Monday, 30 May 2011

Thank goodness for bank holidays......its really helped restore me a little more. Friday started well with a lovely time with friends and then finished listening to The Firebugs. They are fantastic.I managed to stay awake and so glad i did. The highlight for me was my son singing a beautiful song he wrote and they dedicated it to me as he started to sing.Wonderful.

My heart was full and indeed it was an emotional evening. It was my reminder that this time has been an emotional roller coaster not only for me but for others who care for me too. And I do feel guilty about that but its also shown me how rich I am in love and friendship.

Writing the blog has also connected me with wider communites and I have loved hearing from you all in the different ways. The impact breast cancer and its treatment is huge for so many of you.I fully understand that the impact for me will change but continue to affect me in some way.But for the many people whose breast cancer has spread the impact will be much bigger. For some it means constant treatment like chemotherapy with all the side effects on an ongoing basis-a constant part of their lives.And this goes on for years-how hard that is for them and their loved ones.This takes such energy and courage to face such challenges for so long.


From my work I know so much of this is hidden and we dont know how much support is needed because this information is not currently collected consistently by the NHS.But we also know that as treatments such as those Breakthrough's research is helping to develop will help more people survive hopefully with fewer side effects of treatment.  Its so important this lifesaving work continues and the results get to those who need it quickly. 

Reasons to be cheerful are being treated to a lovely weekend with family in a beautiful bed and breakfast over looking a sea loch watching gannets dive for fish. We also saw the most spectacular rainbows....which probably tells the story of the weather too.The consolation was good food and even better company-and I will confess to a glass of champagne too! Good times.





Thursday, 26 May 2011

Reasons to be grateful

I have noticed how many people have been advising me to look after myself this week. Looking in the mirror, inspite of wonder women eye shadow and the rest, I understand why.I do look rather drawn and dont expect anything sensible out of me after 9 o'clock.

I suspect while being delighted about my results and having a real sense of delight at having my summer back I need to remember I still need to give myself time to heal from all that the last few weeks has thrown at me. And of course its not over yet either.

But mostly I am feeling very fortunate. Knowing that I wont need to rush into any more surgery has freed us up to look at holidays. Our plan is to holiday with my step daughter and her children. My recent diagnosis has brought back to them the loss of their much loved Mum and Grandma-I am so glad we can enjoy precious time together-and I am so grateful for that. These experiences teach you to savour life there is no doubt.

I have also been in contact with a good friend of Breakthrough Breast Cancer whose own cancer has spread further. She has been benefiting from hospice care and has shown her remarkable courage yet again. I completely understand when she says that the hardest thing is the impact on your family. Its such a strong need to protect your children if you can-but the cancer means this isnt under your own control.She and her family are in our hearts and  her situation reminds us ( not that we need it really) of the importance of what we do as a charity.A future free from the fear of breast cancer is our mission. Its getting closer but too far away yet.

Reasons to be cheerful: Its great being back in the office and being with the team again.The moment one of the team shared the secret of how to achieve smooth lines under a wedding dress was a comedy moment to lift any tired spirit! Also I am going to see The Firebugs tomorrow-the band my son and his girlfriend are in. Cant wait.

Tuesday, 24 May 2011

Wonder woman??

Who stole May and made it November? What a day yesterday was. As the weather unfolded, my own personal dramas were coming more to the fore. Approaching results days are always hard. Yesterday was my first day back and my decision was to keep busy and I certainly achieved that!

To say I was exhausted at the end of the day was an understatement. Every time I thought it would be nice to put my head down on the desk I realised perhaps I had returned too soon. The keeping busy strategy isn’t always good for convalescence I guess.

In the midst of all that I spoke to Professor Dixon who gave me my pathology results and it was great news-very little extra disease and nothing invasive. I felt a huge burden lift as he said this. Although as I have said from the beginning this was very early disease there is always that fear that maybe pathology finds something unexpected-and they didn’t.

Having this information before my appointment the next day was so very valuable. The team understand that assimilating information a bit at a time is vital. So having this to hand stopped me rehearsing the different scenarios in my head.

