Sadie, all the best for tomorrow, fingers crossed and a big hug.
Helen, good luck with the rads on the 22nd - you must let me know how it goes.
I’m not sure whats going to happen at the moment. My initial ONC had arranged for me to have treatment (rads) but I had asked my original breast consultant for another ONC (recommended to me some time before). First ONC now wont see me (went this morning and a nurse asked me what I was doing there - said I was there for my health!) She also said don’t bother with the next appointment either (bone juice injection) and also said the rad appointments might not happen either. She said my file was on the new ONC’s desk and I would get an appointment with him.
I feel in a very strange place, back at work and things seem normal, no treatment apart from Tamoxifen (and sleeping tablets) and knowing I’ve got secondary BC in the bones.
Sorry all for being glum but I feel as though nobody at the hospital seems to be very concerned about me.
I am not surprised you feel a bit glum, and I am guessing you feel quite rejected and not cared about. The response perhaps confirms that you made the right decision to change your onc.
I had treatment today, herceptin and bone juice. After treatment I went to the local Maggies centre because there is free tea coffee and biscuits and because if I hung around for half an hour I would not get back to work in time to chair a meeting.
I was sat at table drinking my coffee I picked up a magazine about cancer. It had articles in it about diet etc. There was one article about all the different drugs used to treat cancer, so I began to read it. You can imagine the shock I had when I read that avastin is made from hamsters, yes hamsters. I re-read it 3 times as I could not believe my eyes.
I wanted desperately wanted to discuss this piece of info, with other people at Maggies but I thought they might think I was a bit bonkers, so I drank my coffee and left.
Hi all,
Sadie I know you won’t read this till some time after your op but I just wanted to let you know your in my thoughts. I hope the op goes really well and that the recovery process is as fast and easy as possible. Hugs x
Jane, I think with any chemo we have to be careful about infections , ask your team if you need to be any more vigilant on weekly. I’m glad you’ve got support and of course love on home front but you’re right you can still feel very alone, I hope you will find the forums helpful. I hope things are getting easier and wish you strength.
Myfanwy, I think you’ve been treated very shoddily! I hope your appt with new onc is quick and gets you back on track.I’m only on Femera and bone juice and I think that’s quite normal for bone only mets, without the bone juice you probably feel a little vulnerable so I hope you get things sorted soon. Keep coming here, it does help to share x
Alex, HAMPSTERS! yeuch!can understand why you wanted to talk to someone, had no idea myself.Not on Avastin myself so doesn’t directly baffect me at the moment but a very interesting piece of info! Hope your treatments are going ok.
Helen hope all is well with you and rads go well on 22nd
Hello Ladies, please excuse the spelling as I’ve left my glasses ar work!!!
Sadie - hope today went ok. My thoughts were with you
Myfanwy - Sound like a right shower at your hjospital, You’ll ahve to lie dowmn ain a corridor and not move until you’ve got some answers. It’s good lthat life seema ordinary at work. Northings changed really. You’re still you but with a little bit od extra information. Sometimes I wonder if it would have been better not to know about my bone mets. Life goes on and you have a future.
Alex - I take Arimidex. Perhaps that’s maade of guinea pigs…
I’ve been reading your posts and you really have made me chuckle. Thank you also for all your support - I see my new onc next Tuesday, he better be good else I’ll chain myself to the railings as per Helen’s advice! Helen, good luck next week - my rads are still on for the 24th so we must compare notes.
I love the idea that all the little furry animals in the world don’t just make us feel good when we cuddle them but (whatever they do to them, lets not go there) make us better as well - thinking of Alex’s hamsters!
Also Sadie, if you read this later hope your feeling a bit better and join us again soon.
Oh…how weird…hamsters???
Just posting to say hang on in there all…I had a rotten start, hip fracture but 8 years later, new hip and my bones are doing very, very well. I need no painkillers but was on morphine and in hospital at the start of this ‘journey.’
x
Thinking of you this evening - and remembering when I had the same op. This is the scariest and the lonliest part but it does get better from here on in (as long as they don’t put you on hamsters - see previous post)
Just a thought… hamsters go round and round on wheels don’t they. Is this another SE??? lol
Sadie, thinking of you x
Belinda, hi again. Nice to see you posting.
Myfanwy Hope the new onc kicks bottom! It makes all the difference and good for you for asking for a second opinion. My onc is pretty good, and I feel very very lucky so far. He has a very dry sense of humour,last visit he informed me that I was to go on some new poison (tax and herceptin) for 4 cycles. i asked him if my sleep pattern would be a problem. Oh yes, he said matter of factly, invest in some good books and plenty of tv on the planner! Then he risked a sympathetic smile. I think he is hench!
x sarah
Hi Girls
Wondered if anyone has had a bone biopsy…? Onc has now said it was either that or a liver biopsy after looking at my CT scan but thought accessing a bone would be easier…Sounds painful whichever. Oouch
Hi Jane, I had a bone biopsy done about 10 years ago. I went to a different hospital to have it done and they numbed the area before they took a sample. I had to lie on my tummy and I asked a nurse if she would hold my hand which she did. For me it wasn’t a pleasant experience as they had problems getting the sample as my bones were so hard. But was told that this was highly unusual so I hope yours works first time. Just make sure they give you some strong painkillers for the pain when the numbness wears off later. However I was fine once I got home and found walking to the car mysteriously made the pain go away. I had to lie in a bed on the ward for a while afterwards. I am sure you will be fine. If I can help in any way just ask.
