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Terrified and alone, please please hand hold?(26 Posts)
My DM has been sick for nearly two months and on Friday we learned that it was likely ovarian cancer that has spread all over (including lymph nodes and lungs). She is only 57 and was previously fit and healthy. Her breathing became poor and she wasn't eating well so they admitted her yesterday after an outpatients appointment. So far she's recovered well and is like her old self.
We know that the cancer has spread to the point where she will not get better, but I'm getting the impression from doctors and nurses they won't even try treatment? They have not yet even referred her to an oncologist, and they seem to be moving really slowly. This is obviously terrifying because surely the sooner they begin treatment the more they can slow it down and the more time we have.
I am also struggling to deal with this - I can't get any RL support until my mum has told her nearests, so I am battling my thoughts and fears constantly. I also live in a city a few hours from my Mum, although I am with her now, I will return tomorrow for a few days then go back. I can't afford to not work in my home town but I'm scared that when I return to work I won't have the flexibility of time off to assist my mum and come home when I need to.
I'm scared to think about the little time we have left, especially if they do not treat her? Surely they must offer something to put it at bay - I know it's very late but they must try? She is so young and has recovered well over the past few days! Does anyone have any methods to keep my anxieties down and deal with the news both practically and emotionally? I did not expect to be dealing with this before I reached thirty or forty even.
. I am sorry, this is very hard for you. My only suggestion is that you talk to and listen very carefully to what your mother wants and give her all the support she needs.
I'm sorry Have you considered contacting MacMillan? I've heard that they can be supportive. I'd like to think any reasonable employer will let you have emergency time off as and when required.
Do you have a partner, or any siblings, or even a close friend? Losing a parent, especially young, is an emotionally difficult time - try to take care of yourself.
Thank you we have only spoken very quickly because we've barely had time alone since we found out. She has said she will trust in the doctors decision but also said she would like treatment. I'm just scared they will offer treatment too late or not at all. I can't seem to let my mind rest.
Yes, I live with my DP in another city, my brother lives in the city with my Mum, and I have close friends in both places. My Mum and I also have a strong family network. I can only tell DP and my brother knows also, as well as a few family members. I know she has a lot of people to look after her and is okay with me going home to my city now and again, but I worry about spending time away from her. I want to spend all the time I can with her, hugging her and telling her I love her, but also I miss my DP and I can't wait to be in his arms tomorrow where I feel I can truly let my emotions out.
A Macmillan nurse saw my Mum today to tell her how they would treat the symptoms of the disease but not the disease itself. I went outside with her to talk about what this meant, and she did say that although it is life-limiting and incurable due to how far it has gone, they may or may not consider chemo, or another treatment if her body is not strong enough. But I know how well she has recovered since she came in, I really just want them to get an oncologist involved and get the ball rolling for something, anything. They can't just leave her!! She's so young and fit
Oh gosh I feel so sick some people are saying their parents went 6-8 weeks after diagnosis I'm not coping at all
This is so terribly sad. for you, your mum and your families.
I don't have any advice but wanted to send my thoughts.
Sending sympathy and saying it does sound bad if cancer on both sides of the diaphragm and there should already be an oncologist involved and nowadays they seem to give patients the choice of whether or not to have chemo
You want to be with your mum. Thats really nice. Sometimes work will give you time off. You could take annual leave?
I'm so sorry, OP, what awful news to be dealing with. No wonder you're anxious. I have some experience in this area and, without obviously knowing the specifics of your Mum's case, please know that cancer treatment protocols are very evidence-based, and if there is any therapy that has any reasonable chance of helping her then it will be offered to her. I know that every hour can feel like a lifetime when you're waiting to hear what the plan is, but with cancer treatment it's rarely the case that a few days either way makes any difference in the long run. It's likely she'll be seen by someone from the oncology team over the next few days and they'll discuss options with her.
