My Mum was diagnosed with OC in 2019, after receiving Chemo treatment (having a very rough ride she came through it). Covid has been tough for her as she had to shield after just beginning to live again. Her OC is now back and she has had a first dose Caelyx, a new drug to her. In the last few days she has felt awful but not enough to hospitalise her like last time. But she has said to both me and my sister that she doesn’t want to talk whilst she is unwell. On Tuesday my world was turned upside down when my son was rushed to hospital with internal bleeding, had a blood transfusion and needed surgery to save his life. Then whilst he is lying seriously poorly in a hospital bed my sister tells me whilst I was updating her on my son’s condition, that my Mum is giving up her chemo after just one attempt. Not just this but ALL Chemo!
To create a picture she is spending all her time in her room and choosing to not talk or text family members, no Tv radio or anything to do. Hardly talking to my Dad at all.
So please can someone explain why she is giving up? When well, she is social and busy and she has a family who loves her very much, she is mid seventies.
My thoughts of writing a letter is the only thing I can do, but I need your perspective. Both me and my Sister are so angry with her right now, and it’s raw for me because I would have given my life to save my son, yet we are somehow not worth considering in all this.
I’ve no doubt she is depressed, but what can I do when she won’t talk to any of us.
I am not close by, so can only call her.
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LittleMissMerit
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Hi, I am so sorry about your son and mum. I hope your son is doing well. My situation sounds similar to your mum although I am 54. I was diagnosed Sep 2019,: went into remission March 2020 and just had first caelyx after recurrence and am feeling nauseous! Anyway after initial diagnosis I probably read too much and took myself too far into the future. I was in a terrible black hole of anger and despair. I sought help from ladies on this site and at first the only thing that helped me was thinking it was me and not my child who was in this situation. But the anger and despair was terrible. I lay in bed with a blanket over me, didn't wash ( became afraid too), became afraid to go out. My husband pretty much dragged me through this time with help from my mum. At one point I told a chemo ward nurse that I didn't want treatment ( although I did have it) . I was persuaded to speak to Macmillan psychologist but they just annoyed me ( because I wasn't ready). I was given anti depressants from gp which helped a bit after few weeks. I had suicidal thoughts and plans. It was horrific. my sadness was overwhelming- I felt I had lost everything I wrote it all down in a journal, which I left in the kitchen and I later found out my son ( then 25) had found this. I noticed he had been strange with me, a bit angry I suppose and one day he said gently and kindly that unless I accepted things I wouldn't be able to move on. He was right I was fighting the situation rather than trying to work with it.. With time and a massive effort from myself, family and friends I have been able to shift - although a large part of shift also came when the cancer because operable in Feb 2020. I do a lot of things now to try to help my mental health, I try ( which is very hard) not to think ahead to stay in moment, I go to free cancer yoga at triyoga ( online), I do all that I can to care for my family and friends by being in contact and trying to be kind to them. I am really kind to myself. It's very hard and a constant battle but I want to make sure that if something happens to me I will be remembered as trying to be brave and for me not the disease. I also have done things to plan for the worst, all paperwork is done, arrangements are known by my husband, I am knitting blankets for those most important to me and am about to start a memoir for my children and husband. I think to outsiders that maybe this sounds negative but it's important to me, it gives me a sense of purpose and I feel I am trying to help those I love. It also gives me control of that I can. I do however also do as much as I can , walks, gardening, zooming, etc to live my life.
Anyway your question- has anyone been able to find out why she wants to stop? Is it because she feels so I'll or thinks there is an inevitably to her situation? Has she got a csn nurse who could talk to her or gp? Will she take antidepressants? Does she access this invaluable website where she will find she is not alone. Or maybe write her a gentle letter telling her how much she means to you and how you need her to keep going. I get lots of positive things from friends - messages, cards, affirmation cards, home made soup , help with my knitting- maybe you could get everyone to rally round her and make her feel valued (( I didn't think I was of value at diagnosis and for many months) . Living with real uncertainty is a fight every day and it is very hard, but no matter how she is I have no doubt that she loves you as you love your son as only a parent can. Anyway a long reply but I hope it gives you my perspective
Thank you for this, I did tell her about this group, and she was pleased that it helped me cope but said it wasn’t for her. I don’t think that’s true, I feel she needs people like you to talk to, because laying at home in her bed just thinking of the pain isn’t going to help. As it happens she is feeling quite unwell today, 2 weeks after Chemo, so my Dad has got the paramedics in now, and she’ll be off in to hospital so they can find out why she is having chest pains.
