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.

Finding things hard

Dance in the rain
Posted by

Everyone on here seems so much stronger than me.  I always thought I was a strong character but this has defeated my strength.  Had my second lot of treatment put back o. Friday due to no too low or too high oxygen too low.  

I am so low I just wonder at times if it would be better to go quickly.  Im making everyone so sad at least if I leave them they can start to grieve and recover.  Whilst I’m here I’m just bringing everyone down.  

Sorry this post is so depressing but I just can’t help it 

flowerlady
Posted by

I don't feel strong. Every day I weep or wonder why, or just hate my pointless existence. But then some days I think I will be cured or live quite long and achieve things. I finished my part time degree this year but feel no great sense of achievement yet.

I had started my own business arranging flowers, I delivered bouquets on the morning of my PET scan. Now I do it as a hobby. I don't understand why I had all these plans to get on with, which are now in shreds.

I am not really sure what I am trying to say to be honest, other than we are all human, trying to deal with something that no one can prepare for. We cope however we can. Your post didn't bring me down, I think I understand how you are feeling and I want you to know that I care, we all care.

Xx

Flowerlady x
ownedbystaffies
Posted by

Hi Dance in the Rain,

There is no one stronger or weaker, we are just at different points at any one time. You are having a bad time, and it is so disappointing to have treatment cancelled, and I guess that blood results mean you were feeling physically low anyway. The people around you will be sad to see you sad, but one thing I can guarantee is that they dont want you to not be here. Sometimes, forget all the talk of positivity and "fight", just accept that now feels bad, and tomorrow may feel better, and there is no shame in feeling whatever you are feeling. Most of us on this forum can identify with what you are saying and there is a saying "the more personal, the more universal", and I am sure you echo what many of us feel in the well of despair we all enter at times. But, hopefully, we find a way out and back into the light. I sincerely hope you do too, and remember people love you.

daloni
Posted by

Hi

I am so sad to see you’re feeling so down. We all have our down days and this is yours. I know I’ve certainly felt that it might be better to just go quickly as I’m bringing everyone down. I also know these feelings pass. 
I think it’s easy to forget that treatment brings us down not just physically but also mentally and that there are physical reasons for this. I remember watching a fascinating Ted Talk some years ago about the myth that our brains stop growing. It suggested that there is an area of the brain known as the hippocampus that governs our sense of well-being and how the cells in this area renew themselves. If this turnover of cells stops, it affects our sense of well-being. And guess what? Chemo stops cell renewal. Add in low oxygen in your blood and no wonder you feel so low. For me, this understanding of the impact of chemo on my brain helped and helps me through these down days. 
I am told that I’m strong. I am not really sure what that means or what it looks like to other people. I do put a lot of effort into trying to live each day and it’s not always easy. Three good things helps me as does having things to look forward to, no matter how small. 
It is normal and ok to feel the way you do (or did when you wrote this). If you find that it doesn’t pass then it’s time to speak to your doctor, either your GP or your oncologist, to ask for some professional help. 
I am sending you lots of love and a big virtual hug 

xxx

anndanv
Posted by

Hi Dance in the Rain, I am so sorry you are feeling like this just now and hopefully it will pass! Never say sorry to this group as we have an understanding of how you are feeling and how quickly moods can change. It's exactly what the group is all about. I personally have never had chemo because it doesn't work for my type of cancer but I've seen lots of people go through it and as Daloni said it directly affects the brain. So hopefully once the chemo has worked its magic for you, things will improve! Maybe try to think of it, as a means to an end! I also agree that if this feeling lasts much longer, you need to talk to the professionals who know how to help in practical ways. Sometimes we all need this, whether it's speaking to your GP, a councillor or your specialist nurse. They will have come across this almost every day and know how to help!

You said everyone here seems stronger than you! Well, I think we have had longer to work at it and learned to deal with things one at a time. We all have our down days I can assure you but it's how we manage to talk ourselves out of them or just have a sofa day without fighting it too much, or feeling guilty about it, that can make the difference! How do you feel now? Any better? I'm sending you a virtual (((hug))) and hope it helps!

Love Annette x

Popgate
Posted by

Hi there hang on in there I was like you the other week didn't want to live at all stupid when I am on borrowed time anyway I reached out on this site and boy boy I did not think I would get any help or any response at all I was so wrong the people on here did save my life that day the bond and friendship on here is so strong and genuine I can't live without it now I know when I have that meltdown some one will get back to me i have learnt to put out on here exactly how you feel good or bad and people take you as you are you have loads of support on here trust me i now know this if you need a chat any time do it xxx

Flippen
Popgate
Posted by

Hi there hang on in there I was like you the other week and this site saved me as you know you have loads of support on here you should feel a sense of achievement with your degree I am a thick person so I admire anyone who is clever like you it's important to have goals like your flower business I am trying to focus getting back to work for as long as I can it will be in shorter shifts but at least it will get me out of house for a bit and nice to be with my work mates even though only one or two have come to visit me while I have been on sick I know it's hard to focus on positives but do try even if it's only the sun coming out and no rain if you know what I mean I am here for you if you need a chat and some welcome support xxxx

Flippen
InvisiblePuzzle
Posted by

Dance in the rain I don't have much to say besides that you are understood, appreciated and loved the way you are, no matter the good or bad days.