Please do take care of yourself - you're dealing with a devastating diagnosis and you'll need support too. Go home and hug your DP
I'm so sorry op.
I know how you feel. My mum too I'm also an hour away in another city.
I also wasn't expecting to deal with this at this age.
All I can say is, be there for her as much as you can. And post on here as we will be here for you and each other
Oh I just broke down reading this, so it's okay to wait a few days? I know I will lose her - but in a sense I was always going to lose her, it's just I'm dealing with it now and it's a reality not a hypothesis.
6-8 weeks I can't deal with that at all, if they don't treat her I don't want to even stay alive. I have nothing to stay alive for. at least with a bit of treatment we have time to do things, she might even see my niece start school in September.
Cel982 - how often is it the case that there is nothing they can offer at all? She hasn't even had a biopsy, why are they being so slow? They have confirmed that it is too late for surgery but if they offer chemo it will be to prevent it going any further - but what does that mean? They slow it down and prevent spread but then what? And if chemo doesn't work they will try other things but her breathing must be better. But it is!! She had a rate of 96-98 today after one day IP with pills and oxygen. Does that bode well? I really want to speak to the oncologist, I'm going crazy.
@ house so sorry you're in a similar position how is your Mum atm and how are you coping? Please PM me at any time, I know how lonely it feels.
Oh Fauch I feel so bad for you and your mom. I can feel how frantic you feel. Been there.
No advice re dealing with doctors. But I hope your work allows you time off. Be with her as much as you can.
You will be ok but it's a rough road. Take care of yourself.
OP I've just had a look online for you.
Here are a few places that should be able to offer you information and support
Cancer is something that has affected our lifes both on my side of the family and my DH's side of the family.I've also had a close friend fighting her own battle against cancer and I now have to have tests done on myself.
I am so sorry about your poor Mum I do know some of what your going through.Try and have a look online,I found having a little note book and writing down the questions I needed answers to the most was really helpful when I was speaking to any of the nurses or Dr's at the hospital,it was also really handy having it wrote down incase I was to upset to be able to talk to them.
What you've said about yourself you do sound like your suffering with depression because of what has happened and I'm not surprised trying to deal with something like this is something none of us can really prepare ourselves for.But please don't do anything to harm yourself,You need to speak to someone,talking to your Dr would be a really good start they can offer support and information about what's going on with your Mum and support for yourself and for the way your feeling.
With work do you think being able to take some time of would be of help?or do you feel like being at work will help?If you feel like you need some time away from work then I'd talk to your Dr about it,they can usually sign you of for a while.
At the moment I just finished a temp job but I need to pay my rent for at least 7 more months so must work. The other issue is my mum is my guarantor. In the worst case, what will happen with my contract? Will it be null? But yes I must find work in my own city but this is a conflict because I want to stay home with my Mum. Ideally I will find something with a few hours per week so I can run to and from.
Sorry I posted too soon. Anyway I don't know how I will manage with this financially. I also think the shift in circumstances may make it impossible to stay with my partner.
Thank you for the links, I need a lot of support. I do have depression, an eating disorder and AS anyway but I'm not with any team. I think I will arrange to see a GP ASAP. I feel so sick every time I think that there's a possibility we could only have a few more weeks.
OP I'm so sorry.Not much helpful advice re the diagnosis etc, but re the guarantor situation, I imagine they'd only find out if you defaulted and they pursued your mum. I really feel for you, my mum is the same age as yours (I personally am a bit older than you) and I know I'd be devastated. I would save up your accrued holiday and then take it as sick if you need to, you can self-certify for up to 7 days.
Please don't make any rash decisions about work or your partner or anything else, OP. This is all very new and you're still in the first stage of shock and grief. By this time next week you should have a much clearer picture of how your Mum is likely to be over the next while, and you can start to make plans then.
