Friday, 20 March 2015

Menopause, schmenopause...

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.......

Wednesday, 18 March 2015

Stop please I want to get off

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.  

Sunday, 8 March 2015

International Women's Day 2015 Love-in!

Today is International Women's Day. Let's face it - women are fucking brilliant. So I've written this post to recognise some of the women in my life who are very important to me and make the world a better place by being in it!

To my female friends who are not mentioned by name in this post, please don't be offended -  I love you very much and I want thank you for all your support during the last few months.

My mum: she has been my rock throughout my diagnosis and my treatment. I can't begin to imagine how hard it must  have been  for her to watch her child go through such a horrific experience and still manage to keep it together as she has. I will never be able to thank her enough for all that she has done for me. I love her to the moon and back.

Tara: one of my closest friends who I admire greatly. She is clever and successful and has had to deal with so much, well - shit, frankly but has still been there for me constantly during my illness and treatment. 

Sally: Probably one of the nicest, patient and kind people I know and who has listened to me rant on many occasion and is always the voice of reason!

Rj and Angela:  two of my lovely friends who have been fantastic - from buying me lovely presents to visiting me in hospital and accompanying me on boozy nights out when I've been well enough!

Katie: currently undergoing treatment for her second cancer diagnosis and has still found the time to provide me with valauble support.

Rachel: my wonderful oldest friend and part time unicorn!

Natalie, Carly and Cat: three girles who I met in Thailand and am grateful to still be in touch with. Even though Natalie is battling with her own ill health she has never lost her sparkle!

My wonderful gang of breast cancer bitches. Six beautiful women, without whom I would definitely not have been able to get through the last few months. I speak to them everyday about EVERYTHING and in a way I am grateful for cancer because it has brought us together.

We recently met up in London and carnage ensued....

Lots of duckfaces...
Wig swapping...
And gossipping....
I want to say a little bit about each of them, so major slush alert!!

Sarah: I love this girl. She's kind and thoughtful and more beautiful and clever than she ever gives herself credit for.

Aimee: the sweetest thing ever! I think she has sugar running through her veins...

Cinzia: rock chick with an amazing smile and a fighting spirit.

Rosie: I want to be like Rosie when I grow up. She's has been dealt a shit hand but continues to handle it with complete elegance and class.

Andrea: bloody gorgeous and funny with tons of positivity.

JoJo: hilarious, talented and downright naughty. She has also been dealt a crappy blow, but she hasn't let it take away her vivacity and zest for life.

I have admiration and respect for these women by the bucket load.

Of course I need mention Victoria Yates, the founder of the Younger Breast Cancer Network, without which I would never have met them!

And haven't forgotten my other Younger Breast Cancer friends  - Heather, Diane, Tara, Nicola, Laura, Kate, Christina and Hannah to name just a few. You are all amazing Superwomen - thank you so much for being in my life and for being downright awesome.

And to finish I'd just like to say...


Friday, 6 March 2015

Wig Wam Bam!

I've decided to write a post about wigs because as my mum said 'I think only Joan Collins or Madame GaGa have more wigs than you'....

I just want to put a disclaimer on this post that I am by no means a wig expert, this is just a post containing information and tips about wigs that I have picked up during my time as a chemo girl. I've included links and photos in this post which I hope will be useful to my other baldy buddies!

I do currently have A LOT of wigs. I'm not going to go in to numbers, however my wig addiction has overtaken my shoe addiction I think it's safe to say. Anyway, I can't write about them all as that would be far too long a post and probably quite pointless, so I'll pick the ones that I wear the most.

I have bought all of my wigs. You may be able to get a prescription from your hospital however I wasn't able to initially as I tried the cold cap on my first chemotherapy session. At my hospital, you can either use the cold cap or have a prescription, not both. However, I bought two wigs before I started chemo as I knew that the cold cap may not work and even if it did, I wouldn't be able to style or wash my hair very often. I'm glad I did as my hair started falling out just before my second chemotherapy and I didn't bother with the cold cap again.

Although you will more than likely be fine to go shopping once you've started chemotherapy, you may find that psychologically you feel better if you have your wig chosen and ready to go before your hair starts to fall out. 

