Total life forever – Foals
I know a face who I can show my true colours. To your arms, into your arms, I will go, when I’m low. ‘Cause total life forever, will never be enough
Total life forever – Foals
I know a face who I can show my true colours. To your arms, into your arms, I will go, when I’m low. ‘Cause total life forever, will never be enough
Total life forever – Foals
I don’t know where the sunbeams end and the starlight begins. It’s all a mystery. To fight is to defend. If it’s not now then tell me when, would be the time that you would stand up and be a man.
Fight test – The Flaming Lips
What I’ve got you’ve got to get it put it in you. Reeling with the feeling. Don’t stop. Continue
Give it away – Red Hot Chili Peppers
… three years ago, I was first ill. It was a virus, or so I thought… After an initial diagnosis of chronic kidney disease, which was enough of a shock, followed by a month of complete weakness, an inability to eat or do much at all and weekly blood tests, I was diagnosed with myeloma. The rest of the story pans out in the pages of this blog.
This year though, on the third anniversary of that first milestone in my journey through Myelomaville, I have celebrated being alive. I’m three years on, in remission, and while there are Graft versus Host Disease [GvHD] issues playing out, which require me to go into clinic on Friday, I’m also enjoying the side-effects of being on a high dose of Prednisolone (steroids), which I’m taking to treat the GvHD. The dose may well be reduced on Friday, so I’m making the most of this rather trippy experience.
Christmas Day this year has been relaxed and enjoyable… No presents, no stress of a plan to be followed, just a lazy morning in bed after almost five hours sleep (that’s good going for me on steroids); breakfast in bed of honey & sunflower bread with goats cheese (along with tablets, of course); sherry and a mince pie, before a delightful, if short and breathless walk in the sun, in the nature reserve behind my house.
And then it was cava rosado o’clock, followed by decanting home-made damson vodka… and tasting, of course! It is one of the best I’ve ever made. Then on to prepare and cook a roast chicken dinner with my friend, which with a chestnut stuffing and covered in rashers of bacon, was succulent, savoury, moist and almost sweet – totally scrummy!
You may notice an enthusiastic nod to food, drink and taste in the above paragraph – that’s all down to the steroids. While I’m on them, I am not only compelled to eat anything that stands still long enough, but also to really enjoy doing so. It’s very seductive. But how to describe such oral pleasure?
As an answer to my writing needs, I came across a word of the day: parageusia, meaning an abnormal or hallucinatory sense of taste. I think it’s usually used to mean an unpleasant, metallic taste, but I’m reclaiming it. So for now, I am parageusic and loving it.
Further, I have a proposition regarding Santa Claus… He’s a red-faced, rotund, fat-bellied person, with a crazed gleam in his eyes, who is jolly with love, gifts and merriment. What do you reckon? He’s only on bloody steroids, of course! HO HO HO!
Meanwhile, as a counter to the steroid-induced euphoria, I am facing the same thoughts as my good friend, Wendy, who writes in her blog: “According to the most recent UK stats for survival from Cancer Research UK, I am one of the 72.3% of women with myeloma that have survived more than a year. Will I be one of the 37.1% who survive five years (the five-year relative survival rates for myeloma are among the lowest of the 21 most common cancers in England) or one of the 14.9% that survive 10 years?” These are my questions too.
So, alongside the wild thrills of steroidal sensory-stimulatation, these thoughts are also my companions today.
But this is how I live these days… With joy, with tears and sadness, with fatigue and lack of memory/concentration, with awe and wonder, with fear and anxiety, with love. And with deep appreciation for the opportunities this journey gives me (yes, I am that cliché) and the support of everyone who has been and still is there for me. Whatever happens, thank you all. x
So there we are, Colin & Deborah, Lorna & Mike and I sitting in the garden on Sunday afternoon after the party, talking about the party, the great music, the friendly people, the fabulous weather and the amazing raffle prizes, when Deborah quietly mentions that she still has an unclaimed raffle prize, for which she needs to find a recipient…
Apparently a child had won it in the raffle and neither he nor anyone in his family had wanted it, so he had given it back. But the band was due to play, so there was no time to draw another ticket, and it got forgotten in the Jarvis hysteria.
Now, in the calm of a sunny Sunday afternoon, she remembered the rather unusual, unwanted gift and wondered whom she could give it to?
Here’s where it gets a bit spooky, as in coincidences and synchronicity (which I’ve actually been experiencing in high volume recently, so perhaps I shouldn’t be too surprised?)… On my way to the party, I noticed a sign offering light aircraft flights for birthday or anniversary gifts. Never having had such a desire previously, I surprised myself by thinking that I might want to tentatively consider adding that to my List for Living, as part of my intention to make the most of life. Who knows where that mad idea came from?
Maybe you’re ahead of me here, but what do you think Deborah’s unwanted raffle prize could be?
It’s only a 30 minute flight in
a 1934 DH85 DeHavilland Leopard Moth!
So, let’s see… the only other people in the garden have already won two fab prizes, with which they are more than happy, Deborah has already been offered a flight in the same plane by the owners, by dint of it being her birthday party and having myeloma, I guess. And I am not only an honoured guest, who has myeloma and who didn’t win anything in the raffle the night before, but I have had a significant prompt from the benevolent universe to consider taking just such a flight…
Deborah didn’t hesitate to offer it to me. Feeling somewhat embarrassed though, I hesitated to accept. But how could I NOT accept, after such a huge cosmic nudge, plus some excited encouragement from the gathered company? Well, obviously I couldn’t NOT accept… so that means I DID accept. And having accepted, that means I actually have to take the flight. Despite all my usual bravado, I was/am secretly a tiny bit terrified. I didn’t do anything about booking a date for a couple of weeks, while I allowed the astonishment to fade a little and the reality of it to sink in.
While writing this post, I decided to be brave and pick up the phone to make contact with Kate and Martin, the people who own and operate the plane. Even though I am not ready to book a date yet, I wanted them to know that the prize was received and appreciated. I also wanted to find out a bit more about how it all works and what I need to do.
They were delighted to hear from me and willing to be very accommodating in terms of dates and even place. The plane normally lives at the Imperial War Museum in Duxford, Cambridgeshire, but they are happy to fly it up to Nottingham airport for my flight if that’s easier for me. Kate told me that her daughter went to Uni in Nottingham and she would occasionally fly up to visit her. I had to laugh; it’s such a different world!
I assured them that I would be quite happy to combine the flight with either a trip to Cambridge or a visit to my new friends in Hertfordshire, so Duxford will be fine.
As for the date, they were happy to hear that I don’t want to book anything before September as we all are busy over the summer. The only thing I need to be aware of is the weather, so leaving it until October may prove difficult. The plane cannot take off if the wind is blowing in the wrong direction for the runway, nor can it fly well if it’s too gusty. I’m pretty sure I’ll feel less nervous if it’s a calm day and I’d much rather fly on a bright day when I can see the countryside below. Apparently, as long as the clouds are not too low, there’s no problem, they simply fly below them. I dare say I’ll learn more about aviation basics when I hit the runway (not literally, I hope!).
We left it that Martin will call me late August to set up three possible dates that will be either confirmed or cancelled nearer the time, depending on wind, cloud, rain, etc.
I’m hoping that I can persuade my friend to accompany me, although the flight itself is just for one, so she’ll just have to watch from the ground. Being scared of flying even in a regular commercial aircraft, she will be SO relieved. This nearly 80 year old monoplane would be beyond the pale.
Of course I’ll write all about it here when I actually take the flight. Woo hoo! Or should that be “YIKES!!!”?
Today is a good day….it is my Stem Cell Birthday. Two years ago today, I was sat in the Royal Marsden Hospital in Sutton receiving my stem cells back after a massive dose of chemotherapy that would have rendered me useless had I not been given back my lifesaving stem cells.
I can’t really believe that it was two years ago….although that said, in some ways it feels like far longer than that as so
much has had happened in that time. But two years ago, my life went through a change that I find hard to even explain….I’m not sure how to put into words what happened back then and how it felt and how it affected every little bit of my being. It was a strange period…I had thought about rehashing it all here now, but then I wondered why I was doing that….after all, it is the past. And I’m not one to live in the past…..it’s not healthy and it’s not good for keeping up morale!
But safe to say, post transplant, it was a 6 month period that challenged Nick and I massively. We had to learn to work together to get through a period that made us look at our life and make sure that we knew what we wanted moving forwards. Strangely, in the short term that was easy. It was all about us….the family….being selfish. We looked after the four of us and made sure that WE were our priority. I think that we did that well. And even now, when life is so different to how it was two years ago, our life is different to how it was pre-myeloma. Despite being massively busy with jobs and commitments outside of the family, the family is still key to us. I know to some people that is always the case, but I think that there was a time before my diagnosis that whilst my family meant everything to me, I would allow what other people needed, to take over. That is no longer the case and I hope I won’t allow us to drift back to that (and when I say ‘us’, I really mean ‘me’!
I am lucky. I am so lucky. I know of so many people who had their transplants after me but who have since relapsed. Sadly, there are even a couple who are no longer around today. These sorts of ‘anniversaries’ for me are always tinged with an element of sadness as you remember the friends that had supported you throughout, but who are no longer here. However, those that I am thinking of, I genuinely know wouldn’t want me to be sat here mourning them, but would want me to be living my life as positively as I can do. So I will try to do that for them (with a bit being for me too of course )
So today, 2 years post transplant and 4 years post diagnosis, things are looking good. I am back at work, with a new career that I love! (For those of you who have been following me, they were amazing when I explained about how things were too tough and have been so supportive in ensuring that the workload is correct! I am one lucky person working for a charity that truly cares so much for its team). I play netball on a weekly basis. And more than any of this, I truly believe that myeloma no longer dictates my life. It will always be a part of me….there will always be an element of fear when I go for monthly appointments, but it no longer dictates my life. There are days and weeks now where I don’t even think ‘myeloma’! I even had an appointment with a financial advisor yesterday and whilst I had to clarify my situation, I was still talking about working for the next 20 years….we can only hope! It is a far cry from my early diagnosis when I didn’t think that I would ever see my children reach secondary school (only 3 years away now!) and to be honest where I didn’t even know that I would be here today writing this blog.
So I am a happy lady as I write this tonight. And I hope that I have many more anniversaries to regroup and remember how far we have come since that diagnosis in 2009.
I would like to say that this post was about a marvellous piece of sewing, but it’s not. In fact I have sold my old machine on eBay and it is being collected over the weekend.
I would like to say I have knitted a wonderful cotton top, but the knitting is still sitting in a bag under the coffee table, untouched for quite some time.
It isn’t even about a cotton-tailed rabbit, which is just as well as Toni would have put paid to it by now.
No today is our cotton wedding anniversary. Happy anniversary darling, your cotton socks are in the post.
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:
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:
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 my friend, 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 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!
Life is like a bag of revels, just when you think you’ve sussed out the toffee you find yourself biting into a creme (or in my case a coconut) one. Yuk! Yes I’m old enough to remember when there was a coconut in there rather than the equally despised coffee. Little did we think when we got married, a year ago today, that we would be two guests down having mis-placed Sharon and now Paula (the rest of you better watch out I reckon).
The tributes to Paula have been done so much better by Sandy and Phil to name just two of her friends from across the pond. Instead I’m going to do a bag of revels, facts about Paula tribute. You’ll have to decide yourselves which, if any, are the dreaded coconut.
Paula hated my courgettes with a passion. It was so bad she wouldn’t even have them in her house. The poor things travelled all the way there just to be discarded.
Paula liked to listen to her music in the car at very high volume which meant every time B. got in the car after her he would find his eardrums practically bleeding.
Paula’s favourite film was Predator closely followed by anything that would give a sane person nightmares and Steven Seagal action movies.
Paula used to go to work in a dress and Dr Martens and her friend Chris who she worked with often had to tell her to keep her giggling down as the senior partners could hear her upstairs.
Paula’s favourite group was Metallica (hence B.’s bleeding eardrums) and she loved Alice Cooper, Bowling for Soup, Def Leppard and generally “noisy” music (or should that be noisy “music”.)
Paula had always planned to marry a 6′ 5″ blond builder, but to quote B. himself, she married him instead. Having said that, B. wanted to marry a page 3 girl and got Paula instead, so it was a fair exchange.
Paula had a wicked sense of humour and I mean just plan mean. She would send Chris, who knows nothing of knitting or crochet, to get her wool. Now Paula knew that Chris knew nothing and would send her knowing she would be asked questions such as “DK or baby?” “What gauge needle is it for?” “What’s the tension?” Poor Chris would plead with Paula not to send her, but Paula showed her no mercy.
Paula was stubborn. Auntie Anne recalls Paula’s mom taking her to get her hair cut and Paula stubbornly refusing to have it done. It was cut in the end, but Paula just sat at the table and screamed for a long time after.
Paula would always order something different from the take away menu. While B. like me stuck to the same thing, Paula would flit from dish to dish like a gastronomic butterfly.
Paula has left a big hole in so many people’s lives, but she wouldn’t want us to dwell on what we have lost, but what we gained from knowing her.
|The beautiful wedding present Paula made for us.|
So we will raise a glass to Paula and Sharon tonight as we celebrate our first wedding anniversary. I’m just annoyed I didn’t get the crocheted bed spread I was promised.
“Anniversary: The annually recurring date of a past event, especially one of historical, national, or personal importance.” – American Heritage Dictionary With cancer being so prevalent in our society today, it seems as though I can be in a room full of people and at least a third of them have had cancer and the […]