Justbwant to add my story to your last message and the advice your oncology nurse gave you. Hopefully that will help others in the same position as us.
I wish I had been told the same. I have been on anti depressants since March and I feel so much better. I realise now that I should have been on them sooner and when I thought I was coping mentally I wasn't (hind sight and all that). Anyhow my main message is that my last MRI showed my SBC in bones stable but it also showed I'd had a small stroke in my frontal right lobe. I am now on medication for this (including citalopram) and have taken it as a warning sign to listen to my body more going forward. I consider myself sooo luck that I have not had any long lasting physical effects from this. I have taken up yoga too and am trying to be kind to myself more and put myself first which everyone was always telling me to do especially since my secondary diagnosis.
I hope my lesson learned can help anyone else out there struggling mentally with their diagnosis and also with what's happening in the wider world at the moment
Lots of lovexxx
After 12 years my BC returned. I immediately went on a anti-depresant. When I felt like you are feeling I called a friend of mine who is an oncology nurse. I explained to her almost word for word as you did about feeling like I needed something else. She told me that my brain was wanting or telling me it needed more of something to calm me down- in other words more of the drug I was taking or some other drug at the same or higher dosage. 😏
i am probably not putting this very well but Sophie herself has lived with stage 4 lung cancer for a few years and it's about her attitude to the diagnosis and I can honestly say it has helped change my mindset. You can access her on Facebook I believe (I am not on there myself) but I did google her before I bought the book and there are clips of her talking about how she deals with things even that helped me when my first went wobbly. Her book certainly boosted me and made me see things differently. personally a lot of things she has said have resonated with me. I really hope I am not over selling this but I have found it more useful than any other material I have read since having SBC. Her blog is sophiesabbage.com/blog. I haven't actually looked at that as am an internet novice .
What tablets were you on and now what you starting to go on the gp said it was better to increase my dose of citalopram which I already increased after diagnosis to 30 and now up to highest 40mg I also told her I been referred therepy and I understand where your coming from dealing with it I was on forum and they mentioned death and another one prognosis I never have asked that and suddenly hut me all over again I had csncer its strange when hits you in strangest places another place hit me was when got sick note and said breast csncer and I got shakey. I I'm hoping therepy will help and I actually deal with this disease xxx
Can I firstly thank you Caz for starting this thread. Your timing was so right for me. I’ve had a very difficult 2 years since initial de novo diagnosis. I’m currently stable, with no active cells and on Denusomab and Letrozole. I thought mentally that I’d dealt with everything that I had gone through and had thrown at me, but I realise these past few days that I haven’t even started 🙄
I was already on anti-depressants for PTSD and to be fair they have got me this far, but having read this thread, plus others on similar topics, I have decided that they are not enough and I need more help. I went to the GP yesterday and asked for a change in medication. So today I start to taper off my existing one, and start the new one. Scary but it seems very controlled and I’ll have a review in 3 weeks to see how I’m doing.
I had 9 months of counselling, finishing earlier this year but I’m not sure I want to revisit it again at the moment. However this remains an option as I can self refer.
Not sure why I’m posting! But guess what I’m saying is how amazing this forum is, how relevant, how magical that sometimes posts just appear at the right time, and make us realise we are not alone. So thank you to everyone who has contributed because you have helped me. Xx
Apologies..it's me again. Can I just add a recommendation for a book I have recently read and have found very useful especially during my low moods when I try to change my mindset to a more positive one. Sorry if it's been mentioned before. It's the cancer whisperer by Sophie Sabbage.
its well worth a read and I am not on commission!!!
Thank you AnnieJ and Cazzy to for your responses. Sorry but I am a bit rubbish with this site as wasn't able to reread your replies when I responded to Nicky. I do appreciate your comments as it helps me knowing that someone out there took time to reply and I am not alone.
Wishing you you both all the best.xxx
Thank you so much for your honest response. You have certainly been through the mill with this...to say the lest. I am blaming my mental issues on the fact I had a virus recently which caused me to become anxious and I too was thinking I was heading to the end of my journey so really scared myself. It is good to hear that you have managed to turn your thoughts around. I have a scan in January which I hope will alleviate all the current angst I have stored up. I am constantly looking for ways to get back to my normal self . I think that is probably added to my problems. However, on the positive side it has led to me having more honest conversation with my partner who I know I have tried to shield from this. I feel lucky he has stuck by me all this time since my first diagnoses with primary 19 years ago. This disease is awful as it gets at you in so many ways. I have constantly tried to have my normal life in one lane and the cancer life running alongside meeting up occasionally. Perhaps this hasn't been the best way to go although I have had counselling and been told I have learnt this behaviour over the 19 years.
once again, thank you for your response. I am not sure if my reply makes sense but having just read your message wanted to reply straight away as it has encouraged me. I now try to live day to day as mindfulness seems a good option.
Here's to all us strong ladies dealing with this. Especially at this time of year when it's all about Christmas.
Hi cool girl/karen
I don’t mind you asking!
