A view from the other side of the fence

Last Saturday marked a year since Ellie died, a day I remember like it was yesterday but a year which has undoubtedly been the longest of my life. Despite this I’ve been hugely touched by all the people who have contacted me via the charity and written lovely things about Ellie and how inspiring she was, and still is, and we’re very proud to have established a registered charity in her name and memory.

Our logo, designed in collaboration with our friends at B&B.

Our logo, designed in collaboration with our friends at B&B.

We received our charity number last week and, as you may already have seen, we have a logo for Ellie’s Friends, so our main focus now is to develop the website of that name. It will enable people living with cancer to search by location and category for the services and support available to them and we will also continue to build a national network of service providers who wish to offer their skills or products for free or at a discounted rate.

As well as the many kind offers of help, many people have also enquired about donating to the charity and we have finally set up a donation page, which you can visit at https://mydonate.bt.com/charities/theeleanorrosefoundation.

We are hoping that we can find web developers who are willing to help us build Ellie’s Friends free of charge or at a significantly reduced rate and there will obviously be running costs of the site as we keep it up to date and approach service providers to grow the network. Whatever we do, we aim to make any donations stretch as far as possible and anyone who knows me will know that this is a particular skill of mine! Thank you to anyone and everyone who takes the time to donate.

In the meantime I would like to post a short piece that ‘Professor Hope’, Justin Stebbing, kindly wrote about Ellie and how she touched his life. Ellie wrote a lot about him and how his positivity motivated her, so it was interesting to me to get his perspective on a patient whose situation clearly affected him just as much.

Tom

Ellie and Me

I still read writtenoff.net. There’s just something about it. I shouldn’t but I do. It’s hard not to use glib words that sound clichéd, but it simply transcends any descriptions of who we are and what we may, or may not be. Making the big C smaller is my own life’s dream, but Ellie captured being on the receiving end of the big C better than anyone I have ever encountered with overwhelming power, energy, simplicity, humility and beauty. Everyone is special, and the more one knows someone the more special they are and can be, but as a hardened oncologist Ellie’s story, her love for life, and what ultimately happened, is enough to make one cry, laugh and for me anyway feel unbelievably privileged and blessed to have looked after Ellie, and know her in the way I did. Whenever I think we are getting somewhere and we’re getting good at oncology, reducing the death rate, I think of Ellie and that for all our successes, she died 3 weeks before she was due to marry Tom. If that’s not failure, I don’t know what is.

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Ellie’s oncologist and our charity patron, Professor Justin Stebbing

I remember first meeting Ellie and Tom. It’s worth mentioning that no two patients are ever the same which is a problem for trials of the latest therapy or diagnostic test, in which patients are grouped by necessity. We first met on Harley Street but then straight away I started caring for her on the NHS. She had an aggressive cancer – anyone’s cancer can be rapidly proliferative and divide quickly, but younger people’s tumours often are. One shouldn’t get involved, and one should remain detached – by whatever mechanism (my favourite one being busy, running a large research team and burying my head in the sand). It’s important to provide choices, not to judge people and do one’s utmost to prolong both quantity and quality of life and that’s all I wanted to do. I didn’t realise until a few months into Ellie’s treatment that she was describing our consultations on her blog.

On reading it one was immediately struck by the intense quality of the writing, and an ability to bring humour into a very dark area. It was accurate and precise but more than this for the first time in my experience and career described the quiet unwritten communication that occurs between a doctor and a patient, their friends or relatives. That’s not easy – it can’t be by definition – because I have never seen or read it before. I don’t know if it’s a good thing or not that I found out because once a doctor knows about it, it introduces a different dynamic into a consultation. Here though, it worked beautifully, and even though Ellie was a journalist, it wasn’t trained and she was clearly an amazing writer and chronicler of human dynamics. I don’t think one can teach communications skills and Ellie had those with overflowing abundance.

