Please let us know how the call goes @Amz today.
So they are going to continue with chemo, just without the rituximab, to hopefully still get her into remission. However this drug is the best for doing this, so her now not being able to have this, my mind is just running to worst case scenario of the other chemo not working 
how do you stop yourself from doing that? My mind is in overdrive right now 
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Hi @amz. What an afternoon! I think, sometimes, you can’t stop your mind going to those places and the more you try to stop it the more it builds up and the worse it gets. It’s a natural response. Just keep trying to remember what the doctor said, write it down, and when your mind goes to that place, which it will, read it. What I took from what you said is that hopefully, the chemo will get her into remission. I know there are no guarantees and that’s really scary. Just give yourself time to acknowledge those feelings. We are all here to listen and support you and remember the support line to. How did you mum and dad take the news?
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The nurse said mum was emotional, but feeling better since the drug was out of her system. I’ve text her and she seems ok, but I don’t want to push her to talk about it. I don’t know how dads taken it as he’s not responded to my messages yet.
I know this treatment she is now going to have is better than no treatment… but I just feel so terrified.
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Hi @Amz, if you find the answer to our million dollar question please let me know, I am sure I have a washing machine going round and round on overdrive in my head sometimes projecting the worst.
The only thing I have found is it gets worse if I am not sleeping, run down or looking after myself properly.
I bet your parents are thinking the same things, are you able to talk about such things?
Take care and stay safe.
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They are trying to stay positive, and I think we struggle to all talk as we all deal with difficult things very very differently.
I really struggle with the unknown, like a lot of people. So I think the next few weeks/months are going to be a real struggle. But I guess I just have to accept that x
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Hi @Amz and we are here to support you through everything and if you would like to talk you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk.
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I think the unknown is the worst. Just take a day at a time. Please keep sharing so we can support you. Sending you and your family special wishes x
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Hi @Amz, the unknown and feeling out of control is the worst. keep letting us know how you are feeling, we are here for you.
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We’ll be thinking of you @Amz . You must be going through a really tough time. Often when you think of the worst case scenario, the reality ends up being better and I hope that’s so in your case.
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Hi guys,
So mum came out of hospital a few weeks ago, she ended up doing just under two months in there.
Her bloods etc were looking good last month on the chemo… and then today at her appt the consultant said her bloods looked good but her lymph nodes were larger which means the chemo has stopped working as much 
So as of today she’s stopping the chemo tabs. She has to have a scan in the next couple of weeks and then possibly onto the next stage which is some form of stem cell transplant (we think).
Why is this journey never simple feeling very deflated. Trying so hard to stay hopeful and positive but it’s so hard! 
sorry guys, just feel like I needed to vent and write it all down somewhere.
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Hi @Amz. I’m glad you have this space to vent, it’s so important and you have a lot to vent about. I completely understand how you must feel deflated, it’s really disappointing for you all and a lot to take in. I think you’ve been great at being positive but it really is ok to have a down day/days - it’s only natural. Remember the support line is there if you need it, I’ve found it so useful over the last couple of weeks. How is your mum handling the news? You really need to make sure you take care of yourself. We are all here for you X
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Hi @Amz yes, please vent, that is what the forum and us are there for.
I am certainly not surprised you feel deflated and other feelings I expect.
Life, this journey is never simple and our emotions are like a rollercoaster where we are not in control of events. I love your use of emojis.
How does your mum feel and perhaps she needs to say how it is for her too.
As @Nichola75 I would say it is useful, if you can, to talk to each other and take care and treat yourselves.
Keep venting or something has to give.
@Nichola75 has given you the wonderful support line details
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Hi @Amz I feel your frustration. It’s never simple is it? I hope that you are able to get some proper answers soon and put your mind at rest.In the meantime vent as much as you like, that’s why we’re here.
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Thanks for your replies guys, appreciate it.
She’s back in hospital as her breathing deteriorated they have done a CT scan and we get the results tomorrow. Not sure what else they think they can do though I just get the feeling that because it’s a poor prognosis, that they will just give up!
I’ve asked if it’s possible to be referred to Derriford hospital down in Plymouth, I know it’s a long way for us, but they have a specialist in MCL which I feel she should see… as I don’t feel like they know enough and have enough resources/access to drug’s up here. Not sure how possible it is though so guess we will have to wait for an answer on that one.
Just feel very low, took the day off work cause I just cannot concentrate. Hoping for some better news to come soon
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Hi @Amz I am so sorry to hear that your Mum is back in hospital.
I hope you get the transfer to Derriford hospital sorted.
Please let us know how the CT scan goes.
Also please look after yourself so you have the strength to deal all you have on your plate and don’t forget we are all here to support you and the support line details are above. Take care.
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Hi @Amz, I’m really sorry to hear that and am sending extra special wishes to you and your mum. It must be very tough at the moment. How is your mum in herself? Please take care and keep us updated. Be thinking of you both X
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Thanks guys. I think she’s ok? She’s not really contacting us much right now and the hospital don’t keep us informed. I’ve really lost faith in them to be honest I mentioned to the Macmillan nurse about a possible referral to Derriford, and her response was ‘the consultant has been speaking to other drs around the uk through this, but I will broach the subject with him tomorrow’ 
Surely if there is somewhere better for treating my mum, that should be the priority? I just want the best for my mum, and I don’t feel like she’s getting that right now.
Mum should get the CT scans this morning, so I guess I will wait and see if anyone bothers to let me know what’s happened/results. Feel very frustrated and upset right now.
Thanks for all of your support xx
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Hi @Amz, I am not defending the medial services, but one very brilliant thing that has come out of Covid times is online meetings (Zoom, Microsoft Teams etc.) bringing together medical experts from all over the country to hold patient case conferences to pool expertise, resources and experience.
As for letting you know I find if medical people have spoken to my relative, and she is able to understand and make her own decisions, and unless it is prominently on her notes that she wants them to contact me or I have Legal Power of Attorney they are so busy that I am unlikely to get a call.
It is nothing nothing personal to you, but I really, really understand that you must feel so fearful, powerless, isolated, angry, frustrated and upset and perhaps we understand as sometimes no others can and that is why we are here to support you.
You are doing so well in this so difficult situation, please keep posting.
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It must be ever so hard for you. I hope you get a call later today.keep us updated x
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