Does anyone else have days where you get out of bed grumpy and angry at the world?
That's exactly how I feel today. Now I know that mm is far from being a picnic, but right now I'm completely p***** off that having waited a month to start treatment, Mike didn't even manage a week. Now we have to use his day off next week to go and see the consultant Dr SB. But why? Mike hasn't been given an appointment with the urologist yet and as the appointment with Dr SB is Monday afternoon, it doesn't seem likely he will have. So if he won't (or doesn't think it wise to, ) continue treatment without further investigation, why drag us in?
I was reading feresaknit's blog earlier and Tim's Wife (all this code name stuff is so exciting) suggested that us MM women be we carers or sufferers need a holiday, damn right we do. I don't know if it is just me, or whether other women have the same experience, but when I get PMS or just generally annoyed, I let rip, no holding back. When I'm done and the rage has past I am quite capable of looking back and saying "yes I was in a bad mood darling and I shouldn't have taken it out on you." It seems men do not have quite the same reaction "I wasn't in a bad mood, nothing to do with the drugs." I try to be patient and understand, but my patience is just about used up with all the disturbed nights, hospital trips and worrying.
And to top it all, I read on The Myeloma Beacon an article on "The Impact Of Age At Diagnosis On Myeloma Patient Survival." I suggest no-one else does it's very depressing.
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I know you said not to but I looked. Now I'm no statistician but survival time generally declines with age. If we take average lifespan of 79.3 in the UK according to the figures stated anyone over 71.2 is immediately in negative equity and if unfortunate enough to be exactly 71.2 when diagnosed should keel over straight away! And does this take account of the people who got hit by a bus?
ReplyDeleteYou are a naughty girl Feresa! ;)
ReplyDeleteLorna,
ReplyDeleteYou have every right to be in a bad mood. The US is just as famous for botched appointments, rescheduling and the like. I know, because I am the MM sufferer and went through of series of lost blood work, changes in appointments, etc. this week. I bet my mood was worse than yours:) I'm sure no one in the medical profession wanted to speak with me this week after I unleashed my wrath on them. It will slowly pass, but it's a shame that anyone with this disease or a caregiver has to go through all this. You must be persistant and advocate for Mike. It is easy to fall through the cracks and I will not allow that to happen.
As far as a holiday is concerned, yes, you do need one. I have already warned every doctor that before we proceed with a stem cell collection or transplant, I am running away for at least a week on holiday where no one will find me. Least of all anyone with a needle in their hand.
I will pray that your doctors find the right regimen for Mike. It can be done.
Jodi
P.S. I did apologize to my husband this week too. Apparently, I can swear like a truck driver.
Hmm does anyone else wake up grumpy and mad at the world? CHECK. Do doctors and their staff screw up there-by making our already incredibly difficult lives even harder? CHECKAROONY. Do most of us women have the grace to apologize when we know that the hormones, stress, and sleep deprivation got us "riding the broom" while our
ReplyDeletesignificant others dump on us continually without so much as a feeble "sorry babe"?
YOU BETCHA!. Girl, I could have written this post and just changed the names and initials.
Unfortunately, one day they may have to do a study on the "impact of an MM diagnosis on the survival of the caregiving partner." Thanks for stopping by my blog and for the kind wishes.
Hang in there girl. It's a roller coaster but there are easier spells than where you are now just around the turn.
I'm with Tim's Wife... hang in there! We had quite a few bumps in the road when Phil started chemo also, including a couple of incomplete cycles and a hospitalization due to side effects but eventually it all worked out. We're praying that you guys get some answers soon. And I'm usually either grumpy or angry at the world so you're not alone. =)
ReplyDeleteWell that's a cheery article. FL should have popped his clogs a while back then, if statistics are to be believed! (Edited: popped not pooped!)Yes you will need several holidays on your way through this. FL and I try to programme in a short trip at regular intervals. We've only had to cancel once. We're off to the Highlands again in early April - getting away from it all feels so important nowadays. You are allowed to get grumpy and this is the place to do it as we all understand! Hugs to both of you.
ReplyDeleteI would like to say a big thank you to everyone who has posted comments. They are all a great help. It's good to hear I'm not the only one to get grumpy, that others before us have fought and gained remission, or defied the statistics. I do get angry at the disease and the thought of what it might mean, but I know I'm not alone.
ReplyDeleteThanks girls. x