From an oncologist’s perspective her illness was doubly cruel. Not only was she very young, but the second whammy was that it was a very difficult type of cancer to treat, with a lack of targeted therapies available. We tried hard to enable Ellie to receive a targeted new experimental drug, called a fibroblast growth factor receptor antibody and the great news here was that we biopsied her tumour and it had high expression of the receptor on the cancer cells, which one needed to be included in the trial (high expression or high levels of the receptor was uncommon). But, Ellie was excluded from it due to a problem with the back of one of her eyes – damn small print, there to protect patients but sometimes a little anti-inclusive.

The blog describes in pragmatic detail Ellie’s journey from her ‘current oncologist’ to me. One of the problems with British medicine is doctors can feel like they own patients in their own parochial manner. Surely when one has a young patient or anyone for that matter with a difficult cancer there’s no harm asking for help. Ellie’s previous consultant who I don’t know from Adam, was wrong to say I’d charge her a fortune for an expensive cancer drug if she came to see me. It’s extraordinary to say such a thing to a patient. I hadn’t charged Ellie and Tom when I saw them privately let alone even think for one second about charging them for medicines which could cost a fortune but I am embarrassed as a medical professional that some of my erstwhile colleagues can treat people this way – to destroy hope.  This is one aspect of patient care the blog describes with a reality that’s almost too present, and it is present on many occasions throughout the blog. I am not sure how Ellie wrote with such clarity, often describing little minutiae while keeping it big picture.

As Ellie’s illness progressed and we tried different treatments with varying degrees of success, I felt so proud that at least Ellie was likely to make her long planned wedding to Tom. How wrong I was. I felt so lucky that Ellie was raising money for my charity (a sponsored shave headed day!), Action Against Cancer, to help fund PhD students and laboratory work aiming for a cure for this dreadful illness – with the biggest risk that we don’t take enough risks. My heroes are people like Ellie, and those students working their guts out to make a difference. The work of these scientists is distilled into manuscripts frozen in place and time, presenting data devoid of feeling and emotion. This missive and the blog are different. The blog just makes you stop and think, about what’s important in life, where we are and where we should go, from how to treat people when we meet them to how do we start to cure this disease.

The Eleanor Rose Foundation which has now been established aims to simply help people with cancer have a better life – a fitting testament to Ellie. I am hugely honoured to be a patron of this. We can’t just focus on new drugs and clever molecules without realising the very human cost and humanity behind an illness that affects 1 in 3 people with 1 in 4 people dying from cancer.

Nice people and not nice people, young and old, good and not good, men and women, right, left, gay, straight, tall, short, fat, thin…anyone…can develop cancer. I was recently told that as oncologists we only have a certain number of patients in us and once we’ve exceeded that we have to give up. Ellie was truly amazing, a light in the world, and The Eleanor Rose Foundation is ensuring her legacy will outlast all of our lives, which is the most fitting tribute to a most beautiful young woman, who I will never forget. The world is a much better place for having had Ellie in it, and a worse one for losing her but maybe one day we can cure this illness, and Ellie will have helped with this.

Justin Stebbing

Moving with Ellie

Dear all,

It feels like I’m always starting with thanks, but I suppose that’s an inevitable part of running a charity.  In any case, thank you to everyone who has taken the time to contact us at The Eleanor Rose Foundation for any reason, whether it be to offer a specific service, to volunteer help in a more general way or simply to point us in the direction of something we might find useful.

I’ve also got to apologise for taking so long to find and approve the lovely comments that many of you have posted on this site lately – they go for moderation to Ellie’s email which I only check occasionally. As you know she was very diligent at responding to you all and for those of you who write to me via the charity website (www.eleanorrose.org) I’ll do my best to match her efforts.

At the moment Written Off still has the furthest reach and is the best way for me to communicate news of the charity, but I don’t want to take the site over with this entirely. It was Ellie’s outlet when her social world was shrinking and I want it to remain hers, so if you want to remain engaged with her story and what we’re doing to continue her legacy then please contact me on The Eleanor Rose Foundation website and ask to be put on the mailing list. I’ve also set up a Facebook page for the charity, so if you ‘like’ The Eleanor Rose Foundation on Facebook you’ll get all our latest updates, and we’re starting a Twitter feed too.