I always felt fairly sure I wouldn’t need chemotherapy as long as no invasive disease was found and I knew I couldn’t have more radiotherapy. So further treatment if needed will really centre on surgery or drugs like tamoxifen. I had tamoxifen for five years previously and I will admit that the day I stopped them I beat up the remaining ones with a rolling pin!!! I do feel a bit silly admitting that but its true-i hated taking it.

I didn’t however want to come off it as it was one of the ways I felt I could ensure the cancer wouldn’t return. As a Mum of young children at the time I felt I had to do everything I could to ensure I was there for them. One of my friends lost that battle when her children were still at school and I knew it could happen to people like me. But this is a different stage in my life and I would make a different choice now I think-especially for such early disease.

So I now know any further treatment is preventive only and there is even possibly an option of doing nothing more now but I am not sure I want to be back here again any time soon………..so I have a dilemma. A good one in so many ways and I know this.

Reasons to be cheerful: well that’s not hard, it has to be my results! Additional reason, if rather trite by comparison is that I have had my Wonder Woman eye shadow on too. I know you thought I was joking but it’s a special addition Mac set that I got for mothers day. Every time I open it up it makes me smile and embrace my inner wonder woman. Not sure I could pull off the wonder woman outfit though-especially just now -I am sure there has to be bit of under- wiring there?

Monday, 23 May 2011

Feeling good?

My thoughts are turning to going back to work properly.  And it’s the important issues that are to the fore. No not the new politics of Scotland, not the meeting I am chairing in the afternoon, nor the 1-1s planned or the many emails. No its the what will I wear dilemma. Don’t misunderstand me this isn’t a deep-seated trauma as a result of my recent surgery it’s a fairly typical day really. But there is the complication of the current advice about not wearing under-wired bras.

I tried to contain my horror of the potential quality of the non wired bra variety but finally had to enlist the support of my son’s girlfriend. The men in the family are impressive but there was too big a risk of re-enactment of the episode of Father Ted when the priests got trapped in the lingerie department. So she went to the Mecca for every variety of nice lingerie. She did a marvellous job so I will emerge confidently and comfortable to work. God bless you M&S.

And not just for having such choice especially at times like these but also for having the kind of staff who are kind and especially sensitive too. I know the first time I put something I felt good on, it was a big step towards my recovery. Their changing rooms also contain our TLC information. One of our friends and a supporter of Breakthrough found her own breast cancer early thanks to M&S stocking our pins in Breast Cancer Awareness month. She read the TLC advice and realised that the wrinkle she had noticed on her breast could be sign of breast cancer and had it checked. She has been successfully treated and is well now thanks to her own actions and the fine partnership between M&S and Breakthrough Breast Cancer.

 Through their efforts they have supported our Breakthrough Generations Study and other life saving research across the UK, they have promoted breast awareness through our TLC campaign and as I have said supported many women like me on their path to recovery. Thank you, it truly makes a difference.

Reasons to be cheerful today are again about music. To reward ourselves we bought tickets to go and see The Webb Sisters  on Sunday night . They sang with Leonard Cohen on his recent live tour. If you want to listen to a little piece of paradise go to You-tube and search for Leonard Cohen and The Webb Sisters-“If it be your will”-it’s a wonderful way to start the week.Enjoy.


Saturday, 21 May 2011

Being Gleeful

Having made the decision not to officially return to work until Monday I retained my plan to go into the office on Friday to join with the team for a get together, culminating in a team karaoke session. What a good decision that was. I can sense some of you recoiling at the very thought but it was therapy on so many levels.

Those of you who have returned to work after some challenging event, be it illness, bereavement, relationship breakdown will know there is that transition when people don’t quite know what to say or do. I have found in the past, I then start to take responsibility for how they are-and I know I’m not alone in this. So going back for a fun event was great. Of course everyone said how are you but after that it was about having a good night.

Another impact of the blog is that the people who are following it for whatever reason are actually up to date with what is happening and it doesn’t need me to repeat the story lots of times. This is such a relief and keeps friends, family and colleagues involved without having to be endlessly on the phone. Last time when I had the second lot of surgery we went to the cinema the night before it to get away from the phone-and to have a laugh. Another good decision.

