I just want to be mum

Hi all. I am hoping for some help. My 24 year old son has just finished his first round of chemo for Acute myeloid leukaemia (AML). It has been a whirlwind of 2 weeks. My son is coping really well and he has a partner who is just so positive about everything. My husband and his siblings are coping. They are taking one day at a time. Me…I’m a complete mess. I am so angry at everyone. I’m so angry at his girlfriend. She has been in our lives for 18 months - how does she get to care for him and I feel pushed out. I just want to be his mum. The thought of losing him tears me apart. I see my baby boy in front of me not some strapping 6’1” young man. I want to look after him or at least be part of his care. She gives me no time with him. She is there from 8.30 am til 8.30pm. If I visit - that’s it I’m a visitor. She tells me what treatment he has had and how they feel. “We had a rough day today” “we are glad the the Red Devil chemo is done cos that was tough for us”. I am so angry but I wouldn’t dare show this to my son - how motherly would that be!! I just sit and break down inside. Sometimes I go outside and break down sometimes I can wait until I am in the car. I feel like I hate her. I feel like I will never forgive her. I hope this is the shock of the past two weeks and I won’t feel like this anymore. It is getting easier to “visit” but the fear or losing him and not having spent time to care for him is too much to bear. I hope to read this in a year and feel ashamed but all I feel is angry. Can anyone relate?

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@Jaqsplat firstly welcome to the forum, a place to vent and find some answers.

I not sure if you have found this section of the site, about the many ways people who have loved ones suffering from cancer can be informed and helped.
Secondly, I read this and was reminded what my late grandmother said to my mum after we had a row and I didn’t see or speak to the rest of the family for nearly 8/9 years, “A daughter is a daughter for the whole of her life, but a son is son until he takes a wife”.
It sounds like your son has found a wonderful woman who by choice has taken it upon herself to be part of his journey, some would have just walked away…
You seem to be feeling a normal reaction of helplessness and guilt, while this has been focused on his partner rather than the cancer.
Hopefully you will read this in a year and not feel shame, but a sense of self understanding at how cancer not only just affects the patient, but the people around them.
The side effects of my cancer over the last few years, meant I lost the woman I married, it seems your son was lucky in the speed of his diagnosis and having the support.
I am sure others will be here to support you, but there is also the option of talking to the wonderful nurses on this site Blood cancer information and support by phone and email | Blood Cancer UK
You had to stand back before when he took his first steps, his first bike ride, but this time you have a chance to walk by his and his partners side through this, take deep breaths and just ask what you can do for them, let them lead.
You seem to have brought him up right, for another woman trusts him to be with him and stand by him in this dance with cancer, that should be a matter of celebration for you.
Take care

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Thank you for those words. They were lovely to read. All I know of course to be true. I will follow your links. The fear for his future grips me but I am trying to be positive.

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Don’t let your anger take away precious moments
Be angry at Acute myeloid leukaemia (AML) and it’s ok to feel angry.
Your son and his girlfriend have what sounds like a great relationship and it’s normal that she would be there for him and him wanting her to be there
That doesn’t take away that your his mum. He still loves you.
Try and put your anger aside and just be and you will naturally fall into your part of the process.
You could make them a picnic treat them to donughts and coffee give them a shoulder to cry on.
Little things are the biggest joys
Please don’t miss out
You got this

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Oh @Jaqsplat I am so glad that you have found our forum, a great big welcome, this really is the place where you can say how it really is for you.
Feelings are just not logical sometimes, but I am so glad that you had the courage to be really honest with us.
@clickinhistory and @2DB have given you great responses and yes, being a mum brings that extra layer of bonds and maternal feelings.
But life and relationships have to move on for the next generation. It doesn’t mean that he loves you any the less, but he also has a a partner now, who you describe as extremely supportive and informative.
It must be so hard as a mum being powerless to be the main carer after all those years.
Do you think you might benefit from talking to someone as you have written to us?
I remember when my son got his first girlfriend and the feelings it brought up in me, wow, the jealousy it brought up in me.
You are doing brilliantly, it is a process keep on letting those emotions out in any way you can., perhaps try and build a positive relationship with his partner and look for their positives and compliment them. Perhaps even ask her how she really is.
You have had a lot to take in in a short space of time.
I was in shock for a long time after I was diagnosed.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Be very kind to yourself especially, but to every body struggling in their own ways at this point.
Please do keep posting how you are honestly doing.

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Thank you for your reply. Things are getting easier and luckily my friends and family are saying the same as you which helps. I don’t want people to side with me I just want to hear how other people have gone through this and can understand these horrible feelings. I have always been close to my son and I all I want for him is happiness. The picnic is a lovely idea I will definitely do that. Thank you.

