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About PrincessB

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    Senior Bronze Member

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    Strasbourg, France
  1. My ear lobes have shrunk as well, and the holes had closed up completely and I had to repierce them.
  2. Judy, I don't have any experience in this area really, I just wanted to say the way that you are staying positive and focused on your treatment is very inspiring. B x
  3. I don't have anything new to add really, except that my skin is also tight but soft. Strangely, the doctor always describes it as my skin having hardened, but if I feel my skin and anyone else's, they feel the same. I even felt his hand! But you can't pinch any skin on my fingers and very little on the back of my hands. But my skin score has improved since my SCT, so I can't complain! I second what Lizzie said, we know our bodies better than the doctors do.
  4. That's great news Lizzie, I'm really happy for you. B x
  5. Hi KD, I'm sorry to hear you've been diagnosed - it can feel like a bit of a life sentence, can't it? But you'll get past this initial shock and realise that there are lots of treatments for your symptoms that will enable you to lead a normal life (what is normal, after all?). Try and stay positive - OK, you've been laid off, but what better time than when you've got a gorgeous puppy at home to play with? And also you can sleep more! There is so much information on the internet, it can be overwhelming and extremely scary. Each of us is unique and even when symptoms sound the same, it doesn't mean you've got what the other person has. It's hard, but don't surf too much, that was a valuable piece of advice from my specialist. And whenever you feel like it, we're here for you to let off steam with x
  6. That's such great news for you! B x
  7. Hi there, I think you should definitely say something, even if the PA will probably be moody with you when she finds out. I remember I saw my general practitioner once about an ulcer and he wanted to pull the crust off the top (the most excruciating pain imaginable) and only stopped when I cried so much his assistant came in to find out if he was killing me. So, he made me make another appointment for a few days later when he was going to take it off then. In the meantime, I got in touch with my specialist, not knowing that they know each other well, and asked him if what the general practitioner was doing was correct. Well, he told the general practitioner, who has never let me forget that I questioned his knowledge, but at least I had the peace of mind of knowing the specialist knew what was going on. And the general practitioner didn't take the crust off in the end, I think a behind-the-scenes talking to may have gone on. All that (!) to say that if you don't feel comfortable, you should always question what's happening. No way does your PA care as much about what's happening to you as you do, so you should take charge as much as possible (which it sounds like you're doing anyway with your notes, very good idea). Also, I'm from the UK, so I don't know what PAs are qualified to do, someone else will chime in, I'm sure. Good luck!
  8. Welcome back from me too. Hope that you will soon be seeing the benefits of your SCT and that your road to complete recovery is short. B xxx
  9. Hi again, This is not going to be much help because I get them from a major chemist (pharmacy/drug store) in England! Basically, you get a roll of stretchy bandage with a plastic applicator. You cut off a length of the bandage, which is in a tube shape, slip it over the applicator, put that over your finger, slip the bandage off onto your finger and then stick with the tape. I think it's called applicator finger bandage or something, just describe it to your pharmacist, they should know what you mean. When combined with a thin strip of plaster over the tip of the finger, it really cushions it. Good luck in finding it!
  10. Hi Flower, Ulcers are awful, especially as they hurt so much more than they look like they should, so it's hard to get across to people how you're feeling. I think the first thing you should do is see a normal doctor to see if the ulcers are infected because that really cranks the pain up a level. They will be able to give you antibiotics for that. When I have ulcers, I put something like Vaseline on the ulcer, then a plaster, then one of those finger bandages that you pull over your finger like a, well, like a condom really! That at least provides some cushioning and also somehow makes you more careful with the affected finger. I had a cream to put on the tip of the finger to dilate the blood vessels, I'm really sorry, but I can't remember what it was called. Nitro something. I also had painkillers from the doctor. I tried for ages to go without seeing him thinking I was being silly, but he was really good when I finally did. In fact, the last time, I was hopitalised for an Iloprost treatment, which is given by IV over a 5-day period and increases blood flow to the extremities to aid healing of the ulcers. I guess if you were diagnosed in the 80s, you may have already tried all these things. In which case, I can only offer you my support, ulcers are a truly horrible thing. B x
  11. Hey Lizzie, Totally sympathise about going crazy in hospital. I love that your gastro doctor was "excited" - don't we just love being unique medical cases?! I find that something about the hospital environment makes it impossible for me to concentrate on reading books, which I would normally be quite happy to spend 11 days doing. The only thing for it is to succumb to the lure of the gossip magazines - Heat, Hello, OK, even Take a Break, why not?! Keep your chin up, what, what. B x
  12. That's great news Craig and Sharon, I'm really happy for you! Happy recuperating in the hotel xxx
  13. Ozzy, I had my stem cell transplant in September last year and last winter the Raynaud's did seem to be better. This year though it seems to be pretty bad again. BUT my fingers are less swollen than they were, I am back wearing my rings again, although they're a bit tighter than pre-everything. Have you tried mittens? They are great because they're a pocket of warm air around your fingers and there's also friction between your fingers to warm them up. Gloves don't work for me either. My mum has just bought me a new woolly pair with fleece inside, can't wait to get home for holiday to have them. B
  14. Well done Craig, and all the other halves out there, who help us through! My cheering them on is helping, I'm glad to hear :) I didn't have mouth ulcers actually, I did have a skin rash for a while, I'd forgotten about that, it was all over my feet and hands and legs, but they gave me some medication for it and it cleared up. Since I left hospital, I haven't really been ill more than a normal person. I take antibiotics and an antiviral every day to ward off illnesses. I was in hospital with gastroenteritis in September, but it was a precautionary measure. I haven't been told to change my diet, so I eat everything I did before, including shellfish, whatever. My appetite came back very quickly, even in hospital I was hungry, the nurses couldn't believe it. The food was awful though! Is yours all heat-treated too? The only meal I looked forward to was Coco Pops in the morning, the rest of the time I ate white bread and Coke. When I got out, all I wanted to eat were salads and sandwiches, all the cold food I hadn't been able to have. My boyfriend would sterilise his lips so that he could kiss me, and his neck so that I could nestle in for a cuddle :) Keep up the good work little beauties!
  15. I can't believe you still had your hair! I lost mine exactly two weeks after the chemo to stimulate the stem cells. Hope you're not feeling down about it, I know I was devastated. It seems like it takes forever to grow, but to look at me just over a year later, you'd just think that I decided to have a trendy new bob. The scarring to my lungs has healed itself, the skin on my forearms, chest and hands have all become softer and more pliable. Even my face is becoming plumper again. I wasn't very badly affected though, my skin score was only 15 I think, the lowest possible to get on the trial. I also hadn't yet felt the effects of the lung changes, but it was getting worse quite quickly. I was back at work a month after I got out of hospital, I started back full time, then my boss encouraged me to work only in the afternoons, which I did for a couple of months. Physically, I felt OK throughout, terrible diarrhoea in hospital of course and some sickness, but once I was out I felt better. I was a bit depressed at times about my hair (you'll probably think I'm vain, I should have been worrying more about my health), but in about April this year, really started feeling positive and more energetic again (I had the transplant in September 2007). All good things basically! I'm cheering your white blood cells on, come on you little beauties!!
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