Tuesday, 24 April 2012

A year on....

Three weeks on now and much of the bruising is going which makes the wardrobe decisions easier if I manage to head out. And with growing confidence in my recovery comes the risk of forgetting advice on what not to do. So when I carried a basket in search of percy pigs and the like at the weekend I just forgot not to carry too much. The result wasn't just significant pain for a few days ,  it was a real bursting of the bubble...and bubble i did. No lasting damage happily and as my son sagely said no harm in such a reminder of my vulnerabilities. I am coughing a bit too and the rash remains on my face, so i am back to more carefully pacing myself again. Honest! We celebrated my husbands birthday yesterday and I recalled it was therefore my one year anniversary since being re diagnosed with breast cancer. We were together as a family when I was called to confirm the diagnosis I was expecting. And consequently headed forth into a year that we were not expecting. The first year in our new house was to be about fun and new beginnings. Well it's not been that I suppose but it's had some great moments too. These diagnoses also help you savour the good bits a fresh.  So I may have a a year of re visiting old demons and surgery and depleted well being but it's had it's highlights. Although my energies have not been great I have supported the team to have its best year yet, I got through to the finals as female director of the year in the Institute of Directors awards, we have completed our extension and have wonderful new kitchen ( my favourite spot in our new home), we have enjoyed city life and good times with friends and family, I have rediscovered a joy of writing through this blog, I have seen friendships grow and made even made new social media friends too, thanks in the main to my blog and twittering!Thanks to all of you who have supported, followed and cheered me along the way, this last year. You have made it so much more doable. This time just now is about allowing me to fully recover from the recent surgery and the impact of this last year .But  I am damn sure ( ok will admit to anger now and then!) I am not letting this b****y disease define me as a person! I am much more than Audrey who has had breast cancer. However this whole experience has contributed to the person I am , both the strong and the fragile parts. And I am OK with that too. Reasons to be cheerful. My son and his girlfriend and two other friends are doing the Hairy Haggis Relay( yes that is the name i jest not!) part of the Edinburgh Marathon together in support of our charity Breakthrough Breast Cancer. They will be one of the Mikes Marvels team supporting my surgeon Mike. You see he is not only a world leading surgeon ( its offical not just my vote!) but he also supports our efforts to raise vital funds for our life changing research. I am so proud and deeply moved that they are supporting Mike and Breakthrough in this way.  I am sure he will be too. Their team is called the Macaroons as the decision to run was made at a dinner party, when fulled by macaroons and wine they committed to the run!! If you would like to support them here is the link to their page. www.justgiving.com/themacaroons . Thank you!

Friday, 20 April 2012

Walking and singing maybe but knitting...that would be a no!

