Mum is dying of ovarian cancer and I am in denial

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11 posts since

22 May 2017

Just over two years ago, my amazing mum was diagnosed with stage 3 ovarian cancer. She had a hysterectomy and chemo but the cancer kept coming back and she was placed on a trial to keep it at bay – about a month ago we had just had some great news that she was down to two very small tumours that were shrinking with treatment but we recently found out the cancer has spread to her brain.

She had static radiotherapy and we thought she was just suffering with side effects but two nights ago she was taken to hospital with pneumonia. Since then she has been so weak and she can’t breathe unassisted. One of the nurses basically suggested we remain on standby but when I have been calling the ward they just say she’s looking better or she’s not had a great night, basically not breaching patient confidentiality but I am too scared to ask anyone for the truth as I am trying to stay strong for everyone. Mum says she has no intention of “going anywhere” so I have downplayed the seriousness of it to my younger siblings and her family but it means that I have no one to truly share my fears with so I guess that’s why I am writing here. 

I feel like if I truly face up to what is happening then I am just going to crumble and be of no use to anyone. I want to stay strong and stay busy but the horror of what is happening keeps on hitting me over and over again and I feel like I am already grieving for the strong, funny, witty and indepedent person that my mum was and sometimes still is. 

Alongside all of this is just the fact that I feel so cross at just how wrong this is. I would never wish this on anyone ever and despite the fact that millions of people have been through the same thing, I feel so alone. I was 21 when my mum was diagnosed and the thought of losing her so early just fills me with shock, as if something like this shouldn’t be “allowed” to happen. It truly feels like my heart has broken.

273 posts since

14 Jun 2019

Hello sweetie – what a horrible time you are having & I’m so sorry your lovely mum is so poorly. You did the right thing posting here because lots of us know how you are feeling. It’s a scary & lonely place to be & it is normal to feel like that & also to be angry because it isn’t fair. In fact all of the feelings you describe are perfectly normal. What matters is how to cope with those feelings & all I can tell you is that somehow you will find a way to do it. You’ve already started by acknowledging them to yourself & sharing them with others & it’s a good start. Don’t be afraid to let your feelings out. You say you are downplaying it to your younger siblings & I do understand why you want to do that but it may not be the best thing to do either for them or for yourself. Do give them the space/opportunity to express their own fears (they will have them) & share your feelings with them. You don’t say how much younger than you they are but if they are pretty close in age you’ll all be able to help each other through whatever is to come.

People, you know, even young people, are stronger than you might think & they might well feel just as you do & don’t want to upset you by telling you they are scared. 

So, try to accept what you feel is normal, try to share your fears etc. if at all possible, & know that somehow you will find a way of coping difficult as that might seem just now.

I will think of you & wish you & your family all the very best & sending you a virtual hug & a reminder that you are not alone. x

11 posts since

22 May 2017

My mum calls me sweetie so that was a lovely way to start reading your message – it’s like having a bit of her with me. 

I have tried to speak to my siblings about it a little, but they have admitted that they would rather live in denial and I just have to accept that – apparently they are speaking to people online (like me!) so as long as they have found some kind of outlet for their feelings then that is ok.

I’m just spending a lot of time with my mum and trying to accept that the awful, awful way I feel is simply inevitable. I’m just heartbroken and so upset that my amazing mum will not be here for much longer, although she has reassured me that she’s not scared and she’s not in pain.

It’s also difficult because she is showing minor improvements and it is so very hard not to cling onto these and live on false hope. It doesn’t seem right or fair that anyone should go through this kind of heartbreak in life.

Thank you so much for taking the time to send some comfort and advice my way, it’s things like this that make me feel a little bit less alone. xx

273 posts since

14 Jun 2019

Hello agan sweetie – I’m glad my post brought you at least a little bit of comfort. It’s good your siblings have found some support too. Your mum says she’s not scared or in pain & it’s very likely that’s true & so important for her & for you. I do know from experience that many people are able to face the end of their lives at peace & it may be the case that before very long you will learn to accept what is happening & come to terms with it. You’re right to say that it doesn’t seem right or fair but sadly it is part of life & your lovely mum brought you into the world so you could live a life good & very sad too.

Spending  time with your mum is the best thing you can do for her & for yourself. Do tell her everything you want to say & later it will bring you more comfort than you realise. I managed to do that when my mum passed away a couple of years ago & it has helped.

Do keep in touch if you think it helps a bit. I’ll think about you & you aren’t alone. xx

11 posts since

22 May 2017

Hello purrfect and once again thank you so much for replying. It’s funny, I am in so much pain at the moment but every now and then I read or hear or see something that makes me take a deep breath and suddenly everything is a little bit better for a moment – that is how your posts make me feel. 

Mum seems very peaceful most of the time but it has been hard today as she isn’t receiving as much care as she would like and is understandably upset about this. However, it brings both of us a huge amount of comfort to spend this time together and I have been doing little things like bringing her the food she likes and washing her hair for her so she is a bit more comfortable. 

I’m finding it difficult to say anything sentimental at the moment as it makes both of us cry but sometimes we just hold hands and she sleeps and I read my book next to her bed and life seems sort of normal for a while. 

