Dearest JoJo,
It's been almost three days since you left us. I should have written this before now - it has taken a little while to get myself together and find the right words so please forgive me. I'm not sure I will ever have the words to do you justice but I will try my best, petal.
I don't know how to feel right now. Perhaps I should feel angry that this evil disease has taken you away from us, but I mostly feel empty, almost numb. This feeling of numbness is punctuated with overwhelming waves of sadness, which bring with them a physical pain. My heart is heavy in my chest and the tears keep creeping in. It still doesn't feel real somehow - it seems impossible that someone so vibrant and present could suddenly just not be here anymore.
I remember when I first joined the forum last year - you just stood out like a bright ginger beacon. Your desire to help others, to offer advice, laughs and support. Your individual style and grace. Your warped and downright weird sense of humour. I think I fell a teeny tiny bit in love with you. I want you to know that you have made the shitstorm of the last ten months bearable, enjoyable - fun in fact. Which sounds so strange as it has been filled with illness and treatment, but that was you. You brought light to the darkest of times. You found humour and fun in everything. In the short time that I knew you, you have made more of an impact on my life than almost anyone else I have ever known. I feel so privileged that I was able to call you a friend, to be able to love you and have you love me back.
The six of us miss you so very, very much. You've left one hell of a ginger-shaped hole, my sweet. Even though we knew how ill you were, we hoped and prayed that somehow you would recover, get better. That your story would have a happy ending. Because to consider the alternative was too heartbreaking, completely inconceivable. We talk about you all the time. We are so, so
happy that we got to spend that day with you in London. It was
definitely one of the best days of my life. I was almost sick with
laughter. And wine. We talk about all the things that we planned to do. Getting barred from all the bars in the Kings Cross area, a tour of the gay clubs in Brighton, wine on the beach, sitting in a hot tub together in a forest. We still going to do them, JoJo. For you. You won't be with us physically, but you will be there in our hearts and our heads. We will never, ever forget you.
You never wanted to use the words battle or fight during your illness. You were right. This wasn't a battle to be won or lost. If it was, you would still be here with us. I don't know anyone who was so stubborn or defiant in the face of cancer. You haven't lost, JoJo. Cancer didn't win this one. You will live on in the hearts and minds of everyone who knew and loved you, through your art, your music, your blog and the wonderful memories that you created during your short time on this earth.
Until we meet again, my ginger haired beauty.
I love you xxxx
A couple of days ago I came across a video on Facebook. A social experiment in which two strangers sit on either side of a wall and are asked 'if you had one wish what would it be?'.
On one side are those that are healthy, on the other, people with cancer or their family members. The answers that they each give to this question are incredibly different. For this post to make sense to you it is necessary to watch the video rather than have me describe it. You can do this here.
This video struck an emotional cord with me. If you would have asked me this question before cancer, I would have most likely have replied in the same vein as the 'healthy' people in this video. A better job, more money, a bigger flat. Indeed, before cancer I spent a lot of time wishing that my life was different, thinking that having more of something would make me happier. Constantly searching for the one thing that I thought would bring me happiness and fulfillment.
However, the moment you are diagnosed with cancer, everything changes. Nothing else matters. Priorities and focus shifts and the world becomes a very different place. The only thing that is important is staying alive. Whether this is done with a better job, an expensive car or more possessions no longer matters. I no longer care whether I will own my house or will get a better job with a bigger salary. Yes, there are things that I would like to do but ultimately all I want is to be alive this time next year and in years to come. To continue to find joy in the smallest of things. To spend more time with my family and friends. To keep on existing and being.
I can remember saying to a friend a month or so after I was diagnosed that the one thing I wished for most in the world at that moment was to wake up the next morning and find out I didn't have cancer anymore.
There are lots of things I would wish for right now. To not have the angry cloud of cancer and illness hovering over me. For a guarantee that the cancer is gone for good and will never come back. That this disease did not exist and my friends would not have to suffer from treatment side effects and the anxiety that comes with their secondary diagnoses. That we could be carefree and happy again. That there was a cure.
But if you asked me right now what my one wish would be, I would answer this -
For my friend to get better.