If you are looking for a wig to wear on a regular basis, I would strongly recommend physically going in to a shop to try them on rather than buying online in the first instance.

I bought the two wigs that I wear most frequently from a shop called Trendco in Birmingham city centre. They also have other branches around the country and an online shop. I can't praise the staff in the Birmingham shop enough. They are incredibly knowledgeable and lovely. In fact, they shaved my head for no cost when my hair started to fall out. 

I always wear a wig cap under my wigs as I find this less itchy. I wear the ones that feel like tights, rather than the fish net type ones that you can get. You can buy wig caps from shops like Trendco or from Ebay etc.

Human hair

My first wig is a human hair wig called Garnet which is a pre-styled wig meaning it comes with layers cut in to it. I have had it thinned out (some of the hair taken out of it) at no extra cost at Trendco. They also cut and style wigs for a charge. Remember that when you first try a wig on it may not feel like 'you' but it is possible to have them thinned out, cut, shaped etc. Just make sure that you have someone who is knowledgeable and trained in cutting wigs. 

I won't lie - the price of this wig is slightly eye watering - £550 but with the VAT off it was around £450. Remember that if you are buying a wig for medical reasons e.g. chemotherapy, alopecia - you do not have to pay VAT on it.

Here is my human hair wig in practice:

It has a monofilament top which means that the parting looks very natural and gives the appearance of hair growing from your scalp.

I keep this wig on a polyhead which cost me £6 from Trendco. I keep the rest of my wigs either in nets or on stands like this:

You can buy these really cheaply from wig shops like Trendco or from eBay or Amazon etc. They are really handy when you are going away anywhere as they fold up flat and can be put in a suitcase or overnight bag.

The benefit of a human hair wig is you can style it with straighteners, curlers etc. I have a hairdressing tripod stand which I put my polyhead on top of to style it before I go out. It also makes blow drying it a lot easier. One huge benefit of wearing wigs is that you can style your hair in advance! The look in the second photo was created by curling separate pieces of hair in the same direction and pinning each one with a hair grip when done. Then the evening that I am going out I let down all the curls and brush it through. Here is a picture of the wig during styling:

I use these products to care for the human hair wig:

These were bought in a pack from Trendco.

I tend to wear this one mainly when I am going out and I wash it afterwards so I probably wash it about once or twice a month. I fill the sink with lukewarm water and squirt some shampoo in to the water. Then I agitate the wig in the water for a little while, rinse and squeeze out and then use the leave in conditioner on it.

Fibre or synthetic wigs

The drawback of human hair wigs is that they require a lot of upkeep and styling every time you use them. For that reason, I also have a fibre wig that I tend to wear more or less on a daily basis. This is also from Trendco and is called Suki. She has a lace top which gives a very natural parting and hairline. Here is Suki in action:

Please excuse the tag still hanging from her - this photo was taken when she was new!

I love this wig. I've never had to have any thinning or styling done to it and the hair falls really nicely. I chose a short wig as I was advised that it wasn't a good idea to buy long fibre wigs to wear regularly as the hair rubs on clothing and can become frizzy.

It doesn't require any styling at all. I wash her about once every two weeks using a shampoo and conditioner for fibre wigs in the same way as the human hair wig, although the conditioner needs rinsing out in this case. I towel dry the wig and then put her on the polyhead to dry. Sometimes I put some velcro rollers in as the wig is drying to give it more bounce.

Everyone has different ways of caring for their wigs. As I was spending so much money on the wigs and wanted them to last, I decided to buy the products made specifically for looking after them.  

One of the main advantages of a fibre wig is they require very little upkeep and styling - you just pop them on your head and go. They are also a lot cheaper than human hair wigs! However, you are limited to one style really as you can't put any heat on them as it melts the fibre.

Cheaper wigs

Now on to the cheaper wigs. I have a number of cheaper wigs that I've bought from places like eBay which are great for a bit of a change now and then. I've bought a number of them from this seller who has a range of 'celebrity style wigs' at prices around the £20 - £25 mark.

