I can't connect with my diagnosis..

Ellamary98

Hi there, This is my first post for 5 years. A month ago, I was diagnosed with metastatic bc in my spine and rib, 5 years almost to the day of my initial diagnosis. I am perfectly well, and it was picked up after a routine oncology check showed elevated markers in my blood. The week that my oncologist phoned me, I was completely snowed under with work and family commitments. My aunt had died whilst I was sitting with her, the day previously, and I was responsible for organising her funeral arrangements. I had a thesis proposal due in, and a critical work project about to begin. My husband was interstate, and I was playing catch up at home, having just arrived back from a European trip. It was chaotic.
Initially, I had a tiny cry and did some swearing, but then I decided that I could not afford to indulge in any kind of medical drama, and I put it aside to be dealt with later. The thing is, now that life has settled down a bit, I am having trouble even connecting with my diagnosis. It feels neither real, nor important- although my head knows that it is huge.
I have told my siblings- by text message, but advised them not to contact me because "I have no interest in discussing it right now'. I have told my 5 children ( teens) in as upbeat and dismissive a manner as possible, but cannot bring myself to tell my father. I have told my closest friends, but they are under instructions not to share the information. It is business as usual. I know that my friends and family want me to open up, but I hate drama and I despair at the idea that I will be forever considered through the lens of cancer. I feel the need to control the information, because I know that it will be dynamite to my broader family and friend group. I cannot deal with everyone's fear when I am unable to even connect with it myself. They were all so wonderfully supportive through my initial treatment, but that can be overwhelming, too. 

I suppose my question is, How did others share the diagnosis in a way which didn't feel like dropping a bomb?  Did others feel this remarkable sense of calm, and is it going to hit me like a ton of bricks?

Boobless2

Hi Ellamarie, so sorry to hear your news. Im in a similar situation - just diagnosed a month ago and on my second round of Xeloda. I guess I always expected it to come back, as this is my third visit of the BC. The hardest thing ive found is the reaction of my young adult children, especially as one is a childrens oncology nurse and the other is a young doctor. I guess if they showed such concern then so should i. But i dont feel sick - my diagnosis came as a result of a rash which lead to a biopsy. 

Friends have been super supportive. Ive been working hard on my fitness level, exercising most days and that certainly helps. Friends are offerring to exercise with me so that helps a lot. 

Despite the seriousness of the situation i take hope from people who have survived 10 plus years. And the treatment so far is reasonable. I just hope it works. 

Ive been put on Xeloda. What is your treatment?

be kind to yourself. 

kmakm

Well Ella Mary that sucks arse big time.

I haven't had the same diagnosis as you but thus far I've never had a ton of bricks moment.

I'm sure you know there's no right or wrong way to respond to any news of this magnitude. It's possible your psyche is trying to protect you in some way. Psychologists say denial is unhealthy and can lead to PTSD, but it doesn't sound like you're in denial. More that you are searching for a handle to put on it, and like all of us, seeking to control the flow of information in a situation that inherently lacks control.

I'm no authority but I'd say first and foremost to be kind to yourself. To not put any expectations on your reactions and emotions. You feel what you feel and there's no wrong here! So let yourself off the hook.

Calm can be very good and it sounds like you have plenty going on in your life that requires as much calm as possible. My husband and I had to break the news of my diagnosis to my 8 yo niece and 12yo nephew 17 months after their mother died from this bastard disease. We are raising them, and it was the hardest thing I've ever had to do. You choose when and how you tell people, if you want to. Mass email, email chain, FB page, however. Put a circle of close friends in charge. Say you don't want to discuss it at the moment and leave it at that. I did and was left magnificently alone with it until I was ready.

You might want to slot in a bit of counselling if you feel you're having genuine trouble connecting with the diagnosis. You do have to grapple with it in order to commence treatment. Once that's under way you may very well be able to pretty much ignore it and carry on more or less normally. You could give the lovely nurses on the BCNA helpline a ring to start with, 1800 500 258. They should be able to point you in the right direction.

There's a private metastatic group here which you could join if/when you want. The people there will have more insight than I do. And there's the BCNA Hopes and Hurdles kit that could help too. Have you got that?

My heart goes out to you and I'm sending a big bear hug your way. Kate xox

Ellamary98

Thanks @Boobless2 . I think that's one thing which makes it hard to accept- I feel perfectly fine, and have never been more well. I agree that exercise helps. Life has been too busy lately, but I am looking forward to getting back into my running routine. For the moment, I am still just on Tamoxifen. My onc thinks that my lesions have been there for over a year, and are growing slowly, so wants to see if there is any change next month, before he puts me onto Ribociclib and Arimadex. I am certainly not looking forward to changing drugs- it took about 3 years for the side effects of Tamoxifen to settle down. I don't know Xeloda? Is that for bone mets?