Getting Ellie’s Friends initiative up and running is still our main focus, and we’ve just started working with a design company to build the website. It’s great to get offers of services while this is happening so that we have something to build with and then when we go ‘live’ it will hopefully snowball. I had the thought that it might be nice to give donors the option to say whether someone in particular has inspired their contribution – it could be Ellie herself, but equally it might be a friend or family member that has passed away and in whose memory you want to give something to others.

Professor 'Hope', Justin Stebbing

New charity patron, Professor ‘Hope’, Justin Stebbing

We’re pleased to be able to announce that Professor Hope, who Ellie finally revealed as Professor Justin Stebbing, has agreed to act as a patron for the charity. Despite being a battle-hardened oncologist he has told me how much Ellie’s circumstances touched him and we feel honoured that someone of his stature is supporting our cause.

Finally, I know that some of Ellie’s readers were also people living with cancer and it’s people who find themselves in this situation that we really want to help. If you have the time and energy we’d really appreciate you taking our online survey about Ellie’s Friends to let us know which areas we should be focusing on and how we could do things differently. The link is below:

https://www.surveymonkey.com/s/LPFPLTZ

I think that just about covers it for now so I’ll say a final apologetic thanks and hope that as many of you as possible make the leap to corresponding via our charity website and following our Facebook updates too.

Take care,

Tom

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30 and counting

Today would have been Ellie’s 30th birthday and I’ve come up to her native North Yorkshire to feel closer to her and take a walk along the beach where we scattered some of her ashes. Sadly it’s not a day we can celebrate, but Ellie’s friends, family and I hope that there is a reason for optimism.

In the past few months we have been busy setting up a charity in her name, The Eleanor Rose Foundation, which aims to harness the goodwill that Ellie was shown while she was in treatment and use this to benefit the lives of others who find themselves in similar circumstances to her.

We now a have website, www.eleanorrose.org, which outlines the purpose of the charity. We are also in the process of developing an initiative which will enable people with skills and products to be able to offer them free of charge or at a discounted rate to people living with cancer. We’ve decided to call this initiative Ellie’s Friends, to reflect the fact that she met so many lovely people who wanted to help when she was having a difficult time, and who became new friends.

Of course, not everyone is in a position to be able to give money to every charity they think is worthwhile, or take time out of their hectic lives to volunteer. However, we know from the blog and from Ellie’s personal experiences that there are many kind people out there who want to help in any way they can. Our goal is to give them that opportunity and make helping others easy. The charity website explains a bit more clearly our vision and how we want to make this happen.

At the moment there are just a handful of us and it will take some time and a lot of goodwill to get the initiative up and running properly. We haven’t got any paid staff but as with any project it will take some money to get it started. Then hopefully it will grow organically, but this in turn will involve running costs.

There will soon be a donate page on the site with a MyDonate link but first and foremost we’d welcome anyone with any skills or products to contact us to find out how they might be able to get involved and become one of Ellie’s Friends. Equally, if you’re currently living with cancer and have any thoughts on things that would improve your life we’d love to be able to send you a questionnaire to get feedback.

I’m sure you can all imagine how difficult the past eight months have been. I never stop missing Ellie and milestones and occasions such as birthdays and Christmas are heightened reminders of her absence. From a purely selfish point of view I want to make this charity as successful as possible to continue her legacy, because without focusing on the memories I have of her and the wonderful time we spent together I would find it hard to motivate myself to do anything.

There are memories of Ellie in every corner of our flat. Her picture is in front of the fireplace and the ‘Tom and Ellie’ bunting Ellie’s mum made for our wedding still hangs above the 42” flat screen TV – yes, it was a bachelor’s flat before she moved in, although she’s still got three drawers in the bedroom chest of drawers to my one! But even if she can’t physically be with us I’m hoping that being part of a successful charity in her name will make her impossible for anyone to forget, so I and the rest of the trustees welcome any help anyone can give us.

