Hello
got a bone scan next weds (18th) and am ridiculously worried about it. I was originally diagnosed in 1997 with grade 1, stage 1 invasive dc, had mx and av clearance, then recon, plus 5 years tamox, and was otherwise well until June of this year. This time have grade 3 recurrence post mx, same side, twice the size of original (tho still only 1.8 cm).
I have had this pain in my right shoulder (same side as bc) for about a month. Its got steadily worse, is constantly with me and is by far at its worst in the early hours of the morning when all the painkillers have worn off - I am living on co-codamol and ibuprofen.
In the past I have had an inflammatory problem in the same area, and I am trying to tell myself that its that, come back again, but at the bottom of me, I am very scared - I lie awake early every morning, waiting for pain killers to kick in, and try to come to terms with the notion that this could be bone mets.
I feel that I have to be able to manage this because, altho’ my kids are in their 20s - 21 and 24, they are still MY children and I know what the idea and reality of mets will do to them. They should be moving on and finding their own place in the world, but instead they are supporting me - lovely, but I don’t want them to feel responsible for me. Also, my oh - who has been with me since we were 17 (me) and 22 (him)is trying so hard to be supportive and bury his head in the sand at the same time, and its so hard on him, this whole b*ll*cks of a situation.
One part of me is telling me to get a grip - its probably just an inflammatory thing but the other is yelling in panic, because I feel so much at risk, and everything has changed this year. I’ve promised my 3 that I will be honest and straightforward with them, but we are so close and I feel as though I am hurting them terribly.
I read other people’s postings and I know I am lucky - I have been very lucky in love, in my life - but right now I am finding it terribly tough.
I’m not sure what I want from this posting - can anyone offer advice about dealing with all of this? I am so bloody sad about it all - and tired of being afraid. In 5 months I’ve gone from being a ‘high flyer’ with a strong career, good, busy life etc etc to a very tired, bald, and frightened woman.
I know how self pitying this must all sound, but its where I am right now - any help gratefully accepted
thanks
monica xx
Hi Monica, i am really rubbish at saying the right thing so i hope this doesnt come across wrong, but i felt i had to reply. It must be very frightening for you but im guessing it could just as equally be the inflammatory problem to blame for the pain. My friend in work had a problem with her shoulder, has jut had op to have some bone shaved off. She also described pain waking her early hours and living on painkillers. Dont let this disease make you feel like this, presume its not secondaries, you are getting it checked out, you may just as likely be ok.
big hug to you, my heart goes out to you,
take care
annaxx
Hi Anna
never tell yourself you are rubbish at saying the right thing again - your post has really helped me tonight. I do keep telling myself that it will be the inflammatory thing, but if its not, its such a crap thing for us all to deal with.
I have a really strong faith and have supported both my parents at the end of their lives in the last 6 years but the thought of explaining mets etc is doing my head in. I think, more than anything, I want to protect my son and daughter from this stuff. Well mixed up right now!
Thanks so much for posting xxx
monica
Hi Monica,
thats the thing with this horrible disease, the thought of leaving those we love and hurting them is the most horrible and upsetting thing ever. My mum tells me that those loved ones that we have lost are there looking after us. She was diagnosed with non hodgkinsons lymphoma 3 years ago and after refusing treatment was given 12 months. She is still fighting strong and i really believe that its her love for her family and her faith that has got her through.
I think its only natural to think every ache and pain is the worst scenario, i for one always do, but dont let this be so that it stops you enjoying life with your family.
I think also it takes so much from us, i used to feel fairly confident about how i looked, in my job, was so fit, its taken that all from me, but for now, i am going to get as much of that back after my op as i can, and its going to get a damn good run for its money.
I am not religious as such, but i do believe there is something, i will be praying for you that all is good with you scan, you deserve it to be,
take care
annaxx
Hi Monica, my daughter was in her very early 20’s and I’ve been with my OH since I was 16…(so we have some things in common!)… I wonder if your children might even have already thought or discussed amongst themselves the possibility of you developing mets before now?..they are all so used to the net, finding out info etc. It’s hard but we, Mums, just can’t always make everything ok, as much as we would so dearly, dearly love to…this illness is something that is completely out of our hands and we can only live with it as best we can. My daughter and my husband supported each other…a bit of a different scenario though as I was diagnosed when my hip fractured but I have seen in other’s children, some really young children, even in a worst case scenario they somehow cope, for a lot of the time amazingly well. As will you cope if you do have mets…it is so hard you, we, all just want your children to be happy…but life is horribly unpredictable. It’s amazing how we all somehow manage to find some normality in the chaos of living with cancer at times. All the women I have met with mets, we used to meet regularly, are incredibly ‘normal.’ We laugh, cry, just carry on as best we can. Yes our families struggle too, they have sad times, worrying times but for most of us we all somehow muddle through.
