67.9K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Confused and scared

11 REPLIES 11
Wonky
Member

Re: Confused and scared

Hi Fluff. Wowza hun, you are rocking it! Inspirational. Batty is in the eye of the beholder and I don't care if people think I'm odd; batty works for me- lol. 

I believe ( now) that the most important things are contentment in your heart and comfort in your life. But always being kind to others along the way. 

Enjoy those chocolate covered dates and I wish you all the very best. Wonky

Fluffball
Member

Re: Confused and scared

Well, I've had my first EC treatment and to be honest have had hardly any side effects - I'm due my next in three days time.

 

I've been given the option of not doing the EC-T and just going straight onto endocrine and a targeted therapy, with a few different suggestions of ways to go forward. As I've already started the EC-T and seem to be doing OK with it I've decided to stick with it in the hope that it may well work on the secondaries in my lung anyways and make the next step a little less dramatic for a while. 

 

I'm lucky - it's been caught much earlier than it really would have been, I see stories where people haven't been listened to and have had all sorts of problems before diagnosis, it seems mine has been caught right at the beginning and any spread should simply be a case of "now we know we will check regularly and react quickly", as a result I feel hopeful of many, many years ahead of me with an awareness I am going to learn to live with.

 

Discussions with my family have been tough, I want them aware now of my expectations in life and my values, I want them to hear this now and for them to understand that I'm taking control and making decisions in my own best interest, regardless of others, I intend to be selfish and to consider only myself in this, I love my family but no one is dependent on me, I have a son who is out in the big wide world and making his own way and a husband who knows me well.

 

I still see myself growing old and rather batty (believe me, I'm having fun with the batty side of life!! 😁), I still have expectations of where, what and how I'm going to live, I just know that it's valuable and that it's worth living NOW...

 

In the meantime I need to research my options and start accepting my diagnosis, I need to know what's available and what isn't, what's feasible for me and what I want next. 

 

Ooohhh... I know what I want next... Chocolate covered dates...  Oh Christmas has some rather yummy benefits!!! 😁 

Wonky
Member

Re: Confused and scared

Oh Fluff, I fully understand what you are saying, but of course it's "worth it", because you are worth it! 

I can only empathise to an extent, as my BC pales into insignificance, but I experienced " maybe chemo / maybe not" for six weeks (it was eventually a not) and had a total meltdown when they told me they might suspend my rads when I was practically through their course. It's the uncertainty which leaves you having to cope with more than is perhaps necessary. Have you been assigned a BC Nurse? If so, perhaps you could explain how you are feeling and ask her to provide clarity for you, at every stage, so you are not left to sit at home pondering and experiencing more stress than is entirely necessary. 

I guess if you stay composed when you are with your onc team, they might not have realised that you are stressed/ distressed. Don't recommend the Wonky Way of communicating stress/distress ( very dramatic but I couldn't control the fear and it manifested as crying/shaking/wretching) but at least it was obvious to them that I was struggling to cope. Better out than in, as the saying goes! 

Are you going to hospital on your own? If so, find someone who can go with you ( or draw up a rota of family, friends) to be your second pair of ears in these meetings you are having with your onc and can help you process what was said, once you get home. Sorry if stating the obvious, just trying to say something which might help a little bit. Wonky x

Fluffball
Member

Re: Confused and scared

Well, now going forward with the original plan anyway, starting Thursday - lots of talk about whether or not to change it, but in the end they're going with "treat it as if it's curable and hope" - at least, that seems to be the gist of it!!!

 

I give up  to understand what's happening and am just hoping they don't keep springing more surprises at me right now, because I am seriously getting stressed and feeling that it isn't worth it more and more every time I visit!

 

So... Thursday and EC #1 out of 4 (perhaps!!) 

Wonky
Member

Re: Confused and scared

Fluffball, hat off to you for such a measured approach. I sincerely hope things will be better for you tomorrow. I'm guess you are flagging energy and resolve wise, but you have done incredibly well, so one more push? Thereafter aI think you deserve many duvet days. Sending a Wonky Hug. 

lovemama
Member

Re: Confused and scared

*****  PS. I am no medical  ****

Hi Fluffball, from your previous post your cancer type belongs to ER+ HER-. to treat the metastatic of this cancer type, they usually offer the hormonal treatment as the first line treatment ie. Fulvestrant+abemiciclib, Letrozole+pablociclib or riblociclib , etc, etc which does not need IV. In case, you may want to check with your medical team what will they do to your portacath which is already in. 

