Mental health during breast cancer

Hi HappyHope

I'm sending you a big hug too. I found someone yesterday that could provide counselling but have been warned that this will be months away. I'm not sure I could wait that long but will have to. Seems many of us need counselling but not enough counsellors to meet demand. It's good that you have found someone to help you. Good idea too about the walking group.

I bought the book recently by Liz O'Riordan 'The Complete Guide...' and wished that I had seen and read it at the start of this dreadful experience as it would have prepared me for what was to come. I also follow her on socials but will also listen to her podcasts now. 

I got the call today about having a CT planning scan for Monday (today being Friday) so am feeling overwhelmed again - I just get my head around one thing then the next comes along. Strange but I didn't feel like this about Chemotherapy I just went with the flow. I suppose I got used to the regular visits  etc. and my chemo team were so lovely, even though the side effects were hard. The thought of yet again exposing my breasts to complete strangers in close proximity is freaking me out and I can't resolve it. I'm not concerned about the machines etc.

As I said in an earlier post if I had been able to talk to my oncologist about Predict and radiotherapy at my last meeting, it would have put my mind at rest but she didn't meet with me just sent a trainee (doctor??) to get me to sign the consent forms. As I am over 8 weeks wait already she wanted me to sign them there and then.  I have no way of getting in touch with her now to ask her the questions I have.

I think after all the months of treatment with looong gaps between, especially between end of chemo and surgery which was 3 months, its all built up and has now come to a head.  

I think that the mental health of cancer patients is seriously overlooked which I think could lead to poorer outcomes at least in my case. 

You are definitely not alone in this. Sending you a big cwtch for happier times soon xx 

There seem to be a few comments in this thread about not being able to access professionals to find out questions or information et cetera.

Breast Cancer Now forum has a facility to ask a nurse.

also you can call a Maggies Centre.

it may be worth finding out who your oncologist’s secretary is and ringing them to find out if you can speak to the oncologist.

or the breast care nurses at your treatment centre are extremely helpful.

I appreciate that it can be hard to find out contact names and numbers for people, but it seems awful that on top of everything else anybody should be experiencing extra stress by not being able to get information or answers about their own situation as a service user.

of course MacMillan also have a phone line which, even if they cannot answer your specific question, may be able to point you in the right direction.

you need drive and resilience to get to the bottom of these things don’t you? And sometimes we don’t feel we have that which makes it doubly hard

sending support to everybody who is in this situation xx

in case it helps, I found the radiotherapy planning meeting to be very helpful. I met with a specialist breast radiotherapy nurse who was absolutely lovely and could answer all my questions. 
she also gave me the MacMillan booklet about it, which should be available to download or browse on the MacMillan website.

I hope you get answers soon. It sounds like you will x

I know you have said you have only seen your BCN once but she can refer you for help.

Ring her, tell how you feel and ask for you be referred. I had an appointment with the consultant 15th August, my bcn saw the state I was in and referred me. I received a phone call on bank holiday Monday to arrange the appointment and I'm seeing someone next Tuesday. Less than a month after referral.

Also contact Breast  cancer now and ask about their Moving Forward course. I'm booked on one in November.

Good luck 

Sue xx

Hi Blueskythinking,

Sorry for not answering sooner. I know you have your scan today and have concerns about exposing yourself to strangers, which I can totally relate to. I cope by removing myself from what is happening. I don't look at what they are looking at and tell myself that they are there to help me, not to judge me or have any other type of thought. I'm 62, a bit overweight and my boobs have seen better days. I just want to get the best treatment possible so I tell myself it's all good and it'll be OK. To be honest I don't care what they think, I just want them to do the best they possibly can.

I'll be thinking of you today and sending some strong, positive, confident vibes. You can do it!

Oh I ordered the book... thank you for the tip off regarding reading it early on in diagnosis. I didn't want to freak myself out but I've taken your advice and am looking forward to reading it.

Big hugs xxx

Thanks Hedera. My nearest Maggies is 50 miles away but I will see if I can find time to get to one. I definitely need to speak to people who understand. There is so much information out there about the physical stuff - side effects etc whereas the mental stuff is just as hard.

Regarding BC nurse and counselling I've given up on that score. When I rang them and said about counselling I was told that reflexology was possible as this was a good thing to have. Needless to say that one took my breath away !

I've sent an email to my oncologist with my questions but am not expecting a response.

Yes I thought a Moving Forward course would be a positive thing to do .. just got to get past this difficult bit first .xx   

Hi Sue

I am glad that you have found someone to help you. Unfortunately just as before, my BC nurse was totally unhelpful and recommended reflexology which I will try at some point but its not counselling !  I will try Moving Forward too.

Good luck with your appointment next Tuesday - hope it goes well. 

xx

Hi HappyHope

Your post could not have come at a better time. The urge I have to run and run has grown stronger the closer I get to 3 pm today.  I dream about running away from hospitals a lot whereas before all this I would happily turn up for screenings etc . I felt so totally different when I fractured my spine in my early 20s and am not sure why the change.

I know that I have to have the scan and radiotherapy although I still do not know why as I have clear margins, clear nodes and clear nipple (lesion was behind and next to my nipple) so am still mystified why I have to have radiotherapy at all. 

Maybe my oncologist will respond to the email I sent asking for clarity but I'm not holding my breath on that one.

Removing myself mentally might help me so if I do go, I will try that ..

Thank you

xx 

Hi Blueskythinking,

Hope you're OK and that everything was manageable yesterday.

Hugs

HappyHope 

Hi HappyHope

Unfortunately it was not as plain sailing as I hoped. This is just my experience and as we know in cancer treatment, everyone has things they find harder than others.

One of the radiographers was fab. She was kind, very patient and compassionate realising that I was finding it really hard. The other radiographer was condescending and sarcastic. I stuck up for myself which didn't go down well.

I was freezing with a capital F having little head hair did not help and with the air conditioning on for the machine, I was freezing and started to shake which made the horrible one, get cross with me. Obviously lying with my breasts exposed and arms in the air made me feel very vulnerable. Medical staff should really learn or be trained in common humanity and how to make allowances for those who are in new and stressful situations. The appointment started over an hour later than planned due to emergencies which didn't help.

Here's looking forward (not) to next week when it starts for real. 

Hope you are ok. Thank you for your hugs and thinking of me xx