I don't really know where to start. My mother has recently been diagnosed ovarian cancer. She had a hysterectomy and is about to start chemo next Monday. I guess everything happened so fast we haven't had a chance to process or understand what is going on.
Back story- my mum is a young 61 year old. It has always been me mummy and my sister. She is my world and my best friend, sis has a young family of her own while myself and mum still live together.
Mum is very religious and since she's been off work and healing from her Op, she spends all her time praying. I am extremely angry with God and can't even say a prayer right now. She's never smoked and barely drank all her life and I can't get my head around why this is happening to her. There has been a lot of tears and she won't even look at any information about the upcoming months. Our roles have changed as I am now mothering and having to ingest all this information and it's ALOT! I feel so helpless and angry when I look at her she's lost so much weight, my once so active superwoman looks so frail and weak and I just don't think it is fair.
I have tried to stay off the internet and carry on as normal as possible but this morning I couldn't get out of bed and I can't stop crying and thinking is this our life now. I don't cry infront of her mainly at work or in bed. I am so afraid of what is to come, I don't know what to expect and from what I have been told this really is just the beginning. I don't know if I can stay strong for my mum and I feel like I am letting her down by being so weak. Every appointment with the oncologist we get asked if we have any questions and I don't know where to start.
I do have friends who have tried their best to be there but I don't think I've had a full nights sleep in over 2 3 months and when I do sleep I have horrible nightmares and I end up staring at the wall all night. I don't want to feel like a burden.
So I guess my question is what do I need to know about Chemotherapy, what questions should I be asking at these appointments? It's all come around so quickly and I feel unprepared
Thanks
(Apologies for my rambling on)
Written by
Scareddaughter29
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Oh, my dear girl.My heart goes out to you. We’ve probably all been exactly where you are now, either as the patient or relative and it can be frightening and lonely. But there is hope and help out there. There’s plenty of understanding, sympathy and more importantly practical advice to be had from this group. We have more experience than we want! Many hospitals provide psychological as well as medical support and staff on the Ovacome and Macmillan help lines are amgood support of practical advice. Chemo can be tough be is very do-able. There are now lots of different drugs that can be used. The process and side effects should be explained very clearly and vary from woman to woman depending on the drugs. Things I wish I’d grasped at the beginning of chemo: it’s a good idea to drink plenty (2 litres a day) of fluids in the week or so after each treatment; keep a daily note of symptoms; listen to your body and rest when necessary; seek medical advice when it’s needed, don’t be tempted to ‘soldier on’. I’m sure others will have many more ideas but in the meantime, just want to send you a hug and say you’re not alone. Jo 🌺🌼🌸🌻🌹
Hi. I'm so sorry that you find yourself on this site. It's somewhere none of us want to be on but are so grateful for the support and knowledge that we can gain from here.
I was like you just over eight years ago. My world fell apart when my Mum was diagnosed with Stage 3C Low Grade cancer. You wonder how the hell you haven't noticed it before and the stress and anxiety does become a little bit much at times. It can be total role reversal as you described.
I found that there is so much you just don't know about this disease and what to expect going forwards. Do not google search. Ask the ladies on here for advice, your CNS or your Oncologist and do not believe what you read on Dr Google. This disease is so personal and every one reacts to treatments in totally different ways.
I've posted a few times here on my experience - we've had some tough times but Mum is still ok. Cancer has never gone, and it wont, but it has reduced by 55% over the last year on the trial she is on. It's important to remember that there are many women living with cancer these days due to the advances in treatment and personal care.
You've not said if your Mum's cancer is High Grade or Low Grade - which may impact the treatment options (not negatively, just different). It might be worth asking your oncology team that if you do not know.
Please though, be positive, your Mum's diagnosis will be tough, but stay positive with it.
I was a fit 58 year old when diagnosed and my daughter was 28.
I don’t know if she kept it all to herself or buried her head in the sand, we have never really talked about it. She recently showed me a picture of myself after my op and I was just skin and bone, I cried it was so shocking.
She had a 9 month old baby, which probably got her through, but it was so upsetting for me since I didn’t think I would see him grow up.
Sometimes it is harder for loved ones than it is for the cancer sufferer, since we just grit our teeth and get on with it, we have no choice. I think you need to get support in order to support your mum.It sounds like you are suffering with a bit of depression, maybe you need to see if the hospital offer councelling, or speak to Macmillan.
Your mum has a battle ahead, but affects us in different ways, I personally never felt or looked better, I did everything as before and was only really tired one day a week, but we are not always that lucky.
I used to appreciate any help with housework and meal cooking, I’m the sort of person that can’t cope if things aren’t organised, it makes me feel better.
Her praying is probably her way of coping and talking to god means she doesn’t have to burden you. I was of your opinion and so angry with him up there that I never prayed and still won’t, we are all different.
The week before your next oncology appointment keep paper to hand and jot down any thoughts or questions, it’s easier when you are not pressurised.
Don’t google, it’s all out of date and we are all different, just be there for your mum, you sound like a lovely daughter,
My daughters went through this in 2015... I am sure they have never told me how bad it was but they both had anxiety and my youngest had eating problems.
