I just want to be mum

I am sorry for how long that post was but please do keep posting and we are all here to listen and support. One day at a time, you have got this.

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No post is too long :smiling_face_with_three_hearts:
I love reading everyone’s perspective

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Hi @Toadmum and all who replied to me. I didn’t sleep at all last night. If I am completely honest I just want to run away. I’m not strong and I can’t bear to watch my son go through this. My worry is not the “home” concept (he hasn’t lived at home for 3 years) it’s the leaving the hospital before his consultant says it’s safe to do so because he’s fed up. There is a long road ahead. I did speak to a lovely nurse and shared my concerns. She was very helpful and gave me a voice and listened. We are a small family. We don’t have a support network at all. It’s just me my husband and our kids (all young adults). They are my whole world. On the plus his treatment is going well. Infection markers are up and neutrophils are still zero but all is expected. I see his hair starting to fall from his very hairy legs. I pointed out that his bed was full of little hairs and he wasn’t very happy about me commenting. He is quite grumpy with us. My husband points out that who else is he supposed to be grumpy to if not us. Best to be us. He’s happy to absorb all the grumpiness. I am learning to. It’s not personal. He was always the happiest child. So full of life and love. It’s all so devastating. But we will get through this.

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You will get through this as will he. Your husband is SO right. My husband can be short with his mum and dad. It is so hard for them as he is their baby and they want to experience nice times with him too. I think ultimately he probably knows he can do that but I think he has also found it frustrating that they want to baby him during this process. He’s had to pause work and a lot of the things that he would usually do and we’ve tried to adopt a positive / practical outlook which focuses not on what we can’t do but on what we can do. I think when his mum tries to baby him, whilst well meaning, it can remind him of just how much life has changed.

Additionally, he hasn’t lived at home for years. We have a close relationship with both sets of parents but we don’t usually see them every day pre Acute myeloid leukaemia (AML). My husband didn’t feel he needed a daily visit but I know that his mum wanted to do this because he’s her baby.

Ultimately, he is still your son but he’s also still himself at 24 and will still enjoy doing the same things as before. I don’t know if the above is helpful but you will all get into the flow. If I can reflect on the last 8 months, of course I would not wish to be walking this path out of choice HOWEVER we’ve not had a terrible 8 months. There have been some incredible moments, our family relationships are deeper, I have a greater understanding of what is important to us in life. We’re both different people now and I wouldn’t want to swap or lose any of that. I have had to treat myself differently and prioritise different things. You will all change as a result of this. Allow yourself the freedom to take things as slowly as you need to. If you read through my trail on this forum, I’ve had great weeks and just like that, the plan changes or he catches an infection or I have a hard day. Sometimes I focus on a task at a time, and celebrate getting through another day, others I can plan ahead.

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There has also been SO many times in the last 8 months as time has gone by that he has wanted his mum. She has taken him to appointments, they’ve spent the day together at her house so he could rest, she’s cooked us meals when we needed support and a rest. She’s also helped in other little ways - she helps me, or our children. We find ways to support each other as a family that sometimes includes my husband and sometimes doesn’t. She sends him a little puzzle or brain teaser or a text in the morning when he’s in hospital or she washes his clothes for me when she takes them home from visiting. Your love and support doesn’t have to look like a physical visit. Sending you lots of love.

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Heya @Jaqsplat

I am sorry things are tough going at the moment. It is such an awful journey but I think you are a lot stronger than you give yourself credit for. It is super tough on the ‘down’ days.

When my daughter had her first round of chemo it took an age for her neutrophils to come back up. She spent 7 weeks in the isolation room. In the end I intervened to ask if she could just go outside for half an hour. Her team gave the approval for this. It then broke my heart because she was too scared to leave the room. She did in the end and I shared a pic of her heading outside the hospital for the first time. It made a horrible time feel soooooo much better. *see photo below :point_down::two_hearts:

Her team were clear that she would have to have all chemotherapy as an in patient due to possible reactions, infection risk etc. When we returned to hospital for the second round, I was so upset but the positives were she knew what to expect and just wanted it to do done.

