My moan out of Desperation.

Life after a breast cancer diagnosis Coping with fear and anxiety
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Posting just incase anyone has any suggestions at all, as I’ve tried everything.

*Trigger warning for anyone already depressed or starting chemotherapy*

I wanted to add a trigger warning because I spent months trawling the internet looking for any positives connected with chemotherapy and I found none. Now I know why. People facing chemo don’t have much of a choice and I don’t want to be the reason someone adds to their fears. I know from experience that people only tend to use these platforms when they’re desperate and that’s why you only tend to find other people’s negative experiences on them so I tend to avoid them as you inevitably always see things you don’t want to see. I know no one can help, but I don’t know what else to do other than write it down, as I don’t have any options left.

I managed through chemotherapy and how I don’t know, but I did and I mostly did it with a smile and positivity. Now, I am utterly depressed. No one can help at all, not family, partner, Psychologist and I plead with people; if you reply, as well meaning as you may be,  please don’t suggest medication, it’s not happening. I have struggled all my life with OCD and as the years went on, extreme anxiety and now panic. (just as a footnote in case anyone thinks medication is the answer for me, I have been prescribed everything in the past: sertraline, fluoxetine, citalopram, paroxetine, propranolol, e.tc e.tc so medication; it’s not happening and makes the situation worse.

I had a month of radiotherapy and the planning scan 5 years ago nearly. It was hard, but I did it, now I don’t know how I did. My Oncologist has delayed the radiotherapy this time as long as he can, because my head refuses to let me undertake it, which means the radiotherapy won’t happen. I felt a week ago like I am having some sort of a breakdown as I can not live with the knowledge that it came back because I didn’t have chemo 5 years ago, and it will likely come back if I don’t have radiotherapy.

I feel sick, can’t concentrate, have constant headaches, and have no interest in anything anymore. I constantly think back to last June when we returned from a bike ride (me having lost weight and had long hair as was happy) only to have an itch under my arm and I felt a lump – again)

I can’t cope with the idea that next time it will be worse, my family tell me this will prevent it (which I doubt, I’m hoping the chemo will have done that and the fact I am not drinking alcohol anymore) and I am so sick of all the discussions and arguments around it.

I keep trying to bounce up from it, but I keep hitting rock bottom over and over. I have one more ‘chance’ to do the planning scan next week and I am so, so depressed, I fear the panic and fear the cancer returning, I fear more treatment, I am wondering if life is worth it knowing what’s more than likely again.

No one can help, if anyone replies, they’ll suggest I ‘need’ psychological help (which I’m receiving, but they’re it’s not helping as I’ve had every intervention I could possibly have had in the past) and I’m a MSc Psychology student myself and I work in Psychological research which makes the situation worse as I know too much. People will suggest I ‘need’ medication… I don’t, I rather go up to sleep and not wake up.

I don’t know what to do, I told my Macmillian nurse I don’t think I’ll ever be happy again. She suggests she thinks I am suffering with PTSD.

My endocrine injection is pending and needs starting sooner rather than later I’d have thought. I don’t know whether to simply skip straight to that without the radiotherapy as you have no idea of the stress which has ensued as a consequence of facing it again.

I am already struggling with the menopause and feel like as I have coped privately all my life if what happens in my head and my body, and I can do that again, what I can’t cope with is the panic and depression around this radio and the planning for it.

I was so positive at the beginning “it’s only come back in my arm as I didn’t have chemo when they suggested it 5 years ago, it’s just one cell which has migrated there and grown as it was fed by something again which came off the original tumour, this time with chemo…. It’ll be gone”.

Now, my mind, body are ruined. My ear hums constantly through stress and migraines, I keep getting migraines where my sight goes, which makes me panic more. This first happened when I was 37, I am now 41 and I am now infertile because of chemotherapy.  I was known all my life for my long hair and my hair hasn’t come back properly, there are large bald patches and I look like a man. My face is old and looks awful, lined and red like a beetroot and missing hair and I am changed beyond belief. My nails are falling off one by one and hurt all the time.

To make the situation worse they found something on my back last year which they ‘didn’t think was cancer related’ but wanted it following up, but I couldn’t have the scan to do so again. They put me in a PET scanner and when I panicked, they couldn’t get me out… I still have nightmares about it. 

I know what the radiotherapy planning scan involves, the machine they use, I just can’t face anymore. After the PET scan incident, they helped me as I shook and cried constantly to go through a normal CT scanner facing down, but I can’t do it again.

