Well I had my bottle of Guinness and I raised it up to Bridget and said farewell.8-)
I think I'll leave it at that for today… but I know her influence will be a lasting one and her approach to life and death will always be a comfort to me. xxx 🙂
Dai.
Hi Jo,
It's good to see and hear from you… on Bridget's funeral day I like to see that all my friends are out and about and as good as can be. 😎 🙂
As I understand it, after being corrected by Ellen, Velcade is a cousin of Carfilzomib and not, as I erroneously posted earlier, a cousin of thalidomide. (But I'm still going to check that up).;-)
In which case it looks like a good option for you… of course, as things stand Carfilzomib is not taken in isolation (though that might change)… at the moment it is taken in conjunction with Revlimid & Dex. Apperently Carfilzomib acts in the same way as Velcade and caps the cancer cells so they ilope with nowhere to go. The results are apparently much better than Velcade with significantly fewer side-effects. Carfilzomib actively brings the PP's/Light Chains right down and out of sight. “““when the course finishes the user carries on with Rev & Dex with a clear playing field… extending the lifespan and efficacy of that treatment.:-D
There may be other plans for the drug, including frontline or single use, we will have to wait an see.:-)
But it certainly looks promising.8-)
Dai.
Hi Helen,
Now ain't that the truth.:-D
I have had some of the most painful and stressful times of my 'journey' while sitting on the toilet with a constipated blockage… now normally a few quick successions of Movicol does the trick but can still wipe me out… then there are the liquid pessaries, saved for emergencies which can be quite productive yet still debilitating… but then there the few occasions when everything has been tried and everything has failed and I am completely bushed and feeling beaten… but you know you can't leave it. :-S
Then it becomes a mathematical problem.. where you have to think things through, take very deep breaths and contracts before sitting forward and work the problem out with a pencil… or your fingers and toes (well, perhaps not your toes).>:-(
Those occasions are truly horrific and thank goodness they are rare occurrences but as recent as a fortnight ago since the last one… when I really thought I would need to give in and call the hospital… it was painful beyond measure. But I got angry with myself and imagined myself back down the pit.. where I just went for it without a stop for a rest and I won… but the price was a hard one to pay… I was bedridden for two days… just completely and utterly wiped out and I made like a jelly.:-P
Not a pleasant post I know… but if it acts as a warning then all well and good. If you are on Movicol or some such similar medicine then take it religiously… even on, no, especially on those days when everything is passing well and you feel good… those are the days you have got to watch because you can't afford to fall behind… catch up is a dangerous game to play… as I have found to my cost on more than one occasion… and I of all people should know better.;-)
Still, it's out now (excuse the bad pun) and I hope my bad experience acts as a caution for others. 😎
Dai.
Hi Keith,
I meant to come back to your earlier post and Helen has just reminded me but I too sometimes get stomach cramps which are a signal to head west… it can get quite uncomfortable before it gets sorted but I don't just get the cramps in isolation.:-|
Dai.
She would indeed Eve, she would indeed.:-)
And perhaps she is.:-D
Dai.
Hi Eve,
Janet bought me a six pack bottles of Guinness in the New Year… I have five left. But I too will raise a bottle to Bridget's memory tonight… and enjoy it thoroughly I will too.:-D
All the very best to all of the very best.8-)
Dai.
Hi Jean,
I too took inspiration from Bridget's posts to other people, As a writer I soon spotted her 'style' which was quite natural but very, very effective.8-)
Bridget would open by accepting her correspondents problem and sometimes agreeing with it. But she would always pick up on the slightest positive and accentuate it before 'getting practical' again and offering advice on the next step… all delivered in a cheery, homepun manner… but Oh, so effectively.
Here;s one I saw earlier from February 2011… she went on later in the thread to welcome Eve and start in on her too. 😀
Dai.
[quote]Hi Chris welcome I am sure you will get lot of support from all the lovely people on here It took me a long while before I even looked at this site, a form of denial I think.
Unfortunately not all people even try to understand myeloma but its very sad that your husbands family are so unsupportive.
Grandchildren are a special joy aren't they? I know a visit from mine can lift my heart even on a bad day.
Don't hesitate to scream or rant on here if you are need to, we have all done it and there is always someone to give you the support you need,
I think it must be harder watching your partner go through it than it is for us patients sometimes.
Take care
Bridget[/quote]
Hi Eve,
One of my first reactions on hearing about Bridget's passing, when Janet finally got me to stop crying, was to thank God that at least she was no longer in pain.8-)
Bridget went into melt down from 12 months out… relapsing from her SCT she had 3 months on Velcade, followed by 4 months on Rev & Dex, then 3 months on Bendamustine and onto palliative care where they tried for Pomolomalide but she wasn't suited, the same with several trials and was on pain killers and possibly Thalidomide when she passed… with constant pain as her companion during all those transitions.:-(
But it didn't stop her being the busiest correspondent on this forum, making friends, offering sound advice, throwing in a cheerful word and hardy ever a word about herself unless pressed. 🙂
That's what made her unique and remarkable in a forum full of remarkable people.8-)
Dai.
Hi Helen,
I think that part of her secret was in always to sound cheery and postive without sounding too cheery or over positive..
[quote]Hi Nigel welcome to our merry little band!
It is the best place on the net for answers regarding myeloma as it is based on individual experiences, however if I have learnt one thing about mm it's that it is a toatally individual illness where the variations in symptoms and response to treatments are unique!
Being able to share experiences with each other is immensely valuable, especially as life with myeloma is about more than just symptoms and medications.
As for the benefit of transplants my vote is definitely worth it, the possibility of complete remission is there and failing that, any lengthy delay in heavy duty meds is a bonus.