I have the 'Jessica Alba':

Here she is in action:

This wig has a really lovely brown to dark blonde ombre dye effect and the hair feels really natural. However, quite often with cheaper wigs the parting can look a bit dodgy and false so I normally wear this wig with a hat or a band. The above photo is me with a beanie hat on and the below is a chemo chair shot wearing a knitted band from H&M:

I also have one of the Jessie J ones:

I don't wear this one down as I find there is too much hair and it feels like I have a bit of a mane, so I tie it up like this:

Yes you can still tie wigs up! When I tie this wig up I always tape it on as it wouldn't be secure enough to do it otherwise. I use normal wig tape that I buy from Trendco. I use a piece on either side of my head at the temples, one at the front and one at the nape of my neck. 

I pull it loosely on to the top of my head, and use a bobble to put the hair in to a ponytail, keeping the ends tucked in the last time I pull it through the bobble. You may find the hair is too heavy to sit properly on its own - I normally secure it with a crocodile clip and some hair grips.

Make sure when you tie a wig up that you pull the hair down around the nape of your neck or 'bag it out' to cover the bottom of the wig which is a sure giveaway sign!

I also have a couple of wigs from this seller who sells surprisingly natural looking wigs at around £15. I have these two:


The hair is really good quality and feels incredibly soft and natural. The only problem I've found is the that the wig cap was too big for my head and meant that the hair didn't sit properly. So I've altered the caps to make them smaller by folding and stitching the cap at the bottom near the nape like this:

It actually works to make the cap smaller and it's totally undetectable when looking at the wig from the outside.

Crazy colours!

Who doesn't like a bit of colour in their life right?

I decided I wanted to try out the Katy-Perry-meets-unicorn look  - you can get some fantastic looking colourful wigs from Geisha Wigs, however I wanted one that was human hair so I could curl and style it.

So here is what I did....

I found a (very) cheap blonde human hair wig on eBay. You can only really dye human hair wigs. There are ways of dying fibre wigs I think but they are quite complicated and involve buying expensive products. Blonde is the best colour to use as bright colours will not show up on darker wigs.

Here is the wig before the dying process:

I used La Riche Directions Semi Permanent hair dye  in Lilac:

I put the wig on my polyhead and used a hair dye brush and bowl to apply the dye. As a result poor poly looks like she has some sort of contagious disease.... Here is the wig after the dye was applied:

And here is the finished product:

Voila! My Little Pony-esque hair!

So - this is basically the majority of the stuff I've learned about wigs squashed in to one post. If you have any questions all, feel free to contact me through here or Twitter -

Wig love people!!

Thursday, 5 March 2015

Hair we go again!

Whilst my friend Sarah is writing deep blog posts about the meaning of life and death I am going to write one about......eyebrows!


And some eyelashes.

Basically this post is just an update on the old hair situation, following on from the one I wrote in December.

I had my last chemo session on the 16th of December 2014.


Amazing. I still have to draw my eyebrows on as they are still quite sparse and my upper lashes are not long enough yet for me to feel comfortable going without falsies but I can now put mascara on my lower lashes. That was a momentous occasion.

And it is definitely more than I had back in December, as seen below:

My chemo induced dark circles have also improved which is a bonus!

And here is my head:

And the back...

And the side:

I've shaved it once since I finished chemo - I think probably in January.

Even though it's still not enough to go without a wig, it's a lot more than I had way back when:

Smooth! Full on cancer patient mode.

I'm still using Fast shampoo and conditioner (yes, I actually condition my fluff) and the Lush shampoo bar which is a lot easier to take on trips away and takes up a lot less room in your suit case.

Unfortunately the arrival of head and face hair has also been accompanied by that of the leg and other body hair. So it's back to the razor. When I can be bothered. 

From the real to the fake - this post leads me nicely in to one about everything I've learned about wigs. Enjoy!

Tuesday, 3 March 2015

The results are in......

A quick update about the results of my surgery...

I went to the hospital on Friday to get the results from my mastectomy and node clearance. I sat in the waiting room with a touch of PTSD and a lot of a hangover (more about this in a later post) getting increasingly more nervous. Eventually the surgeon called me in and in the 30 seconds that it took me to sit down and for him to speak, I had once again imagined the worst possible scenario. I'm getting good at that.

Anyway, here it is in a nutshell:

The tumour measured 20mm and there was no more cancer in any of the nodes - so only one node with cancer in overall. 

