Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Mentally down

Janet500
Posted by

Hello i am having weekly chemo since August for recurring TBNC with mets in my lungs.So far everyrhing was shrinking but mentally cant cope anymore just to sit at home and do nothing also my nails are black and blue and something coming out from under them.Dont tell me to ask the nurse or my rubbish onco because they are no use.This chemo is ruining my life also having night sweats so i dont sleep too much.i want quit chemo and go back to work because soon I will be mentally ill.I rather to enjoy how much left without all this suffering.And I used to be so positive.I want to live normal while as I can.

Is there anybody who quit the chemo and just went back to work or normal life without hospital visits?I cant cope with this anymore.

Nicky Nosher
Posted by

Hi Janet

It sounds as though you have been through a lot and it is no wonder that you are down and I think you need some help and support to make the best decision for you. I can only make some suggestions and I hope that they don't sound patronising, as not all of them will be appropriate for your circumstances. Obviously you can stop treatment at any time but it may shorten your lifespan and you need to be sure that you are in the right frame of mind to decide this. Can you talk to your husband about how you are feeling? Can you get counselling through your cancer treatment centre? Have you spoken to your GP? Sometimes they can prescribe medication to lift your mood so you can get out a bit more or give you the energy to get out of the house, do some volunteering or just join a group to socialise a bit. Do you have family or friends nearby? Could you meet your work colleagues after work or go in to visit them for lunch and have a laugh?

I know that you have said that your onco is rubbish but do you know what they have planned for you treatment wise? Is there a chance of a treatment break or a reduction of dose or even a change of treatment? If all of the above is too knackering could your husband act on your behalf and talk to someone to get you some help? I know you said on a previous post that your benefits don't allow you luxuries but what about going to visit old friends or go and stay with someone? A day at the coast?

I found that just getting out of the house and going for a coffee somewhere or a sandwich in the local park helped.

A life lived in fear, is a life half lived.
Nicky
flowerlady
Posted by

Dear Janet500

So sorry you are feeling this way. Chemo is difficult, there are always options, it's weighing up the pros and cons isn't it? If you don't feel supported by your oncologist, can you change to a different one? Sometimes the mental pain is more difficult to bear. Is there another nurse you could speak to? 

Take care. Xx

Flowerlady x
Tinalay
Posted by

Hi

I'm so sorry you're feeling this way. I can't imagine having weekly chemo for such a long period of time and it sounds like it's really taking it's toll on you. I'm just starting this treatment and it's been made clear to me that they can reduce the dose or give me a break at any time. 

I've certainly met people who decide against chemo in favour of a better quality of life, having a break might help to clarify the pros and cons.

I also can't imagine not having faith in your Oncologist and nurse. I met someone in the same position recently, and she's just changed her Oncologist so as said, could you do the same? 

I would call the Macmillan help line for advice. It's definitely worth speaking to your GP about your low mood and lack of sleep because medication may well help with those symtoms.

You've taken a battering physically and emotionally and need to reach out for whatever help and support you can get, but the first step is telling someone how bad you're feeling.

Thinking of you and hoping you'll find a way forward. xx

Tinalay 
PLASTIC
Posted by

I am just making the same decision. Other chemos haven't worked for me this one has sent  me reeling. My life isn't a life so i am stopping. I need to look at alternative  help. I'm on E C Epirubicin +Cyclophosphamide    When i needed help i was told to go to my doctor --- no appointments ---only by telephone.   I need to look for Alternative choices. As soon as i am well enough i will start looking.I know Oncology units are very busy but i am not expecting a cure so why go through this. I feel for you , i told family and friends so everyone understands me. Everyday i wonder if i need to go to A/E. thank god for them i've been twice on other Chemos. This one was strange apart from feeling awful i looked like i had eaten a snowball awful mess in my mouth. 

I wish you well , and will keep looking to see if you are sorted.

C J

Johnty
Posted by

Dear

Dear Janet,  I am so sorry to read you are feeling this way, but providing any decisions you make are based on informed consent then your wishes should be respected. My first step would be to change consultants as I did precisely that and it change my perspective when i finally felt I was being listened to. Then to talk to your general practitioner about maybe having a low dose of antidepressants to raise your mood and make sure your thinking with a clear head and possibly accessing some counselling. This a big decision and it’s only one you can make, and providing due diligence is followed  i personally would respect any conclusion you came to. It’s up to the individual to decide what is an acceptable quality of life but should be done with firm goals and objectives in mind and with good advice from someone who you trust and not off the back of inadequate care from the medical profession, you deserve better. 

best wishes

jane

 “ A trouble shared is a trouble halved “
Janet500
Posted by

Hi Johnty I have changed consultants 3x times they all the same.I am trying to get referred to a different hospital but I dont know if I want to do this anymore.

