13-01-2019 04:20 PM
Em...? I thought I had only responded to Butterfly when I said I wish the same for you - meaning peace and comfort - whereas I realise it sounds like I think you should all join me in giving up treatment- which I most certainly don’t. Sorry! Dratted social media - I’m rubbish at it.
Take care all
12-01-2019 12:04 PM
Hi Butterflyflyfree and PinzA, Butterflyflyfree you have put into words what I have been wanting to say, but hadn’t managed to find the right words to do so. While I doubt you can give a true answer until faced with the decision, I’m not sure I want to undertake some of the treatments that will undoubtedly, at some point, come my way and I think PinziA you have, with your honesty and realism, made me think long and hard about that in a more reassuring and realistic way. Thank you both, Kate xx
12-01-2019 10:53 AM
Your honesty and realism has really struck a chord with me, and highlights many of the fears I have when considering treatment after 1st and 2nd line treatment has failed. Thank you for putting it into words.
The thing that really resonates with me is your comment about finding the balance between prolonging life, and the quality of life that is being lived. The doctors are there to keep us living, but they are not living with the effects of the treatments that they offer.
I too have been referred to my hospice, and have met my palliative care nurse. Their focus is very much on helping us live the best life we can, and are completely supportive of any decisions that we make, which is so reassuring.
I hope you continue to find peace and comfort. Xx
11-01-2019 11:58 AM
Thanks for the reminder to all of us secondary ladies about how friendly hospices are and not there just for the end of life stuff. I’m glad you are getting such good support and pampering from yours, I do hope it’s making your life more manageable and dare I say it enjoyable. Good luck with your decision about stopping treatments, I’m sure you’ve made the right one for you, it certainly seems like you have got away from all the appointments nd box ticking!
11-01-2019 10:28 AM
You might also ask your GP to refer you to a hospice, if you haven’t already done so. That’s what I did when I gave up the trial. They’ve been brilliant. I have alternative therapies like massage and acupuncture as well as a monthly visit from a counsellor who really helps with my state of mind. Also it’s really great to have some “tea and sympathy” after all the tick-box oncologists.
11-01-2019 10:18 AM
Thanks for your good wishes. I must have been having a particularly bad day when I posted, I seemed to feel very sorry for myself which is not normal for me. I do get cross though, because I feel a lot of it is self-inflicted because I didn’t ask the right questions.
Don’t hesitate to get in touch - forum or privately - if you ever want to compare notes.
all the best
04-01-2019 01:51 AM
I'm so sorry you had a bad time on the trial and thankyou for giving me the 'other side' of the picture, it sounds from the tone of your post that you have made a decision that you're at peace with and I hope I can have some of your strength and serenity when the time comes for me ( as I know it will).
I suppose that when the doctor told me I was out of treatment options and that the Christie referral was basically my last hope that I did panic and I never considered that there was a negative side to the trial option I just clung to any glimmer of positiveness
I agree that feeling you have no control over what is happening to you is one of the worst feelings about this whole horrible deal and one I find soooo frustrating, I despise feeling so helpless!
Again thankyou so much for taking the time to reply to my post and I really appreciate your honesty about the side of the clinical trials that dont always have a good outcome. Dawn
02-01-2019 07:51 AM
This won’t help you but may just give you food for thought if you are offered a drug trial. I was diagnosed straight to Stage 4 in 2013. It mutated in 2016 and I was put on a drug trial at a big specialist hospital in central London, under an eminent Professor from the Institute of Cancer Research. The oncology team were delighted and pronounced the treatment a great success. This was because of the effect it had on the tumours. The effects on my day-to-day health were ignored but it has been a miserable time. Eventually, in August of this year, I had “the discussion” with my husband. I told him I wanted to give up treatment. I’ve posted about this elsewhere. At the time of the mutation I was like you - terrified and angry - but I really regret the drug trial. Yes, it may have prolonged my life but I had to decide if it was a life worth living. I’m in substantial chronic pain every day, I walk with a stick, I can’t breathe properly - all from treatment. Since my decision, life is better because I now have “comfort and care” from a hospice team and see fewer doctors. I don’t have to drag myself to various appointments when I am physically not up to it. Like most people, I don’t want to give up - I won’t see my grandchildren or get to travel with my husband but cancer treatment won’t cure me. But it does make daily living a struggle. My husband weeps when he sees me in so much pain so I try to hide it. He doesn’t want to lose me but he was exhausted from looking after me. At least now, free from the drugs, I can think clearly and we can have proper conversations which we’re really enjoying.
