I'm in robot mode...can't let any emotions show...will know which stage and prognosis next Thursday...as a lupie I'm weirdly worrying that I may flare and not be the rock I'm meant to be...mum called and told me today (her husband made her as she didn't want to agrevate my condition!) After the routine x Ray she's had an mri and fluid removed from lungs...she's a lot like me (robot style) generally we're both all singing and dancing with a bizarre sence of humour but when **it hits the fan we crack on....I need to be well but my stress levels are maxed....waiting until Thursday will be a nightmare...I'd like to finish by saying I feel...
I don't feel anything..I'm organising when to fit in taking the tree down and cancelling work etc etc how to tell the kids (her grandchildren) I've even had flashes of the funeral run through my mind...really at a loss as to what I'm meant to do or feel
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I remember being at the surgery when they told my mum she had terminal liver cancer.I can't begin to describe how I felt.I tried to hold it together for her but inside I Was screaming. You just dont know what to do next. I can totally appreciate your situation.
Until you get your prognosis next Thursday try not to plan too much, you need to know where you are going with this.Easy for me to say don't worry until you know,but you will worry.Please don't get yourself into such a state that's that it affects your condition of it will make things even harder for you.
I really feel for you and your mum and indeed the rest of your family but until you know what you're up against you can't prepare your plan of action.
Dont tell the grandchildren yet until you know for certain ( no need to worry them at this stage) all they need to know at present is that granny isnt well.Leave the tree it's not important,the tree can come down anytime .
What is important us to spend time with your mum, and enjoy yourselves together.
Next Thursday is going to seem like ages away and she is just as worried as you if not more.but please wait until next week until,you know the whole story .Hopefully it will not be as bad as you may think and I pray that it isn't.But in the meantime I hope you do not deteriorate as a consequence of all this stress.It may be worth just as well asking your own doc for some help with this.
Take care of yourselves I Am thinking of you,and hope that the result of the tests show it is treatable.
I've been through this with my mum and there are no words that can describe the helplessness you feel. It's the beginning of a journey that no one ever wants to go on. Just take it one step at a time, listen to what the professionals tell you and don't be afraid to ask them to explain anything you don't understand. There will be a lot to take in, and questions will pop into your head, but they will give you a contact nurse whom you can speak to about any concerns. There is so much that can be done these days so try and keep positive and just be there for your mum. She is bound to be worried about you too, you will find inner strength that you didn't know you had. I hope there is some positive news for your mum on Thursday xx
Summoning all inner strength and cracking on will feed back prognosis on Thursday I've planned to stay at mums regardless of good/bad news think we'll deserve a few drinks by then x
I have Lupus (SLE) and diagnosed with lung cancer in April this year. My darling wife is a huge support to me re. my Lupus and a real rock re. my cancer. It is so important that you adopt the same outlook for your Mum, it will be so important to her. If any of the grandchildren are under age 12 or so, dont tell them. I have a grandaughter aged 13 and she knows about my Lupus- she needs to know no more. Be very, very positive. xx
Kids are 18 and 14 I've told the eldest but holding off until prognosis before telling the youngest....but please read think your thoughts on your situation...don't underestimate the strength of a 13 year old its a tricky age but she may appreciate being treated as an adult and may actually give you strength in her love for you xx
There is no way you are "meant" to feel - everyone is different but everyone gets the cottonwool brain. I did when my husband was ill. That's why you don't feel anything. It's a protective mechanism, it allowed me to function for the first few months of treatment until things looked less awful.
The others have given you good advice - there are things that are important, others that are not like the tree, but there is one thing I would dispute. My children were 10+ and 12+ when their dad almost died of cancer. As I was really rather left to cope with it all on my own, neither my mother nor mother-in-law could cope, no-one got round to discussing what was going on properly with them except "Dad is very ill". Until a child at school turned to the younger one and asked "Is your dad still dying?". Which was far more difficult to sort out than if we had told them more sooner.
Macmillan nurses are wonderful - and probably a group to ask about how to explain it to the children. But please don't bury your heads in the sand - children are very observant and suffer more by not knowing and then being faced with a sudden death they later find out was expected. That is then a real betrayal. I saw that when my brother-in-law refused to tell his children - who were in their mid to late 20s - that he was terminally ill. His son and daughter only found out after his death that we had all known the whole time he had been ill. That was far worse, even at that age.
You will still be able to have some good experiences in her journey - but don't anticipate the funeral just yet. It all depends on what they find - as I know you know.
