@Maz please wish your Mum a vert happy birthday from me.
Really celebrate.
We await hearing how you get on. xx
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Hi @Maz thank you for sharing these. As others have said if you’d like to talk this through, please don’t hesitate to call our Support Team on 0808 2080 888. Please do let us know how you get on if you get the chance. We are thinking of you.
Best wishes,
Tanya.
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Thank you. Had telephone call, bloods a bit worse but he’s going to ask his colleagues to discuss any treatment, he’s still not sure if it’s a Lymphoma or Myeloma, but he’s thinking it’s a plasma cell cancer, so it’s called Lymphoplasmytic lymphoma ? Is that right? .Mum has said she doesn’t want treatment at all, especially when he mentioned chemotherapy.He doesn’t want to do more tests at the moment. So we wait for appointment to discuss the treatments available and the possibility of not treating and if that’s her choice we then discuss what happens with that choice. It’s v complicated and I’m feeling utterly heartbroken and scared at what we may be facing if she choses not to have treatment.
Heamoglobin is 96, was 120 in Nov
Platelets 71, was 97 in November
I can’t remember what else he said about the bloods but it’s written down. I’ve gone out for a walk to clear my head x
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Hi @Maz. Thank you so much for the update.
Off course you are heartbroken - it’s your mum x
Did the team answer all of your questions.
I know the but knowing fir definite is still really hard.
We are all here for you. Sending lots of love x
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Hi @Maz, thank you so much for sharing this with us. This understandably is a lot to process and take on board and it’s only natural to feel heartbroken and scared, after all of that information that’s been given to you all at once. Take your time and I think a walk to clear your head sounds like a good idea. We are here for you if/when you’d like to share more.
Best wishes,
Tanya.
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Hi @Maz i am glad that you have gone out for a walk to clear your head and try and make sense of everything that is going on for you and your mum.
I am certainly not surprised that you are feeling utterly heartbroken and scared of the future.
I expect you are feeling completely powerless over your mums decision and having read your posts it is obvious to me how much you love and care for your mum.
Keep going on those walks it definitely helps me clear my head and get things into a slightly better proportion.
The Blood Cancer UK support line is there for you on 0808 2080 888.
Please keep posting we are here to support you both.
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Hi Maz,
Been there walked the woods and listened to the birds. I do hope your mum is able to receive sympathetic treatment.
I must emphasise I’m not a Haemotologist or Oncologist, my comments come solely from being a ‘Professional Patient’ with WM.
If your mum is eventually diagnosed with Lymphoplasmytic Lymphoma and they detect an Immunoglobulin protein (IgM) often called Paraprotein in her blood they tend to call it Waldenstroms Macroglobulinemia (WM). A rare NHL, with I believe something like 3 in a million people diagnosed in the UK. I can tell you by experience there are plenty of ‘medical people’ have never come across it yet alone pronounce it.
It sounds like they are still seeking those finite evidences. I can relate to the lengthy wait for the definitive diagnosis but that directs the planning and treatment.
When I was finally diagnosed with WM after 10 years of watch and wait I was asked if I was willing to go on a drug trial.
Now this is where I want to support but definitely not raise hopes. The trial is a study of current chemotherapy against a targetted gene therapy. There was no choice if which therapy a patient went on. Its a random trial.
I went on the gene therapy arm, the aim to study if the efficacy and toxicity is an improvement on current chemo practice.
Having had chemotherapy back in 1984 I can report the burden on my quality of life is far less on this targeted therapy. Like many on the forum I also have several comorbidities.
As said I don’t want to mislead or raise hopes but it may be worthy of you enquiring into what therapies other than chemotherapy there are available. The support from the BCUK nurses here can help I’m sure in what may be available.
Hope you and your mum get answers quickly.
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Hi, so, we are no further along. He’s still unsure. This is the plan- if her hemoglobin drops further he will treat with chemo that she doesn’t want. If it’s a Lymphoma he will do the same, she’s adamant she doesn’t want treatment. I’m assuming then she will have palliative care? I need to ring up but I just don’t have the time. I work part time in a GP surgery them spend the rest of my time either with mum or chasing up carers and appointments
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Oh @Maz you must be so, so exhausted keeping all the plates spinning and your mum is still adamant that she does not want treatment.
We are here for you to be able to say how it really is for you, when you get time, to post or the Blood Cancer UK helpline on 0808 888 2080.
Please try to look after yourself as well as you do your mum. xx
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Hi @Maz. I’m sorry you still don’t have any definite answers. It must be so hard trying to juggle things! Please take care x
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Hi so just an update, well it’s not an update at all really. We still haven’t heard back from the consultant re her diagnosis. He was having a MDT meeting last week. I rang his secretary on Thursday last week, yes, the MDT meeting had taken place. So what was the outcome? Oh I’ll get him to call you she said…He hasn’t and we still don’t know. I’m utterly at a loss as yo understand why we are left with no answer again. We did receive a letter, for a telephone consultation…in July! Along with a blood test form so presumably that t/ c is for the blood results…I hope! I’ve rung every day, to no avail. All I get is an answer phone, I leave messages that are politely assertive, still getting me nowhere. I’ve rung PALS who said they will try and chase him, or get someone to call me. No one has. I went into work last Thursday, my boss asked me how I was and I just fell apart. Weeks and months of worrying take their toll. She kindly sent me home and since then I’ve been ill with a bad chest infection. I’ve been off this week trying to rest and get my energy back to fight this for Mum. I don’t know where to go next with this? Any help or advice is much appreciated x
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Oh @Maz unfortunately you have a long bank holiday weekend coming up so to be realistic perhaps I do not think anything is going to happen over that period.