Good luck Bridget[/quote]
The above is a typical example of Bridget finding the positive and answering in a cheery way while addressing the issues raised. This kind of response, when addressed at me, always cheered me up and quite often changed my direction of thinking.
Dai.
Hi Liz & Kevin,
I would like to think that Bridget will rest in peace but not if she has anything to to with it she won't.;-)
I can imagine her now, pain free and whole, wandering around the streets of heaven, making friends and keeping an eye out for anyone looking a little glum… where she will stop and sidle over, sit down and start on in… 'Hi, I'm Bridget…:-)
Dai.
Hi Helen,
Looking back at some of Bridget's posts over the last few years, sometimes several a day, with a word of advice here and a word of comfort there… and somewhere in the middle, often as a response from one of her 'friends' she would let slip about her own situation and it sounded, especially for Bridget, quite grim but never a clue in all her answers to the others… that's why so many identified selflessness as one of her qualities… but Bridget didn't see it that way and I'm sure she would have been astounded to think that we thought that way.
Dai.
Hi All,
Below is Bridget's last ever post… sent on the 26th of May, only 3 weeks before she passed and at a time when she was plagued by infections and fatigued beyond measure… but of all that? Not a Dickybird. 🙂
I am using this post because it is typically Bridget… even at her very worst (health-wise), she is shown at her very best (Bridget-wise). 😎
Selfless, caring, concerned and inviting someone in pain to call on her, privately if need be, at a time when her world and her life was on a knife edge and soon to be cut off. 🙁
As I say, typically Bridget… to a 'T'. and I thought it a good starting point, 😎
Dai.
[quote]Dear Sue,
I am so sorry to hear things aren't going well, no wonder it has hit you so hard.
Please don?t feel guilty: you certainly have no need. Michael can probably see how much you need a break too. Try and be kinder to yourself Sue, you are Michaels strength and it's bound to take its toll but you do need time away from myeloma and hospitals etc., let alone the huge worry hanging over you.
I hope things get a little easier. Lots of love to you and Michael xxx
ps my e-mail address is … … … if you need to contact me privately x
Bridget. [/quote]
I don't envy you your position Andy… the obvious question for me is:
[b]'Are you going to allow me the chance of a SCT with my current status if my figures refuse to budge?'[/b]
If so:
[b]'At what point will this decision be made?'[/b]
If not:
[b]'Then what are the alternative treatments or maintenance regimes on offer?'[/b]
It seems obvious that everyone has been working towards getting your PP's down to an acceptable minimum level for the SCT process to start. This has not worked, despite several attempts using various treatments including Velcade. But… your PP's have stabilised, albeit at a level above the usual minimum acceptable levels.
I would be asking if they are willing to go ahead at the stabilised level… and if not then why not… and what would be the [b]actual minimum acceptable level[/b] given my case study.
If they are not willing to allow a go at the SCT then what can they offer? For instance, you are on R&D at the moment and you have stabilised… is this treatment/maintenance a possible long term alternative… with further attempts to lower the PP's when the current treatment relapses?
If they are not willing to risk a SCT at this time then perhaps your current regime might be the alternative… i.e. instead of seeing it as an interim treatment to decrease your PP's.. you could embrace it as a medium/long term treatment.
You have had such a concentrated high level bombardment of treatment without success… but your MM has not increased or spiralled up and out of control… it has stabilised and seems to be saying 'What Next?'.
I hope that you are answered with some positive, achievable propositions. If your PP's don't look like coming down any further at this time then perhaps coming back to it with further attempts using Velcade etc., might be the answer further down the line… if staying whee you are, with what you are on suffices until then.
In your position I would want concrete answers… with probabilities rather than possibilities being the order of the day. I have had a few of these 'crunch' consultations and as scary as they might seem I have always felt better for knowing what comes next… I hope that you hear good, positive news.
Dai.
Hi Keith,
Further to Andy's reply I too take Rev at night but not quite so late. I recall being told to take Dex in the morning and Rev at night. As it happens I take my meds en bloc… circa 8am and 8pm. I too am on 25mg Rev and 40mg Dex but my Dex are taken once a week and my nominated day is today (Tuesdays).
Sweating for 12/16 hours is the worst side-effect as posted earlier and apart from general fatigue (slowly getting better each cycle) and my mantra 'Rev & Dex & Me In Perfect Harmony' is slowly forming into a universal truth. I do feel in harmony… as long as I understand my limitations and the need to allow the meds to do their thing.:-D
I find taking my meds around 8pm allows them to settle into the system by the time I need to sleep. Of course I have to make allowances for Dex but paradoxically although I take my Dex on a Tuesday it is normally later in the week (Fridays/Saturdays) that I get the full 'Dexeffect' TM.
I'm learning to create a nighttime routine that I try to stick to… like avoiding TV and computer activity after 11pm in favour of reading (though I do allow Kindle). It seems to be working… along with a small flask of Horlicks to be taken if needed… I always take it.;-)
Like Andy I too read the instructions and side-effects if I feel inclined to a light horror story… I always find myself hoping that my consultant and my hospital pharmacist know what hey are giving me and the relationship between the drugs… because according to the individual drugs side-effects charts I am risking life and limb in mixing some of them together.:-) :-0
Que Sera.
Dai.
Hi Ali,
The 'Wash & Rinse' treatment was fine at first but I became nauseous after a couple of hours and was physically sick over a 2 to 3 hour period… after that I felt drained but the anti-sicknes medication (given after the event) worked from thereon in and when I was let out I just felt washed out.:-|
iI was told by the staff that only a few people are actually sick (as against feeling nauseous) so I was unlucky… and to tell the truth I'm not usually a nauseous person.;-)
I'm sure your Mum will be Okay but you might wan to enquire abot anti-sickness medication before the procedure.:-)
Dai.
