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Mum recently diagnosed
Comments
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@Formymum19 - that is terrific. I can understand her reluctance to go away just now ..... in a funny way, I faced that 10 years ago when my husband had major cancer surgery & we both knew that 75% don't make it to 5 years with his condition & I sort of hunkered down, waiting for something bad to happen. When it didn't - we started doing small trips, then went to NZ, then UK, then Mexico .... staying closer to home now tho.
Re your holiday with your Mum - get onto Otis Foundation and make enquiries (even for next year!) and you could have a lovely free holiday with your Mum and other family members! I stayed at the Snowy Mountains last year & it was wonderful.
http://engonet-otis.azurewebsites.net/directory
As @kmakm says, our 'organising skills' changes a bit - but hopefully the further down the line we go, it will get easier to make those holiday decisions - even booking them 1 year ahead!
All the best for your Mum and you xx
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Interestingly, one of the recognised side effects of PTSD from returning soldiers after WW1 (though of course it wasn't called PTSD back then) was the inability to plan anything for the future.3
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All your responses were so lovely. This point in particular @ddonddon said:I am not being negative, it’s just our reality.So, when she talks of not being here for things ahead just give her a hug and don’t brush it off with ‘of course you will be’ - she needs to be heard.
I hadn't considered it from her point of view, not to that extent i guess. I can't imagine how it feels not knowing whats next, it must be so scary. But i will do that next time. Mums not much of a affectionate person but I will just be there for her any way i can.3 -
Dear @Formymum19
A ‘holiday’ may seem too much to plan ahead but a day out - at the sea, in the country, at some beauty spot - may be worth considering. Nature is a wonderful healer (have a look at the On Our Walks thread!) and several hours away, from normal day to day stuff on a bright, sunny day, can invigorate the senses and the mind. If nothing more, it’s good talking time. Best wishes.1 -
September 2020 update.
Mum has been on the same treatment since diagnoses and she was just told that she has multiple liver mets. So the treatment plan has changed to capecitabine and anastrozole. And see how she goes. He did say that usually the palbociclib she was on only usually works for 6 months and she got a year from that so thats a positive.
The fact that he is going to try oral chemo before IV chemo is good, isnt it?
I hope everyone is doing well.0 -
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Welcome and don’t be afraid to ask questions. It’s a long road travelled and your mum will have to jump a few hurdles, so she’ll appreciate your helping hand... and arm... and shoulder, all the best to you and your mum1
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Hey all,
It's been quite some time since i checked in. Mum had a couple of different types of IV chemo, the last one being gemcitabine and it made her incredibly ill and didn't do a thing for her cancer marker. In 8 weeks it went from 220 to 2700. I'm not really sure what those numbers mean but mum has decided to stop all treatment and will be meeting with a palliative care team in December.
I knew this day would come i guess i just thought it wouldnt be so soon.
We are now getting her affairs in order and I'm trying to be there for her as much as possible.
She seems to be up and down emotionally which is totally understandable. But shes a very stoic woman and hasnt cried or anything (shes not the type to lean on someone) more of a factual, well this is happening type.
I can sense shes feeling guilt and probably regret just in the way she had said some things and in usual mum fashion when i offer to do things for her she asks me why I'm doing it 🤣 to help you silly. Shes the most stubborn, independent woman I've ever known and i take after her in that way and I made sure i told her how much i admire her "i don't need no man to do anything for me" attitude, shes so headstrong and we have butted heads 1000s of times over the years for it. I wouldnt have it any other way. I mean that in an endearing way.
I know when the time comes its going to break my heart but as long as she gets to go out peacefully and is as comfortable as possible thats all that matters to me.
Ive also been very careful to try and not mother her too much because she is so independent but i do constantly remind her that I'm here and i will do whatever she needs help with.
Yeah i don't really know what that whole post was about. Just a info dump/diary entry i guess.