Writing down your questions is a great idea. When you're with her next let the nurse know that you'd like to speak with her doctor (if your Mum's OK with this, obviously) and they should be able to arrange that for you. It's never as quick as you'd like, I do understand that, but from being on the medical side of things I promise you there will be lots of things going on in the background - referrals and team meetings and so on - to plan the best course of action, even if - as a relative - you don't always see that activity taking place.
Dear op, I had to reply to you because I so recognise your fears. In October last year, my mums breast cancer returned, after 13 years from initial diagnosis. It has also spread and is now considered terminal. The shock and fear in the initial days and weeks is just awful - you just can't describe it. But I wanted to say that this initial shock and panic does subside and you start to live your new normal (sorry if that sounds crass to you at the minute). My mum is also young, only 64 and just retired, and was so sick when she was admitted to hospital that I just didn't think she would ever come home (she even spent some time in a hospice to get her sickness under control). She has now had a stent put in her bowel and has a quality of life we could never have imagined when this all began. She's too weak for chemo but has had a small number of radiotherapy sessions to ease her pain and is on steroids to slow the growth of her tumours. She's now out and about and enjoying simple things like going for a meal etc. This is not a cure and we don't know what will happen going forward but it's giving her some time and that is precious. So I just wanted to say, take one day at a time and be guided by the specialists and what your mum wants/needs. I find it too frightening to think too far in to the future and so I am simply enjoying each and every day that I have with her. That's not to say we are living in each other's pockets - we're not because we never did before but it's changed our whole family's perspective on life and what is really important. You will be ok and will be braver than you could ever imagine x
OP I'm so sorry for you. My mum is just 60, and though we've been living with the diagnosis for over two years now, it doesn't get easier. I also feel your unease regarding having to be away from her to work. Until you know it's the end though, you need to hold off on any decisions. If you've just finished a temp contract could you claim any benefits for a while?
I do think you need to remember that all cancer patients have different experiences and their journey will vary depending on all sorts of things. My mum has been terminal for more than a year and a half - although we've never talked about that - and so much good had come of the past year. There are also non-standard routes to treatment. If you're in England or can fudge together a move, there's the cancer drugs fund. If your mum gets reasonably well again, her oncologist can find out if there are any trials she might qualify for (that's what my DM was about to do when she fell ill). But more than anything you need to find a way of making your own life seem worth living if you do lose her. Please see your GP - mine has been wonderful.
I'm sorry to read your news, OP.
There are a few cancers, ovarian is a classic one, that can grow and grow without being noticed and by the time it is diagnosed, there is little that can be done.
My DF had bladder cancer, that had also grown to be very large before it was discovered and he was offered chemo, but it was of little use and didn't affect the size or spread of the cancer. And it was a tough thing for him to endure. They might not offer chemo if they have indications that the cancer has spread to a degree that it won't have any true benefit to your DMum. It's a very scary position to be in. You feel helpless because you just don't have all the information you'd like to be able to make any decisions. It's worth talking to Macmillan and perhaps going to an appointment or two with your MUm if at all possible to get a bit of information. Dad wanted company on all his appointments, which was difficult when we were there as he received his bad new diagnosis and prognosis, but a comfort for him to have someone there. And we felt quite informed about things. I'm not sure it helped the feelings of helplessness though.
A friend has secondary cancer, in her liver and her lungs. They weren't going to offer any chemo, but she did push for some treatment and they did put her on chemo. It has affected (for now) the ability for her to breathe more easily and was worth her going through so perhaps it's worth pushing to ask if there's any treatment that can be given, even if palliatively.
Dad was then given radiotherapy to attack the tumour even after they'd decided he was terminal and had only months left. It did give him a level of comfort in the time he had left. The specialist gave him months, then revised it to 'months to a year' (I think when they saw his devastated reaction) and, true to their prediction, he passed away 4 months later. Due to the treatment that did allow him some comfort - his tumour was in his bladder and had grown down to his perineum so he had great difficulties even sitting comfortably before the radio - they were difficult months, but ones where lovely memories were made and practical matters sorted.
