I am fed up with the deterioration of this disease and once it starts there seems to be no or little holding it back.
So I am going to have a good moan, shoot me down if you want. At least that will be quicker than what my maker has planned for me.
Any of you who have followed my ‘Back on Chemo’ and ‘Avastin’ posts know I have tried to keep cheery and have been very grateful for the extra time that I have had but it looks like I may be running out of time. I am scared angry and p.ssed off that a life I have worked hard at is being pinched from me.
I have not lived a boring life and I have had lots of fun and heartbreak along the way. A normal sort of life really, like us all.
I love my home but I am fed up that I can’t make it from the bedroom to the bathroom and then the kitchen without feeling I am going to pass out, the lounge which is beautiful stylish and comfortable is becoming my prison. That sounds so ungrateful but is the truth.
Why am I doing this post? Because I feel I have to, I need to. So if you are having a lovely weekend I don’t begrudge you I just envy you and hope that you carry on for years to come. I am just abit sad and scared that my end is coming faster than I thought.
Love Debsxxx
Debs,
I couldn’t read and run.Just wanted to say rant and rave as much as you like on here.Its much better than taking it all out on your loved ones.We have wide shoulders!
I am so sorry that things seem to be speeding up,I pray you get more time.I have followed many of your posts and admired your humour and frankness.This is such a shit disease.So many young lives,unfinished.
Fingers crossed you can squeeze in some more living!
Hugs
Dot
xxx
Hi DEbs
I have just done a really long post and its disapeared.
Please don’t worry about moaning on here DEbs it is the best place for it. I am well aware that we may not have much time (those of us with secondaries are especially aware of that) Every time I come on here now we seem to lose another of our cyber friends and it is so hard not to feel really p…ed of with it. Although I feel well at the moment the pain is getting worse and I worry about how quickly wwe can go downhill.
I think our family and friends can never really understand how we feel.
I am thinking of you DEbs
lots of love Caroline
Debs,
So sorry you’re feeling so rotten and that treatments aren’t helping. I’ve read many of your posts and found them funny, sad, informative and inspirational. BC is such a nasty disease and no one can blame you for having a moan, it’s what the forums are for. I truly hope you start to feel better soon as you clearly have a lot more living to do. I pray every day that they find newer, better and more effective treatments. It’s just so bloody unfair…
love and hugs Pat x
Debs feel free. Its crap. I wish there was something i could say or do.
As others say, this is what the site is for.
We try to hold it together a bit for our families. Here you should be able to say what you want.
Much love Julie
I don’t comment on every post, but I couldn’t pass this by. Please rant and rave, you have every reason to. Ifeel so sad that debsincornwall is suffering.
From all the posts I read some people I follow with interest and empathy and you’re one of those people. Every comment on here I totally agree with.
Please carry on posting, you have helped so many people and I for one want to know how things are for you.
With love, prayers and admiration for your fortitude.
Kathy.
Stay strong!
Dear Debs
So sorry you’re feeling crap. I know that feeling of the body deteriorating fast, with the mind and self just looking on in horror. 3 years ago, 3 years after my primary diagnois we moved out of London. I love our little cottage and our long winding garden in a smaller city…but now three years on, I know what you mean about the home beginning to feel like a prison. My partner will be left too soon in our lovely house…without me, just with memories.
I am not as physically ill as I think you are, but my body is barely keeping me together…walking is problematic and so my horizons are diminishing.
I’m so glad there are people like you Debs to whom I can talk the truth of this dreadful disease…let us tell that truth and leave the sentimenatlity to others if they must.
We don’t have to look on the bright side when there is none, but I hope we can use our humour and our dignity to tell a different kind of story than the one churned our falsely by the charities.
Jane xx
Well how can I thank you all?
It is so awful to feel and experience not only the loss of independence but the loss of spirit. I know that I will regain some sort of strenght but it will be from some emergency tank that I never realized existed.
Jane we have to tell the truth, not to scare anyone to hopefully for them to realize if they can get on a bike today, do it. Tomorrow could be too late.
Like you we moved to our lovely home not too long ago, a future planned and a future stolen. I am so glad we did it even though we will have nowhere near as long as we should have hoped for.
Today I got up bathed sat in the lounge, the garden was far too far away.
Ian did the shop and cooked the dinner. We watched the Proms and are on our way to bed to watch Bones.
So I will bid you all a good night and thank you all for your very valued support.
Maybe whoever the Editor of Vita is they may want to include ‘The Diary of the Unlucky Ones’ in their next edition.
Love Debsxxx
Debs,
Sorry you are feeling so crap but feel free to rant, moan or whatever, this is the place to do it. No matter how kind and caring friends and family are they can never understand how we truly feel.
You have been an inspiration to me since I came onto the forums last November. You have answered my questions and given advice to others and also made me laugh and then tonight your comment of ‘getting on a bike today’ has really hit home.
Thinking of you
Love Lesley xxx
Hi Debs
so sorry to hear how awful you are feeling - and i feel the frustration for you too - this shi**y disease shows no mercy - rant and rave as much as you want - you are one of the most helpful, practical and humerous people on the forums…but you don’t have to be that all the time and it sounds like you are at a low ebb . I had to tell my daughter i had a sense of humour by-pass the other day …take care and hope that emergency talk is ready, much love , jayne x
So sorry to read about the state of your disease. I can only hope that you will be strong enough to try another chemo and that it will allow you more time to enjoy your life further. You are right to tell it as it is, especially for those of us who have been given high odds of a recurrance - so that we can appreciate what we have now and not put things off. I watched the Prom too - lovely sparkly music from the 40s and 50s, which helped transport the mind at least to far away places which were full of optimism and no bc. Reading your post made me think - that I must go and see what’s left to book this season, as who knows where I’ll be next year. Try to stay strong. Your spirit when you find it lifts others - and I hope it can lift your mindset too.