For my beautiful, bonkers, sweet, clever, kind friend to get better.
Love you JoJo xx
I've been for the first session of radiation to the Monster Boob today. My second hospital appointment of the day - the first being this morning to see the physio for another armpit massage.
The radiotherapy is being carried out at a different hospital to the rest of my treatment as there are only four or five radiotherapy suites in the West Midlands (I can't remember exactly - chemo brain again!).
This means instead of it being a 25 minute walk from my flat, I have to walk to a train station in the city centre and get the train through to the hospital. Every day for three weeks. Bit of a ball ache (or boob ache I guess you could say).
They give you a very fetching gown to wear which makes you feel a little bit like you belong in a downmarket massage parlour.... Here I am sporting said gown:
But first let me take a selfie.....
I look totally shattered due to being sleep deprived by menopause inducing drugs so apologies for that!
Anyway, they take you in to a room and you are faced with a machine that looks a bit like this:
I didn't have to chance to take a photo of the actual radiotherapy machine today, however I will try my best to get a portrait of the beast before my treatment is over.
The 'bed' in front of the machine looks like some sort of space age torture contraption, with 'stirrups' for your arms and head. If you've ever had a smear test - think that. Just for the other end of your body.
The whole process only took about 10 minutes but once again was wholly undignified - having to lie there half naked with your arms above your head whilst two (very sweet) radiographers measure you up and talk numbers over you. However, my dignity upped and left a long time again - I think the final shreds of it slivered out of the room whilst in was i hospital after my surgery so that's by the by.
So far, the only side effect I've had is a warm boob but I've been told it will probably be next week after a few sessions when I start to experience tiredness and sore skin.
As cancer treatment goes, this definitely beats having a boob cut off or poison injected in to my veins. However, I don't want to count my chickens just yet. Plenty of time for side effects!
One down, fourteen to go ........
Last week I had an appointment with an oncologist to discuss radiotherapy. It was one of three hospital appointments in one day - I'll go in to those in more detail a bit later....
All the way through my treatment I was told that I would need radiotherapy. However, when the results from my surgery came back I was told that it may not be necessary and that a discussion was needed as to whether it would be beneficial. To cut a long story short, the oncologist said there was definite benefit and that we should go ahead. He also assured me that the pain in my bum cheek was more than likely due to degenerative damage from chemotherapy and hormone treatment, rather than cancer and wouldn't send me for a bone scan dammit. Anyway....
After the decision to go ahead with radiotherapy was made last week, I found myself at a different hospital yesterday for a CT scan and marking up for the start of the treatment. It was my first time having a CT scan and I can only describe it as being inside a washing machine. Half naked. With your arms above your head. The scan is to find out where your heart and lungs are so that when they direct the radiotherapy waves at you they don't fry your insides. You kind of need those bits.
After that I received three 'tattoos' which were remarkably reminiscent of the kind of self marking that some of the kids did at school e.g. dipping their compass in ink and scratching their current amour's name in to their skin. These tattoos are only very tiny dots placed under the skin, but they were done in much the same manner - with a thick needle dipped in ink.
Radiotherapy is due to start on the 28th of April for three weeks. I'm
hoping its going to give me super powers but as it is it will probably be more
like fatigue, sore skin and a shriveled implant.
Back to my day of hospital appointments. Spending the entire morning at hospital is not the most riveting of experiences. There's only so much swiping left on Tinder a girl can do.... Anyway, after I saw the oncologist I went to see my plastic surgeon. She agreed that we didn't need to fill the monster boob any more and the expansion was now finished. I asked about when the expander would be replaced by an implant that looked more like a boob than a football and also when they were could take away the other potentially deadly breast. I was told that it would be six months after radiotherapy at the minimum, preferably twelve months. The only time she would operate any sooner would be if she was forced to e.g. if radiotherapy started to make my scar split and the implant to come out. Delightful.