Please get some help for you-your Mum is under the care of her hospital and they will give her all the information she needs- you don’t necessarily need to be on top of all this right now.
Macmillan offer support to people with cancer and their families. You can ring their helpline and they will help you. Please do this first before you start thinking about helping your Mum. Once you have a support system for you then you will be better placed to support her. I was very seriously ill at diagnosis and my main concern was my daughters! But look, here we are more than 3 years later still here still looking forward to Xmas.
Hi, I'm so sorry to hear this about your mom. I can tell you, that I was very much in your situation three years back. My mom was diagnosed with Stage IV Ovarian cancer after being admitted through emergency for a bilateral pleural effusion (fluid in the sacs surrounding both of her lungs).
It was such a shock. There was no family history of ovarian cancer, she never smoked, etc.. She was a young 64 at the time, and I am her only child, and still lived at home. What made matters worse for me was that I was having one of my worst years ever due to a crippling bout of anxiety. At the start of that year I started feeling parts of my body go numb, and I'd wake up severely depressed every day. I went to the doctor, they even did a brain MRI on me to rule out MS, etc...At the end of the day they said it was anxiety/depression.
So in the midst of dealing with that, my mom got sick. And you know what? My anxiety was put on the back-burner, and I had to fight through my personal battles and stand up for my mom. Before her diagnosis, she very much did a lot of the stuff around the house, like the cooking, and laundry, but I knew I had to take over and look after my mom like she did for me my whole life. And it was definitely hard at first, even going out alone to do grocery shopping, etc.. can sometimes be hard for me due to my social anxiety, but I just knew I had to for my mom. And by helping with my mom, it was helping my anxiety big time too.
So basically what I'm saying is, while it all seems to be coming at you at once. There is a part of you that will somehow collect yourself, and do what you have to do. We do it, because we love them, and we know they rely on us. I knew nothing about this disease, so I did lots of research online, familiarizing myself with treatment options, side effects, supplements that helped during chemo, etc.. That helped me calm down, and make me a little more confident in my role for my mom.
I also joined this forum, and a couple other cancer support groups. I've learned so much from the amazing ladies here. Just invaluable info about their experiences, and just a general feeling of support. To know that you're not alone in any of this is very comforting.
I personally haven't addressed my anxiety issues professionally, but no doubt those resources are there, and if you feel like everything is overwhelming, then please seek out counseling or a support group in person. My mom and I also had a social worker who definitely helped to address whatever problems we had. The nurses, and even her surgeon herself were also very helpful in getting us prepared for her treatment.
I didn't mean to write so much, so I do apologize, but please don't make yourself a stranger here, and ask all the questions you need to help yourself prepare. I know how it feels to be angry with God over this, and I think with time those feelings will subside. I felt the same way then, but I'm in a better place now.
Take everything in stages, don’t try to understand it all at once.
Can your sister go with you to the Oncology appointment?
Write questions down & jot the answers down, in shorthand.
Ask if there is a Maggies Centre or a Macmillan group nearby.
Find out the name of your specialist nurse.
Can anyone visit from your Mum’s church? Remember at most hospitals, you can ask to speak to a Chaplain, even as an Outpatient. That is what they are there for. It sounds like your Mum is in shock & she is reaching out to God for comfort, which will help her.
The ‘reversed roles’ is hard but you will be amazed at your own strength. Keep posting on here too.
I am so sorry that you have to deal with this, but your mother does need you and you just have to keep on being there for her and you will need to be the researcher in your family.
I disagree with the ladies who tell you not to google.
The internet has many good and useful sites and all you need do is check the dates to get the most recent information.
The Macmillan Cancer Charity has a great website with info on everything, from how to cope with chemo, to how to get financial help. And there is useful information about the drugs and Chemo regimens your mother will be offered.
Do research, because knowledge is power.
Now: Useful nuts and bolts:
As you have heard, we are all different and the chemo affects all of us differently.
Your mother will probably be started on Carboplatin and Pacitaxol, Carbo/Taxol, which are the big guns for destroying cancer cells.
It can be extremely debilitating, depending on your biology, causing weird side effects, like “bone pain”, dizziness, extreme fatigue and usually one’s Tastebuds change so that food is hard to find appetising- and of course, there is a lot of nausea in the first week.
Your Mom will also lose her hair, but that’s a good thing, because you know for sure that the Chemo has reached every part of her.
MacMillan will also help her with finding and fitting a wig.
Also, it is very important to make sure your mother drinks plenty of water.
My daughter filled up small bottles of water and kept them in the fridge for me, always leaving 2 by my bedside.
Your Mom needs to get plenty of rest and should not try to do too much, but it is beneficial if she could take small walks around her room, or around the house if she feels up to it.
The first week is always tough, and it is almost impossible to eat very much. If your mother seems too weak and can’t seem to eat or drink enough, she can go into hospital for IV nutrition and hydration.
If she is okay at home, try to think of things she might like to eat, like creamy mashed potatoes, peanut butter on toast, oven chips, anything you can think of.
