Desolate that I’ve reached the end of the road

Hi Fanny the wonder cat, 

if that is what you want to do do it hun, who are we to stop you, go for it, once you've got that over and done with, come back to us darling , we are here for you , 

Love Max  xx

Thanks, but I suppose question is how DO I pull myself out of it?  How can I begin to face up to the end of my life?  

Darling I cant answer that for you, but your a strong confident person, your here talking to us , we will help you all the way, kick butt hun, kick butt, 

love Max xx

Hi , I have just read your very down post, but still had the urge to say happy birthday for yesterday. I have not got to the end of life stage so I can’t truly appreciate what your going through, and I haven’t read any books that people sometimes mention on here that might help people prepare for this time. I have read Johnty’s Words from her post in March in the end of life section.

“Ultimately it’s my responsibility to ensure I try to get the ending I want, it’s a dilemma all of us will face at some point, there’s no get out of jail free card in cancer”. 

I can imagine that has read lots of books on the subject and could add some elegant words when she feels well enough, as I believe she’s had a tiring chemo day today. 

I have had a few pity party days in the 5 years since my incurable diagnosis and I’m not yet end of life. I give myself permission to have them as I feel it’s unrealistic to always be upbeat, and I see it as a transition stage to the next new normal. I have been on a mindfulness course which talks about worries floating past not exploring them just let them move on, but sometimes you just need a good cry. You ask how do you pull yourself out of it and in a way it will be like any other time you’ve felt down, you get fed up of feeling that way and choose to have a different experience. I hope you will be able to tell us how your going to try and have a bit of joy each day.

You said you felt abandoned to die, I hope the hospital hasn’t abandoned you but have released you into the care of others more qualified and nearer to look after you. I found the link below, sometimes reading through the suggestions, can make you feel better about yourself as you identify that you have already completed some of the suggestions.

https://www.macmillan.org.uk/cancer-information-and-support/treatment/if-you-have-an-advanced-cancer/end-of-life/finding-out-you-are-near-the-end-of-life

You have your fellow incorrigibles to at least listen and support, even when we can’t get the right words for you in these difficult times. 

Take care, 

  Hi, I am so sorry you have reached the point they can not offer you any treatment. As KT has said, I do hope your hospital or GP have arranged for your palliative care. If not, I would get onto your GP 1st thing! I have been to my local hospice, although I am not at that stage now, I was when I went, referred by my GP. We are here for some moral support but at this time I think you need to talk to someone professional. Please call your GP or call the McMillan Helpline when it opens and they will, I'm sure, steer you in the right direction!

Sending a virtual (((hug))) but feel it's not enough!

Hi ,

I'm sorry to hear your news and it is no wonder that you are feeling abandoned.  I have heard this many times from people who are advised that there is no more treatment and therefore we will not be offering further appointments.  The reality is that whatever you feel that is your reality.  Like others have said lots of us have pity parties with much less justification than you have and like others when this mood takes me there is not much point in my fighting it.  I need to wallow in it for a while until I get fed up and choose to move on and do something else.  When I am in this mood I also choose to ignore the support that I do have but when I come out of it my family and friends are still there for me and I can contact professionals involved in my care for support.  That's not to say that this is an instant transition as you will remain well aware of your circumstances and you are likely to slip in and out of this mood for some time..  

You do have some choices although it is entirely up to you what you pursue.  Have you been in touch with your GP since being told this news?  If you have not already been referred already then he can get in touch with your local hospice or palliative care team to make sure that if you don't want to be you do not have to spend all your time alone.  I don't know how close you are to your sisters but having additional support available such as this can only help both you and them.

Have you considered contacting another treatment centre and asking for a second opinion?  I confess that I know little about lung cancer but am a bit surprised that they have run out of treatment options after only 6 months?  Obviously I know nothing about any other complicating factors (I had a look at your profile but you had not filled it in) which may be impacting this decision making process.  If you are going to go for a second opinion I would suggest that you look for a centre which specialises in sclc.

I am also aware that due to the Covid 19 situation, trials had stopped accepting new patients but the restrictions are lifting and there is much pressure on the NHS to resume and catch up with cancer cervices.  I wondered if it was worth while asking if anyone them were resuming or might be resuming soon to get your name on their list?

My apologies if you have already taken these steps or decided that they are not for you.

