Saturday, 27 August 2011

In memory

Five years ago today we were with my step-daughter as her Mum lost her hard fought battle with breast cancer. It was such a terribly sad time not only for her family but for Julia too. She had so much more living to do and a much loved family she wanted to do it with.

She had missed a mammogram as she had had another problem with her health and decided to put that one off till a better time. A scenario many of us would recognise. It was when she noticed a change in her nipple and mentioned it to her daughter that she finally realised she needed to have it checked. She didn’t know till then it could be a sign of breast cancer.

Like many women ( as our research at Breakthrough Breast Cancer confirms)she wasn’t familiar with the signs of breast cancer beyond a lump. Having also missed a breast screening appointment meant that when she did finally seek medical help, the cancer had already spread. Her treatment consequently involved surgery, chemotherapy and radiotherapy. Throughout her treatment she found balancing work an increasing burden and she felt she had to give up a job she had previously enjoyed. This left her much more financially vulnerable but allowed her still to have time and energy for her granddaughters. Every minute of that time with them was precious to her.

After her active treatment was complete she then opted to have a reconstruction of her breast. She had great confidence in her breast surgeon and demonstrated that not only by opting for the surgery but also, in typical style for her, sending him a valentine! The results were excellent and she wasn’t too shy to show that to help anyone facing a similar decision. The team who looked after her often spoke of her positivity and how inspiring that was.

But sadly that’s not the end of this story as suddenly following a spell of abdominal pain was investigated liver metastases were discovered, less than two years from her initial diagnosis. She was very ill very quickly, which was devastating for her and her family. They were robbed of time to have all the conversations they wanted to, the special treats that make the memories to savour, the quiet times just to be peaceful.

She and I had some very moving conversations over that time. Our shared experience of breast cancer and of course the family links had given us a unique bond. I know she clung to life as long as she could, she desperately wanted more time to see her beautiful granddaughters grow up and that she faced her dying with great courage. Its hard to believe its five years already. Much has happened in that time, including her daughter and mine doing the Moonwalk in Edinburgh with me. She was much in our minds that night. At one point, trying to encourage her daughter I said “What would your Mum be saying to you now?”. “Have you seen the state of your hair” was her reply and recognising a real truth we all laughed. But I know she would have been deeply proud as was her Dad as he greeted us at the end.

So five years on I write this blog entry in her memory. Time heals but also these anniversaries can remind us how much we miss those we love no matter how long it is.

Reasons to be thankful: Research continues to improve so that the outcomes for women like Julia can be different- as a result of our work more lives are being saved. Also there is investment in improving early diagnosis across the UK. Because lets not forget that had she been diagnosed earlier she might still have been here. So be breast aware , promote TLC wherever you can and encourage those you love to go for breast screening.

Wednesday, 24 August 2011

A bad case of cant egt the bed off my back!

So that’s me back from holiday and sunny Edinburgh is crazily festival manic .I started the week visiting my GP since I had had to buy antibiotics while away. I also found I couldn’t stop coughing on the flight and my inhalers were just not helping. So there I was conceding that wonder woman has well and truly left the building. The GP not only prescribed steroids for the asthma but also rest and time off work. After two days of resistance I have finally given in and I write this from my bed, propped up with pillows and sustained with warm drinks. So much for the post holiday benefits!

I have been searching for mindfulness classes to support my self care and trying not to give in to the “I don’t have time to commit to that” mantra. You see there is insight but still long engrained behaviours to address. Wish me luck on that one….

Whilst buying my over the counter antibiotics it started me wondering about our very different approach at home. I did know what to ask for, understood the problem and engaged my self management approaches and followed the advice. I knew to see my GP when I was not improving too. Could we trust people to do more of this over the counter self management if we empowered them with the right information? As we struggle to balance the books of healthcare, letting go paternalism and giving the right information , education and treatment to people at the right time to allow them to live their lives as best they can seems a good step forward. We need to keep challenging status quo to help us move on and best utilise reduced resources.

I notice how although I suspect my current illness is really a result of my immune system being challenged since the surgery, I still find myself wondering if it might be more than that. Anyone living with cancer will know this routine. Is that pain in my chest just asthma or could it be lung secondary’s, is my tiredness due to some underlying problem, are the pains in my back bone mets and so on. Its really mainly the 2 am shift that brings them to the fore but the steroids make sleep more difficult so it’s a double whammy really. I know with such early disease its just what it is-the fact I haven’t given myself enough rest to recover fully from the breast surgery but I am still human after all!