We also had a few re-admissions via the ED department- these were definitely challenging :cold_sweat:. She had been allowed to come home but as soon as her temp went up we had to call the ward and come back in as quick as we could. Perhaps something for your son to consider and discuss with his team. It is hard, boring and rubbish staying in the hospital but that is where care is immediate.

I did think of something else…. I bought some food flasks and would cook Danae her favourite meal, put it in the flasks and then take it to the hospital and we would have dinner together. The ward team used to ask me what I had cooked that day :joy:. Danae loved this and it was a pleasure to watch her eating her favourite meal. Still not being at home I know but in that moment it felt a little closer to getting out of the hospital.

Remember to be kind to yourself in all of this - particularly if others are being negative and grumpy around you. It is only by caring for yourself can you then care for others.

Take good care

Sarah

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Lovely photo! You can see her breathing in the fresh air.
My daughter now has Covid so visits are on hold which is just horrible. But he’s so grumpy when we’re there I wonder whether a few days break may be a good thing for all of us.
Hopefully we will all feel better in a few days!

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Awww @Jaqsplat Hope Covid passes through gently and quickly. Like you say, maybe a good time for everyone to take a breath, recharge and come back stronger.

Take care and catch up soon

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Oh @Jaqsplat I am so sorry to hear that your daughter has Covid.
But perhaps as @SarahMum it will give you all a chance to take a breath, recharge your batteries and come back stronger.
I also really related to what your husband said that who else is your son supposed to be grumpy to if not us. and no, it’s not personal. Sometimes my son does or says something that 'cuts me to the quick, but it is just him asserting his ‘grown upness’ and independence.
Just a thought, I wonder if obviously he is feeling very unwell and might find all visitors very tiring, especially in numbers and if he feels tensions.
I know when I was in hospital my husband came to visit me and I felt like a sitting target and I just wanted to scream for him to go away. I just wanted to rest and sleep.
A very well meaning friend also came in and I felt the same.
Be kind to yourselves and recharge your batteries and I think you are doing so well, it is so tough being a mum.

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Thinking of you and hope you have all got on OK this week xx

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Hi. Sorry I didn’t respond to you. I am grateful for the thoughts. It’s been another awful week. We had a break from visiting due to our daughter having Covid. My son and I exchanged a few hurtful messages but really all the words are the fear and heartache coming out in strange ways. The truth is we are all hurting so much. But tonight we went to visit and had a bit of time on our own with him where we were able to share our thoughts, have a cry and start repairing the bond.
21 days in and he is still neutropenic and having temperature spikes so he is in a very low mood. His body is filled either blood or chemicals most days but they are doing what they need to do. He just can’t see any light at the end of the tunnel yet.
We are all broken hearted but today is still Wednesday and I still have to now go to work. I would give up work in a heartbeat if he didn’t have his partner with him.
We are looking forward to happier times but they seem far away at the minute.
I wish I could write more positively but I’m not there yet.

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Oh @Jaqsplat it must be so, so hard on you all.
I have to say words cut me to the quick.
Perhaps you are all struggling in your own ways.
Repairing hurt takes a long time and perhaps it is a process.
Please do keep posting and be ever so kind to yourself.

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Heya @Jaqsplat

Thanks for posting - even though it’s a difficult one to post.

Did you see my post about waiting for my daughter’s neutrophils to rise after first round. Every day the doctors would do their rounds and we would ask - to be told - nothing. Those are hard days. :pensive:. But, one morning they came in and said, they are there! 0.5 but we took that - I can still remember the feeling of euphoria. So hang on in there. It is fine to feel sad and good to let it all out. I cry at the drop of a hat. I never apologise for it anymore as I realise it is a release valve for me. Have a cry and then get back on it.

Did you know you can book a telephone appointment with one of the specialist nurses who work at @BloodCancerUK-SupportTeam . I found this such a wonderful source of support. @GemmaBloodCancerUK will always hold a special place in my heart :heart: for the time she took to discuss my daughter, her Acute myeloid leukaemia (AML), treatment plan and next steps. Thanks @GemmaBloodCancerUK :blush:. In a world where you have all lost control @Jaqsplat it can prove reassuring to go over where you are and what’s next for your son and all the family.