Texting and tweeting I love for different reasons but again give a link to the world out there-when you yourself are not able to engage as you may want to. I wonder if there are not more ways these different forms of media could help people transitioning with illness or cope with un-wished for social isolation. Blog therapy-you heard it here first ( maybe?)

But yesterday was really about the music. I started the day Gleeful-receiving a selection of Glee music from my daughter through the post. Again I hear the purists shudder but its hard not to feel uplifted (and in my case not join in) as soon as I play it. I am playing it as I write and its super-current favourite the Fleetwood Mac covers- I am a self confessed aging hippy! So the music is back.

Reasons to be cheerful has to be about the music: Team Breakthrough-you are karaoketastic! Ever in my memory will be the all team renditions of the Greece megamix and of course the Breakthrough Breast cancer anthem Don’t Stop Believing (the Journey version not the Glee one of course:-). As for the Bon Jovi and Jason and Kylie renditions-I cant even begin to describe the impact-but fortunately didn’t burst any stitches. And what did I sing on my own? -Well it had to be…… Thank you for the music-the joy you’re bringing. Indeed.

Thursday, 19 May 2011

But why?

I started today trying to get more information that may help me make my decision in time about further treatment. Through my work with Breakthrough Breast Cancer I have access to the best information, be it on family history of breast cancer or the best treatment guidelines and this is hugely helpful to my family and to me.

It struck me as I analysed things that often this is part of a diagnosis-this searching for meaning and trying to make sense of it. We all try to link an illness like breast cancer back to an earlier stress or accident or exposure to an apparent risk. I remember first time round people saying to me it was perhaps because I worked too hard and put too much stress on myself. This really made me  feel guilty and upset me. Was that really true? Did I want to change? I remembered telling my GP I wasn’t about to take up knitting! (I know its fashionable again but still…)

Breakthrough set up the Breakthrough Generations study a number of years ago now and it will run for 40 years with 100,000 women taking part, all striving to find the factors that cause breast cancer. Its one of things I feel such pride in as I know it’s really important to all of us affected that we know what to do to reduce the risk for us and our daughters, sisters, nieces and friends. Its never, I expect, going to be a simple message but we need to know what will help and how to achieve it. In the meantime what we know is, its all about good health messages-keep active, keep your weight down and don’t drink too much. Damn -I had hoped it might be easier-like eating some berry or other!

And on the subject of working too hard the GP persuaded me it was sensible to stay off till Monday. I know she is right so taking that advice. Still failing the mascara test today but I did try some blusher-sadly made little difference. Good decision re waiting till Monday I think.

Reasons to be cheerful: Flowers- I am currently rivaling the Botanic gardens in my house-I love them! I will be charging admission soon. The admission price will be a good book to read. Also providing tours of the kitchen, which is looking great, if you are interested?

Wednesday, 18 May 2011

Music and mascara

I have been off work for a week now although will admit to having had some attachment to the blackberry. Is it an obsession or just a need to stay engaged with a job I love? Maybe its also about staying linked to the normal rhythm of my life, balancing complex demands and exploring opportunities to make a difference? It’s a big bit of who I am after all.

We often assume that peoples first reaction to a diagnosis of cancer is fear of dying or treatment but its often also about how will it impact on my job, my relationships, my holiday plans etc. Lets face it for many its also how will I pay the mortgage and will it affect my employment prospects. All legitimate concerns that are in the mix at the 2 am shift of the insomniacs.

A week in I am wondering when is the right time to go back. I cleared my diary until tomorrow (ever the optimist) and put contingency plans in for Friday but seem unable to make a decision….perhaps there is a clue there, I know. I did go out today and survived so that’s one tick in the box.

I noticed that although my norm would be to listen to music I haven’t done this since my op. Is that telling I wonder. My i-pod is my constant companion but somehow doesn’t feel attractive just now. My current walk to work music is the Travelling Wilberries ( love it!) and my favourite reflective music is by the master-Leonard Cohen. Cant decide if I start listening to Leonard I should see that as a good or a bad sign…………..however I want to share this verse with you as its so comforting to me at the moment.
“ Ring the bell that still can ring. Forget your perfect offering. There is a crack in everything. Its how the light gets in.”
Don’t think it will be one of the karaoke options.