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Thank you Erica. Wise words indeed. I am just coming out of the shock I think but maybe not. I still have moments of complete fear. But I have just been to see him and he is really doing well. I think you are right that we have to be kind to everyone who is going through this. We all love him (his dad his siblings his aunt his girlfriend and her family) and I need to remember that. I am proud that people love this little man we brought into the world.

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Oh @Jaqsplat what a lovely worded reply, your son certainly seems to be loved by so many.
You will still have moments of complete fear, in my book that is so normal.
You say about being kind to everyone going through this, perhaps the first person is for you to be kind to yourself.
You should be very proud, as you say, of yourself for bringing up such a lovely boy too.
Please do keep posting and spoil yourselves

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Hiya @Jaqsplat

I am so sorry to learn of your son’s diagnosis. You will understandably be in shock. Things happen super fast in the Acute myeloid leukaemia (AML) world and it can be a scary place to be.

I have a post on here as my 21 year old daughter was diagnosed with Acute myeloid leukaemia (AML) last April. She is currently in remission and has regular bone marrow biopsies to check all is okay.

She was at university when she received her diagnosis but came home to be close to me and family. She is not in a relationship so I can’t comment but can empathise with how you must be feeling. Confession here - I am a control freak :blush:. I was so angry and scared that I couldn’t control what was happening to my daughter. I spent hours researching Acute myeloid leukaemia (AML) in a bid to find that control. I described it as ‘our’ journey. It was in some ways and I do wonder if your son’s partner is experiencing a bit of that too? Shock can mean that we present in many different ways. Give yourself some time as well as them. Be kind to yourself and take in the little treats that will raise a smile for your son and partner.

Maybe once the initial shock has subsided you could talk to her (or both) about how you are feeling and encourage them to do the same?

But for now, keep visiting, posting on here and take care of yourself. You have found a wonderful, supportive community in this forum.

Sending love and positive thoughts

Sarah

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Hi @SarahMum thanks for commenting. You are right about the time for the shock to pass. A few days ago I was in a heap at the bottom of the stairs on his ward in bits. A nurse came and helped me up and took me to a quiet room and explained that it’s the shock and that things will calm down. We are now on day 9 and I feel so much more settled. I can be with my son and his partner now and have a proper conversation with them both.
I met a friend for lunch today between visits too. All the advice and guidance has been so helpful and I am trying now to support both of them. It’s just lovely that I have been understood.
Can I ask about your daughter’s hair. We have been told that day 10 it will start falling out it’s day 9 and it is still as thick as ever. I am preparing for that shock.
My son is feeling down today he is bored. Any ideas about how to keep his mind active?

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Ahhh I am glad things are settling a little- it really is a rollercoaster ride.

Danae’s hair took a while to fall out. She loved her hair- it was long and she spent hours training her curls. I think it was a couple of weeks in that it then started to fall out. Her scalp was irritated too. So she made the decision to shave it all off. She said it felt like something she could control in a new world where everything was out of control. Her nursing team helped me to shave her head (it was a very emotional day). That said, she got used to it and started to wear lots of soft chemo caps to keep her head warm.

Re: the boredom - we bought a Nintendo Switch and linked it to the TV in her room. We spent hours playing Mariokart on it (she always wins the races!). There were also days where she felt really rough and would sleep the day away. The nurses supported this as it made the days go by and her body must have needed it.

We also played cards and went back to playing childhood board games like ludo and snakes and ladders! Sometimes I would really have to encourage her to play and when she did we ALWAYS had a laugh :laughing:.

We quickly learned to take each day (sometimes hour) as it comes but we would always try and find a positive and a smile in each day.

Hope these suggestions help.

Sarah

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Hi Sarah. We bought him a Switch and we played cards today. Maybe I’ll take some Ludo in. My problem is getting him interested in playing. He was ok this morning but went down hill this afternoon and was quite unwell. As you say best to take each hour at a time.

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Oh @Jaqsplat I have found @SarahMum talks such practical sense and an hour at a time is so brilliant a saying. I definitely agree that sleep can be so beneficial.
Personally, and this is personally, I hate board games etc. when I am well, let alone when feeling very unwell!!!
Also please do look after yourself and have some ‘you’ time, when I was in hospital it was lovely to see some visitors, but I found them very exhausting, I also needed some ‘me’ time and I felt I could not ask them to leave !!!
Please do keep posting, a lot of things are happening in a very short space of time,

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Just wanted to post and say how sorry I am about your son’s diagnosis. Acute myeloid leukaemia (AML) sucks and it just isn’t fair. It sounds like you are doing a wonderful job as a mother.