I am so sorry that you have lost your Mum too. I know I can’t speak for her but I think anyone would be proud to call you their child: the amount of time and attention you have given me and other scared & upset people on here has made a world of difference and I keep coming back to read your words for comfort.

P.s. I am so pleased your condition is most likely “only” IBS – both me and my sister have this so if you would like any tips, you know where to find me! It’s a pain but manageable xxx

273 posts since

14 Jun 2019

Morning Sweetie – thank you so much for your very kind words I’m very touched. I’m glad I’ve been able to bring you a little bit of comfort. Doing those little things for your mum like washing her hair is important. You say you’re finding it difficult to say anything sentimental just now – don’t worry about that. The right time may come when you least expect it. I feel sure your mum knows how you feel anyway because you are there doing what you are doing.

Are Macmillan nurses involved in her care? If so perhaps you might ask them if there is a bit more care available. The trouble is we all know how stretched they are but might be worth a try?

This might seem an odd thing to say but being in pain now as you are, I think, is part of the grieving process. I believe it begins before someone leaves us. I knew quite a few weeks before my mum went that she didn’t have much time left & the night she died I slept really well & felt at peace. I wondered for a while afterward why I felt like that. I realised I had been grieving for her whilst she was in the nursing home & becoming more & more frail. I suspect this may be happening to you. 

We are all different of course & you are slowly, I think, coming to terms with what is happening & although it’s terribly, terribly painful it’s what happens. My Dad died when I was only 23 & he died very suddenly & we didn’t have the chance to say anything but at least with my mum we had that chance.

I don’t mean to ramble about myself but hope it helps you knowing about the experiences of someone else.

Thank you for offering tips on IBS I might take you up on that if that is what it finally turns out to be.

In the meantime please stay in touch as & when you like so I know how you are doing. Love to you x.

11 posts since

22 May 2017

good evening purrfect and thank you so much for another kind reply – i read it on the train this morning on my way to see mum.

i followed your advice and spoke to mum’s palliative team at the hospital today but sadly there isn’t much they can do – they said they would swing by every day just to see how she is which was very comforting to her but i am going to do a bit of research and see if i can sort something out myself, even if it is private care.

i’ve also been reading up on anticipatory grief – grief before someone dies – and everything you said makes sense. it’s the loss of everything that should have been and the way things will be after she is gone. in a horrible way, i hope i am kind of coming to terms with what is happening purely because i am so scared of the pain i will be in when it fully hits me that she is gone – i know it will still be there but i am trying to follow my mum’s example and just make the most of our time together. 

i am so sorry to hear you have lost your dad too – i’ve only just turned 24 and it is so unfair to lose a parent this young, let alone at any time but you’re right, at least having this time is an opportunity to talk about memories and say “i love you” as many times as we like.

please ramble away as much as you like, your messages are so helpful and they bring me a lot of comfort especially at night when i can’t sleep. love to you too x

6 posts since

9 Jun 2019

Hello pgh95,

I am so sad to hear you are going through this. It really

is such a difficult time. It sounds like you’re doing an amazing job at being there for your Mum and siblings.  I lost my beautiful Mum to secondary breast cancer three weeks ago today. During the time she was in hospital I moisturised her hands, arms and legs, helped bathe her, moisturised her face, sprayed perfume etc. She was sleeping a lot and things progressed very quickly. I’m so grateful I got to do these things for my Mum. I was able to look after her and talk and tell her how much I love her. I take some comfort in that. It really isn’t fair that anybody has to face the loss of a parent. I’ve found myself reading books on loss and googling continuously for answers which is how I found this chat. I was reading for months before I posted and it’s so good that you are too. I’ve only posted a few replies but it really helps to chat to people that have been through similar things.

You will be so grateful for this time with your Mum <3 

Here any time if you want to talk.

Sending love and strengh

KS

xxxx

273 posts since

14 Jun 2019

Morning sweetie – I’m glad you’re being proactive about things – maybe sorting out private care etc. Taking control of things insofar as you can is good for you – makes you feel a bit less disempowered. I’m glad too that you’ve done a bit of research on anticipatory grief. You probably are starting to come to terms a little bit & that’s good. You will be in pain when your mum is no longer with you & I wish I could pretend it won’t be the case. But you know we human beings are strange creatures. We often find that the things we fear the most don’t come to pass & we somehow cope. It’s for that reason I say try not to anticipate how you might feel. Doing that will only make day to day more difficult. Following your mum’s example is the best – she sounds like a bit of a star to me.Happy 

A little story for you. 40 years ago my sister had a baby girl who sadly died when she was 4 days old. You can imagine her devastation. Her husband took a bit of time off work of course but eventually had to go back. So I then took a few weeks off & one day my sister & I were in the car & she said she was scared of my going back to work & being alone during the day. I said something will happen & everything will be ok. I didn’t know what the ‘something’ might be but a few days later we had a letter from some relatives in Canada who were coming to England & wanted to visit. Within a couple of weeks we had 3 of my mums cousins staying & things were so different & busy we found that suddenly life had moved on. ‘Something’ will happen so that you will find a way of coping with things. Life can be a bit of a mystery! Happy

I had a feeling you were only young & it’s an awful lot to deal with at your age & very cruel. It’s a very long time since I lost my dad – I’m 67 so well old enough to be your grandma! As I said my mum died in 2017 on Halloween – she was 89 so I had her all my life. I was lucky & I think it’s part of why I feel so much for what you are having to experience. It’s also the case that when you’ve been around a long time you have a lot of life experience & I’m glad some of my experience helps you.