Best wishes for 2013,

Tom

Memories of Ellie

Since my last post we’ve had both Ellie’s funeral in Middlesbrough and a memorial service for her in London. We’ve celebrated her amazing life and many people have been in touch to say how much her blog and her life have inspired them. I’d like to thank all those who helped to organise those events, who have donated to the chosen charities, who have sent messages of support; it is all hugely appreciated.

Plans are afoot to set up a charity in Ellie’s name; in life she had a wonderful ability to bring people together – the sheer volume of comments on this blog are a testament to that – and I think that she could leave no more appropriate legacy than an organisation which helps people who find themselves in similar situations to support each other. It may take a little while before it’s up and running, but I will keep you posted on the blog as and when we have something definite to show for our efforts.

In the meantime I’d like to thank visitors old and new for continuing to come to the blog. Many people have told me that they feel like they knew Ellie from reading her words, but here is a link to a short video tribute we played on the day of her memorial which will hopefully allow you to get to know her a bit better. She was quite simply the most wonderful person I have ever known…

My beautiful Ellie

The post I never wanted to write

Sadly it’s not Ellie writing this post but Tom. Many people will already have heard the news that Ellie passed away in the early hours of May 18th after a 9-day stay at James Cook hospital in Middlesbrough.

The last few weeks were tough; before Ellie started her final course of chemo we had high hopes that the GemCarbo would have a significant impact, but it was soon evident from little lumps and bumps popping up on Ellie’s chest that it wasn’t having the required effect. The first two doses had already taken their toll on Ellie’s body, reducing her platelet count and leaving her with little energy even to move from the bedroom to the living room.

Despite this, Ellie’s indefatigable spirit and relentless optimism meant that she refused to allow the debilitating physical effects to deny her a possible lifesaving dose of the drug, but the third cycle would prove too much.  Walking any kind of distance was becoming harder every day and even travelling to the train station was too great a challenge, so I drove her to North Yorkshire where she wanted to continue making wedding preparations with her mum.

It was soon clear to her family that Ellie needed proper medical care, but even after she went into hospital we all hoped it would be a question of an energy-boosting blood transfusion giving her the strength to carry on; we were still talking about moving house and rearranging a holiday to Crete we had postponed because of the hospital stay.

The nurses at James Cook were – and still are – a remarkable bunch. Ellie was a reluctant guest at several hospitals over the past year and while we’ve almost always found the nursing staff friendly and efficient, the team on Ward 14 really went that extra mile for her, myself and the rest of Ellie’s family. It probably didn’t do them any harm in Ellie’s eyes that they all admired her engagement ring too.

After a few days in the hospital we were given the devastating news that all they could offer was palliative care, that Ellie’s liver was too damaged to be able to save her and that it was simply a matter of managing the pain. She’d already had a lung drained of fluid to help her laboured breathing, and it was traumatic to see her suffer so every shot of morphine that eased her pain was just as much a relief for those of us by her side.

Everything happened so much more quickly than we had anticipated. When the doctors told us just a few days before Ellie died that she wouldn’t last until the wedding date I debated trying to arrange a wedding in the hospital. However, being on so much pain medication had caused Ellie to drift in and out of lucidity, making it hard to gauge her true feelings on the matter; occasionally she would acknowledge the lack of time remaining and the next she would be arranging plans for the wedding guests to go for a walk on the beach the day after the ceremony.

During one of her periods of clarity I asked her if she wanted to get married on the ward; she instinctively said no – she didn’t want to be wheeled up the aisle. I’m not sure if she realized that we wouldn’t get the chance to have the wedding she had so beautifully planned, but either way I knew that I didn’t want to put something last minute together that would bear no resemblance to the wonderful occasion she wanted. While we desperately wanted to marry each other, we didn’t need any old ceremony to validate our love. Our lives were utterly entwined, and whatever happens from now on I’ll always regard Ellie as my life partner.

Ellie’s close family and I have all received so many touching messages from friends and extended relatives. She was one of those remarkable people who have the ability to make others feel special just by talking to them. In social situations people would gravitate towards her and she had a truly unique ability to disarm anyone; she was a kind of personality Jedi – anyone who interacted with her was utterly charmed.

