Sunday, 25 September 2011

Now what's the oppoosite of a Bucket list?

I started this week in London, meeting up with my colleagues across the organisation. All good. It was an inspiring few days confirming our plans for the coming months and spending time with people who share my own values and ambition for our mission at Breakthrough Breast Cancer. I travelled there and back by train to ease the burden of travel but still found that I started the next day with a migraine-my bodies way of saying slow down. Although I have been used to pushing myself I keep being reminded that I really cant do that just now. I recognised myself in the statement by a friend in a similar situation that she didn’t want to slow down she just wanted to have her energy back to do the things she used to. If only it were that simple and there is of course an inherent catch 22 because the more you try the less you can do…….I call it my goldfish moment I just need to keep learning it.Well no one's perfect eh?

I spent this afternoon doing a little shopping,ending up looking at pretty lingerie again and leaving, as before, without any. I feel caught between wanting something to help me feel good, not wanting to buy anything that wont be suitable if/when I have more surgery and most importantly knowing that my asymmetry makes it all a bit complicated. I could get some help with a more permanent prosthesis (and I know they are fine and many are helped by them) but somehow I don’t want that. It feels like making the decision before I am able to. The temporary one I bequeathed to the cat and even he wasn’t impressed.

It leads me to reflections on how this experience has so many different impacts. Breast cancer itself has many different stages and each person has their own particular reaction to it. Traditionally we have spoken of primary breast cancer and secondary breast cancer. Both represent different stages of the disease, needing different care and treatment. But we know that for many when they are diagnosed with secondary disease they find the support lacking. This seems a real paradox given the very real need when cancer is found to have spread. I do wonder if we need to stop seeing it in terms of this division and instead see the complexity of the disease in its entirety and ensure we support people throughout their experience of cancer. We need to recognise that its a changing experience too, that  many live for many years with secondary cancer and their needs are complex and varied- we need a breast cancer service that is person centred and is consistent throughout their journey. One wonderful story I heard recently was of one of our supporters who was told over 12 years ago that she would not live long and she recently proved that wrong when she welcomed the birth of her first grandchild. How fantastic is that? Things are changing in a good way and we need to change our support from the NHS and voluntary sector, to meet future needs too.

Someone I follow on twitter was inviting people this week to share their Bucket lists and I was considering that when I saw another invitation to do your F**k it list too. One of hers was to stop losing things in her handbag….you get the drift? It made me laugh and think too, I must confess. So here goes some of the Bucket list:
Visit the Himalaya
Holiday with the family in Orkney
Have as much time I can with people I love
Get time to write a book at some stage
Go on safari
Go back to the May Isle when the seal pups are there
Visit more bird sanctuaries
Buy that dress ( see below!)
And lots more so …..
To be continued!

And if I may be permitted the start of a F**k it list.
Wanting never again to sit in meetings I feel nothing constructive is happening in.
To never again hear polarised political debate instead of a real open-minded commitment to improving the common good.
The Edinburgh Tram project (its chaos again!)
But most importantly it is to stop so many people being diagnosed with breast cancer and especially to stop people being diagnosed with advanced disease. There are endless F**k it’s about breast cancer. In a way this blog is about sharing some of mine (although perhaps in a slightly more lady like fashion ;-)). I suspect I may come back to this theme again…yes the F**k it list of breast cancer is also to be continued!

Reasons to be cheerful:
Yesterday I had my hair done (always a therapeutic intervention!). And then had lunch with my good friends. It was great to see them.Love an laughter-always a joy. I am also planning my trip to my daughters later this week. Fun and relaxation are on the menu I know!
AND I got the chance this week to see some of the products being sold for Breakthrough during breast cancer awareness month. Charity shopping is perfect-conscience free and lovely products too-my favourites are the coast dress, the warehouse top and of course the M&S pretty in pink t-shirts. Bucket list material I think. See for more details. Enjoy!

Saturday, 17 September 2011

The milk of human kindness.

I have been watching the news the last few days about the miners who were killed in Wales. Any untimely death is a tragic one. For me, having grown up in a mining area with my father being in mine safety it was especially poignant. The scenes of that mine seemed to take us back in time. It remains such a dangerous way to make a living. The reason the Chilean rescue was so memorable was because it was rare to save so many lives in such an incident.

My father always said that he would prefer to see a time when people did not need to earn their living down mines. The impact of the miners strike was huge in our community and my father-like many- had no respect for Margaret Thatcher or Arthur Scargill, believing neither of them to have the real interest of the miners and their families in mind. Perhaps mines like the one in Wales are most likely to survive in times of economic hardship but safety must always be paramount. I lived through a local tragedy that although did not affect our family directly, I still recall vividly because of the stories and the impact on my Dad. He lost friends and colleagues and it affected him deeply for the rest of his life. And I remember our fear if he was late home-it was always there.  My thoughts are with the families for the difficult months and years ahead. The mining communities in South Wales will I am sure act as a support to those grieving families as such communities have done for centuries-their dignity has been remarked on by many.