Oh it's times like this that reminds me how wonderful MN can be. Thank you so much everyone. Best wishes to everyone dealing with this in their lives. What an absolute bastard cancer is. I saw her today before returning to London and she was out of bed and breathing well. She has met a lovely new agency nurse. Although I'm not religious, my Mum and family mostly are. The nurse is a Seven Day Adventist and gave my mum lots of comfort, and I like that she has something to believe in at this time. Although I can't believe in a higher being, I believe in my Mum. Although I know the outcome, she had a severe brain haemorrhage eight years ago and survived, together we've battled my illnesses and her illnesses so I believe in her ability to fight.
Also, the Macmillan nurse saw her again today. She said that we mustn't get anxious just because we can't SEE them sorting things because they are analysing lots of options behind the scenes. A biopsy will probably be done soon. I am so relieved! Nothing is worse than not knowing and being alone with your thoughts to wind up at the worst possible conclusion is it?
jennifer I had heard about clinical trials. I might mention it to her. We are both in the UK. She doesn't really want to research because understandably she is scared whereas I like to 'prepare for the worst and hope for the best'. I will try and find a good GP, I'm not happy with my current one and he's not local so I'm going to sort that soon. Now I feel more positive, I know that I must fight on after the worst because I have to be a strong example for my niece. I want to teach her all the things my Mum taught me.
cel I'm going to start writing things down when I start panicking in the night, both questions for doctors and my thoughts - so that if I get counselling its a bit more easy. I tend to freeze up during talking therapy and draw a blank where I don't know what to say or how I feel so at least if it's written down I can open up more easily. You are so right about the work behind the scenes! That's what they've been doing, I really just thought they were waiting. I find it really hard to let go and trust completely, and this is such a free fall in terms of trust. My mum, as you can tell, is so so dear to me, she is my life and has raised me singlehandedly, has been there for me and is the person I can turn to no matter what. She is so loved by so many people, so being able to let go and trust completely in her medical team is such a big step when things are out of my hand but it's something I must learn to do. They are great and I know they want the best. I just have to let go of my anxieties.
teawhite your mum sounds incredible! That's reassuring to hear, I was expecting just a few weeks more of her slowly declining. I really want her to be able to go to the theatre or for a meal or to church, the things she really loved to do but I thought she might never get to do that again.
I'm so sorry. That sounds very advanced. Chemotherapy is very harsh. You are literally killing cells in the body and it's very hard to endure even if well. Do talk to the team involved in her care and ask what the plan is.
charley thank you so much for responding, i'm sorry to hear about your Dad but it seems like you really did make some beautiful memories in the end. You're right about the appointments being difficult, you don't want your loved ones to face it alone but you also can't take the grave looks on the doctors faces but at the same time if you're there you all know the same information. There's no "what else? They must have said something else? Why didn't you ask xyz"
I do hope that treatment can give her more time, but at the very least more comfort to enjoy the time we have left.
I hope your family is holding up okay now x
Clinical trials aren't all they are cracked up to be, either.
Dad was sort of talked into/convinced that his best chance was to undergo a clinical trial drug for his chemo.
It meant a delay in starting as they wanted baseline results. Then more appointments along the way. They meant that Dad felt that he was being taken care of, but it was a great burden to him, to have to keep up lots of appointments.
When he was told it was inoperable, then told that the chemo hadn't achieved anything he was FINALLY told that the drug only really had about a 30% chance of making any difference anyway. I'm torn between feeling happy that he was allowed the hope of the trial and annoyed that he felt rough on his chemo and it was unlikely to have helped him from the start. He certainly took the news badly when he was told the odds he'd had from the start.
It's a terribly tough thing to go through, OP, and I wish you strength to deal with it.
Hi, it's me again op. I wanted to pm you, just to say hi. It's always the worst at night isn't it? But I don't know how to on the mobile app.
Just wanted you to know I'm thinking of you xxx
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