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!

Follow

Get every new post delivered to your Inbox.

Join 2,661 other followers