Finally brave enough to call BCNA helpline, and they are closed ...

FionaM

So, sorry about this,  but I have to have a verbal vomit. And I did have a laugh to myself when I heard the message on the BCNA answering machine..... but now it's tears.

Does this ever end?

 I'm 2 years down the track,  after mastectomy,  chemo,  radiation, and reconstruction, all during covid, via support-less "click and collect medicine", and now 2 years on Zoladex/AI's so far (1102 more of those suckers to take if I can hack it, not that I'm counting). No one told me the depth that the side effects could be,  and I have felt guilty for feeling depressed and anxious most of the time.  Sleep is awful, hot flushes are now down to 8 -10 per day from a high of 50 or so, but are doing my head in as they now seem to be coming with a panicky sensation. My brain doesn't work properly, my hands hurt  and life just keeps getting more complex.  I'm the care giver of the family,  and my husband was diagnosed with stage 3 rectal cancer on the 2nd anniversary of my last dose of chemo.  He's coping,  I'm falling apart.  I feel sick when I think of the journey he is starting,  and I'm not a good support for him as I'm feeling so stressed and triggered by it all. Work is using up a lot of resources as I'm short staffed and I can't cut back.

I have no idea what to do.  I'm really reluctant to take meds for this. I've tried clonidine before, and while it stopped my heart racing as I was trying to go to sleep,  it made me too dopey during the day to keep using it,  especially since it didn't help the hot flushes.  I'm pretty sure I'll have the same issues on anything else,  and I can't afford to be dopey with everything that's going on. I'm seriously considering stopping the AI's.  But i feel guilty for thinking about that too. And I suspect that if I do stop them,  I'll not be comfortable with that decision either. 

Catch 22.

Sorry, but I needed to vent.  Writing it down makes you stop and think a bit, and maybe that's helpful.....

Anyone have a spare magic wand??

Afraser

Sorry, don’t have a wand but you really do have a lot to deal with. First of all, cut the guilt. You are trying to cope with difficult circumstances when you are under par, you have nothing to feel guilty about and those feelings don’t help you in any way.

Second, have you tried any other AI? Those side effects are debilitating and I too would be nervous about adding other meds on top to try and counter the side effects. What does your oncologist say? He/she should take this seriously. You might discuss stopping the AIs for a limited time , to see how you feel, recover some balance in your life and try again. Sleep deprivation makes almost anything much more difficult. 

Your husband is coping, which is good, but remember that everyone’s experience of cancer can be very different. My husband had bowel cancer, a few years after my diagnosis, managed chemo with few side effects (didn’t lose his hair!), soldiered on and has never looked back. Worrying for your husband too is natural but doesn’t really assist either of you. 

Who can you talk to (in addition to here)? Your GP? Breast care nurse? Venting does help but so does letting your cares and worries out to someone in person with big enough shoulders and not loaded with their own problems. Or a professional counsellor - one of the other things you don’t always hear about is how cancer may affect your emotional life. It’s very normal when most of your givens have been turned upside down. I found a short spell with a smart counsellor immensely helpful about sorting out my priorities, the right way for me. And you’re right - putting stuff on paper, or a computer page, privately, can help too! 

Most of all, be kind to yourself. Let your actions and thoughts be about making your world a little better, not exhausting all your energy. Best wishes. 

arpie

I am so sorry to read of your journey so far @FionaM and also sorry the helpline wasn't available to you when you rang xx That was a bummer, as it takes guts to call the Helpline  x. - I am sure they'll be able to give you wonderful support.  Please ring back tomorrow, between 9am & 4pm (so you beat the 'cut off' for the weekend.)   1800 500 258 - or you can arrange a 'call back'.
https://www.bcna.org.au/helpline/#:~:text=Contact the Helpline,to get a call back.

Whereabouts are you?  (You can add your 'general area' to your profile) as we may well have members nearby who may be happy to meet up for a coffee & a chat xx.  Also other members may be able to point you to specific medical professionals who may be able to help you with your meds etc.   There are meds available to cut down the hot flushes etc ..... @Blossom1961 maybe able to help here!

Having your partner diagnosed with Cancer is a double whammy, too - sadly, I lost my husband nearly 2 years ago to a nasty cancer, so I know how tricky it can be - and it really can muck with your brain too.  xx. That is Great that he is going OK.   Do you 'share' your Onc with him?  We did - so it made it much easier just dealing with the one Onc for both of us xx

Please talk to your Onc about your side effects - I swapped AIs 3 times - the 3rd one being 'the one for me' with less side effects!  

In one of your earlier posts, I mentioned that I am on 'the good oil' - ie Medicinal Cannabis Oil & it has definitely taken the edge off most of my side effects to the meds. It is totally legal to take in various 'strengths', so feel free to ask your Onc about it - and if they are not able to help you with a script - there are plenty of online clinics that can help (some do tele-health appointments bulk billed ...)