Kaggy
Member

Re: Confused and scared

Hi Fluffball

I just wanted to send you a huge hug. It will no doubt be a tough meeting for you tomorrow with the oncologist but I hope you manage to say how you feel and and that you can voice the questions you want answers to. Don’t be afraid to say how you feel - it took me a while to realise that I could take some control of the meetings I had with the different members of my team. And it felt better when I did so.

I wish you the best outcome and will be thinking of you. X

Fluffball
Member

Re: Confused and scared

Hi Shi, yeah, I'm seeing the oncologist tomorrow morning , so hopefully will get some answers - it's just that every time they give me answers a week later something changes their minds and its kinda making me feel like they don't really know what's happening themselves - I mean, how can you go from "nothing" to "easily dealt with" to "non-curable" in such a short space of time? Right now I feel that this should have been diagnosed ages ago and every wrong diagnosis is just wasting my time and making things worse.

 

Deep breath - 

 

Yes, I've got to get how I'm feeling across tomorrow, I need them to know how badly I feel treated and how little faith it leaves me in their abilities, I need to know why they've struggled and if I'm finally at the right place I need to be diagnostic-wise... 

 

I'm just trying to make sure now I don't get tempted into saying I don't care and burying my head in the sand and refusing to move at all out of sheer fear. 

Shi
Community Champion
Community Champion

Re: Confused and scared

Fluff ball sending ❤️ Have you been assigned specific oncologist? Ring their Secretary tomorrow and speak to them and explain you really need to speak to/see the oncologist as soon as possible because you currently are not being clearly advised on what your treatment plan is and you would like to know. 💕💕shi xx

Fluffball
Member

Re: Confused and scared

Yeah, extra problem there is hubby took today off work, and even discounting the loss of earnings, taking more days off at such short notice isn't going to help his career, whilst his company have been fantastic, we don't want to push too hard and end up struggling with other issues too!

My normal back up is away on holiday this week and finding someone this short notice isn't going to happen. 

 

Halfway to declaring the week and duvet week and ignoring the world!!! But I won't, and believe me I'll be knocking heads, throwing tantrums, albeit quietly, and probably falling into the odd ball of sobs, but, it's gotta be done.

 

Sigh... 

 

 

Gina G
Member

Re: Confused and scared

I am so sorry you had to go through this but this is now your chance to get your results and correspondence together and go with a close friend or partner to the next appointment and ask questions and if necessary bang a few heads  together (metaphorically).

It will make the team sit up to take notice. 

 

Fluffball
Member

Confused and scared

In June I found a small lump, was told not to worry, just hormonal and linked to the menopause.

By end of August it had grown too much to ignore and believe it was so innocent. 

Diagnosed initially and told, "treatment and back to work just after Christmas, not too much to worry about"

Since then every time I've been back the news has been "its a little worse than we hoped" and after a masectomy and lymph node clearance of five tumours, between 2cm and 7.5cm, I was told blood markers were indicating metastasis of the cancer.

Initial scans picked nothing up and I was told they would proceed with a diagnosis and prognosis of stage 3c (ish) and be optimistic that the blood markers were simply a little icky.

However, whilst having my portacath fitted, the radiologist spotted a couple of small shadows on my lung. Consulting with someone on the phone they decided to go ahead with the port and continue with my current treatment plan, with the goal of an MRI scan next July/August after chemo and rads.

Turn up for my first chemo today to be told everything had been changed and I was being reassessed after all and no chemo today. 

Now, they've said I'm being treated as stage 4 and to wait to see the oncologist again... 

The whole "journey" has been a nightmare, nothing has gone to plan, I'm questioning everything and getting contradictory information all the time, at least it feels it because by the next appointment it's changed!

I'm getting into a real icky mental state here and just want to know what the hell I really am facing!

Sorry for the rant, sometimes it's needed... 😔