I don't know her but I think you are right it's helped me to know I'm not alone. I hope she's ok, she must be so exhausted and fed up from chemo side effects , I hope you find a way to come through this time and that your son is ok.
I’ve sent a text to the McMillian nurse to call me back because she was the last one to talk to Mum, I do think her mental health has spiralled. My son and I came home last night, I guess I am feeling a bit raw, and angry. I just have to concentrate on looking after him while he recovers. Because right now there is nothing else I can do.
You are in a terrible place, take control of all you can which is looking after your son, I'm sure you're mum would want you to focus on this. You've contacted the nurse and your dad is there so you have done all you can for now. Maybe if they can get pain and side effects under control she will be in a better place to be able to access support. Good luck.
So sorry to hear about all that you are dealing with right now. You have some good advice from others...find out what she wants and maybe why will become clear. There are people in this group that have made the decision not to have more treatment because wanted to feel normal and have time with their loved ones... but she will have her own rationale. Big hug to you...what a difficult time xxx
HiUnless your mum is prepared to open up and speak about her fears or concerns you may not get the answers, being angry and frustrated and may be even worked up is part and parcel of the situation you find yourself in.
Whilst undergoing chemo last year I lost my mother, my mum was a social outgoing person more than I am, she began retracting bit by bit ( she was in her early 80's) no matter what my brother and me said never seemed to make a difference we took her for eye tests hearing test and to the GP, with the I'm going chemo I was pretty direct with her about what ailed her but as she told GP and her kids nothing is wrong, she had every thing she needed both my brother and myself protected her from covid as best as we could.
April 2020 my mum passed away we knew it may have been coming but again you don't want to think about it ...covid measures were not helpful we finally got the results of the autopsy she had metastatic pancreatic cancer she never ever told us she was ill in fact she had never had any health issue as the GP said good innings for someone of her age, unless someone tells you their reasons or they are ill or hurting you cannot know the reasons for why they are doing it their way for want of a better word.
I hope your mum does open up but some times as close as you are they won't as in the case of my mum, because they do not wish to burden you or there just comes a time when they feel the fight is over, the latter is the hardest for me, as I battled tumour removal and chemo as I fought every step of the way, but now coming up to my mum's anniversary I can understand the why she may not have said anything sometimes you have to understand where they are at the precise moment, I hope you get the answers from your mum but above all spend the time just chatting even if she does not want to do that, your part is just important for you to complete.
Your mum sounds as if she may have what’s called ‘reactive depression’ to her cancer returning and she would probably benefit from seeing a Dr about it. Not that it needs to change that she’s decided on no more treatment, just that if the depression is treated and she still doesn’t want any further cancer treatment she and yourselves will no she made the decision when in a better frame of mind.
Weirdly she was very calm this time over the news that it had come back, she said she’d been feeling unwell for a couple of weeks. A couple of weeks to think about it I suppose, and deal with it.
The chances are that she became depressed very soon after the news she received. I would say to her - mum it’s highly probable that you’re depressed as a reaction to what you’ve been told given it must have been a terrible shock and I’d like you to see your Dr.
I became depressed within days of my diagnosis. I also started having massive panic attacks and I’ve been medicated since day 6 of my situation.
I'm so sorry you're all going through such an awful time.My mum behaved in a similar way when she had Oc. She was actually terminal when diagnosed. She refused treatment and shut us all out.
We were all so worried, hurt and confused and yes angry that she would fight.
Looking back I think she was going through the grieving process.
She did soften towards the end and we spent some quiet time together thankfully.
I now have a form of oc and I reacted in a similar way when I was diagnosed though I didnt refuse treatment.
I was convinced my case would be the same as Mum's. I felt so angry and cheated and although family were all doing their best, to me they just couldn't possibly understand what it was like for me...i felt they were just going to get on with their healthy lives. The cancer put a wall up between us.
All very unreasonable of me, very selfish I know but that's just how I felt.
I dont know if it's anything like that for your mum but I just wanted to let you know that she isnt alone in not reacting or behaving as you would have expected her to.
In the same situation some women will be so brave , come out fighting start a bucket list . Other arent so brave I'm afraid or maybe just think what's the point in trying to fight it, particularly if they have found treatment very gruelling.
Maybe that is a form of depression.
You obviously love mum so much and want to do all you can for her. The fact that your son has been so unwell too must have put an incredible amount of pressure for you and I can certainly understand your anger.
I think a letter might be a good idea if mum wont speak to you... but without pressuring mum. Just keeping lines of communication open. Maybe she would consider talking to a Macmillan nurse or a dr about making her feel more comfortable if she has symptoms and feels unwell. That in turn might help with her mental health.