As @Afraser says - be kind to yourself.  Try not to take on EVERYONE else's battles .....  Look after yourself first, then you'll be able to look after your hubby & family too xx. Contact http://www.otisfoundation.org.au too - to see if they may be able to give you, your husband and family on a 'holiday' within your state xx. I had one with my husband and brother & SIL at Thredbo & it was a wonderful break.

take care, keep in touch xx

FionaM

Thankyou ladies for your kind words. I'm short of people to talk to - lots of acquaintances, but not people I can sit with and debrief.

I've had a bit of a one-way conversation with the local breast care nurse - who is lovely, but doesn't have much in the way of suggestions except for additional medications. I'm an allied health professional (who has never worked in the cancer space), and I get the feeling that it's assumed that since I have a health background, I can find everything for myself, and locate the people and information I need. However, I don't have the energy, head space or time to do this effectively. She validated the symptoms (which was helpful). I have a somewhat strained relationship with my oncologist, but I'm rural, so there's not a lot of choice locally, and logistically, travelling for another opinion is challenging at the moment. Hubby sees a different onc, but in the same centre.

I'm on my second AI - started with Anastrazole (not good), but I stuck with it for 9 months before politely telling the oncology registrar exactly what he could do with the remaining pills. I was given a 3 week break (which was lovely - it let me know what the pills were doing). They switched me to Letrozole, which to be fair, is better than the Anastrazole, but I'm still worn out with it and its side effects. I can't take Tamoxifen, so that's not an option.

I have spoken to a psychologist. However, she just jumped on the band wagon of recommending I take anti-anxiety medications. It was awkward as I knew her from one of my workplaces. I'm from SW Victoria (Great Ocean Road area), and psychologists are pretty thin on the ground. I stopped just after the reconstruction, and haven't gone back.

I had today off work to take hubby to have a procedure, so tomorrow, I'm in catch up mode at work, and it's unlikely I'll be able to call BCNA in their hours. I'll try for Monday. I think I need to find someone to speak to who knows this space a bit better than the person I saw before, and I'm hoping they will have some contacts.

Thanks for the tips. Being kind to yourself doesn't always come naturally, but I'll give it a crack. It easier to be kind to others, I think.

arpie

@FionaM - That's interesting that Anastrozole was the one badly affecting you ..... as it was the 3rd one that I tried and had less side effects than the other 2!   Letrozole was the worst for me (I lasted 2 months on it)  then I had Exemestane for 6 months before settling on Anastrozole for the last 5 years!

To be honest - I don't think it matters which AI you 'start off with' - as I reckon that FIRST one will always be the one that hits you worst as your body reacts to it, often badly.    

It's a shame that they all just want to push you onto more meds re the aches & pains etc .... 

If you don't have a 'good' relationship with your Onc - please consider changing to another one (eg your hubby's?)  My first Onc was a male chauvinist pig .... I only had 2 appts with him & swapped to a lovely lady Onc, who then looked after both hubby and me - and is still looking after me.  

I'm surprised that ethically, you could see a psych that you are 'known to' ..... I saw one last year & wasn't allowed to see my first choice, as we had a brief association some years ago - but would't be called 'friends' ....so had to see someone else!     There are lots of pyschs who do Telehealth consultations - so being rural shouldn't really prevent you finding someone you 'gel with' xx. 

Being rural and in Allied Health - I am guessing you know about the Travel Compensation scheme where you can claim for petrol and some accommodation costs when you need to travel to bigger centres for your treatment etc?  THis doc covers all states .....  and we have a rural/regional private group where we update info as we find it - feel free to join xx

https://www.ruralhealth.org.au/sites/default/files/publications/pats-fact-sheet-and-guide-2023.pdf

Take care & I hope you can chat with the help line sooner than later 

@Mez_BCNA - is there any other way that Fiona can chat with someone out of work hours?   Ta xx

Mez_BCNA

Hi @FionaM

We apologise that the Helpline team were participating in a staff training day yesterday. This happens only twice yearly and the timing for you when you needed someone on the other end of the phone was unfortunate and we are so glad you connected here, through the Online Network. We really encourage you to call the Helpline again when you are free.

There are several resources I want to share to ensure yourself and anyone else seeking support is aware of:

BCNA Helpline Callback https://www.bcna.org.au/helpline-self-referral-form/
We understand people lead busy lives and may be time poor. To make contacting us easier, you can now request a phone call from our Helpline on a day and time that suits you.  

BCNA's My Journey articles https://myjourney.org.au/

Coping with the emotional effects of breast cancer treatment

Support for you when diagnosed with early breast cancer

Managing the impacts of hormone-blocking therapy for the long-term

Cancer Council 13 11 20 - Talk to a cancer nurse and get the support you need. Available to anyone affected by cancer – those diagnosed, family, friends, and carers. Monday to Friday, 9am-5pm. Victoria Cancer Council can offer offer free, short-term phone counselling to help you and those closest to you work through any cancer related concerns. They also have the Cancer Connect  confidential telephone peer support service that connects someone who has cancer with a specially trained volunteer. Carer Resource:  Caring for Someone with Cancer (Cancer Council)

McGrath Foundation 1800 183 338  - Anyone experiencing breast cancer seeking support can reach out to the free McGrath Breast Care Nurse Telephone Support Line. The line is open Monday – Friday between 9am – 5pm AEST. Pip works Monday to Friday each week. Sally works Thursdays and Fridays each week. You can also leave a message and they’ll get back to you.

