sweet, compassionate - she left her mark on me.

Last month, Jojo died. She had just turned 32. Her cancer spread to her liver before she had even finished primary breast cancer treatment. I wrote about Jojo here. I clicked with her instantly - inappropriate jokes, silliness, irreverence, curiosity, fascination with the weird - she was the perfect antidote to chemo. We became very close friends, and I'm missing her every day.

And then earlier this week, Rosie died. She was 38. Her cancer also spread to her liver before she had even finished primary breast cancer treatment. Rosie, like Jojo, had become a very close friend - to be honest, I'd started to think of her as a big sister.

I wrote about Claire and Jojo on this blog because I wanted to tell the whole world how brilliant I thought they were. They were important, they made a difference - everyone should know it. So I did, of course, want to do the same for Rosie. She was a phenomenal woman - clever, analytical, thoughtful, thought provoking, warm, caring, strong, determined. She was an all-round over achiever, she excelled, she set the bar - a double First from Oxford, partner in a law firm - a lot to be proud about, a lot that other people would be arrogant about. But Rosie never showed a single shred of arrogance. She didn't care about people's qualifications, or career achievements, or backgrounds. She judged people by who they were, what was in their heart. She listened, she empathised, she was fair. She was an incredibly supportive member of the Younger Breast Cancer Network. She was a brilliant friend.

She was also a mother.

Rosie has two children, Tali and Joey, aged 7 and 4. These are the two people that mattered the most to Rosie in the whole, wide world. The thought of not being there for them as they grew up broke her heart. When we saw Elliot, Rosie's husband, on Wednesday, and he told us she had left him clear, written instructions for all aspects of life through to when both children were grown up and married, it didn't surprise me in the least! So I've thought about it and I'm not going to write a post here telling the world how brilliant and clever and kind Rosie was - there are plenty of people writing tributes like this already. What I want to do is write for Tali and Joey. I want to share a few little stories about Rosie, some of them things that they would probably never know about otherwise. I know Elliot will share these with them when the time is right. (Some maybe sooner than others!)


**********************

A few Rosie stories for Tali and Joey

Rosie was in a gang!
Rosie was in a gang called The Seven Bitches. We met online through the Younger Breast Cancer Network. The gang consisted of myself, Rosie, Jojo, Andrea, Cinzia, Aimee and Rebecca. We became friends because we were all going through treatment for breast cancer at the same time, and we spent a lot of that time on the YBCN forum, asking questions, sharing experiences, supporting each other on difficult days. Over time, we became friends. We met up, we talked on the phone. We had our own little thread on Facebook messenger which was active every single day. We didn't just talk about cancer any more. We talked about everything!

Cinzia found this picture of 7 superwomen. We decided it was us. Rosie was Wonder Woman! We decided to be a gang with a name and the best we could come up with was The Seven Bitches - the name just stuck! I'm pretty sure Rosie never expected to be in a gang called The Seven Bitches but she seemed genuinely delighted. When we met up in February in London she brought us all little gang bracelets to wear! She told us it was the first time she'd ever been in a gang! My bracelet is pale blue, and I love it. It reminds me of her.

 

Fuschia though. Not nimby pimby pink

Rosie had picked a bracelet with pink on it for Jojo just to tease her - Jojo hated the colour pink! But it was Rosie's favourite, and she was determined to get Jojo to wear a little bit of pink - and she was successful! Jojo wore it all day, and in fact days later I remember her telling us she was still wearing it.

 

 

The Seven Bitches Bangle
When it was my birthday in March, the other 6 clubbed together and bought me a silver bangle with a little tag on it. On one side it said Seven Bitches Forever, on the other side it said YOLO. (That stands for, You Only Live Once.)

It was perfect! When it was Jojo's birthday in April, the rest of us clubbed together and got her some silver earrings - they too were engraved with 7 bitches and YOLO. Rosie was the one who picked them out and ordered them. Jojo loved them. Sadly she died not long after - like Rosie, she was very ill because her cancer had spread to her liver. But she had worn those earrings the whole time she was in the hospice - right up until she died.  
I wanted us all to have a special piece of jewellery, so I bought Rosie, Andrea, Cinzia, Rebecca and Aimee a bangle to match mine. We gave Rosie hers when she was in hospital, 1 week before she died. I had opened the box to show it to her and was going to put it on the side, but she ordered me to hand it over so she could wear it! So there she was in hospital with her Seven Bitches silver bangle alongside her hospital wristband! Elliot is keeping the bangle safe for now, and Tali, we would love for you to have it when you're a little older.

