I simply cannot blog about anything until I get past this! On Monday, we got the best news! Barry was told his brain scan looked wonderful! Wow!
A bit of background: 17 months ago, my husband (then aged 38 years) was admitted in to hospital for surgery to remove a brain tumour (glioblastoma multiforme – a grade 4). A few months later, he had a second tumor (this time a grade 3) removed. He has since undergone 2 rounds of radiation and 8 months of chemotherapy (1 more month to go on that). He has handled it all with strength, grace and courage. His blog, injected with his sense of humour and emotional warmth, has kept many informed. The response to his latest post was unprecedented. (You can see it here).
Thank you! The support we have had during the darkest events to hit our family has been phenomenal. They say “It takes a village….” (I think it’s normally “… to raise a child”, but you get my point) it really does! In our case, it has been a global village.
Let’s start at the hospital. From the Neurosurgeon who attacked (that’s the only word for it) both of Barry’s tumours with a confidence and arrogance that beat them into submission; to the wonderful Oncologist, who has guided us through each step of chemotherapy taking care to explain all the medical information on the way. Then there are the nurses, the radiation staff, the home care nurse who assisted the challenging Picc line duties! Not to mention the Doctor who took care of the infection. The Medical Team have been (and continue to be) amazing! There is still a round of chemotherapy to come. Following that, Barry will have a MRI scan every 3 months. Yes, the scan was clear of tumours but it is impossible to tell if cancer cells still linger. For that reason, scans will be regular. Here’s hoping we have many more years of “all clear”! For now we are enjoying, and celebrating the moment!
Friends and family, near and far. From day one, we have been stunned by the outpouring of support, emotionally and practically. I don’t know how I would’ve got through those first two weeks in September 2010 if my brother and his fiancee had not been here on vacation. They were unfaltering in providing shoulders to cry on, logistical arrangements for the boys, meals were ready, everything, in fact, was organised without a word from me. They just instinctively knew what to do and when to do it. Incredible. Friends, understanding of the challenges we faced and how this was compounded by being so far from family, wrapped us in a blanket of compassion and love. Meals were provided, hours were passed in the hospital waiting room, medical discussions were shared. Then there were the friends and family who felt they were too far away to help, yet they provided immense support via email or phone calls. I think I’ve spoken to my Mum pretty much every day over the last 17 months – I’ve needed those chats! Even beyond those people we know, we are learning now of people who have followed Barry’s story and are sharing in this most recent news. People all over the world.
It takes a global village. If there is anything positive to come out of all of this, it is the realisation that people pull together. Family, friends, neighbours, colleagues, acquaintances – everyone has a part to play when challenges arise and every part is essential, no matter how seemingly small. Thank you everyone! Enjoy the moment and celebrate with us!
Ok….I’m after some opinions here. I was in the greeting card section of the supermarket this morning (looking for a New Home card which they didn’t have!). I spotted a Cancer Care section – neatly slotted between the “Today you’re 10″ and “Happy Thanksgiving” sections. There were about 4 different designs (but still not 1 for a new home!). They were all supposedly humourous – for example comparing the cancer sufferer’s headscarf to that of a pirate. I have to admit, their appearance on the Greeting Card rack did not sit well with me. My first thought was – “Seriously, they’re going to make money out of this evil disease?” (the cards were not fundraising incidentally). On closer examination, I started to feel they were patronising – you’re ill, you’re sick, you’re in pain, you are suffering from a killer disease so I’ll make this little joke to cheer you up! Hmmm…..there is a place for humour even in the life of a cancer patient, but I’m not convinced that place is on the front of a Greeting Card. To abdicate themselves of this responsibility for tasteless humour, the company has written on the back that the joke was written by the carer of a Cancer patient – so that makes it ok then? I think not. Humour is a personal thing and whilst that might have been ok for the author’s spouse and probably meant something to her, it is not ok for many others.
From a positive slant, cancer should not be a taboo subject and I guess the arrival of such greeting cards is an acknowledgement that the disease is out there. Surely, though, there are more earnest ways to recognise it. I would still maintain that it is far better to write a personal note. Talk. Listen – really listen. Ask questions. To me, the greeting card seems like an easy option – someone else’s words, already written. I imagine that they do more for the sender than the patient. Perhaps they create a feeling that they have done their bit to show support.
Here’s a link to some examples so you can see what I’m talking about.
So, I guess I’m asking, “What do you think?” I know there’s a chance (a big chance) that I’m seeing things from a narrow perspective. There may be cancer patients who see value in such a greeting card. Maybe it shows that people care enough to send their support. Is it better than doing nothing at all?
