Introducing ourselves

2

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  • Karonjulie
    Karonjulie Member Posts: 72
    edited March 2015
    Hi janey
    I have been admitted through emergency yesterday as I was having really bad pains when trying to breath. They did X-ray and ct and said clear for clots but i had pneumonia. So they admitted me to put me on antibiotics. I was going home tonight when a doctor came in at 2 and said that on closer look they noticed a few small clots on my right lung. I am so devastated. I had been getting the injections anyway while in here but now waiting for tomorrow to see what drs decided...injections or tablets.

    I just tear up thinking about it:(

    I am just so scared now. I was recovering so well it has come as such a shock.

    Thanks for listening to me.

    Karon
  • Karolinka
    Karolinka Member Posts: 7
    edited March 2015

    Thanks Janey xxx

  • Janey235
    Janey235 Member Posts: 1,206 ✭
    edited March 2015
    Im so sorry to hear that you are having problems. But I had the same thing happen with both my lungs having small clots probably caused by the DVT I developed in my leg after surgery. I had bad pains trying to breath as well and my husband called the hospital and they said to come in to emergency. Glad I did!

    I was scared at the time and really worried about what the clots could do to me but after seeing a haematologist a few weeks after getting the clots, she reassured me that they had most likely already dissolved. The Clexane blood thinners injections are a real pain (literally) but I know they are keeping me safe. I'm on number 187 needle tonight (yep, I'm counting) and I'm hoping I can go on tablets, probably warfarin, after my Herceptin treatments finish mid May. Fingers crossed.

    You do get used to the needles but hopefully you can go on the tablet form which would be much better. I'm coping well with the needles though so I'm sure whatever treatment they put you on you will too. It's good the clots are small and they probably are already being absorbed by your body.

    Remember Karon this is a long road to full recovery and your body has been battered along the way. With good rest and looking after yourself, not doing anything too strenuous for a good while, you'll get through. I did some vacuuming the other day and tore some internal stitches in my tummy suture so it's a very good excuse for me not to do the vacuuming. Hehe.

    Do you live in Melbourne Karon? Perhaps you'd like to official join our Melbournites group. If you do here's the link http://www.bcna.org.au/group/70587. Just click on the 'request to join' and I will connect you.

    Sending you big hugs Karon

    Love Janey xxx
  • Karonjulie
    Karonjulie Member Posts: 72
    edited March 2015
    I live in Perth. The doctors saw me this morning and now need to discuss with the hematologist what is best option for me. He said with cancer patients the injections work better but he said they have advanced in tablet application so hoping they will have a tablet suitable.

    Keep my fingers crossed.
  • Janey235
    Janey235 Member Posts: 1,206 ✭
    edited March 2015
    I really hope you don't need the injections Karon. I'll keep my fingers crossed for you too. But if you do, you'll cope. You probably will have them in your thighs like I do, not being able to have them in the tummy because of the DIEP/TRAM suture line. Let me know how you get on.

    Love Janey xxx
  • Karonjulie
    Karonjulie Member Posts: 72
    edited March 2015
    Bad news for me. 2 injections per day for 6 months. So hubby Bill is doing them as I am a chicken. They said people with/had cancer the injections work better.
  • Janey235
    Janey235 Member Posts: 1,206 ✭
    edited March 2015
    Oh Karon that's too bad. I kinda thought you might be stuck with them (pardon the pun). Yes my husband Ian does mine. I'd pull it out as soon as it started to hurt!!! Well we have to be brave. I've had mine from Sept last year and will hopefully be able to finish in May. Are you going to have them in your thighs? Did they tell you to ice the area first? It does help.

    A big hug for you Karon.

    Love Janey xxx
  • Karonjulie
    Karonjulie Member Posts: 72
    edited March 2015
    Hi janey
    Thanks goodness for husbands:) I have it the thigh as I don't have enough fat in my tummy anymore. Bill has given me 4 so far and no bruises I think he is better than some of the nurses I have had do it. Well just have to accept it now but I still whinge if one hurts more than the other:)
    Well good luck and I hope you go onto tablets in may. I asked them what happens in 6 months will they X-ray again to see if it's gone and she said no they don't they just assume after that time the body has absorbed it??? I have an appoint on the 26/3 for the hematologist so I guess they will tell me something more concrete.

    I am also taking antibiotics for the pneumonia but still hurting in my right back and side area when I breath. I am a bit scares that I will stop the antibiotics and it will come back. I am seeing my GP today so will ask him. I have to get a bulk script for the injections are they expensive?

    Thanks janey it is so great to talk to someone who has been through this.