As regular readers of my blog know I was flattened by a chest infection in February and I worried how it would affect me for my imminent surgery. But also I was concerned that in six months I had had two really bad spells of asthma, an unusual pattern for me. My own feeling is that because my main coping strategy had been to keep going and not let the recent diagnosis dominate my life, I had not given myself the space to acknowledge the impact at all. So I decided to seek some support with it. I created the space if you like to talk it through and ensure I considered other coping strategies. It was really helpful to let go  the coiled spring tension, that I had unconsciously garnered to keep going. Of course for me this recent experience also takes me back to the previous time I had breast cancer. Perhaps my biggest discovery was linked to talking about my fathers death just after my treatment-such a hard time for us all as a family. Did it stop you grieving for him I was asked.....no I said , I think it stopped me grieving for myself. For that healthy self, fit, active engaged in life. And I guess that's where I am now, accepting that loss again, and rebuilding a life out the other side. It's also of course made me reflect on why. The research published this week, supported in part by scientists within Breakthrough Breast Cancer, has identified that breast cancer is indeed  ten different diseases. The future of personalised medicine gets closer. It's a startling discovery and also each of us are individuals too, who need our treatments to reflect that individuality as well. Just as our paths to health and recovery will differ too. My current challenge is to ensure that my recovery time is about doing things that are for me, to encourage my rest and recovery in all ways. So I  am compiling a list of options in my head and trying to drown out the demon that whispers in my ear going, you should not be so selfish or self indulgent! A hopeless case  I hear you cry! Here is the list so far: Walking( not far as legs too wobbly). Swimming ( not yet as surgery too recent). Reading books I haven't got round to ( poor concentration a challenge). Writing ( I am on it!). Drawing ( mmmm not good at it...does that matter?). Singing ( fingers in ears all ...but I do love to sing). Meditation ( on that too). Massage ( limited because of surgery just now). Photography (joined blip photo and keen to do a bit but frankly need to get out more now or photos would just be of my bruises!!) Cinema and theatre trips ( still early days but some to look forward to).  This is the list I have deleted! Sewing (don't know where to start). Knitting( forgotten the basics and was never good anyway). Re learning guitar( ditto and others in family are brilliant!). Cooking( too much like work at moment). Zumba( would kill me currently). So it's work in progress and I am open to ideas.........time with friends and family are good too. And temporarily released from a busy job means I have more time for that.....that feels like a real gift. Reasons to be cheerful. I felt the benefit of taking space to look after myself. Also have had a fun time with the family all together . Time with my daughter has allowed some mother and daughter bonding , including in the lingerie department of M&S ( don't ask, a vulnerable trip for me which i couldn't have done on my own). On this trip we also discovered vegan friendly Percy Pigs.....a truly happy find...they're good too!.We watched The Help together yesterday. What a wonderful film it is. Many a tissue was filled and we reflected on how relatively recent times it charted. A chilling thought and a tribute to the bravery of those who have changed the norms so much  in my lifetime.

Tuesday, 17 April 2012

Cheese, tunes and Breaking Bad!

It's now two weeks after my op and I have passed the mascara test...that is I have actually worn some! Just once but that's a sign of progress I think. The headache has finally gone. In its place I have nursed a cold sore and an unrelated rash on my face. The cold sore is going but my rash is , I think,  spreading. I have tried the unscientific, slap on any cream I have and see why happens , method so far. Surreptitious scratching is not helpful but holds a certain satisfaction. Google holds no solutions so far so perhaps a more scientific approach will be needed eventually. I think what it's really telling me is my body is still impacted on by the surgery and I need to acknowledge that. Point taken! The South Pacific trip was huge fun. More cheese than Mellis ( local cheese shop!) and all the better for it. Three generations were entertained by corny numbers like "There is nothing like a dame" and beautifully romantic "Some enchanted evening".....ah they don't make  'em like that anymore. Maybe just as well but it made for a lovely day, uplifting and memorable. I saw a  moving video this week  courtesy of the Guardian Music who I follow on twitter. It was  about an elderly man re-engaged with life through listening to his favourite music. The carers have developed iPods for their residents based on their individual taste. Seeing this mans head come up, eyes light up and then telling and singing his own favourite to his interviewer moved me to tears . A true example of,person centred care. The power of music to engage, relax, restore and brighten is a timely reminder for me to ensure its part of my recovery too.  I have enjoyed my trips out as you can see but have also paid the price, shivering and exhausted on the sofa afterwards. Sofa entertainment has therefore been important and this weeks DVD success has been Breaking Bad. An amazingly powerful story of one mans response to having been diagnosed with terminal lung cancer. No spoilers , so I will say no more. But prepare to laugh, cry and if you are like me,  hide behind a cushion. Fantastic drama which has many important themes, but does reinforce for me the relief of access to world class cancer  treatment regardless of ability to pay. The impact of cancer is more than enough without the worry of paying for treatment or what your insurance covers.  Reasons to be cheerful are a lovely family weekend was had by all. Although I was shattered I did recover. We have had time with our daughter too, a break from her own busy schedule and a bonus for us. And some of the bruising is better...onwards and upwards.

Thursday, 12 April 2012

Trying not to do a Sarah Lund!