I’ve lived with SBC for over 11 years now and the shock of the initial diagnosis was so huge, something I had never expected to progress to after a very encouraging primary treatment and prognosis. I really felt like my time had come but obviously got on with treatment as we all do. I felt more reassured once I knew the treatment was working and the scans started coming back as stable. I didn’t have any further progression for nearly5 years and got lulled into a false sense of security, so when I then had a scan result that showed my liver was now involved it really threw me although I was aware that it’s unusual to have just the one bone met that I had (and had hoped I’d be in that lucky, very small minority which doesn’t have any further progression or in fact had been misdiagnosed). So although I accepted that it had spread what got me was that I had developed heart failure from my chemo 5 years previous so couldn’t have the treatment I should have had. That really did spiral me downwards as up until then I was aware I was on the correct treatment, a lot of that having been learnt from the lovely ladies on this forum who were further along the SBC path and are sadly no longer with us. I was very close to clinical depression then and did have some counselling but wasn’t happy with the person or type of therapy being given. In fact I felt so bad physically and mentally (from both the heart failure and the shock of progression) I honestly through I would be dead in weeks and had to get my family to face up to the facts. This was so hard but it was a great relief to have it all said in the open and not hidden or not discussed as we had been doing. There were lots of tears from all of us it it did make us all understand that this awful disease was going to beat me at some point. Funnily enough this did help me realised my own mortality and as we, as a family, discussed we are all going to die at some point, it’s just that I will be sooner than we would all hope. About the same time was getting results back to show that the treatment was working which was a huge relief and, for me, quite unexpected. I also had a fab oncologist at the time who got me referred to the top dog for my heart condition who specialises in cardio-oncology. After a few months of brilliant care and a couple of very intensive procedures my heart was as good as new and I knew I could now cope with further more aggressive treatments if I needed to which again helped hugely with my overall outlook.
Since this time our family motto has been Carpe Diem - seize the day- and we have continued to do that. I don’t sweat the small stuff and I do accept that I am not going to beat this cr@p situation/disease/condition whatever you want to call it. But in the meantime I have made sure I enjoy every day - after all none of us know what’s around the corner.
Wow, that’s probably more infothan you bargained for!
Hi cool girl
How you keeping I'm actually called Cazzy heh.
Ive currently on anti depressants and hsve been since 2013 but got diagnosed June this year. It is very tough journey sbc and tbh I'm struggling with it took monrh after till broke down I still think I'm in denial like wise with my mums condition as she got diagnosed with thyroid cancer
Since diagnosis I've had my medication upped had anxiety issues mini attacks when going out as such referred hypnotherapy by mscmillan nurse which did help but unfortunately while stuff been going on with mum not had any appointments there been off occasions in which I've had have had to have lorazpam settle me sleep or one occasion sleeping tablet. I have since then spoke to macmillan again more more or less at her and she thinks it'd now I be referred therepy and tbh been long time coming even before diagnosis and I'm anxious about going I now upped my anti depressants now to biggest dose I can go. I also take pre gablin for pain amongst other stuff I've been fortunate with side effects of my ssri as just felt sick initally but I have Le taking me while switch off which I'm going to see I'd sleep effected xxx
Hi Coolgirl, what a great response from Nicky, and what a great girl you are for being resilient for so long. I wonder if there has been any changes in your life which has knocked you off course, so to speak. It certainly doesn’t take much for me to regress slightly. I have to hold tight to all the little tricks my psychotherapist gave me. Anti depressants certainly didn’t work for me. On the smallest dosage I was like a zombie. Physical activity is my drug of choice. Before you get 😜 excited, I’m 73, overweight and slow moving. Swimming, aqua aerobics and TaiChi is my absolute limit! 🥴. Hey, whatever gets us through the day. 😘
Hi Jan, thank you so much for your useful response. I will discuss it with my gp nurse next time I see her. I really don't want to create more issues s/e for myself which is what is worrying me.
Nicky I would be interested to know how you've coped over the years, if you don't mind me asking. I have valued your comments over the years I have dealt with SBC. Thank you.
I just wanted to say what a lovely reply you sent, and very useful advice for anyone struggling with these issues not just coolgirl. Another little nugget of information for us all to store away which is what makes this forum so useful as it has so many different responses from different ladies (generally, although a few men as well) about different issues. I hope this doesn’t sound patronising I just thought it was a really nice response.
Your mental wellbeing is essential to your ability to live with your illness and carry on with the life you choose to live. Sleeping tablets are only a short-term solution, as are benzodiazepines like diazepam. Anti-depressants like SSRIs are a longer term solution but, like most medications, everyone reacts differently. What works for one person makes another one ill. The term anti-depressant is a bit of a misnomer in that many of them are used to treat anxiety and other MH conditions now, very successfully.
I’ve worked my way through most SSRIs and struggled with side effects which spoil the quality of life. However, I eventually found one with very few side effects and my life is a lot better. It’s even better since my cancer treatments finished as I was left with neuropathic pain - so my GP prescribed pregabalin for that (side effect - measurable improvement in mood and absence of deep-seated anxiety!). My advice would be to go back and discuss anti-depressants or pregabalin for treatment of anxiety. Discuss potential side effects and what is acceptable (or not) to you, given your condition. If you dare, ignore instructions and start with a very small dose, increasing it steadily till you reach the recommended dose. Then wait and see. If it doesn’t help, ask to try another...and another... till you find the right one for you. You may be lucky first go.
Too often there’s a stigma attached to SSRIs. Weird when you think about how we allow all these poisons to pump through us to deal with a physical health issue, but feel embarrassed or weak for turning to a medical solution for our mental health. Both are of equal importance in my opinion. Go for it. It sounds to me you’ve been doing an astounding job so far! Best of luck,
hi everyone, I could really do with your advice or comments. I have lived with SBC for nearly 7 years and up until now feel I have managed well mentally(holding down my job three days a week). However I have just recently started to feel anxious. I think it was a result of a recent virus I had. I have seen my GP nurse and discussed anti depressants . Initially I was given sleeping tablets which seemed to work as my brain switched off so I got a decent nights sleep which made me feel better. I am not sure if yi have got used to these but feel I need something more. Up to now I have managed things with counselling, good friends and family to talk to plus exercise but I now feel I have moved on a stage mentally.
I would really appreciate any comments.
Thank you so much