My children weren't too alarmed, but I complained of a sore back on the weekend ( a muscle spasm), and I could see that the older ones (18 and 19) were on alert. I suppose your children have seen enough in their work to make them extra concerned.
I'm glad to hear that you have supportive friends. It does make all the difference. My friends will be great- I just need to convince them that I intend to remain perfectly well for a long time!
It helps to read about others' experiences on this forum. Thanks, and take care.

Boobless2

I have a pleural effusion which means one side of my lungs has collapsed- explains my breathlessness when I exercise, also some spots on my spine. 
We have a trip planned to Scandinavia in 3 weeks ( organised before diagnosis). Saw Oncologist today who was not as positive as he has been about the trip. We are still hopeful that we can go. 
I guess it's just taking each day and enjoying your health. 
Good luck with your journey- I wish you the best. 

Kiwi Angel

@Boobless2. I have not had the same experience as u as I have just finished treatment but just wanted to send u my love and all my positive thought that u get to go on your holiday. Xo

arpie

Oh dear, that's a real bummer @Ellamary98  ..... a friend has had a similar diagnosis recently with mets in the ribs (don't think it is in her spine tho) ..15 years after original diagnosis/surgery.  She's had a brain scan & other scans & it hasn't spread to her organs. Hers is a slow growing one - so has been put on Hormone Inhibitors and may have radiation at some stage.  She doesn't want to do chemo anyway.  She was having rib pain & it was found thru a biopsy.

That's the silly thing - I think there are quite a few of us that felt fit & healthy when diagnosed, yet family & friends thought we should be in bed looking 'ill and frail'.  

You've had an amazing lot of stuff on your plate all at the same time .... you may feel a little 'flat' after everything settles down ..... maybe just take it a little easy when you can.

How I dealt with my diagnosis (it is always going to be a bit of a bomb - but when they see that you are fairly OK with it - they normally act in a similar manner, I've found.) ...... I emailed most of my buddies/family as it was easier than telling them physically (or I would have blubbed big time! LOL)  My brother & SIL in Sydney were my most amazing support (I live up the coast) and I lived with them on & off for nearly 2 weeks as I had my initial appointments, surgery & recovery.  I didn't tell ALL my immediate family tho - for a variety of reasons.

Like you, even tho a bit sore, I 'felt fine' and 'looked fine' - I'd told everyone NOT TO BE SYMPATHETIC (or I would blub) - to tell me lots of jokes ..... and luckily they obeyed!

Your kids will be naturally 'hesitant/scared' as they would well remember what went on after your initial diagnosis .... so THEY may need a bit of counselling as well as yourself in how best to deal with it all.

All the best with your next meetings with your health providers - I hope you can get onto your meds/procedures fairly quickly & with least drama to yourself.  Thinking of you - the diagnosis is always the pits!   

Ellamary98

OMG, you are all so lovely! Thanks for all that advice and reassurance. I'm not going crazy, afterall. @Boobless2, I really hope that you can get away on your trip- Scandinavia sounds like a fabulous escape. @kmakm , you made me laugh. Yes, I probably am just looking for a handle, and I probably should get some counselling at some point, but I will probs just sit on it for a while, I guess. Thank you so much. 

kmakm

Ooh I'm so glad I made you laugh... I'm here all week, try the veal! *boom tish*

Boobless2

Thank you Kiwi Angel and Ellamary. I know that grief comes in stages, and this diagnosis is definitely something to grieve about. But I think we will be up and down as we battle this monster. But I believe it’s good to enjoy life while we are feeling well and hope for the best. 

My my first breast cancer was in 1999. I had a lumpectomy, chemo, and radiotherapy. My son was 7 and he came to visit me in hospital after the surgery and asked if I was going to die.  ( my mother in law died from this when he was 2 months old and he knew about her ) . We were able to reassure him then.  He is now 26 years old and a beautiful man with the kindest heart, and he is a doctor doing surgical training. And my lovely daughter is a nurse and has 2 gorgeous sons. 
There has been so many good things. 

Ellamary98

@arpie , You are right, it seems crazy to have everyone consider you ill and want to take care of you when in fact you feel just fine. I remember thinking that when I was first diagnosed and the machine that was my friendship group swooped in to look after us. I guess I am avoiding that this time round..It is not going to be all done and dusted in a few months, so I need to remain in charge. 
That must have been a shock for your friend- 15 years later! My other scans were clear too, thankfully.
I can see why you would email your friends. My siblings weren't happy about the text message, but I couldn't have faced 5 phone conversations..
Anyway, thanks for the supportive message. I hope that you are doing well.