Reasons to be cheerful today are: Nice new top on and friends are on their way round to see us this evening. Another friend explained that she knows her Mum is better when she has the mascara on. Failing the mascara test currently but maybe tomorrow? The pinnacle will be my Wonder woman eye shadow. Cant wait.

Tuesday, 17 May 2011

Universal truths and karaoke?

Your lovely, thoughtful and warm messages are helping me feel less self indulgent for writing this blog. Indeed one of reasons for doing this is to share a universal message really. Its universal, not only as a breast cancer journey, but also as that of any major illness. Two good friends have recently spoken to me of family member’s diagnosis of diabetes and how they have at times felt scared, distressed, overwhelmed and even guilty. I recognise all of these emotions.

One of the universal messages for me is that receiving care which informs, supports and allows you to address the issues presented by your diagnosis full on and find your own answers to it ,is not a luxury but has to be a fundamental part of your care. And its sound economics too. Whether that’s helping to prevent common complications like depression or helping people get back to work.

But its also true that while breast cancer has a universal impact it is also unique. The uniqueness is because it has such an impact on women as it affects such a fundamental part of our femaleness, our breasts. I think over the last 16 years I have eventually accepted that having had surgery on my breast has not made me any less of a woman. It took some time to regain my confidence if I am honest-and I don’t want to lose it again. So to all of us who have lost some or all of our breasts lets celebrate who we are and use this experience to remind us to enjoy life and be all we can be. I can feel a karaoke number coming on……!

Reasons to be cheerful-This morning had a lovely visit from my Mum and my sister. We had a serious political discussion and a good giggle too. Perfect! Also I had special time on the sofa with Koshka the cat and looked round my new emerging kitchen with great excitement. Does that mean I might have to find time to cook on occasion once its finished?

Monday, 16 May 2011

Boob cap baby!

As I emerge from sleepiness post anaesthetic and re-engage with things my mind is also moving forward to getting the next lot of results and what that will mean. I know I am not alone in listening intently to every nuance, every word, every shrug of the shoulders or look of sympathy and trying to build meaning from it.

 A surgeon as experienced, as Professor Dixon knows this very well and chooses his words carefully as he talks to me after the operation. I noticed he was encouraged by not having had to remove so much tissue this time and how I hope that means perhaps there wont have to be the next stage surgery after all. But of course that isn’t what he is saying. But maybe, just maybe he is leaving the door open for that?

I share this with you not because I know the answer but merely because I am examining that question over in my head. I caution myself not to get my hopes up but its hard not to. It’s another week till I get the results so distraction is the only way till then I suspect.

Breast cancer treatment is complex and deciding about treatment requires a good level of knowledge, an ability to understand and analyse risk, self-awareness and good people around you to help you know and accept what is best for you. The mantra of those looking after me in Edinburgh is take your time-you don’t have to rush a decision. Its good advice but what about those who don’t have that knowledge or support, who are scared by the word cancer and make quick decisions they then regret?

In time with the move towards personalised medicine- the progress helped by our research in Breakthrough Breast Cancer –these decisions will be more informed. But we will also need to enable people to be guided through these decisions-as this process will help them deal with the impact of the treatment in the longer run.

My head is not only there, its also been in trying to deal with the how do I shower/wash my hair and keep my wound dry too. My fabulous daughter suggested a boob cap (shower cap adaptation). Sadly I had to email her at work earlier to say that it worked for a wee while but fell off eventually. So the plan for Dragons Den and the advertising jingle to the tune of “love shack” ( try it-boob cap baby!) have to be shelved meantime. Keep working on it hon there’s a gem of an idea there.

Reasons to be cheerful today are. The hair got washed, got some lippy on and feeling more optimistic I might get to the team night out and hear the karaoke talents at the end of the week. More of that later…

Sunday, 15 May 2011

Its not just me.......