I want to live normal life and not hospital life and begging for help.Also the money is not enough because my hubby is working he meant to support me.He pays the rent and I pay the bills from the universal credit and we are left with almost  nothing.Since last year August i habent enjoyed anything cant even travel because of the picc line.Just had enough of the treatment.

Janet500
Posted by

Hi Johnty I have changed consultants 3x times they all the same.I am trying to get referred to a different hospital but I dont know if I want to do this anymore.

I want to live normal life and not hospital life and begging for help.Also the money is not enough because my hubby is working he meant to support me.He pays the rent and I pay the bills from the universal credit and we are left with almost  nothing.Since last year August i habent enjoyed anything cant even travel because of the picc line.Just had enough of the treatment.

Janet500
Posted by

Hi Plastic.I was on EC when i had BC 2 years ago.I must admit I had no side effects but this weekly Paclitaxel is too much.I havent been sick or diarrhoea and i eat well but I used to be a very active person.Now i have problem with my arm movement before I had skin rashes like burns but luckily they have gone but mentally i cant cope.Also used to be very positive now I just wish to go back to work earn money and travel or whatever like just not hospital.I cant sleep because i am waking up with sweats.Cancer took everything away from me.I want it back even just for a short time but I want to feel like a human beeing not like a sick person.

Janet500
Posted by

Hi Plastic.I was on EC when i had BC 2 years ago.I must admit I had no side effects but this weekly Paclitaxel is too much.I havent been sick or diarrhoea and i eat well but I used to be a very active person.Now i have problem with my arm movement before I had skin rashes like burns but luckily they have gone but mentally i cant cope.Also used to be very positive now I just wish to go back to work earn money and travel or whatever like just not hospital.I cant sleep because i am waking up with sweats.Cancer took everything away from me.I want it back even just for a short time but I want to feel like a human beeing not like a sick person.

Janet500
Posted by

Hi Tinalay I keep telling my "caring" doctors I am fed up they just keep pushing me.I was misdiagnosed and now I dont know what they want to achieve.Even my husband he is angry I want to stop my treatment.I want to feel like a human beeing even just for a while not like a sick patient.I dont enjoy anything.Cancer took everything away from me - struggling with money,have no sleep,having no sexlife,no travelling.I feel like i am in a prison.I dont think counselling or antidepressant will help me.I hate to take even painkillers.I am only taking them when i am in real pain and had counselling it didnt work either.

PLASTIC
Posted by

 Hi Janet 500    I  had three different chemos non worked. I am pleased i made my decision , just beginning to feel a little better, hope enough to start my changes next week . I have lost 9 days and having to rely on other people for shopping etc. I am an independent person but now i will contact Macmillan for advice on how to use  palliative care when needed. I couldn't get a doc appointment even if i could drive there. I have lovely friends i would prefer to meet socially not when i am needy. My son lives and works abroad we have talked it all through he is in agreement with me, last year he had to come to me so many times--- new regime hopefully i will be able to visit him again. Looking forward to the next 'stage ' however long or short, will be better than it is now.   Its not giving in  i'm still a fighter --look for alternative -- natural medication. C J

Johnty
Posted by

Dear

i have read all your replies and taken on board everything you have said. Have you ever spoken to a specialist palliative care doctor who can explain your options if you decide to stop all active treatment and focus only on symptom control and possibly leave you free to do the things you want regardless of the consequences. Until you have a proper explanation of both options it’s hard to make a informed decision. I understand how having your life restricted so much by treatment can be depressing but I would get a referral to another hospital and give it one more go before making a decision either way as I feel from what you have said your relationship with your current team is colouring your thought processes and you deserve to make a decision with a clear head. I know from experience that not all hospitals are the same and have myself got transferred from one hospital to another when I became unhappy with how my care was being delivered and it did make a difference. Give it some thought, everyone here respects your feelings and we only want you to make the best decision for you and your  husband. 

best wishes

jane

 “ A trouble shared is a trouble halved “
flowerlady
Posted by

Dear Janet500

Only those of us who have been through chemo know the mental anguish that accompanies it. Your wishes and needs are paramount. You know what is best for you. If you need a break, then that needs to be respected. I imagine your husband is scared, however he needs to listen to you. Only you know how you feel.

You must have amazing strength to have done this for so long. Take care, thinking of you

Xx

Flowerlady x
Tinalay
Posted by

You've been through so much, I'm sorry. I went from feeling reasonably well to feeling that my life was consumed by cancer treatment at the beginning of last year when I started oral chemo and had severe side effects. That was not a life worth living.

I did feel I got my life back after a break and then halving the dose. I hope you can find a way to get your life back too, what you're describing would be too much for anyone.

If you can face it, a change of hospital might help, at the very least you need someone who's looking out for you and respecting your wishes. Whatever you decide I hope you'll find something that will give you a chance to feel human again and have another opportunity to enjoy life for as long as possible.

Thinking of you.

xx

Tinalay