I consider myself a fairly ‘nice’ person. I care about people and animals and have always tried to help people, but hardly anyone has contacted me throughout all this treatment, no one cares. I have become so bitter about them all. I find myself feeling so jealous and bitter that I had to go through mental health problems all my life, then this TWICE and now it’s stopping me having further treatment, and many people (the 7 in 8 who don’t get it) will continue on with their lives with perfect skin, hair, fertility and minds - NEVER having to know what any of this was like not caring that I have. Don’t get me wrong there’s always someone worse off than yourself - but right now I feel like that person people refer to when they quote that.

I panic now about the most ridiculous of things, I am wondering if any of this was worth it and I honestly don’t know what to do - hence this post. It may be my last option.

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I am sorry to read you are going through such a difficult time.

You write that no one cares about your diagnosis and treatment. It may feel like this some days, but please know there are many people who care. The people on this Forum care - we’re here to support each other through the hard times and the good, and the breast care nurses on our support line care too. You can reach us on freephone 0808 800 6000 if you’d like to talk anything through. While our support line is closed until Tuesday for Easter weekend, Macmillan’s support line on freephone 0808 808 00 00 will be open as usual.

Please never think twice about calling - we are here to help.

I’d also like to mention the Samaritans, who are on call to support and to listen 24 hrs/day. You can reach them on 116 123: www.samaritans.org/how-we-can-help/contact-samaritan/talk-us-phone/

Sending our warmest and most positive energy your way

Bernard

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Hi Louisa 

Im sorry you’re feeling so bad.

I’ve had primary BC 3 times 2012, 2018, 2020… its left me with a lot of health anxiety…mostly now I manage to get thru the days without thinking about BC …but its never far from the surface …I can’t dwell on it though…otherwise I go to dark places…and 2 years on from my last diagnosis I actually see myself as 'lucky, as mad as that sounds… thats all the cancers have been diagnosed early …I don’t have any answers for you…i wish I did…but I wish you well … I really do 

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Hi Louisa

I just want to reach out of the screen and give you a big hug. Yes, you are in a depression and yes it may be PSTD - but labels don’t change how you feel. You are completely overwhelmed. What I say next may upset you but I need to say it. I have suffered with GAD and panic disorder ever since adolescence. That’s 56 years of it. I’ve have OCD, PTSD, agoraphobia, emetophobia, you name it, all diagnosed and attempted to treat. I did find an SSRI you didnt mention (agomelatine) which helped the anxiety a bit and has no side effects but generally my life was crap. Loving husband, couldn’t have kids, couldn’t travel (agoraphobia), couldn’t go out for meals (eating disorder) blah blah blah. Then I got diagnosed with breast cancer, had my mastectomy and was told I had to have chemo. I went into meltdown.

As you say, we have no choice. We do what we have to do and, with help (lorazepam before each chemo - now I know why addicts love it - you just feel normal, like nothing will faze you) and I got through. At the core of all my mental health problems is a fear of vomiting so you can imagine how terrified I was. I did it. I wasn’t sick, I felt like a zombie most of the time and I did it. Radiotherapy after chemo left me with neuropathic pain and I was prescribed pregabalin for the pain. Useless - but I took it and haven’t had a panic attack for two years. My anxiety about vomiting is still here but the general level of anxiety is amazingly low.

Last Spring, two years after completing treatment and not ringing that bell, I was diagnosed with Stage 4 bc and it’s triple negative, so the prognosis isn’t brilliant. But somehow, I just can’t bring myself to think much about it. SSRI? Pregabalin? I don’t think so. In fact I’m weaning myself off agomelatine slowly. The secondary diagnosis almost seemed inevitable, the way my life has gone, and so I’ve never got upset about it (though I’m not keen on lifelong chemo), I kind of shrug my shoulders and know I only have two options, one of which my husband would never forgive me for taking - refusing treatment and opting for palliative care. Yes, it’s not fair - hasn’t my life been crap enough? Yes it’s scary but I haven’t yet been faced with the risk of vomiting, so I just get on with it. Well, good for me!

I said it would upset (annoy?) you - it’s like getting cancer has actually reduced my anxiety while yours is overwhelming you. I’m not daft - I’m pretty sure it’s the pregabalin that has done it. I guess my message is you’ve got this far, why give up in despair? Medication hasn’t helped you - but you haven’t tried everything. Somewhere, there’s your magic bullet, as pregabalin seems to be mine. You panic over “ridiculous things”. Come on, you’re a psychology student. You know the ‘thing’ isnt the problem. Any panic is perfectly valid and you are being cruel to yourself in not accepting that your panic attacks are valid. But they become your default position and that is a living hell. I know how debilitating panic is - and the anticipation of panic - and I know you can’t do this alone. Fear can be completely incapacitating - I had 6 months when I could barely leave my bedroom. I’ve been there and I wouldn’t want my worst enemy (one exception) to go through that.