It’s easier isn’t it to talk to strangers sometimes about the things you feel most deeply about & I do hope you’ll carry on chatting with me as long as you need to. If it helps you can send me private messages via the forum. 

I’ll think about you & your mum again today & send love to you both. Keep plodding sweetie – you’re doing good I promise. x

 

11 posts since

22 May 2017

Good evening Purrfect, how are you doing? Any update on your potential diagnosis? 

I’m sorry it’s been a while since I last replied – I had to go back to work as I’d used up my compassionate leave, so I’ve been going in to see my mum and then working all sorts of hours. I am putting all your messages to me in a document so I can read them when I start to struggle (like tonight).

Mum surprised everyone by getting better… and then she got worse again. This week has been a rollercoaster that has ended with her brain cancer spreading which is so horrible because she was feeling so much better and was just starting to recover from the infection that nearly killed her. At this point, I have stopped trying to predict what will happen next.

I’ve followed your advice and tried not to focus on the fear of how I will feel when she has passed – when I was doing that it was so distressing that I could barely function, so instead I am just trying to enjoy this time of relative stability.

I am so sorry that your sister lost her baby girl, but I can’t tell you how happy I am that she eventually found a way to cope. It is reassuring to know that as life moves on, it does eventually take you along with it. One of my biggest fears is not being able to “cope” with something, whether that’s a break-up, a job change, or a death – but so far, I have managed, and although I can’t imagine anything worse than losing my Mum, I hope that I will be able to carry on, if not for me then for her.

P.S. I wish you were my grandma! I can’t help but wonder if it would be any easier if I was older but then I don’t think it would matter what age I was, losing your parents will always hurt the same way – as you sadly know, of course. That being said, I am grateful that you have some wisdom to impart – I don’t know anyone else who has lost a parent at this age and as time goes on, I am finding it more difficult to speak to the people in my life as they seem to think that cancer is some kind of linear illness where you either get better or you don’t – the reality is so much more complicated… 

Thank you as ever, I hope you’re well xxx

11 posts since

22 May 2017

Hi KS, 

I have been reading your posts and I know it’s cliché, but I am just so, so sorry that you have lost your Mum and I am so grateful that you took the time to message me and give me some reassurance. Our Mums are nearly the same age and I just can’t process that someone so amazing should be allowed to pass away, if that makes sense. She’s just so special to me that I can’t believe she could be taken away – it just shouldn’t be allowed.

I’m glad that you also had that time with your Mum to take care of her. My Mum says that even the smallest things like moisturising her feet and brushing her teeth feel absolutely heavenly and when she smiles at me it just makes everything okay for a while. I hope those memories of us looking after our Mums comfort both of us forever. 

I am so rubbish at sleeping at the moment – I feel like a baby again, scared of the dark and staying up until I’m nearly fainting with exhaustion because I’m terrified of lying there with all these awful thoughts running around my head. Even though being on here makes everything feel more real, it’s comforting (although utterly horrible) to know that there are other people out there who understand my pain, while everyone else carries on living their normal lives.

Please feel free to message me too if you ever want to talk too, I will be thinking of you and your Mum xxxxx

273 posts since

14 Jun 2019

Morning sweetie – so glad you’ve posted again & letting us know how you are. I have been thinking of you & wondering how things were. Re: my diagnosis – I have the colonoscopy on July 17th (could have been before but I put it off) which I’m not looking forward to but needs doing so…..

The fact that your mum’s cancer has spread must be terribly difficult & finding comfort in words isn’t easy when we feel in despair but I’m glad that what I have said helps you a little bit at least. It does strike me you know that you are dealing with what’s happening in a way that many young people would find impossible. You say you fear not coping but the reailty is that you are coping & better I think, than you give yourself credit for. Not coping, I think, is to run away or to have some kind of collapse but this isn’t what you are doing. I wonder if, when we say “I’m not coping” really means “I’m feeling this horrendous pain & I can’t make it go away”. Of course it can’t go away because it’s the result of what loving someone & losing them means. It’s the terrible price we pay for loving someone dearly.

I understand what you mean about people not understanding cancer. Unless one has some personal experience it really is almost impossible & despite wanting to say & do the right thing people don’t always get it right – as you say the reality is much more complicated. The thing about this forum is that people here do understand.

As for your wanting me to be your grandma – I’m not one in reality but I shall be absolutely chuffed to bits to be your virtual grandma for as long as you’d like me to be! :):)

Another day sweetie that you’ve coped & I’m very proud of you. Keep plodding & keep in touch as & when you need to. Sending you an enormous virtual hug. x

 

Mum is dying of ovarian cancer and I am in denial

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