The big YBCN meet up in London
Myself, Andrea, Cinzia and Rosie met for the first time back in November 2014. Rosie had organised a big meet up of lots and lots of members of YBCN in London. We went for lunch at a place called Tibits, then we went for afternoon tea and cake, and then people went to the pub. It was a brilliant day and all organised by Rosie!  She had even created name badges for everyone! In the afternoon, myself, Rosie, Andrea and Cinzia sat together. It was hot in the room, so the three of them whipped off their wigs and headscarves together. The tea room staff looked shocked! Other members of YBCN cheered, and then did the same. Rosie had organised a day where a big group of women who had never met before felt comfortable and at ease. It was very special. And I was so happy to be sat with Rosie, Andrea and Cinzia. Thanks to the effort Rosie made, a big group of women had a wonderful day, people got to meet in real life others they had been talking to online, and many new friendships were formed.
 

Rosie, Cinzia, Andrea, Sarah (me)

 

Rosie with Cinzia

 

Everyone from YBCN who went to Tibits

Christmas
Towards the end of last year, Rosie realised that I might be going to spend Christmas alone. I don't have much family. My mom had died a couple of years ago from breast cancer too. Me and Rosie had only been friends for a few months, we'd only met at that point in person once, but realising I might be on my own at Christmas, Rosie invited me to go and stay at your house with your family over the Christmas break. I can't tell you how much this kind and wonderful offer meant to me. It made me cry! This is just one example, but one that will stay with me forever, of how kind and compassionate Rosie was. She was so caring towards other people.

Surgery presents
Another example is the bag of gifts Rosie bought me just before I had my operation in January. I had gone to visit Rosie in London - I went for lunch and the afternoon at your house, and did meet Tali briefly although I'm not sure if you'll remember it! I wanted to see Rosie to give her a big hug because she was having to go through horrible chemo again. But when I turned up, despite everything she was dealing with, she had made the time to put together a bag of presents for me for my stay in hospital! There was a book to read, some crossword puzzles and a (pink!) pen, some chocolates and sweets, hand cream... all the things you need when stuck in a hospital bed! It was so thoughtful. I loved that the hand cream was called "Roses et raines" (L'Occitane).

My friend Rosie, the Competition Lawyer
I have been involved in some campaigning against the potential sell off of NHS cancer care to private companies. I've been banging on about it to everyone for some time. Rosie has been so supportive of me, but questioned some of what I said. I sent her the briefing that had informed me. She took the time, with her Competition Lawyer hat on, to go through the information and send me comments. (Many along the lines of "Rubbish! There is no basis for this assertion." and "This is just plain wrong. This would be a breach of competition law." !!) There are two reasons why I love Rosie for this. First of all, that as my friend, she took the time when she was so poorly to go through the briefing and send me notes, because it is an issue that is important to me. Secondly - I love her insistence on seeking the truth and dealing with facts. She was objective, and honest, and thorough.

The white feather
There's a bit of background to this.

It was my mom that first told me about white feathers, a few days before my granddad died. He was in a hospice, and in the days before his death, as his body was shutting down and he was out of it on morphine, he was talking to his own parents. My mom found a white feather on the floor, next to his bed. She said white feathers are messages from loved ones who have died. She was certain it was a message from his loved ones, that they were waiting for him, and that all would be ok. It gave her a lot of comfort, and I humoured her.

After he died, she found another white feather in the house. She thought it was a message from him. Again, I knew what it meant to her, and I humoured her.

Then when my mom died herself, I found a white feather in her hospital room by her bed, and one in my old bedroom at her house. I'm personally not religious and I'm not spiritual - I put it down to coincidence. I thought, white feathers are probably littering all our houses and hospitals all the time and we just don't notice them.

Then when our friend Jojo died, myself, Aimee and Rebecca stayed in Brighton so we could go to her funeral. The night before, we were all trying on big geisha wigs - we were going to wear them to the funeral in honour of Jojo - she loved them. As we were trying them on, Aimee stopped and saw a white feather on the bedroom floor. She was stunned. So was I. And when we explained the significance to Rebecca, so was she. We cried!