Good Luck…and I hope all will be well.x.x.x
monica im afraid i have no words of wisdom i just want you to know im thinking of you and hope and pray its not bone mets.
but even if it is im sure you will deal with that just as you have with all the other setbacks you have had overcome thanks to BC.
love and hugs
Lulu xxx
hello everyone
thank you for your support, it means a lot. Got very low last night, but am feeling much stronger today - its that old roller coaster!
Belinda - kids know the score re possibility of mets but I try and tell them things without bigging it up, to keep everything calm. The most helpful thing is knowing that if it is mets (and I am by no means assuming that it is) there are good people on here dealing with it and living good lives. The fact that you are also so supportive is such a big help - the difference it has made to me, having the forum this time (12 years ago it didn’t exist) is huge.
I am off to a family wedding this pm - about 270 miles away, so gonna put it to one side and have fun with my sibs.
love to you all
monica xx
enjoy you wedding Monica, im keeping my fingers crossed for you hun
take care
Carol xxxxxxxxxxxxxxxxxx
Hi Monica, enjoy the wedding…it’s like a hurricane here…hope you have better wedding weather.
Twelve years is a long, long time to have this shadow living with you…I completely understand that roller coaster feeling…here’s to more highs.
Take Care…I hope you don’t have a long wait for the results…I always ask ‘friendly’ inquisitive questions afterwards…I have been able to glean some feedback in the past. xx
Hi monica just wanted to wish you well for the 18th.LIke you I get very frustrated with this awful disease its not just the physical impacts its the emotional ones too. I hate every time I have an ache or pain thinking oh no what is it and feeling terrified.Did you have a bone scan when you had your reoccurence or is this the first one. I think the way I deal with it is I say to myself if it is anything to worry about its not going to go away so the sooner I get it sorted the quickerI can get my head around it, and if its nothing to worry about I can stop worrying. I think in the end its something that if we dident face up to we would go completely barmy.Like you I had a long time before it reoccured and I am finding it difficult this time. We will all be thinking of you on wednesday and please let us know as soon as you have any news. love suzan xx
hi monica,
so sorry to hear your news it is always a highly charged time when you are waiting for test and then even more when waiting for the results.
i had a mri a few weeks ago and get the results on tues, i’m praying they will be ok, i keep thinking if there was something wrong with it they would have contacted me.
i have a really bad back and they gave me the mri for peace of mind as i had secondries in lymph nodes on my other side. i was finding it hard to accept there was no cancer present in my spine, all my past tests just showed my spine disease.
i will keep my fingers crossed for you and hope there is a simpler explanation and it is something to do with your past problem.
lots of love
reneexx
hello again
Renee, hope you have positive results on tues - let us know, I’ll be thinking of you xx
feeling more positive, as you say Suzan, need to know and get on with dealing with it - and I know how I am, whatever it is, I’ll feel better when I know.
wedding was lovely - a lot of fun, but long journeys yesterday and today and little sleep due to being on stansted airport flightpath. Love seeing family…
busy hosp week this week will be glad to be sorted
love to everyone
monica xx
Good luck daisyleaf- I’ll be thinking of you- I have my scan on the 20th.
XM
Hi Monica, I do not know really what to say but reading your post made me feel quite emotional. I have had dble mx in the hope that i will not have to deal with recurrence, the fear that this bloody awful disease gives us robs us of the live that we need and want to live now, just when we think we can forget we then realise we never can…i hope your faith gives you peace and strength and you feel all the hugs and love from us all. Will be thinking of you on the 18th. I am in hospital for ovary removal consultation on the same day!!! Karen xx
Hi Daisyleaf
thinking of you …xxxx
Hi Daisyleaf,
would like to send you positive energy!
Love and light
xxxxx
Hi Monica,
I hope all goes well with the bone scan. I registered on this site to find out more about the illness and hopefully try to be reassured.
My brother’s wife had breast cancer last year and after a series of chemos with the last in February this year she was clear. She had a follow-up examination in August and was still in the clear. Last month to started experiencing back pain too but thought it was due to work. However, she was told last week by the doctor that the cancer had spread. She is now waiting to find out whether it had spread to other organs.
They are unaware that I know about the situation, I was told by my mother because she is very upset and haven’t slept since the day she knew. I, myself, always think about her young 2 year old and how my brother is feeling. I’m not good with words. What can I say and do to give support? Sorry if I have scared you, that is not the intention. I was hoping someone can say to me that it has only began to spread and although I read that stage IV is uncurable I don’t want to it to be a reality. I might be fooling myself but has anyone been in the same sitution and been cured as the cancer had stopped moving to other parts of the body???
Hi jimbo…I’ve just sent you a private message, if you are logged on you will be able to access it.
just wanted to send you a big hug cos the fear and the waiting are so awful. fingers and toes crossed for you. xx
Hi Monica, i just wanted to say im thinking of you and i hope it goes well with the scan tomorrow.
big hug
annaxx