After my appointment with the plastic surgeon I was sent to have more photos of my boobs taken. My before and after surgery boob photos will be coming to a medical student text book near you sometime in the near future. Without my face luckily. However, somewhere between taking my bra off and putting it back on again I managed to lose the cleavage enhancing whatsit I use in the 'normal' side of my bra to fill it out as the monster boob is bigger and a lot more pert that my natural one and makes me look decidedly lopsided. No idea how I managed to do that but some lucky member of hospital staff will probably have come across what looks like an overgrown garden slug at some point over the last few days.
After the photos came an appointment with the physio about my dud arm. The node clearance means that I have nerve damage, numbness and considerable cording under my arm. Cording is basically when the lymph vessels become dry, scarred and shriveled and feel rather like guitar strings. After showing me some exercises to try and revive the nerves in my arm, he gave me an armpit massage. Yes, you read right. He massaged the cording under my arm, something that I have to do myself at home as well. It's comes to something when you need your armpit massaging instead of your back right?
So, an appointment with an oncologist, examination of the monster boob, tit photos, an armpit massage, CT scan and dodgy prison-like ink tattoos. Just an average week in the life of a young breast cancer patient!
A little while ago, Debbie - who is married to one of my brother's friends - contacted me and offered to 'tattoo' my eyebrows - at no cost! When I say tattoo I mean what is called semi permanent make up. What with chemo and surgery, I wasn't able to take up her offer until recently. So a couple of weeks ago I went to Debbie's clinic in Doncaster, South Yorkshire to have my brows done.
I cannot recommend Debbie highly enough. She is absolutely lovely and incredibly skilled. The whole process took about three hours, which included about 45 minutes of drawing the brows on beforehand as Debbie does them freehand rather than using stencils. That coupled with her hair stroke technique results in a very natural effect. Debbie also spends time choosing the right colour for your skin tone and the right brow shape to suit your face. I went for a slightly thicker arch which gives a kind of face lift effect.
Here was the result a day or two after:
Debbie uses a two or three step approach. As she said to me, you can add colour but you can't take it away! Its better to be cautious with the colour than ending up with very bold brows that don't really fit your face. You could end up looking like this:
No one wants that.....
Debbie will be adding a little more colour to mine a few weeks once they have settled down.
Here is are my brows about a week or so later:
And here they are on my face in their full glory:
The process is carried out using a small needle and 'tattoo' gun and does smart a bit but compared to having chemo and losing a breast it's nothing more than a tickle!
For all my fellow chemo girls starting out, I would highly recommend having your brows done before you start if you can afford it. I toyed with the idea but didn't go ahead and now I really wish I had. Losing my eyebrows was almost worse than losing my hair. Never underestimate the difference that your eyebrows make to your face! Make sure you chose your clinician carefully however and that you are able to see examples of their work beforehand. If you can, I would highly recommend going to see Debbie!
Although my brows are growing back now they are still quite sparse almost four months after chemotherapy finished and I was still drawing them on. Now I no longer need to bother. I have lovely perfect brows with no effort and they are still there when my make up comes off! Debbie's gesture was so generous and has helped to increase my confidence in my appearance at a time when it was collapsed on the floor unconscious and I can't thank her enough.
More information about Debbie's clinic, treatment and prices can be found at www.thepermanentmakeup-clinic.co.uk
I had an appointment to see my oncologist on Tuesday to discuss hormone treatment. Because my cancer was oestrogen receptive (basically oestrogen made the bugger grow) they can give me medication to try and prevent a recurrence. I use the word try as there are no guarantees that it will work, but fingers crossed hey?
My surgeon put me on Tamoxifen when I went to get the results of my surgery three weeks ago. Tamoxifen is an anti oestrogen drug which tends to be the standard drug of choice for oestrogen receptive breast cancers. Tamoxifen is a mystical drug - it works in a way that’s quite complicated and not
yet even yet fully understood by medical bods.
Oestrogen positive breast cancer cells have proteins called receptors. When oestrogen comes into contact with the receptors, it
fits into them and stimulates the cancer cells to divide so that the
tumour grows. Tamoxifen fits into the oestrogen receptor and blocks
oestrogen from reaching the cancer cells. This means the cancer either
grows more slowly or stops growing altogether. Theoretically.
