I have started this thread on behalf of new user Kelly
I am 30yrs old and have recently been diagnosed with bone mets to the spine,pelvis and skull (after initial diagnosis 2 yrs ago).This news has totally devastated me and I guess thats why i’ve decided to join this forum (first time!)…I’m finding it really hard to find a way forward.
I’ve gone from being this person who’d supposedly beat cancer and had started to entertain the idea of a happy future that included marriage and kids…To this person who once again has cancer only this time round there is no battle to face as its already lost…I’m now unable to see a point or purpose in my life. (Sorry…i’m not usually so dramatic, usually pretty upbeat and thought I was much stronger than this!!)
Does it get any easier?
I can’t stop grieving for the life that I will no longer have and I am especially tortured by the fact that I will not have children with the man that I love.
I feel guilty for even posting this when there are clearly so many of you out there that demonstrate such amazing strength…But I’m feeling very alone right now.
…And on top of trying to function with my head all over the place i’m starting to worry about the practical things…Like how I will cope financially when i’m unable to work and housing…I live in a houseshare!
I’m also very stressed about my pension…I thought it would be a simple matter of claiming back my money but it seems not, apparently my best option financially (so I have been advised) would be to take ill health retirement by the 1st April (before new changes to scheme are implemented) but I love my job and was not considering leaving work just yet!
Well i’m sorry for my waffling but I must admit I feel a bit better already.
Your not on your own your with friends here. There are lots of us with secondary bone
cancer and I hope others will post messages to you. Just write down your comments and if you want to ask anything, ask and someone will get back to you. This is a good site and everyone is really nice here.
Take each day at a time, your looking too much to the future. I take each day at a time and every day is a new day. I have made lots of mistakes in my life but each day is a new day and I am so happy that I can enjoy it.
Life is hard at the moment you have so many questions you want answered.
welcome to the forums - and I hope that as you get to know us you will find it a bit less lonely. At your age I think this really is quite devastating news because of course it has changed the whole course of your life. I am a lot older than you at 63, and was a bit older when first diagnosed as well - at 45. For the past 6 years I have had extensive bone mets to the spine, pelvis, skull, ribs & collarbone but once treatment was under way within a few weeks I was pain free and getting on with life. At first you do feel this is the beginning of the end - but life can go on and you can live quite well with this. The bisphosphonates available today are good. My bone mets has certainly been arrested and in fact improved over these years. So I hope as you come to terms with the news that you will start to find the way forward. I dont have any advice about taking ill health retirement but am sure there are many on the forums who have experience of this and will share that experience with you.
To tell you the truth when I was first diagnosed with bone mets I was more than devastated … just didn’t know what to do… a total mess… my brain couldn’t handle the thoughts … the things I’d miss, the struggle I’d had to get where I was in life to find there could be no more plans allowed in my brain…My son couldn’t handle it at all … screamed /cried just didn’t know what to do with himself … like me our minds were not able to find a logic in it… So don’t be hard on yourself… we’ve all been there and sometimes subside at bad times… HOWEVER… I have similar bone mets to you … crap prognosis with ER/PR- HER2 +… but now after bouts of research I have decided that if we are alert and keep up with the new developments then we could be around for a long time yet… Stats are historical… they don’t include the new medicine and other technology evolving at a very fast pace… and there are many ladies out there who are still here many years after secondaries… So now I’m thinking … I need to get a job… not going to keep preparing for not being here as otherwise what happiness do we have while we’re here … xx Oh only problem now is .as I’m definitely going to be around for some time yet… How do I find a new man !! … (in this predicament)… as mine was a sh… XXX J
Hi Kelly, I’m sorry to read your news. I was in such a dark place after my diagnosis and went home from the hospital thinking I had very little time left. I think it helped me to just go with the flow for a while, however I felt on waking, sad, angry. Meeting up with others in the same boat, there are several meets being arranged on here at the moment if you feel up to it, has also helped. I’m still here and despite a little blip recently still feel well. I was diagnosed with breast cancer and bone mets together in 2003. Take Care, Belinda…xx
I am sorry to hear your news. I understand alot of what you say about being someone who had apparently left cancer behind and then wham…its terrible, There are alot of meetings being orgianised at the moment and if you are up to it it might be a good idea as it helps you feel less alone and different.
