Hope everyone is doing ok. I haven't posted for ages but am still here in the background!
Mam had to stop daily cyclophosphamide and fortnightly avastin in March, she was worn out. Her next scan showed it had only just been holding things steady, and the cancer had progressed, thickening around the bowel and spreading to the lining of the lung. She opted in May to start 3 weekly Trabectedin, with very low hopes, but she didn't feel she wanted to stop trying. She has had 4 - more than we had thought she would manage, but her first scan yesterday has shown it isn't really keeping things at bay.
The oncologist has advised that it's time for mam to stop chemo. She has already had 6 carbo taxol, 3 caelyx, 6 gemcitabine, and 4 months of cyclophosphamide and avastin, all since Jan 2013, all with very limited success. The oncologist said current thinking of the American Society of Oncologists is that people are sometimes having chemo more for the psychological aspect of feeling they are still fighting etc, but the side effects are maybe shortening their lives or decreasing quality of life.
I'm glad that there is no more chemo, though afraid of course that the cancer symptoms will cause mam to suffer a lot, or soon, or for a prolonged time. Hopefully she will do ok for a while still without the chemo beating her down, the cancer hasn't spread to other organs. Mam has more mixed feelings as the chemo was a sort of security blanket, albeit not that pleasant. We don't really think there is much point getting a second opinion as mam has tried so many treatments that have barely worked. She's very tired and sad, even though we knew this day was coming it's still so hard. She'll be 63 tomorrow. Today now i suppose, it's past midnight.
I'm not sure why I'm posting really, and i hope i don't upset anyone who is just starting their journey or feeling low. I just wanted to check in and to wish everyone well, you are a great supportive community. Sometimes just posting and writing it all down is therapeutic.
With thoughts and prayers for you all and your families
Mary
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marymarcy
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I'm sorry for you and your whole family have come to this time now. I can't imagine it how this must feel and I'm putting off imagining that day, as I'm sure you'll understand.
I can understand what the oncologists say about having chemo for a physiological effect, and how for your Mam, it's a security blanket, because yes you do feel that whilst you are doing chemo, you are doing something.
Not a lot else I can offer in ways of comfort, please don't be concerened that you have posted this type of msg, it is always good to know how people are doing and it wouldn't be the real world if it was all good news.
My wish for your Mam, is to enjoy the increase in energy, that I hope she will feel for some time after stopping chemo and that you all have occasions to make happy memories
My thoughts are with you and your mum. I hope there is a period of feeling good and javing some fun off the chemo. Iguess most of us will face this at some point in our treatment. Thinking of you. Jo xxxx
Hi Mary. I just wanted to tell you that I did the only thing I could do for your Mam right now and that was to say a little prayer for her. I pray that she will be pain free , regain her energy and defy the odds. I have gone beyond the prognosis of 2 years to beyond 4 years . This disease seems to show many faces and affects women in different ways. You sound like a wonderful caring daughter
Thank you so much. Mam was told time was short over 2 years ago, but still here with us thank God. Wishing you well Molly. X
Hi Marymarcy, I actually had been thinking of you and your Mum in the past few days. It is a sad thing to be told, no more chemo I imagine. But my onc here in Cork has a breast cancer patient given similar news and fifteen years on she comes back to him for check ups. I hope your Mum will get rest and recuperation and start to feel well enough to have a quality of life and a nice time together for the moment. I saw a piece of art on a wall in Lahinch saying "Dont count the days but make the days count" and it is actually true. You and your family must feel sad but take every day as it comes.
You were posting because you needed to post and this is what the site is all about needing support and everyone helping each other as much as they can.