Barry didn’t receive any specific Cancer cards, he did however, receive gifts and cards with personal notes (particularly from those overseas) when he went through his first surgery. They were very gratefully received and did show us that, even though the miles separated us, people were still thinking of us. They still are.
Update to include comments from Livestrong and Michelle on a Facebook link…..
LIVESTRONGReally interesting question. We have sold stationary in our online store in the past, but 100% proceeds go to support our mission and they are blank stationary with the LIVESTRONG message. This particular line does not seem to have a philanthropic angle. There are 12 million cancer survivors in the US right now. 28 million world wide. From a financial angle – there is a market…a huge one, so I can understand why they would sell cards. What do you think?_____________________________________________________________________________________________________Michelle GerencserAnna, I wholeheartedly agree that this does seem to be a commercial activity masquerading as care and concern. I don’t think they have appeared in the UK yet, although that’s only a matter of time. They’ll have to move the Happy Divorce cards along a touch. Yes, send a caring card, or better still a fundraising card. So many ways to show someone they’re in your thoughts- maybe these only suit those with little imagination? I’m sure some send with the best of intentions and are gratefully received. Whatever next eh?
Everyone remembers where they were when JFK was shot; when the twin towers fell; when they discovered Princess Diana had lost her life on that fateful drive through Paris. Steve Jobs passed away yesterday, which of his devices were you using when you found out? For me, it was my iPhone. For others it was online via their Mac, a few would have learned the news on an iPad. Even those of you who don’t subscribe to the Apple way of life, most likely read of Steve Jobs passing via a device that was heavily influenced by his innovation.
There is no doubt that Steve Jobs was one of the most innovative, creative, influential men of our century. His leadership, vision, passion, dedication and utterly daring approach is exemplary to this and future generations. Steve Jobs, and his team at Apple, shaped the way we now use technology. As co-founder of Pixar, he brought animated movies to a new level. His approach to retail (as evidenced in Apple stores around the world), changed consumer expectations and influenced customer service departments internationally. In short, the man is far greater than the Apple brand.
Now, more than ever, it pains me to see a life cut short by cancer. I am reminded why I chose Livestrong as my non-profit to support in the marathon. But, most importantly, I am urged to live life before I die. “Life is too short” may be an over-used cliche but I am starting to see the truth in that little phrase. There are places to see, fun to have, dreams to follow. Over to Mr Jobs (he says it better than I can):
I found myself pushed way out of my comfort zone with my latest writing project. It was an assignment I pulled from the board at Yahoo. The topic was a favourite album from 2011. There was no contest – Elbow – ‘build a rocket boys!’.
I have found that I can write on some topics quickly and freely, but this one took me quite a while. I love music and I love this album, but I am not a musician; so I really had to work hard at making certain I sounded like I knew what I was talking about! (I’m still not sure if I pulled it off). The whole process got me thinking about why I did that to myself. Then I thought about all the other occasions I push myself into that zone and realised that I spend quite some time out there. I think it probably stems from childhood. I was very lucky to have some exceptional experiences when I was young. I thought nothing of jumping on a plane at age 12 to go and spend a couple of weeks with a family I had never met before, in a language I was only beginning to comprehend. Experiences like that have facilitated “out of my comfort zone” to be my comfort zone! Without them I may never have agreed to live in Spain (before learning the language); perhaps I would have resisted a move stateside. Each experience has been a building block for the next.
I am preparing for my first marathon this October – that is most definitely out of my comfort zone! With all the training I am doing I can’t help but be pulled in to other people’s running challenges. I have been following a group (one of whom is our landlord) who have just run an ultra-marathon: 100 miles through the Black Hills of Dakota. Meanwhile they have raised a huge amount of money for a local charity. Their achievements have been phenomenal! It just shows that some people’s comfort zone extends way past the end of mine! Here’s a link to their facebook page – AD4AP
The most notable “out of comfort zone” experiences of late are most certainly those of my husband (and other cancer patients). Their endurance puts that of a marathon runner to shame. I run further to push myself – that’s my choice. I write more difficult articles to improve my skills – again, my choice. Barry begins a challenging regime of radiation and chemotherapy today. It will extend way beyond my marathon training. This is not a choice, this is for survival. We have had a few weeks of Barry just being Barry. Fit and able to do all the things he loves: family time, cycling, soccer coaching and he even managed a spin on the wakeboard last night. He left for work this morning like any other day despite the enormous challenge that lay in his path. Yes, I push myself out of my comfort zone but Barry is taking it to a whole new level.
I actually wrote this article (see link below) a few days ago but just had it published today. It’s pretty topical following a new report that states that cellphone use may increase the risk of brain cancer. It isn’t conclusive but it does show a need for further research.
