When I was going through my stem cell transplants, they were very insistent on making sure that we had at least 30 minutes of exercise every day. And as any person who has gone through the SCT process, you really do not want to do much of anything, but obviously as noted by Danny and Pat, there are benefits from exercise that are extremely important to the patients long term survival.
The majority of data on life expectancy, survival rates, and a reduction in the probability of relapse come from studies of the far more common forms of cancer. And as could be expected, the rarer the disease the less data that is available. I think that the data that Danny and Pat provide explains the biology of exercises benefits, and as a result we can hope that the experience from the studied cancers can transfer to multiple myeloma.
So what do some of the studies for other cancers show. Some of the more robust studies come in the area of breast cancer, and colon cancer. You can do your own research on these cancers, however, I will provide a few examples.
Dr. Meyerhardt, of the Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, one of the country’s leading researchers on the impact of lifestyle factors on cancer outcomes. He stressed that regular non-strenuous exercise can significantly improve survival in people recovering from colorectal cancer. Color rectal cancer recurrence or death was reduced by 49% in the people who regularly exercised.
In 2005, Harvard researchers found that simply walking on a regular basis helped breast cancer patients. The study focused on about 3,000 women diagnosed with breast cancer who are part of the Nurses’ Health Study. Those who regularly walked three to five hours a week (or got comparable exercise) were 50% less likely to have a recurrence of their cancer than women who exercised less than an hour per week.
So, IF, and it is a big IF, we myeloma patients can obtain similar benefits from exercise, then it is time for all of us to get moving, join a gym, walk, ride a bike, and any other activity that your physical limitations will allow. Because a 50% benefit is a remarkable improvement to obtain without much cost or effort at all.
And as always, may God Bless your myeloma journey/ Gary Petersen editor@myeloma survival.com
For more information on multiple myeloma go to the web site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1
Has it really been over a week since I blogged? I’m not sure what to say.
There are two amazing things about feeling better.
The first is that it can compound on itself. One month ago, when I unplugged from the hospital, I was feeling good, except for the fatigue. But there is really no comparison between then and now. If I felt better then, that was nothing compared to how much better I feel now. I have energy now (most of the time). My muscle ache is diminishing. I can swim 40 lengths. I can run, tentatively (on a machine, I haven’t tried the unforgiving earth yet). I can go out and about largely as I please – even spend the day looking after Lyndon (we went to a play group yesterday). Even my back is much much better (though still a work in progress). But I suspect I still don’t yet feel anywhere near 100% of what I can – I guess there’s more dimensions of better coming.
The second amazing thing is, looking back, if I feel so much better, just quite how bad was it before? Thank goodness I was never really aware of how bad the bad times were.
It is like being reborn. I’d encourage you all to experience it – except to really appreciate it you’d have to go through the whole build up – broken back and bone pain/ velcade, steroids and high dose melphalan/ sickness and side effects/ loss of hair and digestive tract/ fevers and no immunity/ anaemia and transfusions/ fatigue and muscle weakness… Maybe not, eh?
As a celebration of rebirth, here’s a pic of my azalea. In a normal year it is the first thing in our garden to flower – often before the end of March. This year it, like me, has been feeling the cold, but it is just beginning to turn heads.
Jani continued to work hard on organizing the Mt. McCaleb Cemetery veteran’s list so the flags can be placed on the graves this coming Friday, 24 May 2013.
I, on the the other hand, went to the Post Office for our mail, delivered it to Paco, and spent the rest of the day on the sofa. My Gram’s best friend’s former house is getting a facelift right now…located just across from my father’s house – he has something to watch all day.
I’m pretty sure my platelet count has improved. My nose is not bleeding at all any more. We go to St. Luke’s Hospital in Twin Falls tomorrow for a lab check and appointment with Dr. Padavanija. Hoping for good news.
Jack Latimer came and applied fertilizer/weed killer to the lawn today.
This machine he uses delivers liquid fertilizer and weed killer.