I'll be telling the children 18 and 14 the outcome of Thursdays prognosis and we will get through it best we can....I'm very sorry to hear of your experience people make what they think are the right decisions with the best intentions but quite often when choosing to keep someone in the dark (with the intention of protecting them) can result in very painful conflict...time is a great healer and experience will teach that best intentions were meant x
Sometimes going into robot mode is the way we cope but at some point the robot will break make sure you have support as well as your mum. I know my daughters and grandchildren were what kept me going.
Children are more resilient than we give them credit for, they will pick up on your emotions, no matter how much you try to hide it, you don't have to give them all the details just a little so that they will understand if adults become a bit teary or cross for no reason and they will want to support mum and grandma in there own way, even if it's just a cuddle.
Thursday seems like a long way to wait, but it will be here soon enough. Hoping for you and your family to get results that can be treated.
Exactly my thoughts today...I will have a sit down with kids on fri as I've decided I need to spend the day/night with mum regardless off the outcome of Thursdays appointment x
So sorry to hear that. Love and prayers being sent up for your mum and you and your family. I'm glad you have this forum to express your feelings. Xoxo Nan
Thinking of you & your mum & all the family. Am so glad you're here and have posted...these are such wonderful replies.
My mum back in the states survived her rectum tumour cancer treatment ordeal in her 80s before my infant onset lupus diagnosis was finally recovered in my 50s...so am v much relating to your post & replies. She is 95 now and fell before Christmas...is very weak and sore as a result....here I am in the uk, concerned for her while managing a rough abdominal flare that the NHS started to investigate 15 months ago. I had been feeling v low about all this...the solidarity and support in your thread has helped me feel less alone and upset. I hope you're feeling less alone & upset too
My robot self has cracked slightly but only occasionally and in short bursts...it's terminal...mum is in for the chest drain and talc thing on Monday oncologist in 2 weeks then chemo and radiation there after...kids know and are doing well...I've told them to "just be" which is my new phrase for how to cope...I explained that everyone is individual and judging themselves or others by how they react is wrong...you have to "just be" whatever works for you...there is no right or wrong way to deal with snizz (my word for shit as I've said it a lot recently)
Mum is..well she's a character and basically dismissed the "it can't be cured" and responded with "oh don't be soft it's just a chest infection" but later that day broke down when taking the star off the Christmas tree.
Time is a great healer but sadly not in this case... time will hopefully just do it's best to make things less complicated and give us time to learn how to approach...deal with and except...for now I remain a robot
Thank you for all of your replies and kind words xx
I'm so sorry and there is nothing to say that will help - sending you virtual hugs.
This may be too hard for you to answer but is it slow growing? Do you have some idea of time scale? That is a help and a hindrance - but when my brother in law had a slow growing tumour he would not acknowledge it, insisted his wife did not tell anyone and the children didn't know until just weeks were left, they thought there will still months to "get things done", I don't know that the daughter knew until he died, she'd been out riding and he died a few minutes after she came home and she was very upset she might have missed it.
Don't make that mistake - enjoy every moment you can while it is possible. My SIL died just before Christmas - and unlike her husband she seized every opportunity to be with her family.
Celebrate what you have had and have for as long as you can. xxxxxxxxx
It is 6 mts since this post and I am just new to all this ..to cut long story short was suddenly diagnosed 6 th June out of the blue x ray for back pain at night when I lay down .....right lung glands above my chest right side and fluid all cancerous ..was told last week I would not see Christmas ...I have no cough feel and look normal 2 paracetamol 4 time daily controls the pain well mostry ...this week light at the end of the tunnel I may be suitable for a new trial so fingers crossed and I will grab my chance with both hands ...it could give me 1 year or more .yippee.. 50 perchance that's better than no hope at all ..
My goodness, that must have been hard to get your head round! Let's hope you are suitable for the new trial. We always have to have hope. Good luck, be thinking of you xx
Mum has had chemo but didn't respond to that...then radiotherapy...now immunotherapy she's on a lot more pain relief now and weight loss very apparent she has a scan in 2 weeks so will know if it's working then...I wish you all the very best for the trial there have been some amazing results so stay positive my thoughts are with you x
Thank you so much ..I hope and pray that your Mum has some positives results ..you seen to be a very caring daughter and you are both lucky to have each other...never give up hope ..treatments are improving almost every month rent lung cancer T.g. you give me more hope than you realise as your Mum has been living with this disease for a few years as far as I can gather and that itself is wonderfully encouraging to me ...bless you all ..I will keep you in my thoughts for Thursday .x
Thank you so much for your kind words of encouragement it really helps a lot ..I hope your Mum has good results at last ...Never give up ...I won't ...xx
Quick update: Mums immunotherapy stopped 5 weeks ago as it wasn't actually working they think it was the radiotherapy that made a don't in the tumour but now it has spread further...next appointment is Thursday to see if there are any more options
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