My husband is 33 now but was diagnosed towards the end of last year with Acute myeloid leukaemia (AML). It has been incredibly hard for all of our family and I know that his mum has struggled a lot with some of the same sentiments that you are feeling. We’re on month 8 of Acute myeloid leukaemia (AML) now and getting ready for transplant in about 2 weeks. I was about to type that things get easier but I don’t know if that’s true. You all just adapt and become stronger and more resilient.

Talking is so important and it sounds like you’ve found a nice place here. Make sure you find a way to talk out loud too - family, friends, maggies or McMillan nurses?

Take care of yourself!

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Hi. Thanks for getting in touch. 33 is so young I’m sorry for you too. My eldest son is 27 - just a few years younger than your husband. My son with Acute myeloid leukaemia (AML) has just turned 24. Things were slightly better with the communication for a few days. But it’s back to being very tense. Things are very negative in the room. They are tired and I really get that but I have offered to take on some of the care but my help is really not wanted. Their negativity is feeding each other. Now they are talking about him going back to her parents house to do round 2. The consultant has said clearly he will be in hospital for 2 rounds. I feel
So helpless in it all.

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Hi @Jaqsplat feeling helpless as a parent must be a horrible feeling, I think you are doing brilliantly.
Perhaps not saying anything is the best thing sometimes for your relationship with them, but it is so hard. Your son and wife have to do it their way.
I know you would prefer to look after your son, but you might offer to do some shopping, take them round a meal that they could heat when they want it, washing etc,. or just ask if there are any jobs you can to help. They might say ‘no’ or they might say’ yes’
Please do keep posting, trust me maternal feelings never leave you or get easier.
Be really kind to yourself

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Hi. Thanks. It’s not his wife it’s his girlfriend. She still lives at home with her parents. My son has been staying at his girlfriend’s parents house for the past year. If it was his wife I would understand things a lot more.

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Oh @Jaqsplat I do apologise I remember now it was your son’s girlfriend.

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Oh bless you
It’s one of those journeys of good feelings and then the negative feelings
The elephant in the room of going “home” they know your going to be upset that’s why there is negative feelings in the room.
Please don’t think you are not wanted just because they are going back to where they live usually.
It’s not about being unwanted but where your son is comfortable to recover

Are you able to visit and still do all the things you are doing.
Making picnics cooking baking etc taking them out for a walk or ride somewhere

Love just is in any shape or form

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It’s incredibly hard isn’t it, and it brings so many feelings for so many people who are involved. If I reflect on my / our own situation, we have my husband who is directly medically affected but there is me and the kids, his mum and dad, siblings, my siblings, parents etc. I try to remember that this hurts and worries everybody and everybody responds to these situations in a different way.

I have personally found the longevity of the treatment plan hard to come to terms with, because it is truly a marathon and not a sprint. The care your son might need, or might want will significantly vary over the coming months. My husband has had lots of in patient stays, infections etc although perhaps he is unlucky (and we have two small children at school), but I have been incredibly grateful for all offers of support and hopefully as he settles into this journey, he will find his own feet and way forward.

My husband hasn’t struggled with positivity however there has been a lot of time in the last 8 months where he just couldn’t do much. He quite happily just stared at a wall and rested. The chemotherapy is so strong and along with transfusions etc, it is a full time job just to manage the medical aspects. This was hard for me to understand at first but we got him a fire stick for his hospital room and he would just spend long periods of time mentally resting.

The really important thing for you is to also get your rest and time to yourself alongside being available as he needs you. I did spend a lot of time at the hospital in that first round but as he got into the swing of things, he felt comfortable being there and I was able to find a way to make life as normal as possible. I think this is the best gift I could give him - to keep things going for the kids, to spend time with his family and ours, to not give up in the face of adversity.

You’re doing incredibly, and so is your son. Things will settle down. Be kind to yourself, nobody expects to go through this and especially not to see their child go through this. I know my mother in law feels and felt devastated by his diagnosis. He is still her baby regardless of him being 33 rather than 3.

If he would like to talk to someone (or if she would like to) please do drop me a message. One of the hardest parts for us was trying to find people who were going through Acute myeloid leukaemia (AML), or Acute myeloid leukaemia (AML) at an earlier point in life. This site has been a life line for me. You might be able to search my posts and you will see our own personal journey if that is helpful. It has also been great to meet other Acute myeloid leukaemia (AML) patients and to see the good, positive stories too.

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