Again, though, me being cynical me, I went away and told myself it was ultimately probably a coincidence. It must have been caught on one of our clothes and fallen off on to the floor or something. I didn't know. I loved the thought of it being a little message from Jojo but... I don't believe in that stuff!

Anyway.... the day after Rosie died, we went to your house to visit Elliot. There was myself, Aimee, Rebecca, Cinzia, Andrea, and two of Rosie's other YBCN friends, Anat and Simone. After we saw Elliot we went to a pub together, to eat, and to make a toast to Rosie. We'd been sat outside the front at first but then moved to the back beer garden. I was a little bit behind the others and as I came outside they were in the process of switching tables. They'd all gone to sit towards the back then decided to move to another table closer to the building. As everyone was sitting down I saw it. A lone white feather, on the hedge next to the table they'd decided to move to. I froze. "Oh my life guys. You won't believe this." I pointed to it. I remember Aimee, Anat and Rebecca's eyes opening wide. Andrea was laughing and picked the feather up. "We're outdoors! There's feathers everywhere!" She put it on the table and a minute later it had found it's way on to Aimee's glass. Aimee has kept it.

There's two ways you could interpret this. If you're a cynic you can put it down to another coincidence. White feathers are all over the place. We were outdoors. We just happened to choose that table and just happened to see a white feather, and because of the significance of the day, it stood out to us. On another day we might not have even noticed it, let alone thought anything of it.

Or, if you aren't a cynic you could see this as a little message from Rosie to us, to show us she was there with us, in spirit.

Personally I'm a cynic, but on this occasion I'm going to put that aside. It certainly felt like Rosie was with us that afternoon, and the little white feather was a perfect symbol of that.

__________________

These are just a few little anecdotes from the time that we have been friends with Rosie. I'll end by sharing a few photos of when we got together in London one time earlier this year. It was the same day that Rosie walked down a red carpet to go to the House of Cards premiere!

Rosie, Andrea, Rebecca, Sarah, Cinzia, Jojo

 

 Rosie, Andrea, Sarah, a Pearly Queen!, Cinzia, Rebecca, Jojo

 

Rosie and Andrea

Rosie and Sarah

Jojo, Sarah, Rebecca, Andrea, Cinzia, Rosie

 

Lots of love to you Tali and Joey. I am so, so sorry that you have lost your wonderful mother at such a young age. But I hope that through family and her friends, and through her writing, you can know her, and know how much she loved you. You were her everything.

xxx
 

Death

One month ago today, my friend Jojo died. 32 years old, diagnosed with breast cancer last May and secondary breast cancer this January, we knew she was very, very ill, but still her death came as a terrible shock. One of the first things our other close friend Rosie said was that she wished she had talked to Jo about death, and dying. They had similar situations - Rosie was diagnosed with breast cancer last June and secondary breast cancer in December. Both of their cancers had spread to their livers. Both were undergoing further gruelling treatment. They'd talked a lot, but not, Rosie said, about death.

As soon as I saw that message from Rosie I phoned her and we talked a little about death, and dying, and promised to talk about it lots more. Not to be morbid, but to try and find out and figure out as much as possible what it is really like. It is, after all, the one certainty we all face, and it can be a frightening certainty if you really think about it.

We never got to pick up that conversation. Rosie died today. She went away on holiday, came back very ill, and was admitted to hospital where she's been for the last couple of weeks - moving to a hospice on Friday. Myself, and our four other friends that form this particular little group went to see Rosie in hospital last Tuesday. It was the one day when everyone had hope. Scan results that morning had shown she was not ill because the cancer had spread to her lungs or brain, she was ill because of an infection she had. We didn't talk about death. We talked about punching her miserable doctor in the face for giving us a fright with his doom and gloom, and going out in London and Brighton as soon as she was well again. We talked, and we laughed, and we gave her big kisses, and said see you soon.

That was the last time I got to speak to Rosie. I'm glad it was on a happy day, with hope. It was just the next day that she was told there was nothing more that could be done for her - she couldn't have any more cancer treatment because of sepsis, and she couldn't beat the sepsis because of the cancer in her liver. So that day, the day after we saw her, she found out she was facing an inevitable death, and that it would be soon.