Today I had planned to help deliver a session at the NHS conference on transforming quality working with the third sector. Although I hate the third sector title ( who says we aren’t first after all?)This is a great opportunity to promote our work as a sector. The great things we do to support people to get through their health challenges. They will talk about the LTCAS self management campaign-“My condition, my life” and one of our volunteers will talk about the Breakthrough Breast Cancer Service pledge-illustrating how that partnership between health service, charity and volunteer can really deliver person centred care for all. It’s a great project, one I would love to see more benefit from. Wish I could be there but they will do a great job without me and today ( Matthew!)I am going to be a patient, patient and practice what we preach….. Aye right!

Reasons to be cheerful! Yes there are plenty still. It really is nice to be home with friends and family. Koshka is happy to see us. He looks huge compared to the leaner varieties in Bulgaria. He was quite excited to see the pink dressing gown re-emerge as I took to the sofa once more… Don’t ask! And the final touches to the house are nearly there. It looks fab.

The festival marches on but I haven’t managed to enjoy any yet due to an embarrassing cough and  bad case of cant get the bed off my back. One of my colleagues is doing a show at lunch time this week so I really would like to go. Maybe I can at least sneak a visit to the book festival -its my favourite spot-you see I am a woman that knows how to live!I did read one of the top ten fringe jokes was "Did you hear David Cameron has decided to set up an 80's tribute government?" This isnt a political blog so I will leave it there...


My wonderful colleagues are also cheering me up with dedicated punning, morph suits and an unstinting commitment to making a difference-you are fab!

Saturday, 13 August 2011

Bulgarian rhapsody!

In a week that has told of riots I feel a long way from such things. I know there has been a special debate in parliament and I have no real appetite to see the detail given some of what I have read. Perhaps its because the greatest excitement we experience here is the visit from the neighbourhood cat and the goats. But maybe its also because of the predictability of the response. Undoubtedly there has been depressing engagement in criminal behaviour by those who should know better but is that all it is?
It has reached the headlines here in Bulgaria and as our friends here say there is always a reason for rioting. It hasn’t happened for many years in the UK and we need to learn from it. Can it be a coincidence that they have sat alongside the panic in the markets we saw last week. When it appears that the “experts” may not know everything and more livelihoods and homes seem at risk, how do people with the least hold onto hope? I know many lives have been damaged by these riots but lets not simply focus on the immediate and look more closely at the underlying issues.
There is no doubt that economic uncertainty affects the work that charities can do and I do have concerns about that. But more immediately with regard to my work it also impacts on those who have cancer. We know a diagnosis of breast cancer like other cancers and indeed other long term illnesses affects peoples economic well-being as well as physical. Whether that’s the ability to still stay in their job or career, work full-time, travel or whatever the impact I know from my own experience too it does change things. It reduces options and increases uncertainty.
Applying for new jobs or making a career change can be hard when you have had a recent diagnosis of cancer. My current role is the only one I have been up-front about having had cancer in the past. And it has never affected my ability to work hard and do a good job-but I have been lucky. Changes to benefits can leave unwell people poorly provided for and we need to collectively ensure that this doesn’t happen.
I find myself wondering as I sit looking at the mountains in this wonderfully healing environment whether I could make different choices to allow me to do more of this. And while that may not be a bad thing, the reality is I wasn’t thinking that before my recent diagnosis. Its not helped by me having a chest infection-more confirmation I have not as yet recovered. Still what better place to recover than here.
We have just had a visit from the lovely Jacko and his owner the shepherd. The goats have been eating the unripe grapes at the bottom of our garden this morning- a red letter day for them! And the cat is back. We call her Koshka too but forget she doesn’t know that. For several years we have worried about what happens in our absence but now she is no longer a stray. She has a collar on! My friend this is not just a badge of ownership-its one of love too. I am so happy for her.
I love to watch the birds from the balcony ( its an exciting life you can tell! I call it an antidote to a busy life….)and it strikes me there is an organisational management book in this maybe? What we can learn from bird behaviours. The swallows sit on the wire and chatter then play either catching flies in the thermals or dance close to the water. They disappear when the eagle appears. The eagle prefers the strategic perspective and lets them know of their presence by the piercing call. The jays are noisy and colourful but not to be trusted. And the red shrikes just got me out of my chair to explore what they are pursuing together-a fascination with the pear tree is part of it. Not sure about the behaviour here other than they are cute with their mask of zorro characteristics. Fortunately no seagulls. We don’t need any of their management techniques-fly over-s..t on you then fly off-do we?
Reasons to be cheerful are happy family times. Last week at a family wedding with my daughter to share it with. Re-engaging with family members was special. The sight of my English husband in his kilt at a Geordie wedding was good for the soul! Good times indeed.
Now with more family out here in our little bit of paradise. The snow has gone off the mountains but they shimmer with sun and the full moon of the last few days has lit the night sky up in a dramatic fashion. Warmth, wonderful healthy and cheap local produce and good company. Musical accompaniment has included the new album by Alison Krauss-beautiful. Her band were the “soggy bottom boys” in Oh Brother Where Art Though. Both I recommend highly.
I feel a need to plan my next trip asap!Ciao ciao!Oh and any takers on the book idea?