No pressure but wanted to make you aware of this support.

Take care and be kind. We are all with you in this forum.

Sarah xx

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Hi Sarah. Thanks for your response. I did read it a few days ago but haven’t responded because I was in the midst of a meltdown! Thanks for the blood cancer nurse info - I will call them it sounds like a great idea.

So I think we all turned a corner last week. After the visit break and the texts my husband and I went to visit. We had some time alone with our son where we were all able to say how we felt and we all let out some healing tears. It was heart breaking to hear about how my son felt. His fears. His desires. He just wants us all to get along and get through this together. It was a good visit and I came away feeling very sad but determined to fully support both my son and his girlfriend. I feel like I have been holding on to him with both hands as if he’s mine. I didn’t want the world to have him - look what the world did to him! I am learning to release my grip one finger at a time and give him to his partner - who he loves very much. I am still here for him and will always be but I feel less that I need to be the one in charge.

Health wise he has been quite poorly. But yesterday we heard his neutrophils are now at 0.1 so we were all very happy with that. Yesterday he seemed better in himself. More optimistic. His temperature is still spiking and dropping and he still wants to go home but I understand that. Bone marrow biopsy is booked for next Tuesday so we will have some clearer answers then hopefully about how things are going after his first round of chemo.

What a roller coaster!! Thanks for all your support.
Jaq x

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Thanks so much for your post, @Jaqsplat it sounds a very emotional, healing visit.
I was interested in your poor sons perspective, literally stuck in the middle of the people he loves…
I was vey struck by your beautiful words ’ I feel like I have been holding on to him with both hands as if he’s mine. I didn’t want the world to have him - look what the world did to him! I am learning to release my grip one finger at a time and give him to his partner’
Yes, one finger at a time sounds a good philosophy to me, you have come so far in a very short time.
Yes, it is a medical rollercoaster, but also an emotional and practical one, everyone is floundering. Perhaps as you loosen your fingers on your son they can go onto holding on to your roller-coaster.
Look after and be very kind to yourselves and please do keep posting so honestly, I am learning so much from you.

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What a wonderful and heart felt post. What an incredible mum you are to your son.

The neutropenic periods are so hard. I don’t know if they get easier but if it would reassure your son, my husband gets neutropenic fevers after every single chemo round. Sometimes the only way for the fever to fully go away is for his neutrophils to rise. There have been infections where there has been a cause, and some where we never found a reason. We took comfort in his incredible nurses and doctors who sadly see it every day and weren’t worried by what they were seeing.

Hope you get some lovely results from the bone marrow biopsy next week. We did not get the results we wanted from the first round but we are doing well 8 months on so don’t stress.

Wishing you all a good week & some fantastic neutrophil growth!

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So a quick update. My son has now gone home after round 1. All the blood levels etc have improved and he feels ok. First biopsy shows he is in medical remission (I think he said less than 5% blast cells) so we are all so happy. We are going to give him a break from us and leave him recover at home until round 2 before it all starts again. We are all more informed now so hopefully things will go better.
As for me I look back at weeks 1-3 and on the one hand want to put an arm around myself and say it will be ok - on the other hand I want to slap myself and say get a grip :joy::joy:. All your kind words were so helpful in getting me through it.
Now it’s all about doing what’s right for our son and whatever that takes but we are all so much more positive. There’s still a way to go but bring it on :heart:

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@Jaqsplat simple question as you are being reflective :wink: what have you learnt about your son and yourself? Glad your son is on the up

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Hi. Interesting question. Got me thinking. There are a few elements to this. There is the cancer diagnosis and then there is my role as a mother and my son’s role as a son and a leukemia patient. A cancer diagnosis in any form brings shock and fear. This affects the person diagnosed and everyone who loves them. The fear of the loss of a future that I hoped for my son was too much and the pain overtook everything else to the point that I may have lost sight of what my son was going through and what he felt. Once we all shared our feelings and fears and talked to each other things started to get easier and more manageable. We all have a long road ahead but talking is key. It sounds corny but if you truly love someone you have to make the effort to talk. I also learned to give him space and try not to control his care. That was tough and still is.