The clichéd numbness that accompanies bereavement is mixed in with regular waves of sorrow, but despite this I am determined to continue Ellie’s legacy. I know from everyone who has commented on the positive effects of reading her blog that Ellie has touched the lives of many people who weren’t lucky enough to know her in person as well as those of us who were.

On Ellie’s behalf I would like to thank everyone who has read the blog, and those who have left comments of encouragement. I hope that despite Ellie’s untimely death people can continue to derive benefit from reading it and I plan to look into the possibility of publishing it as a reading aid for those living with cancer, their loved ones and of course the medical professionals treating cancer patients.

We also have many people to thank for their kindness and help in the course of Ellie’s own treatment. We will be making a collection at Ellie’s funeral for Ward 14 of James Cook University Hospital and we would also like to invite anyone who feels they can afford it to make a donation to either of the following two organisations that helped Ellie: Maggie’s and Action Against Cancer.

https://mydonate.bt.com/fundraisers/ellieactionagainstcancer

https://mydonate.bt.com/fundraisers/elliemaggies

I’m not going to close the blog immediately as I’d also like to post a handful of photos of Ellie and possibly a video (should I work out how to!) but for now I’d like to finish this post by sharing with you all a draft of my wedding speech which I wrote in the hospital when we still hoped things would work out. I read it to Ellie on the last day of her amazing life and although she was drifting in and out of consciousness I’d desperately like to think that she heard and enjoyed it.

In the time we were together she was everything to me and although right now things seem incredibly bleak I know that my life is much richer for having known and loved her.

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Wedding Speech

Ladies, gentlemen and of course my amazing wife Ellie Thostrup, I’d like to start by thanking you all for taking the time and effort to come to be here today. People have come from Denmark, Spain, France, Italy, Slovakia, Holland, Germany, Australia and even Scotland so we’re very grateful to everyone for travelling to a place you probably never imagined yourselves visiting. Please feel free to avail yourselves of the local Whitby Dog ale but if you find yourselves getting peckish in town later tonight and someone offers you a parmo it’s probably best to just say no.

Ellie and I would like to thank her beautiful bridesmaids: Sarah, Miffy and Jess and her little flower girl Izzy. We’ve got a little thank you for you (give gifts)

We’d also like to thank the best men Kamron and Mike (give gifts) and our ushers Terry, James and Ali. Nothing for you guys, I’m afraid – you have to draw the line somewhere.

I’d like to thank my mum and Ellie’s parents for their contributions to the wedding and personally I’d also like to thank Ellie’s mum Chris and dad Keith for raising such a remarkable human being. Ellie is everything I have ever wanted in a girl; she’s beautiful, funny, loving, inspiring and challenging. She supports and encourages me, she indulges my follies but also reins me in when necessary – sometimes more often than necessary as far as I’m concerned!

She’s a source of inspiration – the company Michael and I have started bears her name and without her we wouldn’t have got our first commission (catch it on E4 this October!). She advises me what to wear to look less like an unemployed teenager (admittedly, I frequently ignore that advice), and in exchange I correct her spelling and grammar. We’re a perfect match.

Everyone who meets Ellie is charmed by her. People love spending time with Ellie and I’m so grateful that she’s chosen me to be her husband, the one who gets the lion’s share of her time. I think you all know that it’s not been the easiest time of late, but whatever the circumstances and wherever we find ourselves you know I love you and I promise that I will always do everything in my power to make our married life as happy as you make me.

(Toast) To Ellie Thostrup

Finally, I’d also like to toast absent friends. There are many people I’d like to have had the opportunity to introduce Ellie to; my grandparents, my godfather  and most importantly my dad. I know he would have loved Ellie and they would have gotten on famously.

(Toast) To absent friends

Now I’ll hand over to Ellie’s brother John who I should warn you has lived in Australia for several years and has developed a very Australian sense of humour.