I was at the hospital this morning for my 3 months review. I have been having a problem with my left leg. When I stand on it, it feels like it will give way, causes a bit of discomfort, then wears off. Occasionally if I am walking it feels like it is about to give way. So he is arranging an MRI scan to look if anything is causing it. My tumour markers have more than doubled since I had them done last time, but he is not putting me back on chemo just yet. Wants to see the scan and if needed he will then arrange a CT Scan after that. The clinic was running 1 and a half hours late and I saw the Registrar this time. He fully examined my feet, legs and back as well as the usual breast examination. I was wearaing a new bra thankfully but never thought I would have to take off my trousers and was wearing BIG stretchy knickers that I like to wear under trousers! I am happy with his decision about the scan…it may lead to more radiotherapy, but too soon to think of that just yet. Have a lovely weekend everyone. Take care, love Val
Hi I had a ct guided spinal bone biopsy a few months ago. I was given a sedative and didnt feel a thing. Had to stay in bed for about 3/4 hours later. I was scarred to death about having it done but the radiologist held my hand until I was knocked out.
Hope you have the same easy biopsy mine turned out to be but dont be worried about asking for a sedative if you and they feel it would be beneficial to you.
Love reading everything on this thread. Jane, hope your bone biopsy goes well - hopefully the results will mean you get the right treatment to get it sorted.
Val - big knickers - I love big knickers, especially went out and bought myself some new ones recently! Well, winter is almost here! Am sorry your leg is giving you a bit of jip but hopefully men/women in white coats can sort it.
I had a bone biopsy in June this year. Mine was done under a general anaesthetic! It was at the top of the thigh. I went in at about 8 O’clock, had it done around lunchtime and was free to go early evening (after I had kept some dinner down and been to the toilet without any problems) It didn’t really hurt, but left a nasty bruise and the area was tender for about a week, then I had to go back to have a stitch removed.
I now have a tiny cross shaped scar, but no continuing problems. My biopsy was done to determine the status of my bone mets. It was found to be the same as the primary BC, but my consultant (I was referred to an orthopaedic hospital in Gobowen, Shropshire said that it could have changed, so she wanted to be sure)
Good luck, if you are OK with anaesthetics, I would go with the general! The surgeon informed me that the bone was stronger than he was expecting, so imagine it was hard work to get a sample.
Val - sorry to hear about your leg, do get it checked out, mine feels like that sometimes. My bone mets in my hip/femur are the one that makes the bone swell rather than break down (osteoblastic I think?. Sometimes when I overdo things my left leg feels weak and as if it might give way, then bizarrely later in the day it can feel back to normal.(my own feeling is that it sometimes pushes against the joint and doesn’t at other times) Sorry not trying to worry you, was more trying to say I know what that pain feels like! I am not sure where your bone mets are?
Hi Nicola, No I am pleased that you told me that you had something similar as I was beginning to think it was all in my mind! What I find odd is that it is not there all the time and catches me out when I don’t expect it. But the MRI should be able to see if anything is going on, and I am ok about all that. I was just glad to get the review appointment over.
I am in agreement with you about having a general anaesthetic for a bone biopsy. In fact I would insist if I ever needed it done again. I think the whole thing was a bad experience for me but not because of the treatment but the attitude of some of the staff! I was in the ward resting and asked for a painkiller. The nurse went to speak to the doctor and said the doctor was in a meeting. After an HOUR they came with paracetamol! In the end I pretended that I was ok so that we could walk to the car where I keep a bottle of Oramorph…which did the trick!
Myfanwy, I love big knickers too. I usually prefer cotton but have you tried the stretchy short like pants in Tesco. Two pairs for £2 and they just work perfectly under trousers as they don’t creep up your bum…give them a go ! Anyone needing a bra should try John Lewis as they have a 25% off just now.
Hi Sarah, Celeste,Belinda, Helen, Finty and JulieD. I hope you are all as well as can be. great to see your posts. Love Val
Hi Girls
Thanks to all of you for your suggestions and shared experiences. Yes, my onc wants to see if the tumour has changed in any way. Had my first dose of Placitaxel on Friday, not pleasant as I had a reaction and ended up in a bed, however after adjusting the flow I was able to carry on. Glad to report no sickness or anything and I even mucked out Belle, my horse this morning. So good to do sommething normal for a change.
Re Leg pains. I did have a similar problem as the disease is in my right femoral head, every now and again the left leg would just stop and i would trip up with my toe. Had strange pains which were a bit like sciatica, now all pain gone and no wobbley leg.
Re big knickers…ooohh no… not in a million years… Bra’s… nothing to put in them i’m afraid, they have just shrunk to two fried eggs (LOL). Probably need a couple of chicken fillets…
love to all
Jane xx
Hi Jane, sorry you had a bad reaction but glad you were well enough to muck out Belle. Hope you continue to tolerate the new treatment and it does the job for you and kill those blighters. lOve Val
Hi!
On the subject of underwear, have you tried a wesite called womanzone. It’s great for mastectomy swimsuits as they do them all different lengths and necklines. When I get my proper boob next week, the girls and I from work are going to the posh Spa place for a bit of R&R. Still wearing a cotton wool boob which rides up all the time. Constantly rearranging myself like those two old dears from the Les Dawson show. Anyone remember them or am I the oldest of us all…
Myfanwy, will report back after being zapped tomorrow.
Love Helen
Hope the rads went ok today - looking forward to hearing your news and hope you did something nice afterwards.
I know what you mean about the foam makeshift breast - I safety pin it to my bra which does the trick - I refer to it as my pin cushion!
Seeing a new oncologist tomorrow - felt quite low today at work - everyone was so well and I’m not (although I feel fine). Just wanted to cry really - Mr Glum certainly got a grip.