Ellamary98

@Boobless2, Being proud of your children is definitely one of life's simple joys.It sounds as though you have a lot of blessings.

onemargie

It’s scares me shitless that you didn’t have any symptoms @Ellamary98 and my oncol has stopped the three monthly bloods and says they aren’t necessary.  I was diagnosed may 2016 (triple neg stage 2a grade 3 no lymph nodes involved scans all clear) so 2 years cancer free for me But after reading your story I feel perhaps I should insist on them now.  He says tumor markers aren’t always a good indicator of disease . I have some osteo as a result of the chemo putting me into menopause and the oncolalways reassures me thats all it is and the symptoms have been the same all along   with that morning stiffness sometimes and sometimes it’s aggravated on a cold morning. So how the fuck are you supposed to know if the ugly fucker has raised its head again or not!!  I so wish you all the very best love and I hope the change of medication is kind to you too. Like you said you’ll be around for a long time yet. It’s reassurng to hear you are so positive about it. I think the counselling is a good idea you will know when the time is right for you with that. And yes @kmakm is always entertaining so is @Zoffiel. Always makes you laugh. That’s how I’ve got through all this shit too. Biggest hug. Margie xx. 

Ellamary98

Hi @onemargie. That's great that you are 2 years cancer free! I never really stressed about having it return- not because I didn't think it could, but because there isn't a lot I could do to control that. My initial bc was stage IIIC, so I felt that I had dodged a bullet the first time around. Having said that, I think I was a bit complacent. I hated being on Tamoxifen and decided to take a couple of months off. The break did actually did reset some of the side effects, but now I am wishing that I had just stuck with it. I also missed an oncology check, and didn't have any blood tests for 18 months. When I finally went back, my markers were up. It does look as though the cancerous spots on my bones are about 12-18 months old, so I may have done myself a great disservice. Lots of specialists don't take tumor markers very seriously, but in my case they were certainly helpful. Maybe speak with your onc about 6 monthly blood tests if it reassures you. My friend had a very similar diagnosis to yours, and triple neg. She has been cancer free for 7 years now, and doesn't have blood tests.
The osteo is a pain for you! I really hated all the muscle soreness and weakness after chemo and the sudden menopause was just shitty! I all settled down though, and I'm sure it will for you too. I can't quite shake the brain fog! Thanks, Margie. Take good care of yourself. xxx

iserbrown

@Ellamary98
Goodness sorry to hear where you are at!  
There are lots of good scouts on here that will support and make you laugh when needed.  As to where you are at perhaps consider taking on treatment et cetera without family and friends until such time as you're somewhere along the track, a little more in the acceptance mode.

Well meaning comments of family and friends and offers of support are appreciated however sometimes we feel like it is all about them and their reaction rather than about us.  

Take advantage of the BCNA website and grab some of the tools for coping with the well meaning and understanding of your diagnosis.  When I was diagnosed the Counsellor appointed to us suggested that we create a circle around us and have a gate keeper (my hubby) and keep the positivity around me.  Ring the BCNA helpline 1800 500 258

Take care

Eastmum

Hi @Ellamary98 - I'm going through my first diagnosis with Breast Cancer and haven't been diagnosed with mets - definitely a raw deal for you there and with all the research and new treatments available I'm sending you lots of positive vibes....

What I can relate to, is a disconnection from your diagnosis and really wanting life to go on as normal. I was diagnosed in January with invasive lobular carcinoma and managed to get the A-OK to delay my surgery and treatment until April. Apart from the time that I was going through the staging scans (about a week), for most of those three months I just kept the BC diagnosis in the background, doing as much research as I could about what I'd be going through, but effectively just working, socialising and running my household as normal. The only people who knew about my diagnosis were my husband and kids (and they were all fine, because I was fine), one brother in law who is a doctor, one close friend who is a BC survivor and my manager at work. I didn't tell anyone else.

In fact, the most STRESSFUL time for me was a week before my surgery, when I had to let the cat out of the bag to the rest of the family and a whole heap of friends. I knew that a lot of people would react badly and that I would have to manage their fear just like you are dreading - all the while I was feeling absolutely fine, looking fine and doing fine! 

I sent out a text message and basically set the tone - using a bit of humour (started my text by telling people I had to get a couple of things off my chest) and laying down the law - didn't want to hear gloom and doom, don't contact me until you've had a chance to absorb this and deal with it and you're ready to be on Team Chirpy etc - it did have the desired effect and although there were a few people who dissolved in tears that I had to mop up, generally everyone is 'behaving' - at least to my face! hahahahah - I'm sure it's a different story behind my back!

You'll deal with this in your own time, your own space and your own way. Don't feel that a sense of calm is a bad thing - it's actually a gift. You're obviously pragmatic and you'll take one day at a time and one step at a time. 

Sending you lots of hugs xx