It’s been a week of impacts. I attended the Long Term Conditions Alliance conference on Social care and long-term conditions. We know that when people become ill it affects all aspects of their lives. I heard loneliness described as a key issue. As we live longer and also have more one-person households loneliness becomes increasingly common. If that is combined with illness its not hard to see how it may compound the issue. As one elderly woman said to me-“I was told I had breast cancer then returned to the house and closed the door and there was no one there to comfort me.” She then went on to say that the support group had become a very important source of support and indeed the milk of human kindness.

Depression is a common consequence of a cancer diagnosis. And its frequently after treatment has ended that the impact of the diagnosis is felt most acutely. I shared my experience of hitting a wall of fatigue and “oh my goodness that really happened” first time round and to some extent more recently too, with a friend this week. She too has felt that impact and really was helped by a charity that provided counselling.

 Towards the end of the week I attended a meeting where we discussed what kind of communities we want to see and what will create that, given our current challenges. I do believe its fostering that milk of human kindness that provides the kind of support I have spoken of-both of which was made possible through a mixture of public and voluntary funding. Supporting our natural resources whether it’s as individuals, communities or nations can help us thrive better in the future. We need more policies and behaviours that support this.

In Breakthrough Breast Cancer we see the power of the volunteer daily, whether its doing the Great North Run to raise much need funds for us tomorrow (thank you all!), whether its our great volunteers who come into the office and do vital work on our behalf, whether its service pledge volunteers across Scotland using their experience to help others in the future- we could not do our work without them. And they inspire and humble us. I also see that spirit in many of our employees at Breakthrough who go beyond the extra mile for all those we represent. A job in a charity won’t make you rich ever but you will get up each day knowing you are making a difference. And they all are, all of those who contribute to the work paid or unpaid.

So its important to say thanks. We host events for volunteers to do that but this week it was one for team Breakthrough in Scotland. It also gave them an opportunity to see the new kitchen that has contributed to my grey hairs of late! I was busy cooking up a storm when a photographer arrived to take a photo of me for a article about my blog in a newspaper on Sunday this week. The dash to do the hair and make up and change out of the jeans and into a dress was impressive. I gave a swan like performance calm but paddling furiously while he took the photos. Koshka got in on the act too-sitting on his favourite cushion beside me. Amazingly it all came together on time despite the distraction. The photos seemed good too but I don’t know where he found those wrinkles to paint on ;-)!  It was a great evening and it also allowed my family to meet them all. There was much laughter and chat and my daughter summed it up at the end of the night, saying what lovely people I work with. Indeed they are!

Reasons to be cheerful are of course the great evening I have just described. I coped at work for a full week
( woo hoo!)and plan to travel to London to see my colleagues there next week. I am looking forward to that. Tomorrow its time with friends, chewing the fat and if weather permits a walk on the beach too, fingers crossed. 

Saturday, 10 September 2011

The best laid schemes......

I do believe I have quoted this line from a Burns poem before…but its apt again this week. The best-laid schemes o' mice an' men gang aft agley”. The fireworks started well-we had a prime spot with a marvellous view of the castle from the park just a short walk from the house, it was a mild night (for Edinburgh) the swans peaceful on the small pond below us. And the first half hour was magical and probably the rest was too we just missed it! I was especially enjoying the music from the Nutcracker section when I realised my husband was acting distractedly. His tendency is to play things down so I commenced the third degree and my questioning disclosed he had severe heartburn (his words), was feeling clammy, dizzy, had blurred vision and felt sick.

As you may recall I am a nurse by profession so I was checking his pulse and listing the signs of heart attack in my head ( for more info!)And also remembering that there is many a story about people thinking the pain of a heart attack was heartburn. As this was an organised event in the park thankfully the paramedics were quickly at hand when our son went off to look for them. As he insisted that really he was fine and could walk home in a minute, the female paramedic replied, “ I will be the judge of that”. He then conceded control realising he was dealing with a formidable force. However once she had mentioned several times that he didn’t look his age they became firm friends …… A night in the Royal Infirmary resulted in a happy ending I am much relieved to say. The reaction was to a painkiller his GP had prescribed for a rib injury and was indeed severe heartburn coupled with dropping his blood pressure and pulse. His resting pulse is normally low so the combination caused a suspicion of cardiac signs and again the doctor in the Infirmary saying his pulse was just low because he is fit, boosted his ego no end.

So all’s well that ends well…a quiet week to recover and stopping the tablets means he is well again. Phew. Although a reminder yet again-as if we need it-that life is precious. My planned visit to the GP consequently was after a night of no sleep and worry so when she said to me you need more time to rest and recover from all you have been through I gave in without a fight for once! Its been a quiet week all round but its helped.