I broke free from self imposed house arrest yesterday and went out. The sun was making an appearance and we went to the Botanic Gardens in Edinburgh. It's one of my very favourite places and it's close by. There is a wonderful restful quality about the gardens, even when they are full of people.  The views across Edinburgh are inspiring and an amazing showcase of its ancient beauty. I am still struggling with headaches and so thought the fresh air would be helpful. But I had untamed hair and (almost) no makeup. We only recently moved back to Edinburgh so I still think I won't see people I know when I am out out. Wrong! I met one of our fab research scientists and also a great friend of our team at Breakthrough Breast Cancer in Scotland. It was great to see them both. Now I have been trying hard not to do a Sarah Lund re work!( if you haven't seen the Killing don't worry all will become clear...but not till the last episode!). I know I am off the case to fully recover so I have no desire to keep stalking the perp, honest. But trawling twitter for interesting news, blogs etc does mean I do see the odd relevant material. So I may at most retweet something I see as important. Still finding concentrating on a book too tiring , means social media is a welcome distraction.  This week I also watched the BBC Horizon programme called, Defeating Cancer. It's was from the ICR and the Royal Marsden hospital, world leaders in research and treatment of cancer. What an amazing documentary it was. The brave pioneers, both patients and clinicians, allowing us to join them on a journey of discovery and hope. Also I know the impressive ICR , as our breast cancer research centre in London is based there. I hope that the watching public had the sense of the excitement and awe we experience on visiting our research centre and units. The hope that translational research offers is such a strong motivator for the work we do in Breakthrough Breast Cancer. The documentary also showed the power of an NHS free at the point of need. The patients weren't afraid of affording treatment, they could concentrate on all the other impacts and make the right decisions for them. How grateful I feel for the ability to have world leading treatment at no direct cost to me or my family. Of course we contribute to the cost over our working lives and that feels right to me. Perhaps we also need to acknowledge that as healthcare increases in cost we may need to contribute more. Our system at the moment is cost effective, the evidence is there for that, so let's invest in it properly. I am also thankful that my organisation is supporting me to properly convalesce, not everyone gets that chance. Sick leave and benefits can affect people's choices at great cost to their long term health. A holistic approach that recognises this will provide a system that enables a healthy workforce. Let's not forget that  has an economic and social gain......simples! So if I am walking through the Botanics and I spot the very perp ( prevention of  or cure for cancer?!!) , we are looking for I can't promise I won't whip out my gun and drag it in for questioning...it's too important to me to ignore......but mostly I will be reading books( I hope) and watching some of the fine array of DVDs shared with me by my lovely friends. And as if that's not enough my other reasons to be cheerful are my daughter arrives tomorrow and we have an extended family weekend planned. The pinnacle of which is a shared birthday gift of a trip for the ladies to see South Pacific. I will of course have to establish a no hug zone( ouch!) but very much looking forward to some "happy talk". If only this damn headache would go.....

Tuesday, 10 April 2012

Are Percy Pigs the answer?

I wanted to update my blog one week on from my surgery. Is it just a week? And I want to be honest about where this week finds me.   As advised I have planned to have 8 weeks convalescence and at times I have thought ;" 8 weeks , I laugh in the face of eight weeks to get better". And then again I have also thought, that's one week gone already ,"HELP!" So I guess the truth varies. Some of my bruising is better but it's still coming out and travelling too. It's long trousers and roll neck sweaters for me if I don't want it to be seen. Perhaps what I have struggled with most is probably the result of a long anaesthetic. I still feel waves of fatigue and fairly queasy at times. Worst of all has been a three day migraine. It's a result of disruption, tiredness and stress I expect. I have tried everything. My migraine treatment works for a while but it's not stopping it. So here's the list of what else I am trying: paracetamol ( pah!) , lots of water (?), rest, mindfulness, Leonard Cohen on the iPod, a marathon watching of "The Killing" and  Percy Pigs. I suspect the resting, mindfulness and the wonderful Mr Cohen are the most helpful. But the last two items are just to say that cute sweets and distraction may not be a cure but hey  I need some "fun" in life. My next dilemma is washing my hair. My only trip beyond the door has been to get my hair washed and dried for me. You see I may be in my 50's but I have long hair. My hairdresser reassures me that  so long as it suits you  , it's no longer an unwritten rule that older women should not have long hair.  When I reached 50 I realised it was the decade I didn't think I would have. That wasn't a conscious thought before then at all but once I realised it, I also thought I would not allow myself to self limit. So amongst other things I challenged myself to do, I grew my hair longer. Now I know long hair is a small rebellion but it was symbolic for me. Consequently I was deeply relieved not to have needed chemotherapy and it's associated hair loss at my recent diagnosis .I was preparing Braveheart style speeches of "you can take my breast but you can't take my hair variety"just in case.  I know it sounds  mad  but I also know hair loss for many people is the final straw in the indignity and distress caused by a cancer diagnosis. So I am  trying to forgive myself that one.  Reasons to be cheerful. I had a lovely , if quiet family time over Easter. I still can't find the energy and concentration to read books so I have been looking at blogs and newspapers etc. One such blog is from the May Isle in the Firth of Forth. The puffins are back and the images of them , nesting sea birds and sparkling spring flowers are food for the soul. Also I have a house full of flowers from my family. Wonderful!

