Morning @Amz. As @Erica says, it will definitely be worth checking in with your mum’s medical team and discussing her case. Looks like your mum has found her new favourite food - add to your shopping list. Please let us
Know how you get on X
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Great to hear your mum is doing better at home @Amz. Just in case it’s helpful, here’s some information from Macmillan about second opinions - Getting a second opinion - Macmillan Cancer Support. CRUK does some info on this too here
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Thanks guys for your replies.
I know that if we asked her team for a second opinion they would say it’s pointless. They have made it very clear they don’t believe there is anything else they can do, and she only has a couple weeks left (that was two weeks ago now we were told that). But she is doing so much better since home (she’s obviously not amazing) but my gut tells me I have to do everything I can to try for her, cause she doesn’t want to give up.
Didn’t have time to call the trial line today as family was here, but I will call them tomorrow and let you guys know how I get on x
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Hi @Amz, they might say it’s pointless but I’m not sure they can refuse? The support line or patient liaison might know more than me though - I could be completely wrong! I can feel your need to just know that you’ve done everything that you can - she is very lucky to have you and you her. Please keep us updated x
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Hi @Amz medical teams are not infallable. They make decisions based on the best of intentions but don’t always get it right. You should always consider all options and do what you think is best for your family. Keep fighting and I hope your mother gets some respite.
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Hi guys
Just wanted to jump on as feeling really stressed and broken. Have been referred to Cambridge hospital for a 2nd opinion, as poorly as mum is now, she’s determined not to go without a fight, so the least we can give her is another opinion, hoping the consultant contacts us this week.
Mums catheter was in the wrong place the other day for a couple days and caused excruciating stomach cramps, but finally seems sorted and she’s feeling a lot better.
However we had to call an ambulance for my dad last night as he had bad chest pains and palpitations (had 2 heart attacks last year) so he’s currently being kept in hospital till they find out what it is that’s happened.
To say I’m stressed is an understatement! Feel like I just needed to write it all down to get it out. Please keep our family in your thoughts if you have space… we need all the luck we can get right now x
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@Amz. It’s sounds like you are having a really rough time and it’s bound to take its toll on you. I can only imagine how hard this is and how you must be feeling to see two important people in your life feeling so poorly. Also managing all of the appointments and hospital logistics just adds to it all. No wonder you are feeling the way you are! I’m glad you wrote it all down and got it out.
Both your mum and dad sound like fighters and hopefully your dad won’t be in hospital to long.
As for your mum - good on her. Brilliant that you have the second opinion and will know you have done everything possible!
Now, what about you - how are you looking after yourself. You have so much going on. Have you thought about calling the support for a chat support@bloodcancer.org.uk or is it easier to write it down? You will be in my thoughts all of the time and I’ll be sending extra special wishes. Please use the forum to share how you all are. That’s what we are here for.
Like I said - I’m worried about you so please take extra special care X
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HI @Amz so many mixed emotions, I am glad your mum has been offered a 2nd opinion.
I am just thinking how extremely painful it was for her to have a catheter in the wrong place for a couple of days.
Then on top of it all having to call an ambulance because of your dad having bad chest pains and that he is currently being kept in hospital.
You must feel so stressed and pulled in all directions which is why perhaps you need to take even more care of yourself now.
You and your family has been in my mind for weeks now, but even more so now.
I hope it has helped to write it all down and break it down into the different family issues as opposed to it being one overwhelming emotional, physical and practical issue
XXX
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Thanks ladies. It did help a little to write it down, I appreciate your kind replies, it’s nice to have somewhere safe that people understand.
A nurse sat with mum this morning for a few hours so I went home, had a bubble bath and a really good cry. I’m trying my best to look after myself as I don’t want mum or dad worrying.
I got a call from the specialists secretary saying he will call this week for a phone consultation… which I’m pleased about, but I’m really anxious that he’s going to think I’m mad asking for a 2nd opinion for someone poorly who’s been sent home for palliative care… I know there is a clinical trial for mantle cell lymphoma which may possibly be suitable… but unsure if he would advise she’s too far gone for it 
it’s just all a lot to cope with right now. Praying for a miracle because I will never give up fighting for my mum for as long as she wants to fight.
Xx
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Hi @Amz, your strength and courage fighting for your mum is amazing. It’s ok for you to have a cry and let your feelings out, we can only how difficult and challenging this time is for you, but your still here fighting and being part of this lovely community giving you support. If we at the support service team can be any further support, please don’t hesitate to give us a call.
Bav
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Hi @Amz, I am glad the nurse is supporting you all and giving you the opportunity to go home for a bubble bath and a really good cry, just what you needed I expect.
The phone consultation with the specialist next week sounds good to me, yes, keep fighting for your mum and say what you want to at that opportunity.
Keep praying and you are coping so, so well.
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Mum passed away at home with us on Thursday 
I’m absolutely utterly broken, as are our family.
I have no idea how we are going to get through this.
Thank you all for your support over the last year 
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Oh @Amz. I feel so very sad reading this. You must be just heartbroken, as must all off your family. You all fought so hard and did all that you could for your mum. You have a wonderful family and now need to take care of each other. I say goodnight as I send a really huge hug. I’m so sorry that you are having to go through this. Although only knowing you for a while - just from reading your posts, it’s was so clear just how much she meant to you and you and to her. A very special mum. Sending lots and lot of love
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Oh, @Amz, I just don’t know what to say and I cannot imagine what you are all going through and feeling. I think I feel I know you all so well and your mum sounded such a very special person, a fighter and such a pivotal part of your family.
I am sending you so many hugs, we are here for you, be kind to yourselves and please keep posting.
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Thank you for your kind words. I really appreciate them.
It’s been a week and a bit now since we lost mum, she was cremated today, and we are going to have a family/friends gathering/wake the week after next… But I am so so lost without her How on earth do people get through something like loosing a close loved one? I feel like our whole world has stopped while everyone else’s carries on
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Oh @Amz, it must have been such a difficult day for you today.
What a good idea to wait for a couple of weeks before your gathering/wake.
You must be completely lost because your mum was such a big, pivotal part of your life and she had been there all your life.
I think you describe it so well by saying that you feel like your whole world has stopped while everyone else’s carries on.
I describe it like being in a bubble with the whole world carrying on as normal around me.
The Cruse Bereavement Care main website has a link on it’s front page to The Death of a Parent with some information that you might like to read.
You must still be in such shock and you are doing so, so well and hopefully this forum will continue to be a place where you can honestly say how you feel and think and that we can be there for you.
Look after yourself and take care.
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Oh @Amz, I wish I could just make it all better for you. I wish I could give the answers on how to get through. As with every part of your journey with your mum, all you can do is take each day, hour, minute as it comes and be kind to yourself. Please keep sharing. Sending lots of love X
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So very very sorry @Amz. How are you and your family doing at this incredibly tough time. We’re here for you if we can do anything to support you.
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Thank you Alice.
My family seem to be doing ok. A bit up and down.
I’m really struggling with it right now though. I miss her so so much. Still so hard to get my head around it all.
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Oh @Amz it is so natural for you to be really struggling right now and missing your mum so much she sounds such a very special person who has always been in your life.
Just take very special care of yourself, grief is so exhausting and accept all your thoughts and feelings. We are all here for you to say how tough it is for you right now. Thinking of you loads
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