Sorry such a long reply.
I really hope you son is recovering well and hope that Mum and you all find a way through this together.
Thank you, I just knew I would get help on here, and advice. My Dad didn’t think a letter would be a good idea, but he IS a man🤷🏻♀️😂(so I’m going to ignore that. I’ve been out this afternoon and bought a note book. I’m going to use a bit of everyone’s advice on here and leave it to her to write what she wants in her book. At least then I know I’ve tried.
I'm going to give a rather different perspective on this situation, want to paint a picture of what's its probably like to be your mum right now, but first let me say, I hope your son is now fully recovered, that must have been a terrifying experience.
Trying to mentally deal with a diagnosis of OC is not easy, as I'm sure you can imagine. Clearly your mum had the first lot of treatment, difficult though it was, and then carried on with her life. But now, its back, and the chemo they've given this time has made her feel absolutely awful. And she is staring into the abyss, the black hole she's been walking round since her diagnosis, because she knows, without treatment, she will at some point die, and it probably won't be pleasant. But she also knows the treatment is awful, and she's probably thinking is it worth it, why bother, because its not going to get rid of it, it will be back even if I make it through yet more awful treatment, meaning she will still be staring into the abyss, just a bit later on. You say she is in her mid seventies; she is thus also aware that, because of her age, she is much closer to death anyway, even without having OC; that particular aspect is very difficult for people in their early sixties and below that age to grasp.
Taking the decision to give up any further treatment is brave - most women wait until they're told there is nothing more to be done. But that decision needs to be made with clear sight and a clear mind; she may not want to talk to family because, naturally, she knows her family want her to survive, regardless of how terrible or not any treatment might be. She also knows that even if she seemed in reasonable spirits and had logically or reasonably come to the conclusion that she wants no further treatment (a choice she is rightfully and fully entitled to make) and said so to you all, there will be a lot of pressure for her to change her mind, and she is not ready or in the right headspace to deal with everyone else's wants and needs, she's got enough trouble trying to deal with herself. Right now, she will be avoiding contact with anyone who may bring pressure to bear because she is unable to cope with it.
The most useful thing that could be done would be for her to see a psychotherapist, in case she has plunged deep into depression - if you are in the UK, the Macmillan service via the CNS at the treating hospital always has one on team she can be referred to, if she will agree to go, though it might be wise to check first whether that is the case currently, given Covid.. So the only suggestion I will make is that you lay aside how you are feeling, and suggest to her only that you will respect and support her decision in respect of treatment regardless of what it is, but really do believe seeing a psychotherapist would make her own journey, whichever route she chooses, easier to bear. I availed myself of this service after my surgery - the oncologist thought I was depressed because I refused chemo, but after seeing the psych, her report said I wasn't depressed, I just needed someone with no 'skin the game' so to speak to listen so I could achieve clarity. Which I did. If she refuses that, well, so be it.
I am now in a similar position, and will be offered, sometime in the next few months, Caelyx and Carboplatin as further treatment. I am not sure I will take it, frankly, but will see how things stand when I get there. Both my sons, luckily, have been supportive of the decisions I've made with barely any pressure to steer me in particular directions, a fact for which I am heartily thankful. I am 70, its my life and my death, and its my choice to make is how I feel - but that does not mean it is easy, far from it, I no more want to leave my family than remove my eyeballs with a fork, but sometimes, there is little choice when you are between a rock and very hard place - ultimately, of course, there is no choice at all.
I hope what I've said may have given you some insight into what it likely feels like to be the person that is your mum... in the meantime, take care of yourself and your own family, because that you can and are able to do. These things are very difficult, and you may perhaps need some support yourself to cope with the situation🙂
Thank you so much for what you wrote, I read your letter out to my Sister because it moved me so much. She said it’s so like our Mother. I have spoken to the McMillan nurse this morning and she is going to send one of the Oncology team round to see her today. I’ve also sent her a text (her phone is now on), to say two things, when up to it, speak to someone about how she is feeling, and secondly whatever she decides about her fate, I will support. I know now I can do no more than this. The rest is entirely up to her.
I'm glad if it helped... its all a nightmare really, isn't it. Just make sure she knows you love her too...though she probably does know that already, it doesn't hurt to say it again🙂
I have sent her a text telling her so, she’s has a chat with someone as well as telling me she loves me she has promised no hasty decisions. Thank you, you family would be so proud knowing you have helped someone in need x
Hi Miriam, I hope you are well, I managed to see my Mum at the weekend (we live about 100 miles away), so it was the first time my two boys had seen her in over a year because of Covid. She looks well on the outside (better than he previous Chemo left her looking), but she says she is still feeling rubbish all the time, but I am still worried about her state of mind. My Dad told me the Doctor was very direct to her on the phone about the way forward to get out of the pain she is feeling, which I think was a good move, (I had spoken to his secretary about how low she had been feeling a few days before as she had a weeks spell in hospital with Pericarditis).