Jani walked the cemetery for hours matching veteran’s graves to our list – The commander of the Joe Nowacki American Legion Hall (see LABEL on right side of blog for history of the Mackay, Idaho American Legion) here in Mackay, Campbell Gardett, called to get the list, but I told him it wasn’t quite ready and he’d have to contact Wayne Olsen prior to Friday. Wayne and Shirley Olsen are the Cub and Boy Scouts leaders and hope to have scouts to help actually plant the flags at each veteran’s grave. After Memorial Day, the flags are retrieved and stored at the American Legion Hall.
Just before sunset, Jani walked the dogs on the MIne Hill while I slept on the sofa. Boy is my life EXCITING of late :).
It is something that has been in the back of my head since all this nonsense started, but this last week, I finally acknowledged the sad truth. I, Emma Jane Jones will never be able to go on a roller coaster again.
[sigh]
Sure, I was not going on one every week, but I enjoyed the occasional trip on a thrill seeking adventure ride. I do not think I am the sort of person to grow out of it. I know this because Big Sister is older than me and she went to Alton Towers last week. I was quite jealous.
As with anything I am told I cannot do, I want to do it even more. I want to be strapped in, spun around, go upside down and more than anything I want to feel that nervous anxiety in my stomach just before the ride takes off and then again when you come off it and wait to see how hideous one looks in the photographs taken at the worst possible moment. In this circumstance, I usually look like I am pushing out something really big whilst being incredibly comfortable with my double chin.
It is indeed sad that I am now one of the people to whom the warning sign at the start of each ride’s queue, applies. I have a known back problem. Sensibly, if I will not step outside my front door when it is icy, I am most certainly not going to run the risk of paralysis by giving in to childish fancy. This sort of thought probably goes against the key principles of the roller coaster. You are not supposed to think about being a grown up when you are going on something designed to make you feel sick.I have to. And that is the sad truth.
The most frustrating thing is that I spent a period of my life, morbidly obese and thus unable to go on some of the really scary rides because I could not fit in the seats. That my friends is a very embarrassing true story. If only I had known what was to come. Potentially, I would have lost weight sooner and taken up residence at Thorpe Park. After I lost weight, I got to spend a wonderful three days with my family in Disneyland going on all the rides they had to offer and stuck two fingers up at the Tussauds Group, by giving them my money and going on all their rides. It was so much fun, it is was mindless and I felt free.
Now, My Myeloma dictates that this sort of fun is no longer possible for me. Unfortunately, any thrill seeking is going to have to be done by broadening my mind. Fun.
EJB x
On Friday, I had an hour in Edinburgh between the end of my work meeting and the train back home, so I did the only sensible thing and aimed for the nearest yarn shop :)
This was my first visit to Kathy’s Knits in Broughton Street. I had read a friendly review of the shop on Jean Miles’ blog and the promise of local and UK-sourced woolly goodness was too enticing to miss.
I was not disappointed.
I was the only customer, so I had the undivided attention of Kathy herself.
I went there in the hope that she might stock Yarn Pony. I had bought a single skein of sock wool at the Edinburgh Yarn Festival, overwhelmed at the time by the choices and possibilities. Ever since, I have yearned for a cardigan’s-worth of Mica‘s yarn. I had been hoping she might open an online shop, but it hasn’t happened yet. Soon?
So when I spotted three cubby-holes of the mystical unicorn-like wool in Kathy’s shop, the outcome was inevitable.
I spent a long time weighing up my choices. There was not enough of any one colour to make a cardigan, but I was determined not to fall victim to my down-sizing tendencies, which would have sent me home with a lonely single skein to make a shawl or a pair of socks instead. This is the year of making things “for keeps”, so a cardigan’s-worth of Mustang superwash merino it had to be.
Kathy humoured my indecision and helped me try out all the yarns side by side. For a while, it was going to be a beautiful mottled mossy green with, maybe a deep claret contrast to make up the yardage. That was a close thing.
But in the end (and don’t forget I only had twenty minutes to spend in the shop!) I plumped for seaside stripes: sea and sand and sky. 1200 metres of hand-dyed beauty. Summer holiday knitting if ever I saw it!
I have not yet chosen a pattern. But it might be an adapted Vitamin D, or something more fitted by Ann Weaver? We’ll see. For the time being, it is stored out of reach of moths (I hope) while I finish FL’s birthday socks.
