Forum Discussion
Introducing ourselves
My name is Janey and I am starting up this group for Ladies who may find it difficult to get to other Melbourne groups but who can travel into the City. I live north of Melbourne out past Whittlesea but I travel into the city area for treatment and appointments at Peter Mac Cancer Hospital in East Melbourne.
A bit about my journey..... My diagnosis was 20th December 2012 so 2013 was my year of getting well and healing having had a lumpectomy, to remove two lumps (one was TNBC and the other was ER & HER2 +) then 6 months of chemo, double mastectomy and immediate DIEP/TRAM reconstruction in Sept 2013. I developed a DVT in my right calf and then Pulminary Embolisms to both my lungs so I am on blood thinners, daily injections until May when my Haemotologist may put me onto Warfarin tablets (fingers crossed).
I will still have three weekly Herceptin treatments until May this year and am on daily Femara hormone tablets for at least 5 years. I will have revision surgery later this year to correct some minor issues with my reconstruction and maybe get my new nipples.
I'm now out of the tunnel and feeling well and happy. I am discovering my new normal and living life to the fullest.
Janey xxx
33 Replies
Hi My name is Carol. I am a community Liaison who has mainly been involved with Cancer Council NSW in various roles including their community speaking program and with Lymphoedema Support Group of NSW. My group the Upper North Shore group of the LSG of NSW has just been registered as a BCNA group last week. I learned so much at the Summit in the Active and well stream and now get to put it into practice with my group starting tonight when we have a physiotherapist who also trains new lymphoedema therapists talk to us on various techniques including liposuction, traditional lymphoedema massage, laser, kinesio taping and the new physio touch negative pressure device she has been using on my radiation scar and lymphoedema arm recently. all welcome if you can make it to Waitara to the Asquith Leagues Club for a 6pm start. this is one of our 4 meetings per year in February, May, August and November with many members attending the annual info day in march and other events as they arise.
hope to learn lots more re running a successful group from all of you more experienced ladies
Carol
- Welcome to our group. Glad you found your way here. It will be great to meet you next time we have lunch. Not sure when it will be yet but definitely in July. Hope the chemo isn't too rough on you. Take care. Janey xxx
- 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 :-)
- 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 :-)
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
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.
- 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
- 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
- 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
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