Yes @Maz the weeks and months of worry have caught up with you emotionally and health wise and perhaps now you need time just to care for yourself as well as you are looking after your mum.
Perhaps an appointment with your GP is in order to see if they can help you and perhaps if they are your mums GP too, with your mums permission in writing, you might make it a double appointment to see if they can do anything to assist her.
Look after yourself otherwise you cannot be there for your mum and take care and keep posting
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Hi @Maz. I really feel for you. It’s so frustrating when you have been promised a call back.
@Erica suggestion of seeing what your GP can do to help is definitely worth a try. It may be that you have to make an official complaint to get PALS to help further? However, that can be tough so you need to be in the right frame of mind to do it.
It might be worth giving the helpline a ring to see what they advise.
Please take good care of yourself. Things have obviously caught up with you which is only natural and you need to take the time needed X
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Hi @Maz, thank you for sharing and I’m so sorry to hear how difficult it has been for you to get through to anybody, and to be feeling poorly on top of everything else must be so tough. Would you like to speak with our Support Team? We are here for you on 0808 2080 888 or support@bloodcancer.org.uk if so.
You’re making such a great effort to try and find out some answers and I’m so sorry you haven’t been able to- you’ve been speaking with all of the right people, and doing all of the right things, and it must be exhausting. When you feel up to it, I do think it could be worth speaking with the GP too, in case they’re able to support/advise, and perhaps chasing up with PALS. If you feel it would help, it is also your Mum’s right to request a second opinion.
We are here for you. Take good care of yourself, and I do hope you start to feel better soon.
Best wishes,
Tanya.
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Hi, so still no answers from consultant and mum’s GP hasn’t heard anything either, thru don’t even have her latest blood test results.
I’ve contacted PALS who said someone will contact me, nothing heard. The consultant secretary is now fed up with je calling, she said yesterday when I finally got hold of her, that he " should" be calling me today. No he hasn’t. Three weeks we’ve been waiting for a diagnosis and a treatment plan. For an elderly lady who has cancer this is beyond appalling, I’m beyond angry now.
My health is suffering as a result now. I was very ill last week with a severe chest infection which still hasn’t gone despite antibiotics. I’ve a Dr appointment tomorrow. Mum is totally fed up and is now saying there’s no point in anything.
Where do I go next with this? Mum’s GP said she would try and call the consultant but that was earlier this week and I’ve not heard back.
This is so incredibly stressful 
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Hi @Maz. I completely understand how frustrated and upset you must be, especially when you are told you will get a call and you don’t. There is nothing worse than sitting waiting for a call for it not to come.
So often, things are easier to deal with when you have a plan and that’s not happening for you. I can hear the desperation in your post. Understandably you just want some answers, or at least some communication!
Stress can cause so many illnesses and I’m so sorry that you are so unwell. It must really be taking its toll. It’s also sad to hear how your mum is feeling.
Have you put your concerns in writing to PALS? I wonder if this might be worth doing.
I would also suggest giving the support line a ring to as they may be able to advise you on next steps.
Please take care. Sending lots of love to you both X
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Hi @Maz I certainly cannot better @Nichola75 response and sentiments.
Yes, it must be so frustrating for you both.
Please let us know how your GP’s appointment goes tomorrow and please look after yourself as well as you do your mum. xx
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Hi, well we now have a diagnosis!! I finally received a phone call from one of his senior heamotology nurses yesterday afternoon. Mum has Lymphoplasmacytic Lymphoma, he’s asked if we want treatment, Rituximab, given as an infusion, once a week for four weeks. Mum has said no. She’s only happy to accept blood transfusion if necessary. She’s bedridden and is difficult to get her to hospital, I’d have to use up my annual leave to take her but apart from that, she’s adamant she doesn’t want treatment. So we now have a phone call with the consultant and the nurse next week hopefully, to discuss a referral for palliative care to the local hospice.
The nurse apologized for the delay in replying and responding, consultant has been on holiday… So now we move on to a different route with this cancer. One I’m scared about and not familiar with. No treatment for a cancer that is slowly advancing is incredibly scary for me and for her, but she doesnt say how she feels, not knowing how long she may have left to live, knowing we have to plan ahead for things like a funeral and adjusting her will. Terrifying. But at last we know, that’s important to us. X
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Morning @Maz. Thank you for taking the time to update us. Yesterday must have been a difficult day and you must feel exhausted!
I’m so glad somebody contacted you yesterday. I really didn’t want you to have another weekend of waiting.
It’s good you have a diagnosis. However, I can only imagine just scary it is for you all. I know the palliative care teams are a great support to both patients and their families.
Use this time to write down all of your questions and perhaps ask your mum if she has any to?
I hope the medical team continue to communicate well with you both. Remember, we are all here for you X
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Hi @Maz thank goodness you got the call although it must have been traumatic to hear your mum tell them that she does not want treatment adamantly.
Yes, you start on a new path and who knows the length and winded the path will be.
I was given 5-10 yrs at diagnosis 19 yrs ago.
Yes, there are terrifying conversations to have, but a good philosophy for life is to make the most of every day.
Personally I have only heard good things about hospice care.
Really look after and be kind to yourselves and please keep posting.
If you would like to talk The Blood Cancer UK support line is there for you on 0808 888 2080
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