I have started this thread for all of us who have Bone mets and have not been happy at the way the please join in thread has been bamboozled by a partner, with no input from the person with bone mets at all. I hope that this thread will be a place where we can share our own experiences, share thoughts and ideas and I hope no-one will ever write in capitals - because that is not needed.
If you are a partner or friend then please could you go to the appropriate section for your posts
thank you
Hi snowyowl2
I’ll join you on this thread. I have confidence in my oncologist and the medical profession generally and agree with you about the harm of enthusing over spurious alternative treatments.
But I warn you I’m not much of a chatter, I tend to post when I’ve a query or respond to specific queries that I feel I can help with, but don’t do the ongoing dipping in and out thing with chit-chat (don’t have time!).
Best wishes.
Alison
Good morning all. Just spotted this thread. I was dx in May 2010 with bone mets in ribs, hips at same time as primary dx. Still having chemo.
My onc is very good, and like alisonm I am very wary of unproven treatments.
However, I have found that Reflexology is good, it really helps to relax me.
x sarah
I’m like Alisonm, I’m not a chatter although I always skim through these threads to see whether I can add anything informative or interesting to these threads (sadly never do!), but I don’t think it is right to discourage anyone from these threads. I believe we are all adult enough to manage our cancers in whatever way we see fit, and I think we all realise it would be very foolish not to follow what our Oncologists recommend. So I think we should live and let live (or should that be live and let die?) and let everyone have a voice.
I am lucky enough to have a friend who comes and gives me accupuncture regularly. I am currently on chemo (Caelyx) and have barely no side effects at all, whether it is because of the accupuncture or not I have no idea, but I wouldn’t want to stop it.
Linda
hey
thanks for joining me here
I too do not post regularly, except on the inbetweeners thread.
I have met someone through these forums who lives very close to me and we are on almost identical treatment so we tend to email or speak on the phone.
I have regular aromatherapy neck and shoulder massages - my mets are on C4,5 and 6 vertebrae, and have recently discovered the most wonderful facial and upper body massage at my local day spa - going again in 2 weeks time.
Tina XX
Snowy,
Glad to join you on here or to go on other thread.
Can I just say something about the person you were objecting to?
He seems like a very nice man, just one that is desperate to help his extremely ill wife cope with this horrible disease.
Partners are allowed to post as are children. We are supposed to be able to offer support for him and his wife who may not feel up to posting herself.
I do not condone quackery of any form and some complementary medicine makes me cringe. However we are all entitled to an opinion. If somebody posts something we do not like or agree with, we can point out our beliefs without judging.
Hope takes many forms, whether it is diet, faith, prayer or conventional medicine. If it provides relief, support and is not causing any harm, why not ??
The aromatherapy you mention provides you relief. However do you know some aromatherapy oils are frowned upon depending on ER status?? Also massage with mets is frowned upon in some quarters.
Do you see what I mean ?? It’s a mine field…
Julie
I think I am going to become confused as there are now two threads with the same title. Also if this person you are talking about can get onto the last thread what is stopping them coming on to the new one. I will look at both threads for the moment but new people with now diagnosis of bone mets may find it confusing.
I have had bone mets for 12 years now and am very happy with the excellent treatment I receive at the WGH in Edinburgh. The fact that I am alive at all after 22 years is just amazing for me. I am ok about complimentary therapies if that takes anyones fancy and have had some pleasant sessions at the Maggie Centre here. I haven’t had the need to visit for a long time but have been thinking about returning to see what is now on offer or if I can give support to any newbies who has just found out that they too have bone mets. Val
bumped up other one, just to add to confusion
Until now I cannot recall partners, children or friends being anything but welcomed on the secondary forums. Sadly posts in ‘family and friends’ can often missed by others who may like to offer support.
Belinda,
I think Snowyowl was objecting to Wayne’s posts about his wife Marianne (?) !!
I just took them in the spirit of a lovely, concerned husband concerned about his wife.
Ps Belinda…How are you ??
Hope everyone has a pleasant weekend. Will miss all you messages when the site is off-line. Love V
Hi Julie…I’m okay, thanks, I’m probably starting docetaxol soon ish but hey ho, onwards. 
