Wednesday, 16 January 2013

A new home

Hi everyone, I have moved this blog over to a new account at Wordpress. I made the decision to do this because all my other blogs are there. So please go to to continue reading my story and take advantage of all the interesting articles and reviews I will be posting over the coming months.

I will still be calling by to catch up with all those whose blogs I follow here, so I'm not abandoning you altogether! :)

Friday, 4 January 2013

A new direction for 2013

The main reason I started writing this blog in 2010 was to provide myself with an outlet for my thoughts on dealing with a breast cancer diagnosis and to chronicle what happened to me along the way. I think it is fair to say that thus far, it has not been an easy road to travel with so many awful things happening along the way. I am however, over the worst for now and whilst I will still be adding posts about my treatment and life generally in respect of how it all affects me both physically and emotionally, there are other things I also want to write about.

One of the things I have noticed over the last two years is that although there are some truly wonderful blogs and websites out there, there are in fact very few that offer a place where those with breast cancer can find honest reviews on things like mastectomy bras for different occasions, sizes and budgets. Where to purchase a wig and how to wear it and look after it. What sort of hats suit different faces and where to buy ones that not only fit but do not break the bank! Cosmetics that help make us feel and look a little better both during treatment and after it has finished especially advice on how to do things like drawing on eyebrows during chemotherapy. If like me, you do not live near a support group or too far away from places where you can attend something wonderful like a Breast Cancer Care Headstrong session, information on how to do some basic things like this makes such a difference to your quality of life at a time when small comforts mean a lot.

It's the little things that make all the difference.

Then there is all those important things that help you deal with the effects of treatment. Yes, there are plenty of lists floating around detailing all the sort of things to consider but I could find very few places where there were proper reviews written by those who were actually most in need of the products - us! For example, I wanted to know not just that X type of toothpaste helped with sore gums but which brands were best and why. It sounds silly but you would not believe the difference it made knowing which actual makes of things were the most chemo-patient-friendly and, if you were on a small budget, which of the lower cost ones worked best. I went through 3 different types of toothpaste and umpteen different types of toothbrush before getting a combination that worked for me. As I suffered terribly with Mucositis and mouth ulcers this was a very big deal at the time.

Having discovered for myself just how hard it is to actually find much of this information in just one place, I decided that I would have a go at providing as much of it as I could myself, based on my own experiences and that of friends in a similar position. I will draw on almost 20 years experience of writing various types of reviews in my quest to bring you the kind of information I was unable to find.

It doesn't stop there however because one of the things that has truly aggrieved me since having a mastectomy is just how poorly we are served as far as mastectomy wear is concerned. Yes, there are plenty of very good brands out there selling very pretty bras but at such a cost that for most of us these are special occasion items not ones we can afford for everyday use. Oh and absolutely forget it if you do not conform to what most manufacturers see as a 'normal' range of sizes. If you require a larger cup size then the chances are you will be faced with virtually no choices at all and if like me you are very small, then once again the number of bras available to you is pretty dismal. Then there is the confusing advice about exactly what sort of bra one should be wearing. I have had so much conflicting advice that I really don't know who to trust when it comes to this sort of thing and as a result I've pretty much given up on ever getting something suitable.

The same actually applies to mastectomy-friendly clothing, in that basically it's more a question of finding out all the things that don't work than discovering what does! I used to love wearing dresses now I live in jeans and T-shirts as it's impossible to find things that work in either my size or my budget.

I want to examine why, when so many women (1 in every 8) have to cope with these problems, so many of us are left struggling to find the basic necessities that breast cancer surgery leaves us needing. I will be endeavouring to enter into a dialogue with some of the manufacturers and retail giants to see if there are ways in which some of these issues can be addressed.

That's for the future though. In the meantime I am building up a list of things I have here at home that I want to review for you. I will start very shortly and these will come in the form of both written and filmed reviews, plus I am going to provide some 'How to' videos to pass on some tips I've learned over the past couple of years.

As they say - watch this space! :)

Saturday, 29 December 2012

Building Bridges, Chasing Hope

It's been a long few months filled with some of those moments that so many of us are familiar with - the success, the failures and all the little things in between. In the past couple of months I've had some cancer adventures that I'd rather forget but there have been positive things along the road too.

Shortly after my last entry I had to deal with the horror of finding a new lump in my remaining breast. New tests, more worry but this time just something that needs monitoring rather than definitely being cancer. Still rather scary but not as bad as it could have been. I am back on 3 monthly check ups with my beast surgeon but there is at least the comfort that should it turn into anything worse, it will be deal with very quickly. I'm just trying to push the worry into the background somewhat so that it doesn't become overwhelming.

I have had to finally admit that my health is never going to return to its pre-diagnosis condition. Sadly, whilst treatment may have saved my life, it has also destroyed my health and that's been a pretty hard thing to come to terms with. There are far too many things that I can no longer do and miss so much, so 2013 is about learning to deal with this and finding a middle ground. I will be exploring what I can do rather than focusing on what is no longer possible. I'm not there yet but I do at least now recognise that there are things I can do - I just need to look for them and not set my sights too high.

