Don't know where to turn

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I had a lumpectomy last April , followed by 6 months chemo and then radiotherapy.  I am 46 so the tamoxifen and zolodex have put me into menopause. 

My mental health is terrible, I was on anti-depressants, sertraline but had to change cos it wasn't doing anything. The GP put me on Fluoxitine which I have had to stop as the tablets have a reaction against each other and now the oncologist is saying I can't take any other anti-depressants due to the cancer meds. 

Today I asked about taking magnesium,  sage and tumeric as I have seen a lot about these. But nope, can't take them either. 

The mental health team have me on a waiting list, high priority cos of my job and ptsd and the waiting list is a year minimum. 

My partner doesn't understand why I am the way I am. I am in constant agony with bone pain now with the meds, have insomnia, horrific fatigue, headaches, hot sweats, neuropathy, brain fog, temper issues and my whole world feels like it's collapsing round my ears. 

I don't know where to turn now and no.one seems to care anymore. 

Does anyone have any suggestions to make my life even a tiny bit better, before I just decide enough is enough cos it's not far off. 

Sob

  • Hi Trucker777,


    I had a lumpectomy just over two months ago and two lymph nodes removed, now awaiting the results of further biopsies and radiotherapy and I’m on letrozole. I know yours is somewhat different to mine and I’m so sorry to learn you are suffering like this. The meds for cancer are well known for causing joint pain and things like osteoporosis, I have always taken D3 tablets for quite a while and they really help with this  and my Doctor at the hospital says it’s alright to continue this. She also offered me a bone density scan, which I am having on the 28th June, thus rules out any kind of bone trouble and might be a great help to you. I can also speak to my breast cancer nurses at anytime, who have been amazing, please reach out to them - never feel ashamed or afraid to ask for help, certainly not in these circumstances.

    You have made the first big step by finding the Macmillan site, also do visit your nearest Macmillan centre, a list is on here, or ring them on 0808 808 0000, they are superbly helpful and give you lots of great info, do walks, talks people who can help with medical issues, benefits, energy bills and lots more. Please also get a good support structure in place, family, friends, good work colleagues, I’ve lived on my own for nigh on forty years, but realised you can’t do this on your own.  Maybe, you can go to the centre with your husband, I think this will be greatly beneficial to him as well and will help him to understand more. I also go for a short walk every day (British weather permitting) and do a daily diary, this is mega helpful, as it gets everything off your chest and out of your system. It is important during the day to keep yourself occupied, hobbies, interests etc., it stops you from dwelling on what is going on. You may also find it beneficial to listen to a meditation podcast, they really help you to relax especially when you are trying to get to sleep. I use one called ‘Go Gently’ by Christine Elizabeth Smith, it does a lot for me.

    I know it’s hard sometimes, but try and keep as positive as you possibly can, have positive people around you and dump the negativity, above all, be kind to yourself - I promise you, you will get through this. You are never alone and can always come and chat to us shower in here.

    Take care and big hugs.xxx

     

  • Hi   this sounds really rough and I hope you can get the GP and Oncologist to agree on a combination of meds that work for you.   Have you tried having a chat with the lovely,folks here at Macmillan?   They offer some counselling support which might help a little and they might also have some ideas to ask your medical team on the medication.   You can call them on 0800 808 0000 to have a chat.

    And do keep talking on here, there is so much support, I often think of it as “the kindness of strangers” and sometimes it is just good to know there are others with similar challenges to talk to. Best wishes 

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  • Hi bobbybabe2, 

    Thank you for your reply.  It's nice to have somewhere that you can just say how you are feeling and not be judged in anyway. 

    It is amazing how many different ways they have to treat similar things. 

    I know the meds are bad for bone pain and side effects , I just didn't realise that I am limited to no other supplements to help in any way. 

    I will call the breast care nurses about the D3 tablets and see what they say. Thank you for the recommendation.  I will also ask about a bone scan. I have always have alot of muscle and strength and now I have nothing and I am scared that won't come back! 

    I will also make a trip to maggies and see if I can just speak to someone there. 

    Even typing on here makes me feel better cos I know I am not alone. 

    I did call Macmilian line at the start but not done that for a while so might give it a try. 

    I am struggling with support round me, I have been off work for over a year now and I work in an office with 30 boys and me! I have lost that support now for sure and I don't want my family to know how bad it has actually got. 

    My partner is not supportive now and is always on my case about being lazy, lying in my bed feeling sorry for myself. I know he is trying to push me through but it's so hard and this is just not me.

    This is all new to me but I am definitely going to interact more in this support group. 

    Thanks for taking the time to reply. 

    Big hugs for u too! X

  • Hi irishgirl16, 

    Thank you for your message. I am new to all this and didn't realise there was support like this avaliable. 

    I hope my GP and oncologist can sort something out but at the moment I am not hopeful. I can't get an appointment with the GP and the breast care nurses have said give the meds another while to see if they settle. Then they might arrange an appointment with the oncologist. I don't know how to help get my mental health on track without tablets or help from the GP but they won't and can't help.

    I will go and give the medical team at macmillans a call and see if they can help. 

    Thanks again.x

  • Hi, Macmillan offer 6 free counselling sessions, possibly up to 12. Also, Maggie's centres have appointments to talk. I hope that you can get some help x

  • Hi Trucker777,

    No problem, anytime, we’re all in this together.xxx

  • Hi klf, 

    Thank you for the advice. I will get the weekend over with and give them a call.

    Thanks x

  • Hi

    We're the same age although slightly different treatment path. I have been on an anti-depressant for anxiety for a number years prior to cancer. We had the same issue with the use of tamoxifen and duloxatine. I tried a different drug and lasted two days. Very bad reaction including sobbing in hospital room for 4hrs. Decided not the right drug for me. We're holding off taking the hormone therapy but we have discussed going straight to letrozole as an alternative as there are no contraindications with that one. It's normally given to post menopausal women. I'm weighing up and trying to do more research before deciding what to do. I still have another 5 cycles of chemo. But i've done 25... so home stretch.

    hope they fine a solution for you. Macmillan offer counselling services which may help you in the interim.

    LkM

  • Sorry to read this, it sounds tough.

    On the drugs - a lot of other drugs interfere with tamoxifen so wondering whether you can ask to be switched to an aromatase inhibiter instead? I'm on zoladex and exemestane and have been able to take a low dose fluoxetine, which is really taking the edge off mood swings. I feel more like myself again.

  • Hi there, I just wanted to check in and say hi now that another week has started. Hope you're doing ok x

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