So while I understand wanting to get on a trial - the diagnosis is so terrible and frightening - do weigh up the options. It may be worth it. Only you can decide. But my advice would be to ask difficult questions, perhaps get some counselling and an informed opinion before you decide. You may also feel more in control. I found it was the lack of say over my own life which made me most angry. I’m much calmer now.
23-12-2018 04:15 PM
Ladies you are brilliant thankyou so much for your words of support and advice, much more useful than tears (although they do break through occasionally ) it is truly heartwarming to read some of your messages. I am determined to try and enjoy Christmas and might even get a little tipsy...god help the turkey!
I wish everyone a Happy Christmas and a peaceful New Year...and many more to come!
21-12-2018 12:44 PM
I agree with everything the others have said and it ain’t over yet! Look on Breast cancer.org community an American site I frequent a lot. The ladies on there usually list their treatments in chronological order ( something I think would also be useful on here) find a thread with your kind of cancer and look at what they had. Also some of the oncologists in the states seem ok about repeating a drug that worked on the patient at one time previously, so go back to it.
Keep fighting, put a rocket up your oncologist backside and refuse to leave until you get a new plan in place!!!! You’ve got this girl... come on.... we are all behind you.
21-12-2018 11:11 AM
Good to hear from you again on the forum amberkitten, I’m.sure everything you’re experiencing is to be expected! All good advice, but just wanted add my thoughts about how amazing the Christie hospital is, after reading your latest post I have more hope that they will have something to offer you. They also have a Maggie’s Centre there that may be worth a visit when you go. I hope you manage to enjoy Christmas and that the new year holds better news for you, easier to say I know, Kate x
21-12-2018 10:25 AM
21-12-2018 10:23 AM
21-12-2018 09:25 AM
Amberkitten, I am sending you the biggest, warmest hug I can. You sound so frightened and thats understandable but try to take deep breaths and take back control. There are lots of ladies on here that have and still are having good results on trials. There is nothing to say that a fresh pair of oncology eyes wont have something up their sleeve for you. Try not (and believe me I know it’s hard) to let this awful disease steal anymore days from you. Melinda xx
21-12-2018 08:59 AM - edited 23-12-2018 04:16 PM
Thankyou ladies for your kind words ❤️ At the moment I'm in between bouts of crying, panicking and I have a knot of pure terror in my chest at what the future holds.
To try divert myself to something more posisitive I've been trying find out what trials Christies have at the moment,also Xmas wrapping,cake decorating,laundry etc. All on automatic and flitting from to other as I can't concentrate on anything.
My cancer team are from Weston Park hospital in Sheffield but I feel so frustrated as I don't believe they have exhausted every avenue and are just following set treatment protocols, and don't challenge what drugs can be tried in different cancer scenarios because they are not licensed! Makes my blood boil ITS NOT THEIR LIVES! I feel that maybe not all oncology teams are striving to find new treatments and challenge NICE guidelines.
Okay it's time to put away the soap box and get a grip on things, I'm just a person who needs to have something positive to cling to in order to function and a need to have an occasional rant at the universe............and a deep pillow to scream into!!!....Again thankyou ladies for listening? To my ranting x
21-12-2018 08:37 AM
As the other ladies have said I’m sorry to hear there are no options left available but do hope the Christie has a trial that will benefit you. A truly difficult time for you and no wonder you are sounding off but that’s what we’re here for.
Sending big hugs
20-12-2018 07:32 PM