    Thanks
    Karon
  • Janey235
    Janey235 Member Posts: 1,206 ✭
    edited March 2015

    If your GP contacts Canberra (govt) to get an authority for long term use of Clexane, you'll get 3 boxes for the price of one. We get the bulk script (one month's supply) for around $36 instead of $36 each box. Your GP should know anout this I would think.

    At my last appointment with the Haematologist, she ASSURED me that the clots would have disolved by now. I was worried that they'd come back too. She was really emphatic that they weren't a problem anymore. But because I have now had the DVT and the PEs, I may have to be on blood thinners for life. I can cope with the tablets though. I really feel for people who have to have injections for life. But if it keeps you healthy then its a good thing.

    I really hope your course of antibiotics clears up your neumonia Karon, but if it doesn't they'll put you on another course. I still have a cough that I developed last November that I can't seen to shake completely and I'm on yet another course of medication to try and get rid of it. I was a bit scared that it was something else but had a chest xray and, apart from some conjestion, its all clear.

    Unfortunately this now will be our lives in worrying about little things that normally wouldn't knock a feather off us but I guess we aren't alone in that. I try not to worry too much and just get on with things. But I won't take my health for granted at all! I now go to my GP much more regularly to check things than I ever have before. Sometimes I feel like a bit of a hypochondriac but so be it. I figure that I'm not wasting anybody's time and it's for my own peace of mind. I wasn't really known at my health clinic before BC because I hardly ever went there but know I just have to walk in the door and everybody knows me. It's kinda nice!

    Well Karon, Bill will be quite the expert as Ian is for me. They could give lessons to some of the nurses I've had in a bed side manner too. I get a loving kiss before and after too (not that I'd like the nurses to do that LOL) and that's got to be nice.

    I'll be thinking of you now when I have my needle :)

    Love Janey xxx

  • Karonjulie
    Karonjulie Member Posts: 72
    edited March 2015
    Thank you janey you put my mind at ease. All thatinfo is fantastic. I will mention to my dr today.

    Thanks heaps and speak to you soon xxx
  • Janey235
    Janey235 Member Posts: 1,206 ✭
    edited March 2015
    I take quite a few things Karon. Multi vitamins, Vitamin D, Calcium, Evening Primrose. None of these seem to help much with tiredness though. I think the best thing for fatigue is regular exercise. It's a bit of a catch 22 though as you feel too tire to exercise but if you don't, you remain tired. I haven't exercised as much as I have been since starting back at work a couple of weeks ago as yep, I'm too tired. But I don't think that's helping me at all so I've started back on the treadmill today and I'll see how I go. Once you are feeling recovered enough, try and fit in some exercise as many days as you can. I think you will feel the difference in time.

    Cheers
    Janey xxx
  • Karonjulie
    Karonjulie Member Posts: 72
    edited March 2015
    I don't seem to have enough fat on the top of the thigh I feel like its hitting muscle on the side of my thigh. I think I just need to toughen up:)

    I have only been doing this for a week so not sure how I will cope with 6 months!

    Thanks janey and take care:) xxx
  • WendyMac
    WendyMac Member Posts: 36
    edited March 2015

    I hope to get to meet you at one of the lunches. I live in St Kilda East as well, and love it!.
    It sounds as though you've been through a bit and are really positive.  That's great.

    Cheers.

    Wendy.

  • Viv_C
    Viv_C Member Posts: 92 ✭
    edited March 2015

    Hi Wendy, I also had my reconstruction at the Alfred and am having chemo there. Love to catch up - I am very happy to talk through what you can expect at the Alfred, and see if we have the same surgeons. I will message you with my phone number and we can maybe grab a coffee or a drink. Oh and not only do we live in the same suburb and get treated at the same hospital, but our birthdays only a week apart - though I am 9 years older. Look forward to meeting you.

    Viv

  • Karen T
    Karen T Member Posts: 95 ✭
    edited March 2015
    I am 34 and just a week out from starting chemo TC.
    I had a lumpectomy for 2 lumps on the 29th if May and scarily enough they found 4 more lumps that hadn't shown up in any of the scans! All were grade 1&2 IDC. Sentinel nodes were all clear but margins weren't. Second surgery to remove DCIS was a success - I've lost my nipple but not too much size. Swelling is still going down so hoping I can get away with the difference without a prosthetic.
    Currently seeing a fertility specialist and this part has been more stressful for me than the cancer part so far!
    I work in the city but with enough notice I think I can make it to a lunch catch up.
    It has been so helpful reading everyone's stories and hope I can return the favor in some way :-)

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