I found that peach or pear nectar worked for me also.
Anyway, there is lots more to know, but this is a start.
Once the Chemo begins to work, your mother will feel better.
And you will feel better, too.
This is just a shock for all of you, but now she just has to let the Oncologists do their job and you have to be the fall back guy, advocate and support for your mom.
One more thing: TV. Netflix saved me! My sister bought me a smart TV and put it at the foot of my bed.
My husband, daughter and I snuggle together and watch TV serials at night and I watch by myself when I am resting during the day.
It is a scary place and can be difficult when you do have faith. I lost one of my children age 18 to an infection and totally gave up on God. I wouldn’t say I was very religious but did believe and my family were also religious. When I was diagnosed with cancer just a few years later I did find comfort in prayer but don’t have the depth of faith that I did. So if that’s her comfort then she is lucky to share how she feels and not burden others. Or that’s how I define it anyway
Your bond with your mother means you feel the pain but she’s at the beginning of the journey. In six months time she will feel much better as her body becomes her own again with a new normal
I loved normality. Try not to worry you need strength for the down days. Hydration and sleep for you both
Try and get some help for you to come to terms with the fact your roles are reversed and now you must help your mother, certainly with practical things.
Although you live with your mother it doesn’t mean you are the only one who can look after her. Perhaps your sister can do one night a week and maybe both of you go to the oncology appointments.
Speak to your CNS, she is likely to have sat in on many appointments. Tell her your mind goes blank and ask her to tell you what sort of questions others ask.
Maybe visit the chemo ward before next Monday so things will seem familiar.
Do you know what chemo your mother will be having? Is it carbo platinum and Taxol?
Being diagnosed with cancer is very scary for patient and family. When I was diagnosed I found prayer helped, & I knew there were people from my church praying too. Fear for the future & fear of what treatments would involve & what effects treatments would have on me were a big problem. I also convinced myself I couldn't possibly have long to live. But the fears became less intense as I started to get to know more about what I was dealing with, & I learned to cope with the situation (most of the time, though I have had a couple of periods of being depressed & weepy & of course I would rather not have cancer) I have found that my faith has helped me a lot over the last 10 years since I was diagnosed, & I hope it does for your mum too. Does she have people from her church praying for her too? I realise it must be very difficult for you too. My daughters worry about me I know, but, although I have a recurrence, we are all currently able to get on with our lives. I guess you need support too. Joining this site is one way of getting help &useful information. And if you are going to your mums appointments, it can help to write a list before you go in of things you want to ask, & encourage your mum to do the same. Di
I'm sorry to hear your story, my heart goes out to you. In practical terms the most important thing is to know exactly what type of ovarian cancer your mum has - your use of 'mom' probably indicates you're in the States, but information should still be available. I also disagree in regard to using Google, it can be a very useful tool, but you do need to know precisely what type of OC, and the grade or stage, your mother has, because that's the starting point for working out various things. Your mother, and you, are quite naturally terrified... and everyone on here knows that feeling only too well. Different people have different ways of dealing with the terror; some of us stand up and stare it in the face, looking at every tiny detail, others just keep their heads down, do whatever the medics advise, and hope or pray for the best. Neither of these methods is right or wrong, its simply down to what kind of person you are, and both routes likely lead to the same place anyway.
But the thing I really want to address is the question of your faith and belief in God, and your feeling that you've been let down because your mom has been undeservedly punished. It's important to recognise that God (I don't use that term myself, I'm no longer formally religious at all and haven't been for years) or the universe or whatever you want to call it tests people; we are all challenged in various ways, it is the nature of life. It does not mean that your god is punishing you or your mom because either of you has somehow done something wrong, or that he has let you down, its just a very, very hard challenge, and your faith and ability to pray may well help you through this, if you can change your perspective on it. In the end, belief in God (or spirit, or the universe, fate, kismet, Allah, Jehovah or any other 'god') is an acknowledgement that there will be times when we have little or no control over our lives; rather, it feels like he/she/it/they do. Your part is to learn to cope with whatever comes, so it's more about acceptance and trying to rise to the challenge - and the ability to pray and feel comforted may be very helpful with that. To lose your faith at such a testing time , I'm sure, would make things feel much worse. You are having a 'dark night of the soul' so to speak... it will pass, and hopefully you will find comfort in praying again, or at least carry on anew with a somewhat revised version of your faith and world view. You may think what I say next is heresy, but, In the end, whatever religion or belief a person has (ncluding belief in science/psychology) are simply different routes through life - but they all lead home, so to speak, they end up in the same place, it's just the journey is different. And if you are able to pray, I will pass on a very sensible piece of advice from my highly religious mother in law - pray, above all else, for strength; strength for both you and your mom to face this terrible difficulty.
Notsoscared (i think)daughter here, Thank you so much for all your amazing words of support, Last week was really horrible but I feel more mentally prepared for the upcoming months ahead.
We had the first chemo session yesterday so i will try and update you guys on how she reacts and copes with the side effects
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