You know that treatment is inevitable and treatment is likely to be successful so it’s worth it. But for you it has become terrifying. So decide - do you want the treatment or do you want to opt out and face Stage 4? I’m guessing the latter isn’t appealing. So how do you get through this treatment? From my experience, I’d suggest that first you need to make sure your oncologist and breast care team know what your state of mind is and your fear about the treatment. You definitely are not the first patient feeling as you do. Second, you need to ask for 2mg of lorazepam to get you through that radiotherapy planning session (mine were issued 2 tablets at a time). It does work - anything to get you through something you’ve turned into a torturous nightmare. Then you’ll know you can do it, with or without lorazepam. Of course, you may have tried it, in which case I’m wasting my insomnia on a futile attempt to reach out to someone suffering my idea of hell.

I really feel for you. You are almost literally at the end of your tether. But please don’t write us off as people who only come here out of desperation (I come because I hope I can do some good occasionally). Many of us are seeking camaraderie as much as advice. Many of us have been where you are now - but we’re still here so, like it or not, we probably do know what we’re talking about. That’s why the forums have worked for so long. You’ve reached out (not an easy thing to do) - some of us have reached back. I hope somewhere in one of the replies you have, you’ll find a suggestion you can work on to get you through this dilemma.

Take care.

Jan x

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Hi sweetie,

don’t go knocking yourself it ain’t worth it and if you want pity you won’t get it any where honest, so give your self a kick up the bum and start and sort yourself out, ok work out what health supplements you need like vit D3 vit BComplex  vit C & Rosehip  womens Bio Complex from nutravita and L- Carnitine Complex. Ok all of these are of the Nutravita I bought from Amazon ok not cheap took the chance and bingo I have more energy etc my digestive system is better and I’m starting to feel good.

I also take my normal meds as I have a lot of underlining conditions but these together with my depression tablets citalopram I’m getting there, just the sleepless nights to sort but I know I will get there.

ok most of us have chatted and helped each other through a lot in this chat we are all going down the same path but we have all different kind of cancers so be thankful your alive, yes a few peeps have not made it and died young, I hated having to have an op, I hated radiotherapy I almost gave up after the second session I use to cry every night after I had the treatment I was in so much pain as I had cancer in my breast and lymph nodes, but like I said before I also have other illnesses to deal with, so I was determined to get through this and with the help of my GP & Hospital Nurses I kept going, my husband was so stressed and worried about me so instead of talking to me he would work hard then he would do other stuff we spent most nights apart that was heart breaking but I had to tell him to acknowledge me about what I was feeling and what he was feeling even though it was me who had the op etc he also had to try and live with all that was happening to me as well so we really got chatting and slowly sorted it.

there is so much you can do find something to keep your mind busy try anything and also when your partner is not working now the weather is nice do something together you both have to try you are one strong woman after what you have been through and yes we all worry will it come back or not we don’t know but to take care of ourselves and be thankful the we are still alive just think before you leap.

Love CATT57

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I am sorry you feel so bad. I have had breast cancer before and I am absolutely terrified of pain, hospitals and the whole indifference of everyone about how I feel. At least that’s my viewpoint. It’s horrible giving my body over to someone else and the decisions that seem to be made by other people, complete strangers to me. I find it difficult to trust anyone in a white coat. This may be due to my mother having postnatal psychosis when I was born and for several years after, culminating in her ending up in the Maudsley south london locked up having electro convulsive therapy. Eventually she returned home but not until we’d been abused by my grandmother who hated our mother. That was 1958 but I am still aware of the impact this had on my view of hospitals and maybe life in general. 

I think you deserve to live and to have the best life you can and if this involves enduring something you imagine you can’t endure - you need help. Insist on help and say you want to survive but you can’t do it without sedatives, complete anaesthesia, hypnosis or whatever it takes. I do find talking to someone who is listening really helped me recently. I was carted off by ambulance to a place called the Haven next to my hospital when I threatened suicide one bank holiday weekend. They said I could stay there and it made me feel much better. In fact I went home instead at about 12.30 am Saturday morning. Keep in touch my friend.,. Seagulls