Carer Gateway 1800 422 737 - is an Australian Government program providing free services and support for carers. If you care for a family member or friend with disability, a medical condition, mental illness, or who is frail due to age, then Carer Gateway can help you.

24/7 Support 

• Beyond Blue 1300 224 636 - free telephone and online counselling service is open 24/7 for everyone in Australia. No matter who you are, or how you're feeling, reach out to our free counselling services for support
• Lifeline 13 11 14 - Lifeline's crisis support service is available 24/7. Anyone in Australia can speak to a trained Crisis Supporter over the phone, any time of the day or night.

Again, we hope you feel supported by our Online Network community and we look forward to connecting with you. You may also like to join the private Carers Corner Group.

TonyaM

Hi @FionaM, so sorry to hear you’re having such a crappy time of it.It’s hard to keep juggling all those balls isn’t it. My magic wand was a very low dose of Endep 10mg which got me through 4yrs of Tamoxifen. I didn’t have any side effects and it really helped with hot flushes, mood and sleep.I didn’t make it to 5yrs as I was palliative nursing my mum at home and it all got abit much. Luckily I’d retired earlier(I’m a nurse). Your priority is to get yourself feeling ok,even if that means taking a medication holiday till you’re over the acute situation with work and hubby. These bc treatments aren’t easy- I hear your rant and totally understand. xx 

FionaM

Hi Mez, that wasn't supposed to be a dig at BCNA being closed for the day - I just couldn't believe that the two things co-incided! Obviously, Murphy was looking over my shoulder yesterday. I've made lots of use of BCNA's online resources since diagnosis, and the information is valuable - thankyou! 

FionaM

Hi Tonya, yes, I do feel a bit like a juggler at times - that's an apt description! 
I've not read a lot about Endep in these circumstances. I know it's used at a low dose in persistent pain, but haven't seen much about it in regards these symptoms. It sounds like you also had a challenging time looking after a loved one in that time. Our lives can be busy, and they don't stay on hold while we are dealing with the washout of our diagnoses. Thanks for hearing my rant. I'll step off the soapbox now !

Blossom1961

Hi @FionaM So sorry you had to go through this. I will write my experience and you can take it or leave it, whatever feels right to you.

Firstly I was put on to the Menopause After Cancer Clinic at the Royal Womens. It was all done via telehealth. However I will tell you what they did for me and then you can just discuss with your GP. I was having 24 hot flushes every day. Very little sleep and my confidence drop dramatically. I was embarrassed to go out. The MSACC put me on a low dose Citalopram tablet. It made me feel nauseous but dropped my hot flushes to less than eight a day. The nausea was supposed to disappear but it didn't. After two months I chopped the 10mg tablet in half. The nausea eased off and the hot flushes stayed reduced. Win win. However, two months later I had to have my Zoledronic acid shot (I get nauseous with it) so dropped the Citalopram altogether so I would not have two lots of nausea. I planned on taking it again after the Zoledronic settled but my hot flushes were stable at less than eight per day so I have stayed off the Citalopram. That was three months ago. I also get the high anxiety just before and during a hot flush and have not found relief for this. 

My Psych is in Geelong so close enough for you to see however she is happy to do telehealth/phonecalls. She helped me tremendously. I got my metastatic diagnosis at the same time my hubby got a prostate cancer confirmation. We had to support each other whilst coping with our own and each others health issues. It wasn't easy and was a double shock. We scrambled through it but it wasn't easy. If you want the name of my Psych I can message it to you as we are not supposed to use our medical professionals names on the forum. She accepts the mental health care plans so it is cheaper.

Sleeping is important as it helps your body and mind heal. I did a sleep study with Monash University/Peter McCallum centre/Bendigo Health, and this was what they found. Stay away from electronic devices for at least an hour before you go to sleep. Read light hearted material, do book crosswords or jigsaws, do craft, whatever helps you relax but is not screen time. Try to go to sleep the same time each night and wake at approx the same time every morning. When you wake get up and into the natural light for at least twenty minutes. Do not have naps during the day if you can avoid it. Sometimes I struggle to follow these instructions but constantly get back to them as they have helped me.

Hope some of this is helpful.

I am not on AI's as my cancer is hormone negative but have a drug infusion for my cancer every three weeks which has its own side effects. Fortunately my Onco admits the drugs can cause all kinds of issues and she works with me.

Sending big hugs

arpie

@FionaM ... a buddy has just told me that an antihistamine (daily) can reduce/stop hot flushes!!   Her chemist suggested C-zine .... and it is working for her!  Could be worth a 'try' - but put it past your team first!   


take care

FionaM

Thanks for that Arpie, I'll have a look. I'm a little bit wary of antihistamines, as some of them will put me to sleep for 16 hours or more (that has its advantages at times !!) but is probably not what I want right now. If it's one of the non-drowsy ones, it might be worth asking about. Thanks!