I know you are going to make your Mums birthday as pleasant as you can today and that will be hard on you. I will say a prayer for you and your Mum and family. It is hard when your Mum is still a young person and would expect to be enjoying her family and slowing down and relaxing. I am just two years older and down the track will be told the same but I try not to think of it, I do think of it but then tend to forget a bit. I will be finishing the Avastin soon about two to three more sessIions and then a scan to see what is going on. Thinking of you and wishing you a nice day with your Mum today and sending birthday wishes
Thanks Joan. We had a nice day, quiet, Mam watched some of the hurling and her brother and his wife came over in the evening. She is doing ok, all things considered. X
So sorry to read your sad news, Mary. You must feel so helpless. I hope your Mum is able to have a good bit of time once she recovers from all the horrid treatment. Hopefully, she'll then feel stronger and able to enjoy the good times.
So sorry to hear your news. Can't imagine how you all must be feeling but do know how hard it is to watch someone you love very much go through this and feel so helpless.
Just want to send you love and hugs and let you know I will keep both you and your mum in my prayers xxx
My dear Mary. I am so sorry to read about the decision not to continue chemo for your mother, particular when you mentioned that your mother was 63 this weekend - the same age as me, only next week is my 63rd.
However, a friend of mine, (who is an oncologist), said that sometimes they have to remember the person and that quality of life overrides quantity of life. I hope I don't upset you with that comment.
I have just begun 4th line chemo and as long as I can take treatment & the side effects are not too harsh, I will continue with the drugs. I know there will come a time when I will have to face the tough decision, and my family will be upset when it happens.
So really, I just want to send kind wishes & warm hugs to your mother and to you. Hopefully, the time without treatment will help you all & will restore a balance of quality to your Mum and that the time will allow for some wonderful happy memories for you & the family.
No that's not at all upsetting Daisies, to be honest mam has had more chemo than i wanted her to, and i suspect more than the oncologist really wanted, mam just didn't want to give up hope that one of them might work. Her life on chemo is very limited in terms of independence and energy, although at least on this last chemo she was pretty comfortable. It's a very hard decision to make to stop active treatment. Thank you Daisies and hoping the treatment you are on continues to be do-able and gives you quality of life for a long time to come. X
Hi Mary, only just read your post and I am so sorry that this decision has had to be taken. As others have said, this will come to us all at some stage and personally I dread that time. I hope your mum had a good day today and managed to enjoy her birthday. Once she regains a bit of strength, do lots of nice things together, a show, a weekend away, nice meals out etc. No need at all to apologise to us regarding your sad post, we are all here for each other and each of us know only to well the first all score so to speak. Sending you a big virtual hug. Ann xo
Thank you all girls for your kind words and prayers and warm wishes. As ever, am glad i posted.
Mam is sad, she just doesn't want to leave her family,, and sad when she saw her sisters in law today, similar ages but in full health. But she is doing ok, we all are, and while realistic, I'm still very hopeful of good days to come, even if they won't all be good.
Mam is going to get some ascites drained this week, and that usually boosts her energy, and hopefully being 'minded' by the lovely oncology nurses will help her feel more secure as i think she feels a bit set adrift now that active treatment has finished.
Thank you all again, you are such a support. With good wishes and prayers for you all.
HI Marymarcy, yes I can understand that as long as you are going to hospital for treatment, you feel hope and then when it ends, you are set adrift. Maybe when your Mum is feeling a bit better, you could make an appointment for her in Solas. It might be good for her to talk with someone outside the family or it may not, just a suggestion. Even she may have a reflexology treatment if your Mum feels up to it. I find that this does settle the mind and the body a little. I am sure the family can use it as well. I am glad you werent inundated with visitors yesterday. Yes it is upsetting to see others the same age or even older without any illness. Life can be unfair. You mind yourself too
Hi Mary,prayers,hugs and understanding wished for you,mum and family .I don't think your mum will be suffering much as the Hospice care is brilliant and they come to your home also,My tears like your mums were due to my overwhelming emotion of missing my family But,I realised it was the emotion I'm feeling when I'm alive.
We're all on the same boat except,some have just set sail,others are still at sea and more have reached their final destination,but put it this way ,with loving support from those nearest to us,with memories being created,we will have one hell of a ride! X
Hi Mary, just catching up with my emails! So sorry your Mam is having to go through all this. This damned disease! Hopefully she will feel a little better having a break from chemo, it's so draining.
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