From then on, after saying her goodbyes to her friends, her family, and her two young children, she was mostly asleep. I thought about her pretty much all day every single day this last week. Wondering if, as she slept, was she able to think? Was she thinking about death? Was she afraid? Could she hear people as they spoke to her? What did it feel like? Was she in pain? Was she hallucinating? Was she having weird dreams? How much conscious choice did she have about when to die? Could she feel her body dying? Did she want to sleep, or did she want to wake up but couldn't? What was her last thought?

These were the things neither me or Rosie knew the answer to when we talked about death. I don't know if anyone really knows the answer. There's information about "end of life" on websites like Macmillan, but it doesn't answer these questions.

Anyway, I'm sharing this post because I want to say that if anyone of my friends ever want to talk about death, I am here for talking to about death. I know that many people don't want to. But sometimes, some of us need to. It's not being morbid, it's a reality for us all - maybe it might be a bit less scary if it feels a little less unknown.

XO


PS - (I should say, I'm not scared about what happens after death - this is more about what happens before, and at the very moment of death. I expect that the experience I have after death will be much the same as the experience I had before I was born.)

Death must be so beautiful. To lie in the soft brown earth, with the grasses waving above one's head, and listen to silence. To have no yesterday, and no tomorrow. To forget time, to forgive life, to be at peace.

- Sylvia Plath (The Bell Jar)

Saying goodbye

Last Wednesday I went to the funeral of my wonderful friend Jojo. Breast cancer killed her a year after she was diagnosed, having spread to her liver. She was only 32 years old.


People have asked me if I got to say goodbye. I didn't. The last message we got from Jo was the day before she died. She said she felt poopy and that she was having crazy dreams. I knew she was seriously ill, but I had no inkling that she would die the very next day, so there were no goodbyes. However, I had told her many times in the weeks and months before she died that I loved her very much... so I feel... ok (at peace?) about that.

Tomorrow, less than a week after Jo's funeral, I am going to visit one of my other very close friends in hospital. She too has breast cancer, it too spread to her liver, she too was originally diagnosed a year ago. She is 38 years old, seriously ill, and her doctors have given her a matter of weeks, at most, to live.

Everyone who knows her is currently praying and wishing hard for a miracle. This woman is phenomenally strong, phenomenally determined. If anyone could prove doctors wrong, it's definitely her. And I will not let go of hope. As far as I'm concerned, while you're alive, there's hope.

But I have to also face a reality. Tomorrow might be the last time I see her. 

I've shared descriptions of cancer from Siddhartha Mukherjee's book before, and they've come back to mind today. There are a lot of women with breast cancer who understandably don't like to use the word "fight". However, Rosie does and she has been fighting hard from day 1, and I know she is still fighting hard right now. But Mukherjee is absolutely right, cancer is a lethal shape shifting entity, it is the emporer of all maladies, the king of terrors, the most relentless and insidious enemy.

And so, tomorrow, when I leave the hospital, that really might be the last time I see her. I don't want to say goodbye. I don't even want to think it. I don't know how to say it. I don't know if I even should say it. It is just plain wrong to be saying goodbye to friends who are in their 30s. So, so wrong.

Goddess

Midnight

In bed, at midnight, between the 15th and 16th May, I picked up my phone and checked the time.

00:00

I noticed it, because it was midnight exactly.

The next day, I found out that's when Jojo had died. Maybe it was just coincidence. Or maybe the earth did stop turning for a moment at midnight and I sensed it. 

I've spent the last few weeks trying to find good enough words to do Jo justice. It's felt like no words could be good enough - but on Wednesday, at Jo's funeral, I listened to tributes from her family and friends. They captured the perfect magic and perfect beauty that was Jojo Gingerhead. It was an honour to be there. Being able to call Jo my friend will be one of the greatest privileges of my life. I still don't think I have good enough words for Jo, but there are some things I wanted to write down....

The white feather

The night before Jo's funeral, myself, Aimee and Rebecca arrived in Brighton. After saying hello to the sea, looking up at the big, bright full moon and discussing spells, eating a ton of sushi, and drinking more than enough wine, we went back to our apartment. Rebecca and Aimee had brought to Brighton a selection of big, bold geisha wigs. We all planned to wear one to Jo's funeral - it was one of the little ways in which we could pay tribute to her.

It was Jo that had found the Geisha Wigs shop first. And it was Jo that picked out the one for Aimee which she then planned to wear to the funeral. We were all trying the different wigs on and then Aimee stopped, stunned and said "Oh My God."