I saw Mike at the breast clinic too and we agreed to do nothing further this year to allow me to get my strength back. I wanted to understand better the risk of the cancer returning. If this was a first diagnosis I would, with such early disease have 90% chance of no return in 5-10 years. I know I can live with that but what is uncertain for me is the complication of this being for the second time. There are no stats for this as my situation is still unusual. So no definite answers but a bit more information to help with my decision. If I can ever make it! But I guess postponing a decision is a decision of sorts and frankly the only one I am currently capable of making. Most unlike me but these are after all uncharted waters. And I have decided that I will wear my asymmetry as a badge of honour-and remember only try on new bras when I am feeling more robust (a long story for another day..)

Our experience this week of course confirms the importance again of early diagnosis whether it’s for cancer, heart disease or a long-term condition like diabetes. The sooner the treatment commences the better for all, including the stretched resources of the NHS. Charities like Breakthrough Breast Cancer, BHF, Diabetes UK and many others do vital work raising awareness to improve early diagnosis knowing it saves lives and quality of life too. Working in partnership with the NHS is powerful and it would be great to see more of that in the future to enhance the impact of all our work.

Reasons to be cheerful are of course happy endings and the love and support of family and friends. I am hoping to see the new Jane Eyre film soon too. The actress was Sophie in “In Treatment” (great series about a psychotherapist starring Gabriel Byrne) And she is a stunning actress. We have two Mary’s visiting tomorrow: my mum and the West Highland terrier puppy of the same name. I am sure they will get on…less sure about Koshka though. Also our daughter comes for a few days before heading of to a wedding on the Mull of Kintyre…all together now ……!

Sunday, 4 September 2011

Morph suits, Marvels and finding the X factor.

The sun is shining today and it’s also the day of the Great Scottish Run in Glasgow. Professor Mike Dixon who is clinical lead of the Breakthrough Research Unit in Edinburgh and hero of many (including me!) is running the run to race funds for Breakthrough Breast Cancer. And not only that but he is accompanied by Mike’s Marvels another 20 plus runners who are joining him. They all have reasons to be grateful to Mike and what a super way to show it. And they aren’t the only marvels either- several of the Breakthrough Scotland team will be there with him running…and we are talking dressing up here. One of them is wearing a very pink Morph suit……..I know that’s brave any where but it starts in Glasgow Green. I hope there is police protection-but no arrests!

The morph suit sadly is not on brand. It’s the wrong shade of pink you see. Having mentioned that on twitter my colleague then received a tweet from a company in the US saying they made such suits in magenta-too late for him to get the brand colour on time but if we ever want to make it the corporate uniform we know where to go….The tale of him practicing running in it the other evening-by a local school and police station was hilarious and just a wee bit worrying too. It did make my cough worse for a time but frankly it was worth it.

So I am back to work again. Feeling a bit embarrassed that I have been ill again. Its given me some time to reflect on why and I know really its because I haven’t given myself sufficient time to recover. I think my mantra of “this won’t kill me, its very early stage and I will be fine” has probably stopped my giving the experience the respect it’s needed. Admitting that makes me feel a bit stupid given my role-you might say I feel a pashmina short of wardrobe (thank you “Miranda” now that’s what I like to call funny!) but I guess that’s another condition I am not immune to! I also know I am not alone with feeling this way. Perhaps we need to get better at guiding people through these experiences-so cancer rehabilitation properly resourced and prioritised becomes the norm for people not just the lucky few. And of course a cancer experience never sits alone- I moved house less than a year ago, have extended the house and it’s a very busy job I do. And one that I love, working alongside great people-so I really don’t want to be off. But I know I need to look after myself better and I am working on that. So I haven’t joined them at the run and I wont be doing any long distance walks this year, I will minimise my travel and hopefully at some stage manage a break that isn’t really sick leave in disguise……and I will build in some more relaxing and meditation time. One of my colleagues suggested they could sponsor me to stay in my bed…seriously tempting idea too! I have booked a trip to my daughter’s at the end of the month and I am really looking forward to that.

This week finds me returning to the GP and going to the breast clinic too. Both occasions will remind me of my fragility. Visits to the breast clinic are always those occasions when you return to the emotions and you can touch the atmosphere in the waiting room. I guess that’s one of the reasons the waiting rooms and follow up appointments are often a focus in the Breakthrough Service Pledge. Patient experience feedback reminds us that all of the cancer experience impacts on your well-being.  And I am aware that any further surgery is really not an option this year-I am just not strong enough just now. But luckily I don’t need to rush that decision. It will be good to have an opportunity to talk it through. I will let you know how it goes.

Reasons to be cheerful are going to the Fireworks that herald the end of the festival tonight. The backdrop of the castle and the display set to the music of the Scottish Chamber orchestra is quite magical. And also the Edinburgh citizens get their city back too.( I wont mention the trams-too painful!)
OK I will also admit to a guilty secret- I am watching the x-factor and am just a bit smitten by Gary Barlow. I haven’t ever bought a Take That album but I find him warm, knowledgeable, gently funny and kind-now that’s the x-factor for me….and he’s kinda cute too! Enough!