I actually feel really well so I’m trying to make the most of this time before starting the new chemo. I hope all is well with you.
I’m a bit concerned as Wayne hasn’t posted in a while. I’ve always taken Wayne’s posts in the same spirit as yourself.
Hi Val, have a good weekend. The weather here has been so Spring like today…lovely blue skies. I’m sorting out all my pots ready for some spring planting.
Hi Belinda, just incase you haven’t seen the other bone mets thread…Wayne has been away on holiday with Maryanne and the kids and has posted on the other thread.
I haven’t had docetaxel. Will have to look it up unless you can you tell us more about it? Starting chemo again must seem a bit daunting but on the bright side at least you will be able to sit outside and look at your pots in bloom! I am not quite sure what my garden needs done as it is such a mess just now. We did do a wee tidy up the other day. I managed to fill one black bag…while R managed to do 7 or 8. But every little helps. The blackbirds, dunnocks and robins are having a field day this morning eating up all the nice juicy bits they can now find instead of turning up all the dead foliage!
My pain is under control again thank goodness. Still it proved that I need all the morphine I am taking. So it was a good exercise although an unpleasant one. Still have a dodgy left leg that feels like I might fall but never do. I have mentioned it to my Oncologist before but then it went away…typical! Still at my worst, years ago I was taking 120mg of MST and now it is only 40mg per day so I must keep that in mind.
Hope the Docetaxol does the trick for you and doesn’t give you bad side effects to deal with. Take care. Much love Val
bumping up as we have 2 threads going.
Thanks Val, replied to you on the other thread…this 2 thread is getting confusing. Not that it takes much to confuse me. I have a little while before starting the new chemo. I did read a side effects thread here but then decided I’d wait and see how it goes for me. Good to hear the morphine is working well. I see you posted about this elsewhere but just to let you know I’m having my DLA assessed at the moment…I’ve obviously lived too long.
x
Let me know how the DlA goes Belinda. Also what it entails this time. I feel I have outlived my time too…my OH is going to ask for a rebate! Good luck with the chemo. I am on facebook if you want to contact me anytime. I will PM you details. XX
Docetaxel = Taxotere
(I have bone and liver mets, not had docetaxel)
I had no intention of naming the person that upset me on the other thread and it is a shame that some of you have seen fit to do that - that too is very unfair on the person in question.
I am a scientist and frankly found the posts insulting to my profession and in some cases extremely dangerous advice to give to people. I am aware that we all have our own views, and will all approach our cancers in a different way, but I did not know that i could block out the personal messages back then and was finding the whole episode distasteful.
I would also have been happy for this thread to whither away and no longer exist. I have found the support that I needed, through the forum but in person with someone living nearby. I am also extremely lucky that we have a very supportive bunch of people in Somerset. However, this thread has been picked up by you all and I hope it will offer the support and encouragement that it was intended to do when it was set up.
hiya all you lovley ladies
ok HANDS UP!!! its me that caused all the trouble i would say sorry but if im honest im NOT, reason reading is the source of knowledge, we dont live in russia and everyone can read what i read any time just by google , im sure if the shoe was on the other i.e. me i would be looking high and low for a way out the s**t!!! so snowy if i upset you well thats the way it is im afraid you just need too learn and turn the other cheek now and then, ive done months of reading ive read lots of good things and lots of bad weather i agree or not i still read too find the good!!! so you just need too let people do what they want if they read it DONT mean they have too go out and do anything rash, as if i done everything ive read god knows where i would be right now ,im 100% before we try or i let anybody know what ive read, so i think WE ALL NEED TOO GET ON SIMPLE!!! and what you got too remember my friend even doctors dont get it right all the time, so lets just all get along and support each other through the tough and the good times!!! love huggs and wishes too each and everyone,
wayner each day passed is one closer too a cure
Hi Wayne, reading the very first post here it would seem that any partner or family member would not have been welcomed to participate on this thread. The other, older bone mets thread is a supportive and friendly place where all have been made welcome. As SnowyOwl2 would now have been happier to see this thread ‘whither away and no longer exist’ well I can only sadly agree wholeheartedly with her. Families, partners, children need as much support and kindness as those of us living with this disease. I will continue to post on the older thread. See you there, I hope…when the new forums are up and running next week.