After chatting with Mum on Sunday I really think she is on a downward spiral, she’s not happy with anything my poor Dad is doing for her, down to the ready meals she requested being oven cooked and non microwavable, and going on about another bottle of the juice she had at the hospital, and sending him out to see if he can find that particular type, and he is really trying his best to help her, but my goodness is she making it hard for him. She is coming down stairs (which is better), but basically sitting on her chair with her feet up and hardly moving at all, she still isn’t really talking to anyone much, except my Dad and the McMillan nurse. Yesterday she spoke with the McMillan nurse and said how she wasn’t impressed with the lackadaisical care given on the ward of the palliative care ward, it’s not as good as the time before. Then she asked about the facilities at the hospice and if the hospice would provide such things like transfusions! My Dad said the nurses eyes nearly popped out of her head!
It’s almost like, she is so poorly and thoroughly miserable she almost wants everyone to share her experience of melancholy, I don’t think that is fair at all, but you gave such a different perspective last time, perhaps you have more wise words for me to decide what to do. Right now all I can see is her dragging my poor Dad down with her, and he really doesn’t deserve that at all. My Sister has been buying her foods, cooking bits for her, but she is either complaining or refusing to touch it. The nurse has told her she isn’t drinking enough, which doesn’t help the constipation that she is already suffering. Right now I can just see her on purpose withering away in-front of my Dads eyes. I am still okay with any decisions she makes but to make no effort at all, and be difficult at every good deed, makes me very angry with her. She will be talking face to face with her Doctor at the end of the month before deciding what to do. It’s going to be a long few days for my family until then, waiting to see what she will decide to do. Not sure my Dad’s patience will stretch that long.
Hi. I am so sorry for what you’re going through but I think you need to distinguish between a temporary depression which could be addressed with counseling and medication vs a rational decision not to continue treatment. I was very depressed when I had a recurrence and my oncologist said I would never be free of cancer. As it happens I got through the chemo and went on a PARP and have been on it for a year. The cancer disappeared two months after being on the PARP. But it would help if you get let your mom talk without judging her. It might be hard but she has to figure out what she can tolerate. I found frontline chemo almost intolerable. I have decided that when chemo stops working I will not keep trying one thing after another because I want quality vs quantity. If you say in the letter you just want to listen and won’t push her that might help. Good luck. Xx
You are having a tough time aren’t you. I have told my 2 daughters that I’m not going through that gruelling treatment again if recurrence happens.Maybe your mum feels the same and has accepted her fate. This is hard for family to understand and my daughters felt like you do.Give your mum time to get her head around everything, it must be such a shock again. She may change her mind when she has discussed the options..She is lucky to have a daughter like you.Good luck to you all.x
There’s a world of difference between deciding enough is enough, no more treatment, I’m going to live the rest of my life as best as I can with as much help as I need and just giving up, not even watching television, reading etc.
Doubtless your mother hoped against hope the first treatment would do the trick (most of us do) and now she is distraught that’s not the case.
She needs some kind of phycological help to help her decide what it is she really wants, but simply lying in bed is unlikely to be her first choice. You’ve had a lot of good ideas here. Hope they prove successful.
Just chiming in with hopes that your son is on the mend so that you are under less stress. As far as your mother, I think when for whatever reason you go through a dark night of the soul and face your mortality, as an adult you should be allowed to choose how you will respond, whether it is to pursue medical interventions or quality of life or even just relief from pain and fear. As others have suggested, figuring out whether she is speaking out of depression may be key. For me, spending some time with palliative care staff helped me greatly in figuring out what *I* wanted to do, in circumstances that seemed dire with the prospect of poor quality of life at best. In the end, I got a reprieve and came through to a more hopeful place. Now I feel like I can hope for the best, but I am better prepared for the worst or wherever my path leads. I hope all the best for you and your mother as you seek to support her. Deb in Colorado
I’d like to thank you all for your kind words throughout, my Mum is close to being at peace and pain free. I saw her two weeks ago at my parents home with my two boys. The day after she was taken in to hospital, it was their wedding anniversary the other day (I always forget), not this year. My Dad even took their wedding album in to show Mum the photos. A few days before (when she had the energy) she blew my Dad a kiss.
I’d never have described them as romantic but this melted my heart.
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