Monday, 1 August 2011

Early detection and Travelling Willberies!

I have started the week well and walked into work! I do arrive much more energised and I got in early too….it must be the lure of a holiday at the end of the week and much to do in the interim.
It’s also started well with the good news that the Government in Scotland has announced the launch of the detect cancer early programme aimed at improving early detection in breast, bowel and lung cancer. In Breakthrough Breast Cancer we really welcome this as early detection is an important predictor of a good outcome which is why it’s a key focus of our TLC campaign and public health work in general. The link for more information about it is here. http://www.scotland.gov.uk/News/Releases/2011/08/01094342
 
My own experience is of course the reminder of the difference early detection can make, I am here almost 17 years later and although I have now been diagnosed for a second time, that too was an early diagnosis too thanks to my own knowledge of TLC.

But this week I have been thinking of people who have been less fortunate. Discussing what its like at the end of treatment took me to thinking of a good friend who I was with when she finished her course of primary treatment. It was her last radiotherapy treatment and as we went back to the car together she started to sob; she sobbed because she was relieved it was finished, also with a sense of "I cant believe it all really happened" and perhaps most importantly about the worry about what next? It was nearly 20 years ago and I still remember it clearly. We were both in our 30’s and neither of us thought we would be facing such things at that stage in our lives.
 
She had advanced disease at diagnosis so lost her own battle (and it was at times a real battle) about 11 years later. Her death was undoubtedly one of my low times for many reasons I am sure I don’t need to expand. But the most important of them was that I missed her friendship and still do. The bond created by friendship coupled by the shared experience as well is a special one. It’s a similar bond that makes our Campaigns and Advocacy Network (CAN) in Breakthrough so strong. And for our many other supporters and fundraisers it’s a similar bond that drives them on. I got a note from her family last Christmas saying that they really felt the work we are doing in Breakthrough is changing things and saving lives for people affected by breast cancer now. It was for me a bit like winning an OSCAR-and I will also admit to a bit of a Gwyneth Paltrow moment!
 
I was watching TV yesterday and saw Dave Stewart talking about a new project and he mentioned about the time he had "The Travelling Willberies" recording in his garden-he is such a lucky man. What amazing memories never of course to be repeated. Have a look for some clips on You-Tube- it could brighten any day. He also spoke of how he unwinds after a busy day. I share it with you not because I recommend this way to relax but his story was full of humour-he has a vodka martini but in moderation he said. His comment is that they are like breasts-one is too few but three is too many! It really made me laugh and also reflect that for me just now that “one and a bit” feels too few as well. I did try the soft prosthesis that I got in the ward the other day. It was eventually propelled across the room with a performance worthy of Gordon Ramsay (not meaning the cooking). My plan is now to sew eyes and a tail on it and donate it to Koshka the cat.
 
But sometimes one breast just has to be enough I guess, especially if it’s about saving your life of course. I read something today that suggested that not enough women are being offered reconstructive surgery and that does concern me. For some women it will be the only way they can again feel returned to full health and it needs to be a realistic option for them at the right time. Its such a personal thing and my head currently is spinning about what to do for the best. My eyes filled with tears recently when someone with a wealth of experience offered to talk it through with me. I realised in that moment how hard this decision is for me.
 
So reasons to be cheerful? I am meeting some great people this week to see what they may want to do to help our work in Scotland. We are off to a wedding at the end of the week and my fabulous daughter is joining us too. And that holiday is just around the corner……woo hoo! Oh and I found a really nice two piece "cossie" that doesn’t make me want to kick the mirror! That is no small achievement at this time believe me.