Hi vicki and Colin.
Thanks for your message I am being very positive as I want to go and visit my daughters in oz at christmas,I hope all goes well for Colin love Etta
Good morning all had a good nights sleep first in weeks,thanks Tom for your posts and I am having a rest today Craig is working from home to keep me under control ha ha,love Etta
Hi all back home collected 2.1 yesterday and 2.6 today doctor said that was good.
My nurses were lovely,thought I might have to stay in as my leg started to bleed heavily but stopped after more bed rest and pressure. Thanks for all your kind words love Etta
Still here ended up going to theatre to have lines put in my groin,
As the machine started to drag and my veins were getting tired.
So I think I might have an over night stay.love Etta
Hi Tom, Eva and Teresa,
Thanks for all your replys just getting ready to set off to Blackpool vic now.
Fingers crossed the injections worked there magic.
Love Etta
Hi Tom
Thanks for the reply at least I know it's normal so no pain no gain.
Etta
Hi Stephen,
glad to see things are going well. Nice to here what to expect when Etta goes in soon, I will have to start grabbing some music together to get her through the days.
Keep your spirits up, it will all be worth it in the end!
Craig & Etta
Thanks for that Stephen, really useful info there.
Etta had her day of chemo last Friday and we did our first mobilisation injections tonight. Had a bit of a shock when the nurse rang up the other day to check the dose and told us it was 3 a night not one!
Thankfully all went well (we hope so anyway), only another 12 to go until we head back to Blackpool on Monday.
Will keep you all posted, been a bit hectic lately leading up to his with appointments galore so not had chance to catch up on the site much (although Etta reads it regularly – still can't get her to post yet 🙂 ).
Talk soon,
Craig
Hi Gail,
I, like the others, know what your going through. My wife was diagnosed July last year and started on the trial late September.
It's not easy to see the person you love become moody, not eating, irritable, and seeming to waste away in front of you.
Don't take things to heart when they say things to you that you think hurt, it's not them just the medication. It will be a bit of a slog but every day I see Etta getting stronger and back to her old self. You MUST make time for yourself in all this, it's so easy to put your own life on hold but sometimes those days or hours away can be a real boost for you. Trust me I've been there!
I see you are into your 3rd month, a time when it seems the meds kick in a lot I found. Just keep your eye on Howard, remember that you know him best and you will know if something isn't right. Etta went through a stage of eating less and less, and I cant stress enough how much he will need to keep mobile, those Dex's really take their toll on the muscles so the more active Howard can be the better.mid in doubt just ask on here on check with your specialist nurse.
Keep smiling if you can.
Craig
Hello all,
Been a while since I have been on, Etta checks the forum more than I do now (she's pinched my iPad off me too!) but she's still a bit shy about posting I think. 🙂
Just to give folks an update. She has been off her chemo now for a month with her levels at 22 ( I presume this is her para proteins?). Just had another bone marrow test and the doc has said he is going to send her for SCT at Blackpool, so we are waiting for the appointment to appear, the specialist nurse seems to think sooner rather than later.
A little apprehensive about it but I guess we will know more when we have the meeting what to expect. We asked about travelling too as she wants to go see the girls in Oz at the end of the year, he said he had no problems about her travelling so that's good. Hopefully the SCT won't hinder us too much, I know it can knock you back a bit though so fingers crossed.
Generally though Etta is doing well. She's getting her sense of humour back, is managing to potter about a bit indoors with her frame and keeps trying to push herself to do the things she used to (to which I keep telling her off). Getting out and about as often as we can in the chair, the blue badge has been very helpful with that.
Finally heard from the benefits lot, they awarded her some money and even back dated it to October so that's one less worry now I suppose. Had to do some big shops for clothes for her, she dropped about 3 sizes so has been happily buying new outfits and directing me to clear out of the wardrobes!
Anyway, she's waking up after having a lazy Sunday morning, so off to make her some dinner.
Will try and persuade her to "talk" herself 🙂
Craig
Hi Lyn,
I care for my wife Etta and as many of the others have said, it's not easy and there are times when you wonder how you will cope.
Me and Etta are very close and I've found the best way is to be honest with her about everything. There came a time with her treatment were she was practically a pill popping zombie and it was breaking my heart, but I just kept smiling and trying to keep positive for her.
She is currently off her meds as she wasn't eating, lost almost 4 stone and ended up in hospital in December. Now she's like her old self again! Slowly learning to walk as the steroids just wasted her muscles away, eating a lot better and drinking too.
She gets down about "not being able to do anything" but I keep pointing out where she was a month ago, a week ago etc and telling her just how far she has come which seems to help a lot.
One thing I would say, if Pete is getting depressed than ask to talk to someone about it. Etta went to see the specialist psychiatrist (psychologist? I always get those two mixed up) and that did her the world of good, she's also on a low dose of anti depressants which once they kicked in have been great!
As the others have said, you HAVE to take time out for yourself. I poo pooed this at first thinking yeah, right, but by god you need it after a while. Even if it's just an afternoon to yourself where you know you don't have to rush back.
Also if there are any support groups for carers in your area then get in touch with them. They're full of good information. Don't think you can do any of this on your own, help is there. Sometimes you have to fight to get it, but it is there so use it!