I do know what you mean about practical things, having to cope with things on top of having cancer, well its all a bit much isn’t it. Really I wouldn’t take any super hasty decisions…obviously I dont know what your position is with your pension etc…but one good thing that has happened is that we are protected by the disability discrimination act,…it gives us a degree of protection from being forced to resign, retire etc… Is there anyone you can talk to now about practical things? When I was first diagnosed I had a long chat with a friend of mine who is a solicitor about my job- it helped me get my thoughts straight.when I approached my employer. Maybe you can make an appointment with a citizens advice bureau and talk through options - if you can get some advice independent of your employer it might be a good idea. I am still working with my secondaries diagnosis…
Come on here and shout and ask for advice and just talk to everyone here as there is a wealth of supportive advice here and alot of knowledgeable ladies about treatment and other matters.
I’m so sorry to hear about your diagnosis, but we all understand what you are going through now. Like you, I was really worried about all the practical stuff, as well as having to cope emotionally. 1 year on after being diagnosed with lung mets, I am still working, and enjoying life . I still have down days, but find the forum and support I have accessed locally really important. Don’t rush into any decisions about your job etc-employers have to be flexible now, and I have cut down my hours and now been offered a secondment to a post which is a bit less stressful than my current job. I got good advice frm the wellfare rights and social work team at my local hospice, which helped me apply for DisabilityLiving Allowance. I also see a counsillor there every fewweeks, when I can unload anything thats bothering me.
Please let usknow how you get on.
I have posted this on behalf of new user Kelly
Thanks to everyone who responded with advice and words of support. I really do feel less alone and take comfort in the knowledge that we’re all going through this together.
I need to refocus and make an effort to take things day by day!
How do I find out about the meetings?
Thanks again everyone.
sorrry to hear about your bony spread. it is always so devastating when cancer comes back.
i presume you’ve had other scans to ensure it has not spread else where - sorry that sounds very depressing but if you haven’t had further scans it might be worth considering.
As others have said don’t rush into anything especially your job. You are protected under the disability discrimination Act and your employer is obliged to make reasonable adjustments so you can continue working. Please speak to the citizens advice bureau or is there a macmillan centre near you.
There are many women here who have had bony secondaries for years so please don’t think your life is all over now and that’s why I think you need to find out about other options other than ill health retirement.
My bony spread is not such a problem now. They were discovered in Sept 06 but I’d been unable to use my left leg properly for 4 months previously but nothing had shown. Now after biphosponates (I have zometa or zaledronic acid on a trial) and radiotherapy to my pelvis, shoulder and vertebrae my mobility is not limited by these secondaries.
However, in Sept 06 , they also discovered many other secondaries and it is the ones in my lung that cause me the most problem.
I continued to work until recently when my lung secondaries grew rapidly and I became quite ill. However, the recent chemo has made a big difference to the quality of my life and just been out shopping with my daughter.
I don’t know where you live but if you look in this part of the forum there are headings like South East Meet, anybody near a certain town etc and that is how you find out about where people are meeting etc.
If you get a chance to go on any of the courses run by this site then take that opportunity as well and the ring the nurse system has been really helpful for me as well.
All you can do is take one day at a time, find out what treatment they are offering you and find out what your onc thinks about you taking ill health retirement and find out your rights at work.
Hope I didn’t depress you about my secondaries but I’ve had 18 months of living with rapidly growing secondaries now and mostly I’ve been quite well, had brilliant holidays and been at work.
Keep in touch
So sorry to hear about your recent diagnosis. You ask whether it gets any easier and certainly for me (and I know for many others) it has. I was diagnosed with liver secondaries last May/June. It is also always easier when you are feeling well and feeling in control of things. That is in itself hard to achieve initially when you don’t know what treatment you’re going to have and what effect it will have on you, and you are probably not sleeping well etc. But that will get better and you will reach what I can only describe as a state of “new normal” - not the same as your old normal life but something that still feels a more normal existence most of the time at least.
Think Cathy has given you some good advice about employment. It’s hard not to try and plan for the future but what I have found (and I am quite a control freak so it’s been hard!) is that actually you can’t plan too far ahead because you just don’t have the facts, so you need to make decisions about the current situation based on what you do know - and then not beat yourself up if in fact you make the wrong decision with hindsight. So I’m continuing to work because I believe that is what is best for me at the moment because I (like you say) love my job and really don’t want to give it up at the moment whilst I can still do it. You need to decide what is best for you at this stage - and only you can decide that.
It would be great if you can make one of the “meets” as I have found being able to talk to others has been such an immense help and support - really makes you feel not so alone/different. I will see if I can bring the threads back up to the “top” so you can locate them easily, and then just post on the relevant thread to say you would like to come. Don’t know where you live but there is a meet in Guildford on Monday April 14th (I will be going to that one), a much bigger one probably in London on May 6th (I’m also hoping to get to that one), one in Granchester and then (I think) one in the NE and one in Liverpool (or possibly Manchester - can’t remember, I’m afraid but will track down the thread for you).
Take care and let us know how you are doing