I am sending your way all the positive thoughts I can muster, hugs

Ana

Dance in the rain
Posted by

Thank you all so much for your lovely supportive posts.  I've woken - not having had the best night sleep but nevertheless feeling like I'm ready for the day.  

I guess I'm use to be the one who is the positive one the one who gets things sorted, the one who has loads of energy! Well that ain't true anymore!  My youngest nearly 16 has also developed alopeci and he is losing his hair rapidly and it's just another thing I can't do anything about and my 17 year old had a melt down on Saturday when she cried and cried but wouldn't hug me because she didn't want me to catch her cold.  But on the positive side she has the sweetest boyfriend who drove over with a bouquet of flowers and a huge tub of sweets! And I guess although I can't do anything to makehis all better at least I'm here to listen, to cuddle.  So yes I'm feeling better.  Thanks you everyone

daloni
Posted by

Hi

I am so glad to hear that. I have teenagers too and it feels so unfair that they have to go through these important and difficult years with me being so unwell. But in some bizarre way, I think it’s also been the making of them. They are so amazing and capable and independent while also being kind and empathic. And that’s because they’ve had to be. Or maybe because I’ve taught them? People tell me so. 

I think one of the things I have taught them (and by taught I mean done myself and talked about) is to focus on the things they can change rather than the things they can’t. Managing anxiety is probably top of the list in my house because unmanaged anxiety spills out into so many other things and knowing how to manage anxiety helps in so many areas of life. 
xx

Roobarb
Posted by

Hi thank you for your post. I have to say it made me feel a bit weepy, but that was because you captured exactly how I feel, so never feel you are alone on here.....sometimes people may look strong but inside they are not.  

Last week on Monday my mum had a mild heart attack and the week ended with a scan for me that I expect to show my trial treatment has not been working, at one point I did think I cannot go on with this, it’s just too hard.......but then you do go on don’t you.

thank you for posting.....sometimes things are just too flipping tough but this forum definitely helps and the people on it will always find the right words to make you feel better.

im so glad you are feeling a bit better now, love heather xxxx

IamLyn
Posted by

I just felt that I needed to respond to this.

I am pleased that you woke up feeling little better.  I am not sure if my post count's in this room as having read everyone else's experiences on this site I know I am only just at the beginning of my treatment an if I am honest feel like bit of a fraud.  I know it's not a competition but still can't help the way that I feel. I also don't have much experience at the moment regarding treatment.

I did have an early 7week break from the tablets whilst my bloods recovered so do know the anxiety this brings.

I am truly humbled by the support everyone on this community gives to each over and wants to help and truly understand the way it is. Whilst we cannot take away the frustration, sadness, and anxiety we feel it will pass. 

I am early on in my treatment (7 months) and am also scared for the future.  I have a scan coming this Wednesday so the scanxiety is kicking in.

Your post is not depressing in the slightest and you need to get out how you feel whether that is writing this down (as you have done), having a cry, scream, or rant it does feel bit better to get this out whichever way works for you.

We are strong because we have to be but that does not mean that we don't need support.

x

Tinalay
Posted by

Hi Dance in the rain, I read your profile and see you were only diagnosed last Wednesday. I'm so, so sorry you're in this position, you and your family must still be in shock. 

I've certainly had the same thoughts at times, but as unlikely as it seems at the moment, things don't always feel so bleak. 

You've had a devastating blow, and then been catapulted straight into the uncertainties around treatment with all the physical and mental side effects that go with it, it's a wonder you're even standing up!!! 

We recently has a conversation about what 'bravery' or 'strength' meant for us, and it's a lot to do with being able to say how angry, scared, hurt,or whatever else you're feeling, and still keep putting one foot in front of the other. Those feelings are completely natural and will come and go, but as the others have said, they won't define you any more than the cancer will. You're a mother of 4, that's huge.  

Some advice that helped me at the most difficult times was thinking, what do I have to do to get through the next five minutes, then the next ten minutes and so on. Baby steps, you're still the same strong character you've always been.

So glad you had a better day, and hope there will be many more. sending massive hugs to you and your family. xx

Tinalay 
Rayboy
Posted by

Hi Dance in the rain

I understand when you say everyone seems stronger than me, i think that is because we know our true feelings and fears but tend to be guarded about sharing them honestly.  I know that my very supportive family and friends want me to feel good and when i am it makes them happy so i sometimes find myself acting in order to keep others cheerful.  I had my right kidney removed in August 2018 and two weeks after my wife had a sub-arachnoid haemorrhage.  Thank God she survived and had no brain damage however she has subsequently had further treatment and is waiting for a scan in November to see if she requires further surgery.  My three adult sons and six grandchildren were devastated by their mum's situation on top of my incurable cancer and so the act began.  Sometimes like now when i am unable to sleep i want to tell them that i can't always cope but i won't because then they will worry. I spent 27 years of my life in the Army and dot tend to wear my heart on my sleeve but try to keep my brave face on.  I think when i look at others on this site i really do realise that many of us are putting on the same act.  I think that this is the safe place where we can let go and admit our fears and feelings.  I know you have brightened up a bit now but think it is good sometimes just to say it as it is.

Sorry if i am rambling but just felt i would like to offer my support.

Rayboy
Dance in the rain
Posted by

Not rambling at all just a heart felt message for which I thank you.  So sorry to hear about your wife.  Sometimes you feel like shouting pick on someone else don't you?!