Not doing so well

LDP

Hi everyone. I thought I'd get on to share that after my MBC diagnosis 2 weeks ago, I am struggling. I'm on Ribo/Fulvestrant combo for treatment and two weeks in am doing okay physically. I wish I could say the same mentally. Having read many of the posts, I'm ashamed to want to post at all, but I wanted to reach out to see how others coped mentally in those first few weeks. I have had no success getting hold of a psychologist; you have to wait weeks. I feel depressed, sad and have only been able to cry in the last few days, and usually what prompts that is when I ask my best friend how he is coping and I see how he is struggling too. When he says 'I can't fix this' my heart breaks. I went to the supermarket the other day and felt like I was having an out of body experience. I have anxiety, not helped by lack of sleep, although that is better after I spoke to a GP and refused to get off the phone until she prescribed a sleeping tablet, so I've had a few more hours sleep since Sunday. I shake, inside and out. I feel numb, scared and when I set down to doing some work, I lack confidence. 
So my question to you is, how did you manage when you first learned you had MBC? What did you do to help yourself? Any suggestions are warmly welcomed. Thank you sisters

arpie

SO sorry to see you here @LDP .... this disease really mucks with the brain even more than the body, i reckon  

Call the BCNA Chatline tomorrow on 1800 500 258 to help with coping mechanisms ..... I have not been diagnosed with MBC but my husband was sadly diagnosed with Mets just over 2 years ago, so have first hand experience of dealing with it & how it affects everyone - both family & friends xx. It is tough.

Don't be afraid to look at the use of the 'magic oil' (Medicinal Cannabis Oil) - with your Onc's blessing - as it has helped me with both sleep & pain control of AIs ....  and I believe it is better for you than sleeping tablets. xx

Keeping busy (and learning new skills) is one way of coping .... 'down time' allows your brain to go off onto weird tangents that aren't always helpful   Reach out for help too when you need it xx


Take care

Abbydog

Have you spoken to your Oncologist how you are feeling? Or to your Breast Care Nurse, if you are lucky enough to have one. Perhaps they can make an urgent referral to a Psychologist.
My experience was odd. I just seemed to go through the motions with treatments.
Good luck with your treatments, and I hope that you have success with getting some support.

arpie

@LDP -  You are still in a state of shock as well .... and feeling down is definitely totally normal xx

A bit of your background story leading up to the Mets diagnosis would help us understand a bit more too.  

It looks like you have already joined the Mets group - so I hope they are helping you too.

If you add your 'general location' to your profile, we may have members nearby who might be able to head you in the right direction re available counsellors/Psychs ....

As well as Abbydog's suggestion - The Oncology dept where you are having your treatment should also have a dedicated Social Worker who should also be able to arrange an urgent meeting with a psychologist ... so absolutely don't be afraid to reach out to the health professionals. xx

Here's a link that may help with some of the forum's 'other features' .... even a couple of funny areas, for a bit of a laugh ....
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

take care & all the best

KimF

Hi @LDP.

I'm so sorry to hear that you're struggling. I'm a month ahead of you - got the news in early January - no signs or symptoms. I'll be honest - I howled constantly for the next week whilst I was having all the tests. The shock was unbelievable. We then went away for a few weeks, and I spent lots of time howling and I was in a deep, black hole - I was numb and didn't want to talk to anyone. The rest of the party were skiing, and I wasn't able to ski as the slopes were too difficult for me, so I went walking most days. It wasn't the nicest 'holiday', but it gave me the space to howl, feel sad, think, do some research. It also gave me the opportunity to act on my niggles I felt about my surgeon, and thanks to this group, I found another surgeon who I'm really happy with.

I'm trying very hard to look for one good thing in the day - just one to start with. I'm trying to use all my senses - if I'm sitting in the garden, I look for pretty things, I listen to the birds tweeting or the rustle of the wind in the trees, I feel the sun or wind on my skin, I smell the perfume from the flowers or the newly mown grass, I enjoy the taste of my tea. I found it quite hard to slow down my mind, and often I don't succeed, but when I do manage to slow the mind, I do feel a bit better.

I've also felt better now that I'm settled on my surgeon and oncologist. I'm meeting with a plastic surgeon later today to discuss reconstruction options, and I've howled all morning. I'm beginning to think alot of my anxiety and howling is to do with the unknown and not being in control.

