Breast Cancer Now Forum

My 5-year Cancerversary is on 8 April, when I got my Dx.   I was officially NED on 30 Sept when I was 'skeletonised', as the BS called it because he had to remove the muscle and everything. So my 5 year NED is from then.   I had a year on Tam, then a blood test said that I was low on Ca and Vit D so I've been on supplements since 2012. I then had three years on Exemestane which was hell so I've been changed back onto Tam for 10 years.   I now have osteoporosis. I've had OA in my upper spine since I was in my early 20s and after an MRI last year when i was in horrid pain, I now have Dengerative Disc Disease (DDD). I've just had a slipped disc which was truly hideous and it may recur at any time. My head sometimes wobbles - the GP said that it is because my spine is degenerating so much that's it's becomg less stable. Deep joy!   Yet I am alive - I do stuff that sofa-hugging healthy friends wouldn't dream of doing and I intend to go out of this life having a good time. Nay, a great time.   Sending hugs - but gentle ones, don't snap my back, lol   ... View more

Hi Wandy and everyone.   Hope that 2016 finds you all OK, especially Cherry.   Latest thing with me is that my spine is deteriorating rapidly, mostly due to BC treatment SEs. I get the usual advice to "make sure you don't fall over", ha ha. I can't take anti-inflammatories due to having Crohn's so I'm on very large doses of codeine with a promise of morphine if I ask. Constipation'R'us! When it's bearable, it's not stopping me doing crazy things for an old bird - I'm 60 now. Crikey. I still feel about 30 in my head.   Love to all xx ... View more

Hugs for you and for your daughter - it's all so horrible, isn't it?   All we can do is carry on as best we can - there really is no alternative.   Hugs again Ninja x ... View more

Hello May Buds!   Glad that everyone is reasonably Ok and that Cherry is still powering on ahead. I cannot believe that you've had a year on chemo - you must be shattered; it makes one so fatigued.   I'm currently trying to regain my fitness; it's been over a year since my last major operation but the winter scuppered me cos the cold makes my hands very painful. I now have sore sit bones from my bicycle 😮   Love to all Ninja xx ... View more

Hi Cherry, Jane and everyone.   So pleased that they are able to keep the beast under some control for you, Cherry.   I wasn't diagnosed 4 years ago, Jane, as I had immediate chemo so I've got three months to go to my four-year-cancerversary.   Despite the flu jab, we've had the awful bug for 2 weeks now and it's just starting to abate somewhat. <cough> <achoo>   Best wishes to all xx ... View more

Special love for Cherry is being sent from DJ, Angielav and Harp xx ... View more

Lovely to hear from you, Cherry and I wish it was better news. At least the "remarkable response" is hopeful. Lots of love from me and the other May Buds who don't come on here now xx ... View more

WD Mandy! xx ... View more

Hi Cherry, good to hear from you. Your experience with weekly Taxol sounds like mine. Feet like walking on slabs of meat, hair skimpy, and blood transfusions. Do you get the Tax Trots? I didn't get a UTI but the TTs were awful. I've had a Crohn's flare ever since and they have let me recover from everything before hitting me with stronger Crohn's meds this month.   I hope that the pancreatic thing works out OK - it's just one thing after another for you 😞 ... View more

Jane, Sophie was TripHazard on here xx ... View more

"Hi did.a support group ever happen?"   Not that I know of. That doesn't stop people meeting up informally, although when I've tried to do that in the past, it's been spectacularly unsuccessful. Other counties/areas have groups that have met regularly for years and become firm friends; Shropshire and Glasgow, for example. Yorkshire as an area seems to be hopeless at this. TBH, I'm beyond the need of a "support group" per se, I'm 3 years post-Dx now and wanting to get on with my life. The support group would have been wonderful before but as I said, most people either weren't enthusiastic or simply just didn't turn up. ... View more

Hi everyone,   Just thought I'd pop in and see how everyone is. I'm healing nicely now and have permission to exercise (finally!) so have been going to yoga, swimming and started scuba diving gently again so it's all good. I have very restricted movement/pain in my right arm and I'm right-handed so that's a nuisance but I've started physio for that. I lost so much flesh under my arm / side of torso so it's going to be difficult to get that sorted.   Enjoying this proper summer weather!   Ninja xx ... View more

Hi Folks. <waves to every body>   Don't have time to chat for long; busy baking. Glad that the Taxol is working, Cherry.   Dunno if you all remember Kate from Halifax, cannot remember her forum name; she was Dx similar time to us, better prognosis than me, and started lots of threads like "Horrific bowel cramps". She died recently and I went to her funeral on Monday. It spread to her lungs relatively quickly and then her brain. Poor girl never really got her hair back; all the treatments kept wiping it out year after year. She did cram in a trip to NY and loads of stuff like feeding big cats at the zoo in the last 12 months though.   My wound finally stopped leaking near the sternum and then I got a stitch-knot abscess last week as the internal stitches start to be resorbed and bits stick out - aaaggghhhh! 'tibiotics have dealt with the actual infection but now I have a new hole dead centre; a cm away from the original hole from November.   Hope everyone is as well as can be expected - group hug xx ... View more

So sorry to hear about those SEs Cherry.   Yes, thinking about it, I had a little bulge in my neck where the central line passed over a vessel but virtually no sign on my chest although I could feel it with my fingertips.   Your mystery gene is why it is so important to keep raising money for cancer research. Without it, I wouldn't have had my Herceptin, no-one would get Tamoxifen etc etc.   Seroma jelly is virtually gone now but the pus came back in the too-thinned area last night. Hossi Monday!   Thinking of Wandy.   Hugs to all xx ... View more

Cherry, PowerPort is just a brand, like PortaCath is, I believe for an implantable central line.   The next hossi visit is a week on Monday. The pus has stopped for now and the jelly stuff (concentrated seroma fluid?) is definitely slowing and only needs to be removed twice a day and hardly stains my clothes now. Sick of it, TBH xx ... View more

Hugs and cuddles to you Wandy for being in the Waiting Room xx ... View more

Gentle hugs for the stress, Jane - it is NOT a sign of weakness remember, it is just a sign that you are having more cr@p thrown at you than others xx ... View more

Oh Cherry, where did you find your friend? A lucky bag? You must have wanted to clout her!   Your treatment sounds very intensive but I guess it means that they really are throwing everything at it, which is reassuring.   I was OK after my port, just bruised and feeling tender. I found it easier to sleep with my faithful microbead cushion under the port to support it for a few days. I also slept in a crop top to prevent the boobs (it was pre-Mx) dragging on the area.   I got a nice recliner last year and it was a fab way to recover from stuff.   I'm partially healing! The tummy scar doesn't ooze now. The new boob scar is finally slowing down the oozing but the area from November is still very thin and started spontaneously issuing forth some nasty pus on Sunday. I cleaned it and added antiseptic and dressed it and it stopped. It's not hot or red so I'll keep an eye on it till my next appt.   xx to everyone     ... View more

I am now permitted to drive / go on buses so transport is no longer a problem.   If you have anything arranged please let me know and I'll be there if I am around.   Ninja ... View more

Hey I never knew that! It was definitely a doddle compared to EC which made me VERY poorly.   One thing I forgot about - the Tax Trots - you may escape them; mine were particularly bad due to me having Crohn's. I had Taxol each Weds and trots of River Nile in flood proportions every weekend. My Oncy gave me permission to take Imodium for it once I had explained the River Nile comment. ... View more