When I speak to people about breast cancer as part of my job with Breakthrough breast cancer I often say that breast cancer affects families not just individuals and this has never been more apparent to me than now. This story isn’t just mine its my family and friends and colleagues too.

My husband is a volunteer counsellor and has had to suspend his volunteering meantime. You need emotional capacity for counselling and this experience was using that up. My step daughter has found my news difficult because although she knows its different-it has taken her back to when her Mum died far too young of breast cancer just a few years ago.

 My daughter being away from the family at this time has left her perhaps worrying more than she would if she was here herself. And of course she has always known that the age of my first diagnosis means that she may be at slightly higher risk herself.

For my son its hard too but he can help with a well timed hug or offer to make dinner-but its still impacting on him and his girl friend too. If I could take this away from them all I really would want to. The hardest thing for me is knowing that I cant.

For my Mum I am still her daughter and perhaps the hardest day for me was going to tell her that I needed to have treatment for breast cancer again. Although I have stressed to everyone it is a very early stage, it does require treatment and therefore is significant to all who care about me.   In many respects I think the impact is worse for them than it is for me. In some ways I feel something of a fraud and want to say “ calm down dear”
(to borrow a phrase!)but also recognise how I would feel with the boot on the other foot.

So I guess I have to accept that this has an impact on others, my lovely family, much loved friends and colleagues too. I cant avoid that but I am hugely supported and warmed by all their messages of love and care and this is my way of saying thank you. It is helping me so much. I feel spoiled and hope I can be worthy of itJ

Saturday, 14 May 2011

Show yourself some TLC

If ever anything had a relevant double message for me at this time its this one. Knowing how to be breast aware using our TLC-touch look check message has meant that i have found cancer very early for the second time.For Breakthrough Breast Cancer it is a key campaign as we know early detection and diagnosis is the bext predictor of a good outcome.This experience is making me evangelical about this message-look up our website breakthrough.org.uk or check out our iphone app for more details-ibreastcheck.

But its also that reminder to look after myself and take time to recover-not something I am good at as a rule.The cat and I are laying claim to the sofa these days-surrounded by books, DVDs and my laptop. He has taken to my dressing gown in a rather worrying way-he's going to be disappointed when he realises its just a fluffy pink dressing gown.......

Before my op we managed to go to the May Island in the Firth of Forth to see the largest group of nesting puffins in the UK. It was really amazing. They are the most appealling of birds and it was a trully magical day. These experiences do come sharply into focus at times like these. Since the visit I have followed our guide on twitter and he has just tweeted to say that the first puffins have been seen with sand eels in their mouths. A sign that pufflets will soon be seen. Two questions-would I survive the trip just now? And is there really such a thing as a pufflet? I think I know the answer to the first one but what about the second?

Its not only the eurovision song contest tonight ( and I cant even go out-help!) its also the London Moonwalk. Good luck to all the Moonwalkers-its an amazing experience to walk togther through the night with the common purpose of supporting people affected by breast cancer. Its life changing in all ways really-whether its funding vital research like our Breakthrough Generations study or by being part of something so amazing. I will be thinking of you-hope it stays dry and you can work those outfits.

Reasons to be cheerful: Have taken off the anti-embolus sox and re-painted my toe nails.......if only I could go out and avoid the eurovision song contest too....lucky Moonwalkers!

Friday, 13 May 2011

Tea and twitter

Tea and twitter

Yesterday it seemed to all be about tea and twitter. I was admitted into the day unit at 7.30 fasted and ready to go for treatment for breast cancer for the second time in my life. Twitter helped me feel in touch while i waited to go to theatre at 1 pm and I had mentioned needing tea to everyone I spoke to and on twitter several times. I think maybe there is something like catnip in it?!

What a fabulous team they are at the Western Breast Cancer unit in Edinburgh. From the famous Professor Dixon there from dawn till dusk making everyone in his care feel special to the nurse who risked the wrath of the catering staff to find gluten free bread to make me toast. I felt informed, safe, supported and cherished throughout and then got home to my own bed at night.Result.And tea and toast never tasted so good.