The safety of routine

For the moment I’m wrapped in a safety blanket of routine and because this chemo is a fairly easy one I’m able to go about my life pretty normally, something I am very grateful for. The Gemcitabine and Carboplatin are administered intravenously at the same time and for the next few days I’ll sleep like a sloth but the sickness is kept under control by the drugs and the next two weeks are mine. I’m supposed to have a second dose of just Gemcitabine a week after the first infusion but both times my platelets have been too low so it has been missed.

The red mark on my chest is changing but the lump in my breast seems to be the same size so I am at a loss as to whether this stuff is working. Women who’ve had the treatment have told me that it is very effective and maybe it’s too early for me to call but the huge fear that it’s not working tugs at my safety blanket daily.

The wedding is drawing closer, now less than eight weeks away! I always felt I would make this date, despite what my previous doctors told me, but I can’t escape the fear of ‘what ifs.’ The diagnosis of brain mets and the two stays in hospital early in the year really rammed home how fragile my situation is. There aren’t many options left when it comes to chemo and I need to be in good shape if a trial were to come up again.

Sometimes it doesn’t feel real; how could all of this have happened to me? How did I come to be in such an unlucky situation? I don’t feel bitterness towards others, for what they have, but I can’t help but look around in restaurants and on the Tube and see healthy people with their whole lives ahead of them. I can honestly say I wouldn’t want anyone else’s life but I do envy their health.

On our way back from a house viewing the other day I had to tell Tom that something had been nagging at me whilst we noseyed around other people’s homes. I was scared that we would find a new place, move in and then if I died he would be stuck in a three-bedroom house on his own. He reminded me, and I know he’s right, that we can’t live our lives like that. If we’d believed the stats we wouldn’t be having a wedding in two months time; if you let the cancer take over completely then you’re letting it win before you die.

I never contemplated death before my cancer diagnosis. I don’t think anyone truly expects to die. It’s a universal truth that we’ll all pop our clogs but it’s in the future so there’s no need to think about it and we’re all so busy living our lives there’s no time for it anyway. But when you’re told you have months not years, when lumps and bumps of cancer are popping up all over your body, when the extent of your ambitions is to get out of the flat to meet a friend for lunch, you can’t help but ponder what a world without you in it would be like.

I’m not sure anyone is ready to die, certainly not in their twenties. Even my 89-year-old neighbour who lives alone and has no family says, “I’m not ready to go yet!” I’m torn between hoping for what many medical professionals will tell you is the impossible and accepting that I might not see my 30th birthday.

There are periods of escape from ‘the fear.’ Having felt quite well on this chemo I’ve spent lots of enriching times with Tom and my wonderful friends. Momentarily it is possible to forget; sharing some salacious gossip or laughing so much your stomach hurts. Then on the Tube journey home you feel a twitch of pain in your head and you assume the worst; it’s a tumour, it’s happening again, I’m going to die.

I’ve never suffered trauma like this in my life. I’ve been lucky; a stable upbringing, no deaths of people who were very close to me, no tragedies. I think this is why going through cancer has altered the way I look at the world so dramatically. My friend Matt said that of all the people he knows I was the one who least needed life lessons but that’s not how it works. Cancer is arbitrary – there’s no reason behind it, I was just unlucky.

The great thing about the routine I’ve been able to have over the last couple of months is that it’s afforded me the chance to sort the wedding out. I’m so excited to have family and friends all under one roof. My hair is coming back but if it’s not quite the length I’d like then Miffy’s locks will be adorning my head on the big day – I just need someone to colour the wig (if anyone knows anyone who does this please drop me a line). I’ll be taking a short break from chemo so I feel the best I can on the day and most of all I can’t wait to marry the man who gives me the strength and support I need to get through this.

Cancer is a shitter, there’s no doubt about it, but there are ways to make your life work with it. It’s not easy but for the moment I feel lucky to have the security of routine and the ability to hold on to hope.

P.S Congratulations to Matthew who completed the Brighton marathon on Sunday, all in aid of Cancer Research. I can’t express how proud I am of you Matt. You’re a star.