Realism is the name of today's game.

Other health concerns will need to be taken into account to ensure I don't make myself worse rather than better. I am now on a fairly strong dose of daily morphine to help me cope with the crippling pain in my chest. This makes me incredibly sleepy - I wouldn't wake up in the mornings at all if it wasn't for my lovely husband. I have turned into the 'Sleeping Beauty' but without the beauty bit! :) It's not done much for my weight, which has plummeted, but at least I don't spend every waking hour in pain which is a huge improvement on how I felt just a few months ago.

I have saved the good news for the very end though. . .

Three weeks ago I stopped wearing my wig! I realised that I could style my hair well enough that it was time to put aside my 'security blanket.' My hair is still very fine and thin, and in places there's virtually none at all but it is now possible to at least hide the worst bits. I still wear my lovely long wig which enables me to look like my pre-diagnosis self when I want to dress up, but my every day wig, having served me faithfully has been carefully stored away. It was an incredibly difficult thing to do but I am so pleased that I've managed to do it!

My treat for the new year is a trip to the hairdresser to have my hair coloured and get some help on styling and caring for my new locks.

Am I happy with how I look? That's a tough one to answer because when I look in the mirror I still have trouble recognising the woman staring back at me. Now though I am getting used to her and starting to at least think of her as a part of me, rather than some stranger I do not know.

What does 2013 hold for me?

First off is the hope of continuing to have NED (No Evidence of Disease) as my companion - so far, so good on that score!

As I said above,I am continuing to work on getting more accustomed to the'new me' both in looks and health. This is a task for the entire year, not just a few months!

In other news, look for some developments for this blog; I am planning new and exciting things. More news about this very early on in the New Year.

Meanwhile,  thank you for continuing to share my journey, I wish all my readers a peaceful, happy and healthy 2013!

Monday, 15 October 2012


October is a very difficult month for me. It's the month I was diagnosed in and the month in which I was told that I had no other option than to prepare for a full, possibly radical mastectomy. Even though I'd had weeks of tests and lots of hints based on the demeanor of those looking after me, I still wasn't fully prepared to hear those fateful words "I'm so sorry but it's definitely cancer" words that I will remember for the rest of my life. This was the day that my life changed. . . forever. There was no going back from here and I was so scared about what lay ahead and, as it turned out, completely justified in being so scared.

I'm still scared.

Cancer has turned my life upside down, it has in many ways, stolen my life away from me. Treatment made my underlying health conditions much worse than they were and has therefore robbed me of many things I enjoyed doing - that were an integral part of who I am. People's perceptions of me have changed. I think a lot of them see me as some kind of victim and do you know what I hate the most? It's the fact that in many ways I am exactly that - a victim. It's a hard thing both to deal with and overcome on a personal level but in many ways even harder to change how others see you and therefore how they deal with you.

I am so conflicted! I love the fact that family and friends are so anxious to look after me, it's wonderful to realise just how much they care. What is hard though is seeing the pity in other people's eyes especially those who are not close family and friends. Victim-hood tends to stick no matter how hard you try to escape it.

Of course part of the problem is that I keep on reinforcing the fact that I need to be cared for. I'm so tired all the time, I am unsteady on my feet when tired, I lose my balance where normally I would be sure-footed and yes, like a frail little old lady, I have falls that makes it look like I can't go out on my own and still be safe.

Cancer? Yes, I hate it, what it's done to me, what it's done to those around me and no matter what I try and do to forget about it, it is here to stay. . .

Wednesday, 10 October 2012

Oh my!

There are occasions when I wish I could take some time off the general merry-go-round that is everyday life and these last few days were certainly that!

On Thursday evening after eating a light tea, I started feeling generally unwell. I had an achy left arm and a slight, uncomfortable pain in my chest which I put down to being tired and indigestion. I thought I'd solve both problems by having an early evening snooze but I'd not been lying down for long when I realised that both pains were getting more insistent and one hour later I was in considerable pain. My arm really ached but the pain in my chest was horrendous. I got scared, told my husband how bad I felt and it was decided to call for an ambulance. By this time I was a combination of miserably in a lot of pain and scared about what it all could mean.

The ambulance arrived promptly and whilst yes I was in a huge amount of pain their tests and their experience pointed to it being something other than the dreaded heart attack. Nevertheless it was decided to take me to hospital for further investigations.

I was examined by  a very thorough doctor who said that she thought it was some sort of muscular problem but she wanted to be sure so I had to have some bloods taken and a chest x-ray. The x-ray came back fine but much to the surprise of us and the doctor, the blood test came back suggesting that I might have had a very mild heart attack!

At this point she said that her conscience would not allow her to send me home, so she had me admitted  to an observation ward instead. There was another blood test that could be done in 9 hours time that should give a clearer indication of what the problem was. At this point they gave me a big dose of morphine, some aspirin and paracetamol and finally the pain started to recede.

After an uncomfortable night (not arriving on the ward until 1.30am, a combination of hourly obs, a great deal of pain and very noisy other patients) I was very groggy the next morning. I'd had about 2.5 hours sleep in total.

A consultant came to see me at 10am and told me that whilst the second set of bloods was inconclusive, they would discharge me providing that I got plenty of rest and return immediately if the pain got very bad again. Interestingly, one of the first things he said was to ask where my compression sleeve was, because to his eyes the lymphoedema was quite obvious. I had to explain that the clinic didn't think it was bad enough to warrant one, so he's going to write suggesting that I do get issued with one pronto.
Oh deep joy! :(

I have spent the last couple of days catching up on my sleep, which I have to say was not exactly difficult and I've been good about resting too! :) After talking about it all with my husband, some online research and recognising the fact that muscular pain does not disappear after a few hours, we have come to the conclusion that I most likely did have a mild heart attack. A very sobering and depressing thought.

I feel so frustrated by all of this as a few months ago I was really beginning to feel a lot more like my old self. My strength and general stamina was gradually improving and things seemed generally to be taking a turn for the better. I am still struggling to deal with the physical aftermath of the horrible reaction to the Lyrica. Who would have thought that just a small dose of something would have such a long term effect? I am still quite unsteady on my feet, especially when tired and if I feel a bit wobbly it's really hard for me to regain my balance without toppling over. Yesterday was a prime example of this - I lost my balance trying to avoid a large puddle as I went to get into the car and I could not stop myself from falling over! The combination of all of this has made me feel like a frail old lady which is not the best feeling the world. I will be so glad when things start to get back to a more normal existence!

Saturday, 8 September 2012

Opening The Box

Box opening of the unplanned kind. A box dropped from a great height demanding you open it by landing on your head to inform you of its arrival. There's a big label on the box telling me to 'Remember Pandora' and another that says 'You need to know this - now!' So, just like the foolish Pandora, I opened the box. . . This was something that was better left to a more private setting but unwisely, my subconscious decided that there was no time like the present. I got on the bus, took my seat and the contents of the box washed over me. I panic, gulp back the tears and force the lid back down. I can't do this here and now! I want to but I can't.

Memories, flashbacks, call them what you will, I still get hit with those associated with what we tend to call 'that day.' The day that tried to steal away all my tomorrows. Mostly they are fleeting during the day (nightmares are a whole different thing) they flash into my mind, I feel cold, vulnerable and scared but normally they do disappear after a short while.

This one though refused to go away. It followed me during the rest of my day, hovering, wanting to be noticed, very insistent in an unpleasant way. It stood there haunting me as I sat drinking a coffee, it wouldn't let me concentrate on my Kindle. It would not leave me alone. In the end I could not ignore it or how it was making me feel. I cancelled an appointment and walked down to the river in search of peace, tranquil surroundings and a place to be alone with my fears.

I sat there.

I closed my eyes.

I opened the box.

Impressions wash over me.

I am floating, I am scared, I am dying.

I am in the arms of my loved one who is calling my name, I feel tears on my face and I know they are not mine.

I feel the anguish, the potent emotions of loss and love.


I open my eyes, I take a breath, I am here again.

Please don't let me go.

As I sit gazing over the water, I admire the majesty of a beautiful sunset setting the sky aflame as it turns my tears into tiny sparkles of light. I ask myself if it was a mistake to open the box but then I realise that I had no choice because the box would open whether I wanted it to or not. The contents were overwhelming in so many ways but comforting too because it adds one more piece to the puzzle of what happened 'that day.'

'That day' 

Will I ever stop thinking about it? Will it haunt me both waking and dreaming indefinitely or will the day come when I will know that the box has been gently closed and put at the back of the wardrobe? Something that I may get out and look in when I want to but not something to face every day.

Make that day come soon.

Monday, 13 August 2012


I've just had a letter from my consultant telling me that at this time there is no need to worry. There is a nodule on my lung that they've noted and he's decided to put me back on 3 monthly check ups for the time being.

One incredibly huge sigh of relief!

However, the chest pain continues unabated and has in fact got ahead of my pain relief, not a happy situation to find myself in. Also no help or advice was offered regarding dealing with pain so I am left with the need to go back to my GP and pursue other routes of investigation. Things were so bad on Thursday that I was throwing up as a result of the pain. I have an interim cocktail of drugs that will see me through this week's trip away to visit my mother and then after that I have an appointment with my GP to discuss where we go from here.

My Breast Care Nurse is of the opinion that it is the combination of broken ribs that were irradiated before they had any chance to heal and general damage from surgery and radiotherapy. A lot of people end up with permanent damage (I already have bad radiation damage to my lung) from rads which doesn't really improve. I could be stuck with this indefinitely!

So, a yay for no more cancer but a boo for needing more regular monitoring and no solution to the dreadful pain. I am obviously very happy about the first but something needs to be done about the last.

Watch this space. . .