I was amazed to learn that i had to walk to theatre.Tried not to think of the green mile! I could see it created a different dynamic, a more empowered process as it is designed to,reducing stress as a consequence. Even as I walked through the hospital in my theatre gown, anti-embolus sox, dressing gown and NO MAKE UP (saying hello to work acquaintances!)I recognised the value……nearly! I was mightily relieved when I heard I didn’t have to walk back.

How helped I am by all my family and friends being in touch-and how many ways there are to do that too. From the blog contacts, tweets, texts, emails and good old fashioned hugs I know how fortunate I am. I was reminded of that last week on a visit to Lewis.

I met a group of fine women who had come together to support each other following a breast cancer diagnosis. I was struck by their stoicism and understated kindness.  One of the women during our chat made me laugh and cry. She had been widowed and also had lost both her sons and told me the worst part for her was no-one to support and comfort her when she went home from being told she had cancer. 

It reminded me we musn't forget that caring for especially our older people doesn’t end after they close their door at night.The breast support group are her life line-the power of volunteers and the milk of human kindness. 

Reasons to be cheerful: The wonderful network of support I have and special time today with my friend which is a rare treat.And now Chris and El hve arrived to make dinner.I am a lucky woman:-)

Wednesday, 11 May 2011

Last day at work before my op.

It’s like that day before you go n holiday-wondering if you can get it all done but without the good bit to look forward to! At some point of course you cut your losses and try to get some realism in to the plans.
The uncertainty around plans and dates have become something of  a frustration and although the surgeon said this doesn’t have to take over your life, at some level I am beginning to accept that I cant control all of this even with a very flexible and personal service like the one offered here. For a control freak like me (there is some insight) that’s a hard one. I remember previously feeling like I was on a runaway train without knowing where and when it would stop. It’s not as bad this time but its still there a little. Maybe I understand the terrain and have travelled this journey before- I just don’t necessarily have the access to the emergency stop!
If truth is the first casualty of war, then sleep is probably the first casualty of this experience of having treatment for breast cancer. I am measuring my wellbeing just now by how well I sleep. All those thoughts that my busy life holds at bay can sneak up on me around 2 am. Usually I am writing lists about what I still need to do for work, for my new kitchen ( we are in the middle of building an extension-not great timing) and what I need to buy to ensure I wont be embarrassed by my PJs should they be seen in public!
One strong memory from last time was waking my husband in the middle of the night to suggest he needed to be screened for diabetes because of his family history.( I have always been committed to early diagnosis you see!) My worry was for my children-having faced the fear that I may not be around for them then I wanted to ensure he would be. It made sense at the time but perhaps could have waited till the morning. He did point that out kindly and we both burst out laughing at how mad I sounded (!).
I can recommend laughter as great stress reliever.
As a parent your need is always to protect your children-what is lovely for me now is to see them reaching out to help me too.
Thanks to all of you who have responded to my ramblings already. It’s great to hear from you.
Audrey

Tuesday, 10 May 2011

Welcome to Audrey's blog

Hi I am Audrey and I am the Director for Scotland of Breakthrough Breast Cancer. I am also a wife, a daughter, a mother, a step mother,a sister, a friend , a colleague and many other things too! So why do i want to blog? I recently have been diagnosed for the second time in my life with early breast cancer-the first time was almost 17 years ago.The difference in the impact of this diagnosis has been stark for me and through this blog I wanted to explore why some of that is. What makes it different now for me, does working for  Breakthrough Breast Cancer make it harder or easier even? What difference does it make now my children are adults?What can i learn from this to help me come to terms with the impact of having breast cancer twice and actually use the process of writing it down to help me think it through.
I also want the blog to help me connect with others to help them through my expereince, either to ensure they show themselves some TLC ( thats our breast awareness message) or to help them through a similar journey of transition whatever that is.I can also share with all of my connections my reflections that may help them in their own work or personal world.
Its a bit strange writing this and not knowing who will read it ( if anyone!) and what their reaction will be but i guess i will get use to it. I hope to do a wee post most days when i can would love to hear back from you.
I suppose for me this is also about finding my voice in this fairly unique situation I find myself in and using that voice to share and shed my own burdens. And also the love and laughter that these times can evoke.
Audrey