I also had intermediate grade DCIS. DCIS stands for Ductal Carcinoma in Situ which means that its a kind of pre-cancer - it's cancer that hasn't yet developed the ability to spread outside the ducts and so is not classed as invasive. It is apparently quite common to find DCIS as well as invasive cancer. 

The cancer is grade 2 which is middle of the road as far as aggressiveness goes.
There are three grades of invasive breast cancer:

  • grade 1 (well differentiated) the cancer cells look most like normal cells – for example, they are of similar size and shape to normal cells – and are usually slow-growing
  • grade 2 (moderately differentiated) the cancer cells look less like normal cells – they are often larger and show variation in size and shape – and are growing faster
  • grade 3 (poorly differentiated) the cancer cells look most changed and are usually fast-growing.

Grade is different to stage. The stage of my cancer, according to my histology report is stage 2A.

Very good margins around the tumour which were all negative (basically no cancer cells found in the tissue around the tumour).
No vascular invasion  - vascular invasion is when the cancer breaks through the walls of the blood vessels in the breast and it increases the chance of the cancer spreading to other areas of the body.

The tumour is 8/8 oestrogen receptive which is the highest it can be - we knew this from the biopsy but they retest these once the tumour has been taken out.

Still awaiting the HER2 result - this was negative from the biopsy and this is apparently very unlikely to change, however it still does need to be retested.

There was lots of other bits and pieces on there but the above are basically the important bits! The main thing that concerns me is that the tumour that was taken out was still all made up of invasive cancer however none of the medical professionals I've spoken to seem to share my concerns!

So what happens now? 

Throughout the whole treatment process I've been told that I will need radiotherapy however due to the fact that there was only one node overall involved and the margins were large and clear, the surgeon has told me that this is now up for discussion. I'm not sure how I feel about this. On the one hand, I feel like my body has been through so much that that if I am told radiotherapy will have very little benefit, I'm inclined to not put myself through it. Although nowhere near as bad as chemotherapy, it does bring with it its own side effects, including skin damage, possible lymphoedema and damage to my reconstruction. However, I also feel like I want to have everything they can possibly throw at me. None of it is foolproof, but at least I will know that i have undergone all treatment possible. 

The surgeon has started me on a hormone therapy called Tamoxifen, which I will need to take for five years, perhaps ten. However, I'm being referred back to my oncologist to discuss ovarian suppression as well  - this is basically the shutting down of the ovaries with a drug called Zolodex with the aim of reducing the amount of oestrogen being produced. However, it does bring with it more side effects, including hot flushes, weight gain, osteoporosis and mood swings. Looking forward to being an irritable, fat, sweaty Betty with brittle bones then! To be honest, I'd take that over cancer any day. 

Now is a strange time. I feel like I'm in limbo. There is a chance that active treatment for this cancer may actually be over for me now, although I think it is likely that they will recommend radiotherapy, so perhaps not just yet. I'm full of contradictions. I feel relieved, but at the same time scared to feel too happy or positive just in case it bites me on the bum. Breast cancer can be a persistent disease that often likes to rear it's ugly head just as you think you've seen the back of it. Catching breast cancer early does not guarantee a positive outcome. In fact just writing these words makes me feel incredibly nervous, like I am somehow tempting fate. But then I don't want to spend precious time worrying about what might happen because as I know far too well, life is too short to spend it being miserable.

I feel excited about the future and a life rediscovered, but at the same time I feel hesitant and afraid of what it holds for me. The uncertainty feels almost overwhelming at times and I often wonder how I am going to be able to live happily and productively with the menancing cloud of cancer hanging over me.

I want my old life back, but I also want things to change - I want to feel that my presence in this world (however long that may be) is making a positive difference. I've been given one huge wake up call - I've stared my own mortality directly in the face. Where do I go from here? If the cancer really has gone, how do I use the second chance that I hope I have been given?

I feel like I should be making plans - there are so many things that I want to do, places I want to visit and ambitions that remain unrealised. But then, my life is still on hold. Because this isn't over just yet. Friday was one in a long series of hospital appointments and medical discussions that will continue, at least for now.

However, I am going to draw myself back in to the present and deal with the here and now. I'm going to tentatively allow myself to feel positive and try to deal with and enjoy each day as it comes.
I'll also be repeatedly reminding myself of this mantra: