Hello, so here's an update:
I'll start with the weekend; it was not great. Man's movement was slow and painful. As a result, his mood was low having felt restricted for so long now. It's all very well sitting around and watching telly if that's your choice but now he's had that choice taken from him, it's very boring. And depressing. And of course there's no biking to watch anymore. He said many times over the weekend that he'd like to just be able to take the dog for a walk. And there were many times when he didn't say a word (which is not like him) but suffered in silence.
Pain is a constant reminder of the infestation within his body and therefore it's easy to let it take over his mind. I made the misjudgement of asking our lovely friends to borrow a walking aid to help Man get about the house. He politely declined it - it didn't get further than the front door - and they kindly took it back to their house. I felt awful, I felt I'd pushed something on him that he clearly wasn't ready for. Most of all, I didn't want to put the idea into his head that I viewed him as disabled. I mean he clearly is (!) but obviously his pride and will is nowhere near ready and that's fine. And so, pathetic fallacy style-y, we sat indoors on Sunday, hardly moved and watched the rain relentlessly fall outside.
BUT, by yesterday the mood - his and mine - had lifted. The sun was shining and it was our final trip to Chaucer for Round 3. Man made no bones (pun intended) about the pain he'd been in and the nurses listened warmly and prescribed Gabapentin for his nerve pain. The usual bloods were taken, Velcade injected into his belly and Dex was administered. Whilst waiting to see oncologist Dr L, we were told that his paraprotein levels have gone down yet again! In 3 months they've gone from 58 to just 8 so these chemicals are indeed working, hurrah! But of course, Man's primary concern now is the damage in his pelvis and we were assured that an appointment will be made sooner rather than later to see the bone guy, Mr M, in London. Hopefully a scan date will be offered very soon.
In the meantime, full of dex (steroid) and the new and wonderful Gabapentin physical improvement was visual to me and felt keenly by Man. In fact, the bloke literally sprung out of bed this morning and did a little naked dance for me, a la Strictly Come Dancing style 😄 Believe it or not, it was the most welcome sight seeing my hubster prance off to get the morning coffee...
Movement breeds freedom and freedom soothes the mind. After a pretty shitty week, all is much better in the world and we're back to flying the #teambradley flag. We've got a nice weekend to look forward to, we've got sun on our faces and meds doing their job.
Oh and the other big news is that Man is currently writing a blog entry - watch this space!
Big love xx
PS - Bone scan appointment just in - 11th October :-)
Showing posts with label chemo. Show all posts
Showing posts with label chemo. Show all posts
Wednesday, September 26, 2018
Monday, September 3, 2018
Growing pains
Firstly, thank you so much for your warm wishes, kind messages, visits and phone calls since my last post. They mean the world to us to know that you're all behind us. Again, it highlights all that is great about human nature; your sincerity and positive attidudes makes Man smile daily.
After not being at work for two months - shamelessly sunning myself and eating myself stupid - I returned today. It's a different role but as I walked through the school's doors I was greeted with such friendliness from my old muckers, asking how Man was doing. I'm proud to tell them that "he's well" which of course makes people feel better and knowing that the meds are working avoids the awkward 'C' conversation. And it's true, the meds are working.
But, as is usually the case with the internet world, life isn't always as rosy. I have so far written about the good but there is, of course, the bad (the ugly is a long way off!) Those of you who have had experience of cancer know that it's all consuming, both the treatment and the disease. As much as Man's blood results are fantastic, ie he's kicking butt, the side effects are paradoxically debilitating. Loss of taste, whilst not lethal in itself has certainly worn down Man's enthusiasm for eating. That in turn takes some of life's pleasures as well as making eating nutritious food strenuous. On top of that and some other effects, lessened mobility increases apathy. He is stoically working from home but cabin fever has definitely set in. The rule of no walking or riding have become barriers to some of life's enjoyment and there's an ever searching to keep the balance of enjoying life and not letting myeloma take over. In our minds, chemo will be over by November, in time to enjoy Christmas and winter tyres.
A precious friend of mine listened to my worries today and she expressed what my husband is experiencing as 'growing pains'. It hurts to grow a new pelvis but my goodness, he's doing it 👍
After not being at work for two months - shamelessly sunning myself and eating myself stupid - I returned today. It's a different role but as I walked through the school's doors I was greeted with such friendliness from my old muckers, asking how Man was doing. I'm proud to tell them that "he's well" which of course makes people feel better and knowing that the meds are working avoids the awkward 'C' conversation. And it's true, the meds are working.
But, as is usually the case with the internet world, life isn't always as rosy. I have so far written about the good but there is, of course, the bad (the ugly is a long way off!) Those of you who have had experience of cancer know that it's all consuming, both the treatment and the disease. As much as Man's blood results are fantastic, ie he's kicking butt, the side effects are paradoxically debilitating. Loss of taste, whilst not lethal in itself has certainly worn down Man's enthusiasm for eating. That in turn takes some of life's pleasures as well as making eating nutritious food strenuous. On top of that and some other effects, lessened mobility increases apathy. He is stoically working from home but cabin fever has definitely set in. The rule of no walking or riding have become barriers to some of life's enjoyment and there's an ever searching to keep the balance of enjoying life and not letting myeloma take over. In our minds, chemo will be over by November, in time to enjoy Christmas and winter tyres.
A precious friend of mine listened to my worries today and she expressed what my husband is experiencing as 'growing pains'. It hurts to grow a new pelvis but my goodness, he's doing it 👍
Tuesday, August 28, 2018
Dogs
So a few years ago I worked as a viewing agent, meaning I got to nosey around people's houses for a monetary reward. I was warned about a particular house visit that I was going to host - apparently the dog that lived there was as big as a horse. The advice was not exaggerated. I came face to face with Saffron, a three-foot-at-the-shoulder Irish wolfhound and fell in love immediately. I hasten to add, I'm not a dog person, never previously owned one, but her grace captivated me. I soon set to work on Man registering my interest in getting an Irish. I didn't get one, probably because they are so rare, so huge and so expensive. BUT Man relented and we are now proud parents to a bouncy, blonde golden retriever. I named her Macy-May which was my nod to NYC and also to my mum's birth month.
Moo-Moo is affectionate and loyal. She's calming, funny and always reliable. She lives in the moment and doesn't appear to harbour any bad feelings. She's happiest being with her humans and is just so grateful for life. We can't imagine our home without her.
For a 'retriever' she's a bit shit. She can't swim, despite having been bred with partial webbed paws, and she's never retrieved a thing in her life! Her jaw is wonky and she sometimes smells. But her passion for life shines through and we've learnt a lot from her. Dogs just somehow exude a wonderlust, a simple life that involves food, exercise and lots of cuddles. So that's it, the most important things are right here in front of us.
Man has been in pain for a few days. It's difficult for him to stand from a sitting position and I can tell that he's fed up. Having seen Dr L today, our fears are lessened as she announced that the blood results from last week are looking good - ie, globulin levels are dramatically reduced which indicates that he's responding well to treatment (going from 88 to an almost normal level of 37). He hasn't lost nor gained weight (probably something to do with his beloved Snickers tasting of cardboard), BP and temp are good and there are no infection markers.
But, that bloody Zometa - the bone growth drug appears to be ragging his pelvis and in an ironic way in that the healing and growth of bone which it promotes also incites pain which is somewhat crippling.
His mood day - and one day I'll get him to write this himself - is 'upbeat' - the pain today is apparently pay off for being with Jack at Lydden Hill race track yesterday. See, enjoying the moment, like a silly retriever that runs bat shit crazy around the woods and then tires herself out for 24 hours.
Quote of the day from the Man - "Bloody aching, bloody hips, bloody bollocks."
And yet the tongue is out, panting with contentment and awaiting to be fed, and that's not just the dog!
Moo-Moo is affectionate and loyal. She's calming, funny and always reliable. She lives in the moment and doesn't appear to harbour any bad feelings. She's happiest being with her humans and is just so grateful for life. We can't imagine our home without her.
For a 'retriever' she's a bit shit. She can't swim, despite having been bred with partial webbed paws, and she's never retrieved a thing in her life! Her jaw is wonky and she sometimes smells. But her passion for life shines through and we've learnt a lot from her. Dogs just somehow exude a wonderlust, a simple life that involves food, exercise and lots of cuddles. So that's it, the most important things are right here in front of us.
Man has been in pain for a few days. It's difficult for him to stand from a sitting position and I can tell that he's fed up. Having seen Dr L today, our fears are lessened as she announced that the blood results from last week are looking good - ie, globulin levels are dramatically reduced which indicates that he's responding well to treatment (going from 88 to an almost normal level of 37). He hasn't lost nor gained weight (probably something to do with his beloved Snickers tasting of cardboard), BP and temp are good and there are no infection markers.
But, that bloody Zometa - the bone growth drug appears to be ragging his pelvis and in an ironic way in that the healing and growth of bone which it promotes also incites pain which is somewhat crippling.
His mood day - and one day I'll get him to write this himself - is 'upbeat' - the pain today is apparently pay off for being with Jack at Lydden Hill race track yesterday. See, enjoying the moment, like a silly retriever that runs bat shit crazy around the woods and then tires herself out for 24 hours.
Quote of the day from the Man - "Bloody aching, bloody hips, bloody bollocks."
And yet the tongue is out, panting with contentment and awaiting to be fed, and that's not just the dog!
Friday, August 24, 2018
Round 2, ding ding
Wow, three days in France make a lot of difference! Man and I drove to Vendee with our best Scots and lived in a refurbed farmhouse in between corn fields and a cow field, bliss. Long straight roads led us to long, warm days full of food, laughs and exploration. And boy, did we eat well. Galetts are my new favourite for lunch and breakfast was usually a cheese-fest.
On medical orders, Man isn't allowed to travel, certainly not by air, but a cheeky ferry and a days' drive equated to popping north of our own border so we took our chances. All meds were taken with extra penicillin for precaution on account of Man getting a sore throat with a threatening cold. Fortunately his temperature remained steady and the anti-Bs weren't required (although he took his prescribed three other types!)
Other than the meds, the only other cancery thing we took was Man's anti-gravity chair and goodness, he used it and some! On it, Man achieves the most comfortable positions as weight is evenly distributed throughout his body and pressure is taken off his pelvis. And yes, we even took the trusty chair to the sandy beach at Saint Gilles where he plugged in music to his ears and viewed the Atlantic ocean and her hunky surfing instructors from a 45 degree angle.
On day 1, it was decided that the women and children would venture out to get supplies from a supermarket. A feat in itself and we crossed many miles before we found a half-hearted shop. At one point I felt certain I could see the Eiffel Tower such was the length of our outing. The Scottish girls made their requests for favoured French treats and Man jokingly requested a 'new pelvis'. We said that should we come across a Lidl I'm sure we'd find one in the crazy centre aisle. Pink or blue? Plastic or durable ceramic? As it is, we'll settle for Zometa to do its crazy bone making thing.
Having abandoned our friends at the farmhouse to fend for themselves with sweetcorn stolen from said fields, we set sail, arrived home and bounced straight into Round 2 of chemo - on Man's son's birthday. Birthdays are becoming significant as it was on his mum's birthday that he was given the myeloma diagnosis, so a birthday bonus for everyone.
Back at Beckett's ward this morning, we were greeted with the usual steadfast smiles and professionalism from our oncology nurses. God, they're good. Their patience, experience, humour and warmth make the visits all that more humane. True to form, Man drank copious amounts of 'free' coffee whilst he sat in his recliner whilst the drugs were dripped into his arm. But ever the attention seeker, he also logged on to a voice conference call where his work colleagues acted surprised to hear from him. Hey, it's only chemo and the world still turns round right?!
Symptom-wise, Man lost his sense of taste, has been constipated and the dex is not forgiving when it comes to slumber. But, with a diagnosis as his, he's almost grateful that they're all he's suffered. Mobility has slowed down and I put that down to the Zometa attacking the bones. I say attacking, I mean strengthening, of which the effects must surely be felt.
We see Dr L on Tuesday (the private sector doesn't work on Bank holidays) and hopefully she'll give us the good news that para protein levels in Man's blood have gone down again. Two months ago they were at 58. After the first course of dex they went down to 34. I'm hopeful they've done down further and that Man's PP levels will meet mine at 0.
In the meantime, he's gone out for a cheeky beer with a very cherished pal who misses his riding buddy. Maybe frequenting local establishments will be the new riding!
On medical orders, Man isn't allowed to travel, certainly not by air, but a cheeky ferry and a days' drive equated to popping north of our own border so we took our chances. All meds were taken with extra penicillin for precaution on account of Man getting a sore throat with a threatening cold. Fortunately his temperature remained steady and the anti-Bs weren't required (although he took his prescribed three other types!)
Other than the meds, the only other cancery thing we took was Man's anti-gravity chair and goodness, he used it and some! On it, Man achieves the most comfortable positions as weight is evenly distributed throughout his body and pressure is taken off his pelvis. And yes, we even took the trusty chair to the sandy beach at Saint Gilles where he plugged in music to his ears and viewed the Atlantic ocean and her hunky surfing instructors from a 45 degree angle.
On day 1, it was decided that the women and children would venture out to get supplies from a supermarket. A feat in itself and we crossed many miles before we found a half-hearted shop. At one point I felt certain I could see the Eiffel Tower such was the length of our outing. The Scottish girls made their requests for favoured French treats and Man jokingly requested a 'new pelvis'. We said that should we come across a Lidl I'm sure we'd find one in the crazy centre aisle. Pink or blue? Plastic or durable ceramic? As it is, we'll settle for Zometa to do its crazy bone making thing.
Having abandoned our friends at the farmhouse to fend for themselves with sweetcorn stolen from said fields, we set sail, arrived home and bounced straight into Round 2 of chemo - on Man's son's birthday. Birthdays are becoming significant as it was on his mum's birthday that he was given the myeloma diagnosis, so a birthday bonus for everyone.
Back at Beckett's ward this morning, we were greeted with the usual steadfast smiles and professionalism from our oncology nurses. God, they're good. Their patience, experience, humour and warmth make the visits all that more humane. True to form, Man drank copious amounts of 'free' coffee whilst he sat in his recliner whilst the drugs were dripped into his arm. But ever the attention seeker, he also logged on to a voice conference call where his work colleagues acted surprised to hear from him. Hey, it's only chemo and the world still turns round right?!
Symptom-wise, Man lost his sense of taste, has been constipated and the dex is not forgiving when it comes to slumber. But, with a diagnosis as his, he's almost grateful that they're all he's suffered. Mobility has slowed down and I put that down to the Zometa attacking the bones. I say attacking, I mean strengthening, of which the effects must surely be felt.
We see Dr L on Tuesday (the private sector doesn't work on Bank holidays) and hopefully she'll give us the good news that para protein levels in Man's blood have gone down again. Two months ago they were at 58. After the first course of dex they went down to 34. I'm hopeful they've done down further and that Man's PP levels will meet mine at 0.
In the meantime, he's gone out for a cheeky beer with a very cherished pal who misses his riding buddy. Maybe frequenting local establishments will be the new riding!
Messing around on lac du Jaunay
Wednesday, August 15, 2018
Memento mori
So Chemo Cycle 1 is complete 😃 A well earned week off for my man but I just can't believe the irony that the treatment is classed as 'cycles'. From now on, I'll refer to them as 'rounds'. Like a boxer, using every second to prove his physicality, diligence and defensive skills. Ding bloody ding.
Hubby has been in discomfort this week. It might stem from having an active weekend with his boys. They attended Brands Hatch for the German Touring Car races, quality time with them but not so forgiving on his pelvis. Still, he's reported to be feeling much better today. I don't know how much of the tumour gives him discomfort and how much the meds are affecting him. All we know is that we're on this one-way path and have to ride it and overtake obstacles whenever we can.
We have plans to spend a few days in France with some of our very best friends during the chemo break. Man is not supposed to travel but we are literally within driving distance of home so we're flipping the bird to myeloma and are going to spend time with our favourite Scottish people for laughs, hugs and great food. Bread and cheese, here we come!
I read the following on Monday, I want to share with anyone reading and everyone who feels challenged:
Hubby has been in discomfort this week. It might stem from having an active weekend with his boys. They attended Brands Hatch for the German Touring Car races, quality time with them but not so forgiving on his pelvis. Still, he's reported to be feeling much better today. I don't know how much of the tumour gives him discomfort and how much the meds are affecting him. All we know is that we're on this one-way path and have to ride it and overtake obstacles whenever we can.
We have plans to spend a few days in France with some of our very best friends during the chemo break. Man is not supposed to travel but we are literally within driving distance of home so we're flipping the bird to myeloma and are going to spend time with our favourite Scottish people for laughs, hugs and great food. Bread and cheese, here we come!
I read the following on Monday, I want to share with anyone reading and everyone who feels challenged:
'To those living life without consideration, take time to appreciate those closest...we can't all do it alone. ...stop being a dickhead, cherish the ones that go out of their way to speak to you and ask you if your day was ok...Don't be careless, everyone's been through shit...turn the negative into positive, push through and be something they never thought you'd be.
If I could have something to remember me by it would be this: forget your past troubles, appreciate the present and DON'T anticipate the future. Live and LOVE every day as it comes, life's too short to get caught up and bitter...live life without nonsense and drama.'
TW, aged 22. Died of a broken heart but left us with the wisest words. Be at peace xxx
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