With the emotional side of things it can be hard. I've had a few good cries, sometimes together, sometimes alone when she's asleep. It's hard but you pick yourself up and carry on. I know that Etta got upset at one stage as she said I wasn't getting upset about her illness, but I explained to her that me crying all the time in front of her was not going to help the situation any and that I do get upset but try not to let her see it. Don't get me wrong, we still have the odd cry, when she saw how much hair she had lost that really upset her even though I had been telling her how thin it had been getting over the weeks, and that set us both off!
Mostly though it's my positivity that seems to bolster her through the rough times. Trying to focus on how much she has improved rather than how bad she is is one way I look at things. Also having goals as well. I know it sounds odd but actually going out to the shops complete with wheelchair, head scarves, red book, drink, tissues, phone, you name it she made me carry it and we only went out for 30 mins!
But now we do this 3 or 4 times a week for longer and longer periods and she can see its not scary, or hard and the panic is lessening after being cooped up inside for so long.
Anyway, I think I'm rambling here. Basically what I'm trying to say is it's not easy, there will be times when you wonder how you can carry on, but you will. Just think of the good times to come and if there is support there, use it!
Love,
Craig
At the moment Eve not getting a blooming penny!
The DSS came out in November for a home visit and basically said she has to be ill for 12 weeks before we can claim for anything. Then we have to prove that she is going to be in the same (or worse) condition for at least 6 months from then!
Basically he said don't hold out any hope of any money at all!
Going to give them another ring tomorrow to chase them up. At the moment it's costing me a small fortune with the heating needing to be twice s much as normal as she really feels the cold (even though I feel like I'm melting).
Craig
Seems like ages since I've been on here but had lots to do to keep me busy!
Etta is doing fine at the moment, slowly getting her strength and sense of humour back. She's eating a lot better now and her muscles are returning (damn those steroids!).
They arranged for a wheelchair for her as at the moment she's walking with a frame, but still a bit wobbly. On the plus side she's got to about 12 feet now which means she likes to wander over to the couch and sit and watch a bit of TV (if only there's was something good to watch she keeps saying, told you she was getting her sense of humour back!).
Anyway, the wheelchair has been great, both for appointments and getting her out of the house. I was getting a bit worried at first as she kept having panic attacks when we went out, so we've took it slow and are building up both in time and shop size. Got her some lovely scarves as I'm afraid she's lost most of her hair at the back and quite thin on top. That was a bit distressing when she finally plucked up the courage to look, but as I've told her, it will grow back!
Well, the Doc was all ready for putting her back on hthe meds last week until we told him what her weight was now. He had a quick rethink when we told him she had lost almost 4 stone, so it's another month off for good behaviour, just some calcichew tablets. Se had a bone marrow test the other week so we got the results of that back at the same time. He said it was down from a 60+ count to around 15 now, and he's aiming for a 10. Her blood protein levels are stabilising under 100 despite being off the meds for almost 2 months so were looking on that as a positive too.
She told him in no uncertain terms though that she is definitely NOT going back on full strength meds, so we left him looking rather bemused and suitably chastised.
Her appetite is back again, small and often seems to be the key. It's a case of whatever she fancies and when she fancies it (makes planning meals a bit tricky but as long as she's eating I'm not bothered).
Well, she's stirring at the moment so better go see how she is. I will have a look through the recent posts and try and catch up with people, just been a bit hectic lately with trying to balance work and home.
Keep your chins up!
Craig & Etta
Thanks Bridget and Tom,
It's been one of those years were we seem to have lost a few family members, the kids emigrating and then this and I think it all got too much for her.
She's had a "chat" with someone and they're giving her something to ease her anxiety.
We saw her Doc today who's giving her a break from everything until the new year then he will review how she is before proceeding.
Hopefully we can get her stronger and back to her old self over the holiday period.
Love and best wishes to everyone over the Christmas period and I hope you all keep well.
Craig & Etta
PS forgot to say they sent her home today, complete with adjustable bed and everything!
Blimey it's been a while since I had time to get on!
Just to keep you all updated, Etta has had a rotten time of it over the past couple of weeks. Her legs got extremely weak to the point she couldn't get out of bed. We finally got a physio referral and they came out to give her exercises to help strengthen them.
Unfortunately, 3 days later she passed out. When I finally got her to come around she complained she couldn't see anything and was running a temp. Long story short, her blood pressure had dropped too low and she was whisked off in an ambulance.
In hindsight maybe it was for the best as they found out her white blood cell count had dropped very low, so she's been on anti-biotics and something else to improve her cell count. Treatment has stopped.
As of yesterday, all her levels were back to "normal", her para protein count was about 90 the last time it was checked. Hopefully she will be coming home soon, but it all depends on her mobility as her legs are still very weak.
On another point, how are your doctors dealing with signs of depression? Ours don't seem concerned at all even when I point out how depressed she is. She keeps talking about giving up, and what's the point of carrying on etc etc which is definitely NOT like Etta.
Sometimes I feel like I'm banging my head against a wall trying to get them to see! Also her vision still hasn't come back to what it should be which concerns me (but again not them). Could this be with the sudden stop in treatment? I'm sure I read somewhere that suddenly stopping her steroids can affect the eyesight as a side effect.
Anyway, any advice would be helpful before I go and badger the docs again!
Craig