It is a topic that has interested me on a personal level but does not give me cause to blame or to ditch my phone. Rather, it got me thinking more about the things we do know about cancer and can change. The obvious one being the evil cigarettes; they drag you in, hold you there and then infect your lungs. Sun exposure is another – I’ve always taken care to use a high factor sunscreen but have recently read about how the chemicals in some of them can also be dangerous. Sometimes it feels like you’re left without options! I just got my mail order sunscreen today – Purple Botanics; a natural, harmless sunscreen with all the protection (along with their natural bug repellent). A lesser known evil is the aluminum content in your deodorant – who knew that being body odor free could come at a high price? I switched mine a couple of months ago with the hope that I’m not too late to decrease my risk of breast cancer. I haven’t even made a dent in the cancer discussion with these few points. The whole cancer world is a minefield! It can, and does affect absolutely anyone. And, although research is constant and we have started the fight, we are along way off winning the battle.
“Daddy, will I ever get tumours?” Patrick, aged 9 years. Last night in the car.
The question didn’t come out of nowhere exactly; Barry was first diagnosed with a grade 4 tumour (glioblastoma multiforme), in September and is awaiting results of a second tumour that was removed a few weeks ago. The children (we also have Richard, 7) have been amazing in how they have dealt with the treatments Barry has undergone. They have witnessed ups and downs (with some sheltering, obviously) and have asked many, relevant questions which we have always tried to answer honestly but at an appropriate level. This last one however, knocked me sideways. My little boy is coming to terms with the fragility of life – something I am only just working through. This is the most difficult situation I have ever had to deal with but putting myself in the shoes of my 9 and 7 year old superstars makes me realise that I’m lucky that such challenges waited until I was an adult.
Barry explained that he had what was known as cancer. A word Patrick has come across but isn’t that familiar with. He told Patrick that unfortunately anyone can get cancer but there are things we can do, such as healthy eating and exercise, to try to minimise the risk. They also discussed things that are scientifically known to cause cancer, such as smoking or excessive sun exposure. Patrick calmly announced that, if he ever does get cancer, he would hate it to be from anything he had done – did I tell you he was 9? I am at once proud that he is capable of this level of thought but, at the same time, my heart sinks a little to think that a 9-year-old, my 9 year old, has to think with such maturity. I wish this wasn’t a part of their lives more than I wish it wasn’t a part of ours. But I hope that they take strength from their Daddy, his constant optimism, his grace and continuing courage as he deals with all this throws at him.
I watched them run into school this morning, excited for their last day of the year. Their faces bright, ready to enjoy the final day of classroom fun with their friends. Both of them delighted that I was going to get them at the end of the day and save them from a last school bus ride. They truly are amazing.
Today, I read a couple of things about Lance Armstrong within 10 minutes of each other. The second was the attached article which tells of a 60 minute interview with one of his former team mates – Tyler Hamilton. Hamilton divulges information about Armstrong’s use of performance-enhancing drugs. Whether this is true or not remains to be seen. Other acquaintances have corroborated the facts whilst Armstrong continues to deny using drugs as a cheat. I am not interested in speculating whether this is true or not. I believe it’s one of those things we’ll never be completely sure of. The closest we’ll get is a ruling in the court of law. For me, the bigger concern is what this will do to the Armstrong brand, or more specifically Livestrong.
Currently, Lance seems to be a big part of my life! I can see the yellow wristband bobbing up and down on my arm as I write. I am reading “Mile Markers” by his ex-wife, Kristin Armstrong – it is supposed to be an inspirational read about why women run. So far, I have come close to getting up at 5:30am to go for a run, (I usually go at 9am when the kids are in school), but haven’t actually taken it further than the thought – does that count as inspirational? “The Lance Armstrong Performance Program” sits on my coffee table – my husband’s guide as he takes his cycling up a notch. Livestrong has been a source of support and advice as my husband, Barry, goes through aggressive cancer treatment. Armstrong is somewhat the ideal role model in this situation. Like Barry, he is a fighter, he is strong, he has determination and a positive outlook – all winners in this battle!
Maybe he did cheat. But, his strength and grace when dealing with cancer is exemplary. Unfortunately, one can’t cheat in that fight! Believe me, if there was a way I’d condone it – wouldn’t we all? I accept that cheating in an athletic race is unacceptable but that is one area of Lance’s life. Let Livestrong and his work for raising cancer awareness stand apart from racing and doping. I, for one, will continue to wear my wristband and I will continue to use Livestrong for advice and inspiration.
Oh, the first thing I read about Armstrong today. It was a quote that Team Ortho have used on one of their inspirational banners for those running the Minneapolis Marathon in a couple of weeks: “Pain is temporary. Quitting lasts forever.” I am going to hold on to this first thing and let the second drift from view.