All I can say is that I took 1 minute at a time to start with, then 1 hour, then 1 day. Take 1 appointment at a time. Keep lots of notes, and write down lots of question. My surgeon and oncologist are very pleased that I'm (with my husband) taking control - effectively project managing my treatment.

My husband is also really struggling - his mum lost her battle with breast cancer last year, so this is all very raw for him. He also says that he 'feel's helpless as he can't fix it', and it breaks my heart. 

I've tried meditation and mindfulness previously, with out success, but I listened to a BCNA webinar last week on Managing Stress - here's the link https://www.bcna.org.au/webcasts-new/webcast-managing-stress-and-improving-wellbeing-with-mindfulness-and-meditation/. I found it very useful and they've put some links in a pdf which I'm going to start working on.

I'm really feeling for you - please reach out here if you need support as there are so many people who can help. 

Hugs

Kim

brightspace

Please contact your Oncologist for referal for psycologist

When I was first diagnosed the oncologist  emphasised the importance of  this

Treatment through public system at local public hospital cancer centre was via medicare so no cost

Also contact your metastatic breast care nurse for assistance

All the best 
Bright in hope

LDP

Hi all. Thanks for the encouragement. First diagnosed with HER2+ in 2018 and consequently underwent lumpectomy, chemo and radiation. Prescribed Anastrozole. Reccurance in August 2022 but not metastatic. PET/CT scans in Jan showed enlarged lymph node in chest which was biopsied along with two other lesions on lungs that were discovered whilst lymph node was being excised. Positive for same breast cancer so diagnosed as metastatic.

Oncologist has referred but can't get to see anyone I've tried. Treated at a private hospital and my access to breast care nurse - not metastatic - no relationship as I have to ring them on a needs basis.  Would have hoped for better.

One day at a time; one foot in front of the other

brightspace

Please touch base with your GP 

If you live near larger city...

Generally majority of Metastatic treatment can be fast tracked via public system as larger hospitals have cancer centers

Fufan

@LDP. My sympathies: I had exactly the same sort of relationship with my alleged breast care nurse i.e. virtually none!  I think Covid restrictions had a lot to do with it, but it does seem public patients are better served in this regard.

One thing I did learn on my recent journey is to push, push, push.  You have to advocate for yourself.  As they say, it’s the squeaky wheel that gets the oil.  Good luck!

cranky_granny

@LDP
I wonder if you can switch to public system
i have used my local cancer clinic for nearly all my treatment. I have had breast care nurse from the start. When i was diagnosed metastatic i was given a McGrath nurse. And saw the social worker. When later  i struggled again with the diagnosis my nurse had me see counsellor again. I also see physio through the clinic.  I have no real major complaints about my treatment at all. I didn’t like the radiation oncologist i was first given and was immediately switched to a different one who was great during my 2nd referral for treatment on my mets lesions. 

Not knowing where your located i cant give any further advise. Re lack of support. Cancer council as well as bcna have been a great help along this life journey we are on. 

Best wishes with getting the right help. Reading some posts i have been extremely fortunate with the Oncologist I have she doesn’t muck around with anything and answers all my dumb questions. And my nurse is only a phone call, message or email away. 

Abbydog

So far as Breast Care nurses go, some women are well serviced by them as on TV. 
But I haven't had any such care, here in Adelaide

cranky_granny

@Abbydog  sorry Adelaide isn’t coming up to measure. I have been extremely lucky in the support compared to some of the comments I have seen posted. I’m in outer western Sydney. Not all of my local public hospital clinics have been as good as the cancer care centre here. 

Afraser

I didn’t have a breast care nurse. But my oncologist’s nurse (and wife!), my senior oncology nurse and my surgeon’s nurse were all really helpful at one time or another. My senior oncology nurse recommended both my lymphoedema therapist (ten years on she’s still my go to person for my arm) and a counsellor when long term side effects had me a bit flustered. Both were excellent, not just professional but well suited to
my personality and preferences. Sometimes you just have to ask, but be prepared if they don’t know or can’t help. Best wishes.

LDP

Thank you @Afraser. Trust me I have asked everybody I know of and will continue to do so.

LDP

Hi @KimF I hope all went well with the surgeon. Yes, the unknown and loss of control! It's hard.

LDP

Hi @cranky_granny. There seems to be something to be said about the public system by all accounts. I have the Olivia Newton John Wellness Centre in Melbourne just over the hill from me. Can I use it? No, wasn't treated there! Have to persevere!