As others have said we will be here for you if you want us to be, all you have to do is post.

love and hugs,

Gragon xx

Hi

Oh Fanny, I'm devastated for you. It's the terrible, terrible news that each of us here will probably face at some time, but saying that doesn't ease your worries. Your life I'm sure feels like it has been blown to pieces. 

I can't give any more advice along the lines of who you could contact that others have so wisely given you. I have had many pity parties too, especially just immediately following my diagnosis and 4 months later being politely explained to contact a number for a temporary loan wheelchair before the social services give me one long term. I had quite a few counselling sessions because my future retirement dreams were also blown apart. More recently my pity parties have been accompanied with a few drinks which I'm trying to at least stop it getting worse. 

Fanny, I can try to help you by letting you know that I and dozens of my fellow incorrigibles are here for you to talk, to give you support. I wish I could do more.

How did you feel when on your birthday you were given that news? Were you expecting contact?

Tvman xx

Hi

I am so sorry to hear your news. I am a step or two behind you in that I am still on chemo but it’s one I’ve already proven resistant to and beyond that there’s nothing. The chemo is making me very unwell and tbh feels like it’s merely postponing the inevitable. 

So how do we get through this? I had a pity party last week. I was feeling so unwell from the chemo. I couldn’t move beyond my garden. My sister was with me and she tried to buck me out of it with “stay in the day” and admonishments to stay positive.  

I explained to her as patiently as I could that I would get there but I needed to go through the period of self pity first. I told her there was no way round it, experience has taught me that as my limits change and my horizons shrink, I need to come to terms with it afresh. Then I can return to my default position of being generally positive, kind and brave. 

Since my pity party last week I’ve done the things that work for me. I have meditated, counted my blessings/ practiced being grateful, and I have been for a walk everyday, no matter how short. It’s beginning to work and I would be doing better if I hadn’t landed back in hospital yesterday instead of having my chemo. Boo! 

I hope this is helpful. I think you’re quite justified in  needing a period of adjustment although I can imagine you don’t want to get  stuck in self pity. I think I would find it harder to drag myself out of self pity of I lived alone. Be kind to yourself, now more than ever  

xxx

Thank you Daloni and everyone else who has taken the trouble to reply. It’s nice to hear from you again Daloni, I think we had some interaction when I had endometrial cancer in 2016 - successfully dealt with by surgery on my birthday! 

A bit of background on small cell lung cancer. It’s the mist aggressive form of the two major forms of lung cancer and I got a particularly aggressive version. Initially, it responds well to chemo and mine did, but it inevitably returns as a complete bastard. Which it has. My experience hasn’t been helped by the fact that my tumour was initially visible on a scan taken in June but no one spotted it. At that point it hadn’t spread and was operable. By the time someone did spot it in October it had spread to my liver and by the time they told me about it in late November, it had got to my bones. The Trust has written to me several times to tell me how sorry they are. 

im fairly fortunate in that it has been pretty well asymptomatic, although I am now getting some mild symptoms. I’m still working though I’m not sure how long I can continue. from what I understand, it’s the liver which is now the biggest problem. 

I was being a bit of a drama queen when I said they’d abandoned me. They have referred me to the palliative care team and have proposed (tentatively) treatment with Topotecan which is a fairly brutal form of chemo and they seemed to feel it would be so damaging to my quality of life that it might be worse than the cancer. I’m fortunate that I have a second opinion available - my sisters best friend from school is a consultant oncologist and was also unenthusiastic about the Topotecan, Especially as it can both make you feel sick as a dog and can actually shorten your life because the side effects are so grim, so I’m not sure what to do. 

although I live alone my sisters are being very supportive and I have a wonderful group of friends

thank you for reading this apologies for the length 

Hi

I knew I recognised the name. It’s not one that is easily forgotten. Hallo again   

The chemo you mention sounds grim. If your docs think it might do more harm than good, why are they even offering it? In a way I think it’s unfair to do so. It puts all the responsibility for saying “no” onto you. That’s quite a tough ask as saying no is mighty hard to do. I guess they’ve told you the full score and ultimately it is your decision. 

It’s good to hear you’ve got access to the palliative care team. They are good people, in my experience. And your sisters sound great. 

You seem cheerier coverall today. I’m glad. I hope it lasts but it’s ok if it doesn’t. There’s no need to apologise for a long post. 

Lots of love