Friday, 6 April 2012

Hit by a truck?

I was admitted quickly this week and before I knew it was sitting in the ward trying to distract myself. A neighbour was clearly unwell and the conversations I overheard made me realise how much. And also how distressed she was. The nurse was deeply caring and supportive and it was almost my undoing. I put on my iPod ( thanks again Karine, the beauty of the voice and lyrics a welcome distraction), partly because I felt like an interloper but also to try to focus elsewhere and stop my mind travelling down a road.  My family visited that evening and I asked for help to,change into nice PJs and comb my hair before  they came, knowing how I looked would impact. It did  and they were relieved by the efforts. But that evening my sons girlfriend had a nightmare linked to others she saw in the ward and the evident  impact of cancer on them. It reminded me that my instincts when they were younger, to keep them away from my treatment was right. When I had my ops my children stayed with my parents and I kept them away from oncology treatment too, helped by friends and school times. But I tried not to hide them from the truth so when my daughter asked to see my wound I showed her. Her reply I still remember: "it makes you feel all wobbly inside " ,was her 9 year old reply. Indeed. And this week , 17 years later, the surgery has helped me put that impact -and the more recent one- behind me. One of the nurses this week said that I looked like I had been run over post op......not wrong , one tyre was over both my boobs and the other over my thighs. .....and it was one big truck! But I know it's going to be worth it. I read an article this week about the importance of truth and authenticity for leaders of teams. My experience resonates with this. The most effective teams have a high degree of this, and it needs to be worked on. The same I guess is true of families. Our instinct as parents is often to try to protect. And that's not wrong but children sniff out inauthenticity a mile away. So it's finding a truth that does not scare more than necessary that's needed too and thats not always easy or possible. Any parent dealing with a cancer diagnosis will have these dilemmas and they need support with this as much as with side effects of treatment. This week our Breakthrough  scientists discovered a genetic link to oestrogen and breast cancer in younger women, really building our knowledge to understand this better and offer opportunities for identifying high risk and tailoring treatments in the future. http://www.breakthrough.org.uk/media_centre/index.html . It gave me sense of hope again from this  work, so less parents need to face such challenges in the future . An output from the Breakthrough Breast Cancer Generations Study and all the more encouraging for us all as a result. Thanks to all who have made this possible. Reasons to be cheerful are at simplest I am out the other side and on my way to recovery.  Karine Polwart very kindly sent me her DVD after seeing my earlier blog and I love it and recommend it.  I also read a blog ( thanks @Ellen27) that said what do the photos in your mobile phone say about you. I had a look and it's family, friends too, the cat and my daughters dog and beautiful scenery. I would sum it up as love, beauty and flowers...thanks to all of you who bring those into my life!

Tuesday, 3 April 2012

Have we lost our concept of convalescing?