Matt still managing a smile at 26.2 miles

“But you’re so young.”

As a cancer patient in your 20s certain doctors seem to somehow take a bit more interest in you. They can’t help it, you’re the exception to the rule. I was recently at a vascular appointment to see what the blood clots were up to and the registrar who was about my age asked, “How did you discover you were ill?” Quickly adding, “If you don’t mind me asking?” If I had a quid for every time a registrar had enquired about my illness or commented “but you’re so young,” I’d have, ooh…at least a fiver.

Once when I was waiting for a scan the doctor was called to try and get a vein. She inquired about all my ailments and commented, “Poor you.” Quite, now can you concentrate on putting that cannula in please?

“I’ll look out for your brain scan results” she joyfully called after me as I made a sharp exit. I know it was just a clumsy attempt to make small talk, but what good would that do me? I’d never see her again.

I used to get upset by it – it’s not easy to recount to a stranger that your life has taken an entirely different turn to what you had planned. They’ve read the notes (well at least they should have) so is it really necessary for me to explain it in person?

Those who suffer from cancer in their 20s and 30s are a relatively rare breed. There’s certainly not a whole lot of support out there specifically aimed at this group of people. I think there are only two occasions throughout my many chemo sessions that I’ve not been the youngest patient on the ward. You’re in your prime and your cells are meant to be top notch; they’re not meant to let you down and steal your dreams before you’ve even gotten started.

As my body receives wave after wave of toxic treatment to fight these cells I have had to come to terms with the fact that I won’t have children. Funnily enough, the thought of this upset me more when I was initially diagnosed and the chance of having children wasn’t entirely ruled out.

I have always wanted kids and having met the man that I want to spend the rest of my life with it seems like such a kick in the teeth to have that chance taken away; not just from me but from Tom also; I feel guilty, that I have let him down, that I can’t be the best for him.

Once my secondary diagnosis came the prospect of ever having children was well and truly scuppered. But when I found myself fighting for my life children didn’t seem as important any more; living as long as possible for myself and Tom became the focus.

I love children and am fortunate there are a fair few kiddiwinks in my life who I get to spend time with. Before my diagnosis I could only see the benefits of having kids but now I realise that life can be just as fulfilled without; when your life is threatened your priorities change. Don’t get me wrong, I would have tried for children if the secondaries hadn’t come along, but a long life with just Tom seems pretty attractive right now.

I’m lucky I have a great support system around me, with Tom and my friends always on hand. I can’t compliment Maggie’s enough on the emotional and practical support they’ve provided me with, but not everyone is lucky enough to live in a city or have friends and family nearby. Often someone in their 20s or 30s won’t have savings to fall back on if a cancer diagnosis comes. If they have to give up their job how will they afford to live? I’m sure there are many who retreat back to their family home, relinquishing their independence and the life they loved.

I miss work terribly. On a good day I could manage it but I can’t guarantee good days or when they’ll be. It can be disheartening to be stuck in the flat when you’ve worked hard to get to a certain point in your career.  Your job becomes beating the cancer, and FYI it’s a shit job. Don’t ever willingly apply.

The benefit of having cancer in the Internet age is that your world is opened up to support services that you might not ordinarily have access to.  Through Twitter and blogs I’ve learned of and met up with women who are going through a similar situation to me, which has helped me massively.

It’s refreshing to be able to discuss issues that you might not want to bring up with other friends through fear of upsetting them. Recently Fran, who I’d ‘met’ on Twitter came to visit me for the first time. The conversations took a natural cheery steer towards questions about death, brain metastasis and how our partners will cope without us. It sounds pretty macabre but if you heard the tone in which we were calmly discussing these topics you’d think we were sat talking about shoes, the latest episode of TOWIE and George Galloway’s victory in Blackburn…er sorry, I mean Bradford.

My case may be a rare one but it’s by no means a one-off, which is why I’d really rather not be treated as a curiosity when I’m going for one of my regular appointments. Save the medical marvel stuff for when I beat this shit!

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