Love
Bright xx
Hi Debs,
So sorry you are having a bad time and hopefully you will make a u-turn soon, this trip of ours is such a rollercoaster!
You have been such an inspiration to me also, and I have followed your posts, which are always of great interest.
I will take that advice and “get on that bike” although I have been living for the moment since being dx with secondaries since March!!
Thinking of you,
Much love,
Janx
Hi Debs
So sorry you’re feeling as you are both physically and mentally. BC is cr@p and it is so frightening and there are loads of us here and out there in the ‘real’ world who have to deal with the total unfairness of it. Not to mention the way we feel so ill half the time with the treatments. I really hope you have some good improvement and get out of your ‘prison’ for a bit. You have been, and continue to be, such a support and shining light - long may it continue. Hope you enjoyed the Proms and had a good nights sleep.
Nicky x
Hi Debs,
Not getting on the bike but putting on the hiking boots!.
Starting on Thursday, Hayle to St Ives via Carbis Bay, know of any good coffeee shops? Will email details.
As aways - love to you both.
M x
Hi Debs
Sorry that you are having a rough time at the moment. this is the place to tell it though as most of us are no strangers to the vulnerability of our situation and feeling the proverbial sword of Damocles hanging over us. Hope you enjoyed the Proms, I was too tired to stay up so went to bed but could hear it downstairs. Hope you are able to rest and enjoy your garden and that your next chemo improves things
Love kathryn
Dear Debs (and Jane)
Am thinking a lot at the moment of both you and JaneRA. For me one of the key issues has always been about trying as hard as I can to limit the impact of the disease on my life - it sounds as if neither of you are now able to do that because the impact has just become so great. All I can say really is that I feel for you. I can only imagine how it feels and I don’t like what I imagine one tiny bit.
Keep posting as it is (and don’t apologise for it!) because it will be the stage that all of us with secondaries will reach.
This disease is so much cr*p.
Lots of love Kay xx
My Dear Debs,
I have just read your post and its like you have read my mind.
Sometimes you just have to tell it like it is and right now it’s all a bit (lots of four letter Words).
The frustration I have felt at times is almost as bad as the grief of being so ill.
I don’t think anyone can understand what it feels like to go from “tomorrow, I’ll feel better, to, but what if I feel worse”.
Not having the energy to walk from one room to another is a truly amazing feeling for all the wrong reasons, I was like that on taxol a couple of years ago and the memory of it is still very much present.
I can remember getting out the bath and just lying on the bed with the towel around me wondering how I was going to get dry?
We are allowed to have our moments where it is all too much.
You don’t sound ungrateful Debs, just real.
I am in a position at the moment where I am thinking……
What the Bl**dy Hell happened there?
I few months ago I was in a very different situation.
That’s nothing to do with the brain tumors just the fact I now have to have help to get undressed because of my arm.
I hope you can get comfortable and adjust to your limits in away that works for you.
Best wishes
Tess.X
Debs (and Jane), I am so sorry you’re feeling so awful at the moment. I really do hope that things can turn around for you again - you’ve done it time and time before, let’s hope things can improve again. It must be awful feeling like a prisoner in your own home.
And you’re not moaning at all, you’re just being honest and if you can’t do that at this stage, then when can you?
Take care, love Lesley xx
Hi Debs and Jane
I am too very sorry that you are feeling so crap at the moment. You have both posted so much that has been so helpful and sincere, and I wish there was something that I could say that would help you both.
You have both fought so hard and I can imagine how scary it is, and how pissed off you are about it all. I am quite often pissed off with this hand I have been dealt, knowing that most likely, I wont see my beautiful children grow up, let alone probably see them start secondary school.
We are all here for you to moan too, as we all do the same from time to time and I think it does us good to rant on here to people/friends that understand where we are coming from.
Take care and lots of love to you both and everyone else.
Dawn
xxx
What fabulous comments from so many women.
I wanted to pick up on something you said Kay about the stage me and Debs are at being what all women with seconadries will reach.
I think its not quite like that. Each of us has disease which will affect our daily lives in very different ways. Some will be really well until a short time before they die…others like me may have along drawn out time of ill health. Debs and I are in very different positions,. Debs’ spread is to her liver, and her symptoms now reflect the onward spread of cancer plus ghastly taxol side effects.
With me I’ve got a very unuusual ‘prsentation’ and I am ill in ways I never dreamt would happen. Many of you won’t go through the particualr problems brought about by regional spread. I am in pain constantly when I stand up so I can’t walk far. I can just dress myself but if my partner’s around its easier to get her help. Alone I do a funny hop and jump to get my knickers on; I pull my bra up over my legs and I roll on the bed to get tops on right. And then there’s my voice…now the least of my roblems…oh how perspectives change.
Each of us has different side effects and symptoms…the ones I am getting I never dreamt would happen, never knew could happen and you will find nothing, nothing in the extravagnt glossy literature from BCC either to say they happen, or to say they are unpleasant. Oh Vita I feel so cross.
Sorry Debs to highjack your thraed. This disease is awful and the impact it may have on our lives sometimes past our most vivid imaginings.
Dawn…thanks for your kind words. I don’t fight cancer though…I simply live with a nasty diasease until it kills me best I can. This is not a military operation.
Jane