I also popped a shawl pattern into my bag: Firiel by Lucy Hague. There was a sample in the shop (using Yarn Pony, of course!) and I was smitten. It is worked sideways, so you can weigh your yarn, knit to the midpoint with half the skein, and then use up the remaining half on the second half of the shawl, with no wastage or fear of running out. Clever!
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| Picture copyright: Lucy Hague |
The photos on the pattern page are lovely but don’t do it justice – it looks even more striking in real life: a solid garter stitch centre with graphic lace stripes in a jagged-edged frame. It’s one of those strong and simple shawls which could work equally well as a man’s accessory.
I plan to try it out with some of the Crown Mountain Farms Sock Hop from my stash – maybe the denim blue colourway? Mmmm!
…to go camping even if it is in the conservatory.
It is so romantic and exciting decorating the place with candles and snuggling down with a hot chocolate. Colin and I are so lucky to have found each other, we never bore of each others company even though we are spending much of every day together nowadays. All of this makes it so much harder to bare to think I have a life limiting disease. I just need to make the most of the time I have and this is why I am considering taking up the option of retiring early due to ill health. Especially if I am only going to get half pay when I am off sick which unfortunately I am bound to be again and my entitlement to full pay runs out in June. Having said that, this is a very difficult decision to make. I have spent the majority of my life working in mental health, passionate about making a difference and reducing the stigma surrounding mental illness. If I take the option that gives me the biggest lump sum which is the most sensible offer to take, I will never again be able to work in the NHS. At least I will be leaving on a high I suppose. I have designed and developed a service to improve children’s mental health that is working very well even without me there. I know we have long waiting lists but really that’s only a sign of our success and if properly funded in the future this can be addressed. But I would be losing a hell of a lot, I have built up lots of friendships with my colleagues and genuinely feel cared for and respected by them, but there is my husband and family to think of. I have given over most of my time to my job over the last fifteen years at my husband and families expense, often working late into the night and at the weekends. I need to think realistically and that means facing the likelihood that I may not reach retirement age. If I do retire early it will be a struggle to make ends meet but we will have each other and I am sure we will manage somehow. I am so ANGRY that this blasted disease has put me in this position but it has, I just have to accept it and learn how to live with cancer.
Today I get to go up to London again for some tests, a two hour meeting with the Harvesting Nurse so that she can explain the side effects of the treatment I have to endure next and gain my consent, and a consultation with the doctor. I have a list of questions prepared and will ask his advice on taking early retirement. I have been avoiding the ultimate question but I think I need to take a deep breath in and ask in likelihood how long do I have. Even thinking and writing this down brings tears to my eyes and again begs the question why me? I haven’t done anything wrong and all my life I have only wanted to help people, it just seems so unfair. Sorry rant over, I suppose this is what this blog is all or at least partly about. Getting it all out in the open, letting go of my feelings and sharing them with those of you kind enough to listen and read my blog. Thank you again for sticking with me through the thick and thin.
Talking about happier times I have a party to get sorted. So far only five people have purchased their tickets. The idea behind you paying for your tickets now is that we get to know numbers. So please do purchase yours and if you haven’t received your invite and payment details send me an email please. If you don’t like paying using bank transfer send me an email and let me know you are definitely coming and we will sort something out. It is only just over six weeks away. Thank goodness for those lovely people who helped to clear the barn out. I must now get on with making tablecloths, decorations etc. I think we need another party committee meeting I am starting to panic a little, all quite unnecessarily I am sure.
Well I had better get out of my camping bed before the postman or someone else turns up and wonders what’s going on, not that I am really that bothered!
Have a good day and like I say over and over again do try to appreciate it, time is the most precious resource around so spend it wisely.
Love Deborah x
I’ve done it! I’ve survived the first year post-allogeneic (unrelated donor) stem cell transplant. That’s really quite something to celebrate, especially as I’ve not just survived, but I’m doing pretty well… you might even say thriving!
Thursday 16 May was the day to say:
Happy Birthday to me! Something special was required to celebrate… Number one on my List for Living and gratefully inspired by Helen Fawkes was to go to Paris for lunch. How decadent! How crazy! And as one friend said, “Oooooo! Posh!” What better way to celebrate a momentous event like the first birthday of my baby immune system?! So I could say instead:
Joyeux anniversaire à moi! I invited nine friends to join me. Some are fellow travellers on the myeloma/cancer journey, while others have accompanied me from the beginning with support and love along the way. So as well as a celebration, it was also an opportunity to acknowledge and thank good friends. Unfortunately, four of the nine couldn’t come for various reasons. I’m sorry you couldn’t be there, Debbie, Helen, Janette and Lynda.
A few weeks ago, I met my transplant twin, Julie, at clinic. I hadn’t seen her for a while as our appointments haven’t coincided and she had lost her phone, so we had temporarily lost touch. Of course I invited her too, as it would be her anniversary the same day. Sadly, although she was very enthusiastic about the idea, she wasn’t able to come either.
Two friends who could come wanted to go to Paris for a few days around that time anyway, so they booked their trips to coincide with my special day and would meet us on arrival at the Gare du Nord.
So the day arrived and saw just four of us travelling. The trip took on an even more decadent aspect as while Helen Fawkes lives in London, so Paris is only two and a half hours away, my little gang started the day in Nottingham so we had an additional two and a half hours each way. That meant a very early start… waking up at 5:00am! Fortunately the excitement of the day spurred me on to leap out of bed and be ready in good time, remembering tickets and passports, to head off for the station.
It was a 06:28 departure from Nottingham for Sam and Janet, with A and I joining six minutes later at Beeston. We’d booked first class tickets on the trains to and from London, so big comfy seats, lots of space and complimentary drinks and snacks helped to ease us awake.
During the morning, I received congratulatory text messages from everyone who’d been invited but wasn’t there, which made me feel like they were with us in spirit.
Going through Eurostar security at St Pancras, I chatted away merrily to a security guard, saying that we were going to Paris for the day. He reckoned we were leaving a bit late, taking a train at 09:17, to which I responded that we had started travelling at 6:30, which he acknowledged with a shrug and a smile and wished us a great day.
Both the London train and Eurostar journeys ran smoothly, bringing us to Paris for 12:47, where Rhiannon and Wendy were waiting together, welcoming us with big smiles and the obligatory continental bisous on both cheeks, as we came out of the terminus.
Despite an earlier agreement between three of our party, and despite Wendy advising me that only tourists wear them, I was alone in wearing a beret. but it came in handy during the day, as I was easily spotted when we became separated.
I’d booked a table at Brasserie Julien, dubbed “the most feminine of the Art Nouveau brasseries”, only a 15 minute walk away from the station. We were greeted warmly and received superb service, with plenty of joking, a mixture of Français and English being spoken by everyone. The best bit was when one of our party admitted to remembering just one French phrase from school… “Je voudrais un citron, s’il vous plaît” (I’d like a lemon please), which surprisingly but sadly was not needed all day. I’m sure we could have got her to use it if only we’d tried harder.
Our lunch began with champagne, with which we toasted not only Julie (in absentia) and me, but also Debbie, Helen, Janette and Lynda, as well as a friend in California whose birthday it was that day. We also raised a glass in memory of Abir, a Libyan woman Sam and I had both befriended at clinic, who sadly didn’t survive her stem cell transplant.
While the food was not the very best I’ve ever tasted, I enjoyed my escargots and foie de veau, followed by crêpes Suzettes. But mostly I enjoyed the great company. Not being rushed, we took time to chat, giggle, eat and drink (an excellent Sancerre!), in a very relaxed manner under a beautiful stained glass roof, surrounded by Mucha-esque paintings.
Lunch lasted a longer than I’d anticipated, but we still had time to jump in the Metro and head towards Montmartre, where we took the funiculaire up to Sacré Coeur, managing to avoid an opportunistic pickpocket en route. We had a wander around the Place du Tertre and a few of us sent postcards, but hélas, le temps passe vite quand on s’amuse (alas, time flies when you’re having fun)!
There was no time for a drink at a terrace cafe. And somehow we didn’t get around to buying a beret for Sam or Rhiannon. We made our way back to the Gare du Nord à pied, all of us wishing the afternoon could have been a bit longer.
We hugged goodbye to the two remaining in Paris and made our way up to the Eurostar check-in. The rest of the evening/night was spent rolling rapidly through Northern France and Southern England with any one of us yawning or nodding off at various times and none of us talking very much, but all of us brimming with grins, memories and bonhomie.
Thank you to my lovely friends for joining me in this crazy idea and making it such a delightful day, more special for being so brief and so wanton. As Sam put it, “when else am I ever going to be invited to go to Paris just for the day?!” So eloquent, Sam! 
“Look,” said my friend Valik. “There’s a spider on that thing.” I looked where his gaze was pointing and saw my anemometer. I have a little weather station and had installed the small wind gauge on a post on my porch. I looked at the three little cups as they swung their six inch circle slowly, reacting to the gentle breath of breeze. A spider had erected a single strand of web between two of the cups and was sitting on it, riding around in a circle. An arachnid merry go round.
Valik and I had been chatting, he’d asked about my cancer. In spite of having known him for going on a decade, I’d never had the conversation with him about being sick. I’ve had the conversation countless times, but somehow it had passed by my friend. I kept looking at the spider and wishing the wind would pick up just a little and give the spider a real ride. Not a violent one that would eventually have centrifugal force toss it off, just fast enough to be like a merry go round that carried children, lovers and the occasional someone reminiscing about days gone by. I bore the thing no malice, although spiders are on my kill on sight list usually. Thou shalt not suffer a spider to live.
But this little guy seemed to mean something other than the horriffic nightmare image that spiders usually make me think of. As I looked at the little thing whose world was slowly rotating I thought that it wasn’t much different than all of us. Our world rotates too, yet not in a way that we can easily observe. We don’t see other spatial bodies whizzing by, blurred by speed and the slowness of our eyes. I wondered of the spider knew that its little world was rotating. It certainly showed no anxious behavior. It traveled from one cup to another and back again, or paused to sit on the cabling between the cups it had constructed, all the while appearing completely nonplussed.
I also thought that I was looking at a metaphor of my own existence. Going repeatedly over the same ground again and again while getting nowhere. Spending my days in a game that I moved from minute to minute, passing my time as I await the inevitable coming of my closing credits. Around and around the clock, I ride the sweep second hand much the same as the spider was riding the cups of the anemometer. As I watched it, I felt an odd kinship; odd because usually when I see a spider I immediately think to kill it. But in this case, I equated the little being with my own meager and unproductive existence and its death was not an imperative this time. Rather, I enjoyed watching it move in its unbusy way and going around and around.
My friend and I chatted now about little helicopters and the quadcopter drones I fly. We looked out at the yard from my back porch and talked about how a couple hundred feet of alitutde could change the perspective of one’s neighborhood. Looking down on it, seeing the houses of the neighborhood and the various yards looking much more interesting than at ground level. I peeked again at the spider and though how different the neighborhood would look from its tiny perspective, especially seen at ground level. I wondered if it was seeing similar differences from its high perspective. In proportion to its size, it had to be a few hundred spider feet above the ground.
But it was depressing to find myself so easily compared to an insect traveling in a lazy circle. The truth of it, was, undeniable though. My life is indeed one of waiting for the inevitable and the things I do don’t accomplish much. They keep me entertained to a degree, but a small one at that. Of course, in my opinion, much more active lives are even less productive than mine and I still have a strong curiosity about many things. I suspect I’ll be trying to educate myself right up to the point that everything fades to black. Even a spider has the ability to be a muse, and perhaps it’s not a very erudite set of thoughts, the little bastard got me thinking.
I looked back at the anemometer and watched the spider take another orbit. The breeze amplified and quite suddenly there was no spider, only a wisp of silken web trailing a wind cup.
It’s THE question we’ve all asked ourselves and our doctors at some point in this “journey,” I’m sure. But let’s start at the beginning… Sheila Dillon, BBC Radio 4′s Food Programme Presenter, was diagnosed with multiple myeloma in 2011. She had chemo etc. And yesterday the BBC published an article she wrote about cancer and [...]