It's 30 years since the Falklands war as many commentators are highlighting just now. I was one of those people who said war could never happen over a set of islands most British people had never heard of..that we wouldn't risk lives in such circumstance. I know better now and I realise that political ambition in whatever it's hue can lead to such , in my view, flawed decisions. But why is it relevant to me in particular? It has brought back memories of an earlier hospital admission. I was pregnant with my son and had my appendix removed. A stressful time largely because we feared I would lose him. Happily I didn't but it meant the surgery was more complex and I was sent to a convalescent hospital.......a concept no longer in existence. Picture a scene from Call the Midwife and you will have taste of it. ...and i am not that old honest .It was a long ward of about 30 people ( a Nightingale ward as it was named after Florence!). Many of the patients were about 40 years older than me and wiser too. They sat around the TV as war was threatened and recognised and feared for the signs. I was told I was there to rest and eat well to aid my recovery. Well let me home then I cried! The image of the last nights dinner looming large....two poached eggs and some mashed potato....the memory still makes me heave. And as for the snoring, lets not even go there. So they did let me home with a promise to rest. But I wonder if we have lost the concept of convalescence along the way. Not in hospital of course , but in life. The importance of self care, healthy food, gentle exercise and TLC. Instead we pledge to run marathons, rush back to work, prove to ourselves and others that it's had no impact. But it has. I guess my learning at this late stage is to embrace that and recognise that this new you in whatever way, is not worse it's just different.  And I have of course committed to giving myself good recovery time and have even linked in to some support to make sure I do that....I know my own risks you see! One woman I met in hospital was in the middle of chemotherapy and will have stem cell treatment too in the spring, her work said oh I was expecting you might be back in the summer. WHAT? ! Have they any concept of what she has been through? Clearly not. So it's just as important that benefit systems and work environments understand the impact of a serous illness like cancer and don't force people back in a way that will endanger their long term health too.  And let's not forget hospitals can start a person on a journey to better self care so hospital food needs to enable that. I know that the poached egg story is old now but when I asked for fruit this morning for breakfast I was only offered prunes ( don't ask!). Holistic care and messages need to be joined up, good nutrition should be part of that.  Reasons to be cheerful are plentiful. I have had my surgery and am home, already feeling the benefits of my new self. I was nervous but I am so glad i did it. The team in Edinburgh are simply fantastic. They provide up to the minute care and treatment within an ethos of kindness and support. I am so grateful to them. Breakthrough Breast Cancers  service pledge has the potential to influence all breast cancer services in the UK to provide such care and we shouldn't rest till we do. So a big THANK YOU to Professor Mike Dixon and the team at the Western General Hospital Ward 6. You are awesome!

Sunday, 1 April 2012

The benefits of TLC..both kinds!

How do fill your time after getting up for the last coffee before fasting for real begins? Write a short blog entry? OK. It's so hard not to hit automatic pilot and make my porridge so i am looking for distraction. I have been reflecting on anniversaries. No not the ones linked to precious stones or similar, those ones linked to events, diagnoses , loss and so on. These type of anniversaries can be evoked as seasons change, with songs listened to , with places, with smells. So many things that can bring back memories ,so often in this situation ,unwanted. As we have embraced April i too have experienced that and of course here I am bag packed going into hospital to try to in do the physical and in many ways psychological impact of last year.I have pulled some of the clothes I wore ,as recovered last year from the wardrobe, then stuffed that back quickly, so strong were the sensations they evoked. But another irony struck me as I opened my invitation a few days ago to breast screening. I calmly phoned to decline as you are advised to do should you be in treatment. But what then occurred to me was had I not been breast aware and noticed a change between appointments AND got advice with that...I would have only been starting this new journey this April. And what difference would that have made? Of course I can't know exactly. But I do know that when I had a mammogram three years ago there were no changes so I can only assume that another year might at least have required me to , at the very least ,have more treatment than I needed last year. Cancers can develop between screening appointments so being breast aware is a life time job. At Breakthrough Breast Cancer we understand how important this is and so I will again remind you and those you love to show themselves some TLC! Touch look check...look at our website for more information or download our ibreastcheck for free from iTunes.Yet again my own story reminds me of the importance of that. Reasons to be cheerful....now you may be thinking get a grip woman, how can you be cheerful with surgery looking you in the eye! But I truly am grateful for the love and support from my family and friends this weekend. I have felt truly fortunate. One of the real paradoxes of times like these are they are reminders of how precious those you love are to you and maybe for me today..how precious I am to them. Now that is the best reason to be cheerful.And to celebrate another kind of TLC too...hope you have some of that in your life too.