"What?"

"This was on the floor."

She held up a white feather.

"What the fuck? Where was that?"

"Right there, on the floor."

It hadn't been on the floor when we came in. We checked the bedding. No feathers. We all started to cry.

It was my mom that first told me about white feathers, a few days before my granddad died. He was in a hospice, and in the days before his death, as his body was shutting down and he was out of it on morphine, he was talking to his own parents. My mom found a white feather on the floor, next to his bed. She said white feathers are messages from loved ones who have died. She was certain it was a message from his loved ones, that they were waiting for him, and that all would be ok. It gave her a lot of comfort, and I humoured her.

After he died, she found another white feather in the house. She thought it was a message from him. Again, I knew what it meant to her, and I humoured her.

Then when my mom died herself, I found a white feather in her hospital room by her bed, and one in my old bedroom at her house. I'm not religious, I'm not spiritual, I don't believe in life after death. So I put it down to coincidence. White feathers are probably littering all our houses and hospitals all the time and we just don't notice them.

As for the white feather that appeared when we were trying wigs on... The logical (and cynical) part of me can think of all sorts of ways it ended up there. Maybe it got caught on one of our clothes while we were out, unnoticed, and then fell to the floor as we were trying on the wigs. It doesn't really matter. However it got there, it moved us all. For a moment, it felt like Jojo was right there with us, drunk, big hair, big love. 

7 bitches

Me, Jojo, Aimee, Andrea, Cinzia, Rebecca, Rosie. Our little group is so special, the bond of friendship is so strong. When it was my birthday in March, the other 6 clubbed together and bought me a beautiful silver bangle. It has a little tag that says "Seven Bitches Forever" on one side, and "YOLO" on the other. It was Jojo that picked it out. It was perfect. For Jo's birthday, we got her some little hoop earrings, which were engraved with the same. I wanted all 7 of us to have something, so I got a little gift for the others. We all now having matching bangles - all exactly the same as the one Jo picked out for me. Rosie and Andrea couldn't be at the funeral, but the other 4 of us wore ours that day. 7 bitches forever.

Daphne

The next day I had to be up and away early. I was giving a speech at a protest  as part of a campaign I am supporting in Staffordshire against the sale of NHS cancer care to private companies. I didn't want to leave Brighton and my friends, but it was an important thing to go to. On the train I was listening to what is possibly my most favourite song in the world. It's called Daphne and tells the story of Daphne the nymph. She was being pursued by Apollo, one of the most powerful gods. She pleaded with Gaia, Mother Earth, to save her from him. She did - by transforming her in to a laurel tree. As I sat on the train, listening to this beautiful song about transformation, life and death, spirit and matter, I couldn't help but think about Jo.

These are the lyrics. It's a beautiful song.


Daphne in the wood, you'll become the wood
Fire in his eye has gone and fuelled your flight so high
Over the river rocks, the wind will carry thee
Call on nature now, for she'll keep you safe
From your own beauty

A heavy numbness seizes her into bark
Feet so swift to root, arm to branch and hair to leaf
Woman to tree

A heavy numbness seizes her into bark
Feet so swift to root, arm to branch and hair to leaf
Woman to tree
 
And in the end it's the difference of the spirit and the matter
It's the difference of the lover and the flyer
Don't it make you want to cry?

It's nothing less, nothing less between the worldly and the one self
All this breathing and the truth that's in your last breath
Don't it make you want to cry?

So fly, fly and we'll wear you like a leaf crown
Fly cause your truth is in the solid ground
Fly

Yeah, fly, fly and we'll wear you like a leaf crown
Fly cause your truth is in the solid ground
Fly


The Origin of Love

Once I was home I downloaded one of the songs that was played at Jo's funeral service. The Origin of Love (Hedwig and the Angry Inch). Listening to the lyrics, I realised it was another song that used stories of the gods. I listened to it on repeat, for hours and hours.

It's all so fitting.

Jojo Gingerhead is a goddess. She's of the universe, not just of the earth.

I might not be religious, I might not be spiritual. But as I sit here listening to the Origin of Love (loud) and think of the full moon, the feather, the moment the earth stopped turning... As I think of Jojo, I realise if that if I ever do decide to believe in a big, awesome power up there, I'm going to be picturing Jojo. The most powerful and brilliant goddess the universe ever created.