However, I don't want any oestrogen floating round my body - as little as possible anyway. So i asked to see my oncologist abut ovarian suppression or the 'shutting down' of my ovaries. Little bastards...
To cut a (relatively) long story short, my hormone treatment has been changed to one that is deemed to be stronger than tamoxifen. Studies have shown it to be more effective in preventing recurrence and because I am classed as 'high risk' for recurrence (I really wish oncologists would learn to temper their language sometimes!) it would be of greater benefit to me. Such is my disordered brain at the moment, even though I made the appointment to see the oncologist and I left with the drug combination I wanted, I then panic about the fact that they gave it me and think I need it. Sigh.
The treatment involves a monthly injection of a hormone implant called Zoladex and a daily tablet called Exemestane. Zoladex works by stopping the production of luteinising hormone by the pituitary gland, which in turn leads to a reduction in oestrogen produced by the ovaries. I've essentially been put in to a chemically induced menopause which comes with side effects such as hot flushes, mood changes and weight gain. I'm also now at risk of osteoporosis and can lose up to 12% of my bone density per year.
Exemestane is a member of the drug family called aromatase inhibitors. In women who have gone through the menopause the main source of
oestrogen is through the conversion of androgens (sex hormones produced
by the adrenal glands) into oestrogens. This is carried out by an enzyme
called aromatase. The conversion process is known as aromatisation, and
it happens mainly in fat. Exemestane blocks the aromatisation process and reduces the amount of oestrogen in the body.
It isn't given on its own to pre-menopausal women (like me) but because I have now been put in to a menopausal state it is the most effective drug to use.
Zolodex is given by injection in to the stomach. This is the needle they use:
I shit you not.
I was brave. No numbing cream. It hurt. Really hurt.
I'll probably be on this combination for about five years (lets hope I live that long). If I have one every month that is 60 of those beauties in my stomach. But to be honest, if it helps to keep the cancer at bay I'd gladly stick it my eye, never mind my stomach.
So here comes the menopause - I'm already having hot flushes that are such that I want to rip my wig off in public places and stick my head in a freezer. I'll be moaning about how things were not the same as when I was a lass and having a blue rinse next. If I had any hair that is.......
That's it. I've had enough. I'd like a refund on my ticket. Unbuckle my seat belt please. Stop the ride I want to get off.
I've described being diagnosed with cancer and the subsequent treatment as being on a roller coaster. One hell of a scary, terrifying roller coaster. Constant ups and downs, highs and lows - feeling optimistic and positive one day and completely downtrodden and spent the next.
But I think that it could also be described as one of these:
It picks you up and spins you round at such a rate that sometimes it's impossible to know where you end or begin. Your mind whirls with possible scenarios, your emotions are in a maelstrom and it leaves you feeling sick, dizzy and unsteady on your feet.
Or it could even be described as this:
A series of knocks and bumps that jar your bones and make your brain rattle in your head (metaphorically speaking).
I'm fed up of spending half my time in hospitals waiting to see medical professionals. I'm tired of treatment that's taken away so much of who I am and want to be.
I don't want to be in a chemically induced menopause and all that comes with it at 33 years old. I hate the fact that I will more than likely never have children and that realistically I may also never have a partner either.
I'm tired of the fear and anxiety. I'm sick of worrying about shoulder ache, back pain, a cough or a headache. I've had enough of the constant uncertainty and not knowing what my future may hold. I'm over having my mind constantly whirring and packed full of what ifs and maybes.
I'm fed up of my internal contradictions and paradoxes. Wanting to make the most of my life but being scared to plan in case the worse happens. Feeling that I need to pack everything in that I want to do as soon as possible, but being unable to because of medical treatment.
I hate feeling like a failure because I'm finding it so difficult to be positive right now.
I'm exhausted.
I've had enough of being on this ride. I want to get off. I need steady solid ground where I feel safe, secure and protected.
But I can't have that. I'll never have that. I'm always going to be stuck in this eternal fairground navigating the rides, the bumps, the peaks and troughs. I can only hope against hope that one day it will be more carousels and candyfloss than big dippers and waltzers.
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