I dont know how much time mum has left but i do think this xmas will be her last so i will make sure she gets a garlic seafood lunch, with some baileys on ice and a good book to read (all of her favourite things)
I hope everyone here is doing as well as can be expected.8 -
Oh gosh, my heart is breaking for you. You are being the most wonderful, supportive daughter ..... and good on you. xx You are carrying a very heavy burden ... and I 'get it' as I am in a similar situation - but with my husband. It is tough. I hope you have really good friends & other family around you for support, too. The palliative care people are REALLY lovely - and have counsellors if you need to talk to someone to help you cope too. They also have volunteers who will sit with your Mum when you need a break, as she becomes more vulnerable and they will also provide equipment (wheelchairs etc) as you need them. I know your Mum will enjoy her garlic seafood lunch and Baileys on ice YUM! .. and spending time with you on Xmas Day - make memories ...
Take care and we are all thinking of you xx3 -
Oh dear that is really sad news.
But your mum is lucky to have you there for her.
Take care and virtual hugs.🌺2 -
@Formymum19 it has been really helpful reading back over your post from the start
i started the metastatic part of my journey in November 2019
It has helped me understand her better by reading from your angle. I think I’ll stop brushing brushing off my children’s worries off now. One in particular has taken on the role you hav I have felt on occasion she could step back as i feel its taking a mental toll on her. But she’s stubborn and your posts have opened my eyes.
Prior to covid both my girls would come to my appointments. I have appreciated their help And probably don’t tell them enough.Now i will. Thank you and don’t forget to take care of yourself as well.
Big 🤗 hugs to you.5 -
@Formymum19 sending you a virtual hug. I have a close relationship with my daughter as well and I cried reading your post. You are being a wonderful support to your mum treasure the time you have. I hope she enjoys Xmas. Lots of love xxxx1
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@Formymum19 what a wonderful daughter you are. I don't have a daughter but I do have a son. I cherish every moment with him and I am sure your mum cherishes you with her, helping her and being conscious of her needs.
Cancer has taught me alot about being in the present moment and being grateful for those moments with the people I love and who love me too. You sound like you understand that from sharing the journey with your mum.
This Christmas will be so very special for you. I love the sound of the garlic seafood and Baileys on ice. I am going to have seafood too and probably some champagne 🥂.
Enjoy being with your special mum. She will love what you are doing. Sending you a virtual hug and much love x2 -
It’s so wonderful of you to be so good to your mum @Formymum19. She appreciates it, that much is certain, even though she may not show it. It is sad that the chemo didn’t work 😢. I hope this holiday season is lovely for you both ♥️♥️
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Thankyou everyone for your lovely words. We are all here for the same reason because either you are personally going through this or have a loved one who is.
It's such a tricky thing to deal with and despite everyone saying im being a great support for mum, it doesn't feel like I'm doing enough and i know that stems from my own insecurities and self beliefs about who i am as a person.
I wasn't a great daughter to my mum for many years, especially as a teenager, i had my own mental health struggles and blamed her for alot of it, while being too young to understand she had her own trauma that affected her too.
Thankfully we had a huge talk not long before the diagnosis and i told her everything about how i felt growing up and that i now realise that she had her limitations emotionally due to her upbringing.
Long story short, weve hashed out all we need to, long before this journey started and im so glad we did, we arent overly affectionate or get talking about our feelings often but ive made sure I've said all the things i need to tell her and how I'm grateful for the knowledge, love and help she has given me over the years and i hope that kind of opens the door for her to be able to express whatever it is she needs to before she passes. I hope that when she does pass it is peaceful and she doesn't have any regrets.
When we are young we idolise our parents and seem to forget they are people too, with flaws, they will make mistakes and my mum did the best she could with what she had and i will make sure she knows that. Im getting emotional writing this.
I love her dearly and watching this terrible disease take a little piece of her every day has been very hard and for those of you who are experiencing this yourself, i know you want to protect your family from what you are going through but i promise you, all they want is to be there for you.
Obviously i can't speak for everyone because the journey is a very personal one but thats just my two cents.
I can also only offer my side of the story too as i don't know what my mum is feeling, i can get a little out of her here and there but i dont want to push her either, if she wants to talk about how she is feeling she will in her own time.
I have recently had a fair amount of time off work also due to the news and I'm so very lucky i have a boss who has offered to have phone calls, coffee and has told me to reach out whenever i need her. She's been just incredible.
Again another novel 🤣 thankyou for being a safe space for me to vent, share and for the lovely words.
What a beautiful community you have here and i hope you are all doing well ❤
Please be kind to yourselves.5
