Hi I’m new here and seeking advice for my Mum…
Four weeks ago you’d have thought nothing was wrong and then so quickly she became ill. First pale and lack of appetite and then no energy and falling asleep all the time. A week later she saw the GP who took bloods - low blood platelets. She was sent to Haematology at the BRI and her blood had dropped so low they gave her a blood transfusion and bone marrow biopsy. Yesterday she had a full body scan. That all has moved quickly within three weeks.
What worries me now is that she has just received her next appointment, which is with Oncology & Leukemia AC but not for another two weeks! That seems ludicrously far away for someone who has gone downhill so fast and needing blood transfusions? Is that normal or what should we be expecting and/or asking for?
It seems very departmentalised and noone one point of contact overseeing her needs. I don’t want her falling down the cracks of a failing NHS and all to aware we need to advocate for her.
Advice welcome, thank you!
Hi I’m new here and seeking advice for my Mum…
Hi @Yorkshirelass thanks for posting and welcome to the forum. Sorry to hear you’re going through this worrying time and that your mum’s feelings so poorly.
It’s so understandable you have concerns around this. Your mum’s appointment will likely have been booked in relation to all of the bone marrow and imaging tests being back by then and her case having been discussed in an Multidisciplinary Team meeting, which unfortunately does all take a bit of time.
In terms of a key contact at this point, you might find that asking the day care nurses or Haematology secretaries to get in touch with the Clinical Nurse Specialist team to support your mum in the meantime whilst she’s going through these test and waiting for results. Please don’t hesitate to give our support line a call on 0808 2080 888 if you and/or your mum wants to talk this through, at any point, we’re here to support you however we can.
I’m so sorry to hear about your worrying experience of your mum becoming ill so quickly.
I’ve been living with blood cancer for nearly eleven years and I have been with the same treating team for the whole of this time. In my experience, things have changed significantly within the past year, perhaps due to under-funding of the NHS and other related pressures on the system.
In January, my condition was found to have relapsed and subsequently to have mutated to a more aggressive form of disease. Rather than seeing an increase in urgency commensurate with the speed of disease progression, I have had the most frustrating time ever trying to get appointments. My treatment has been decided on but I am having to wait nearly two weeks to sign my consent for it before it can be prescribed. This is not typical of the wonderful team who have looked after me all these years and indeed the appointment I am waiting for is an overbook and probably means my consultant will have to skip his lunch, which is not sustainable for him.
Firstly, some advice I was given recently is, ‘It’s the squeaky wheel that get’s the oil.’ It is not my natural disposition to chase things up but it seems as if at the moment we all have to: I would have missed my bone marrow biopsy, for example, if I had not phoned up to ask when it might be - which was in fact the very day after my phone call! Just keep trying politely, but without giving up, until eventually you find someone who will help you to move things on for your mum.
Secondly, try to enable both you and your mum to find ‘soothing’ activities to pass the waiting time calmly, depending on what your mum feels able to do: even listening to audio books or rewatching favourite movies. Today we are looking after our neighbour’s dogs who are very cuddly and diverting.
Waiting is the worst at times like this! I hope soon you will have some reassuring news of a treatment plan for your mum and that you find some supportive people to talk to, e.g. via the support line above.
Hi @Yorkshirelass I am so glad that you have found us so quickly.
I expect you are both in shock, it might well also be a scary, worrying time, it was for me.
I was diagnosed 19 yrs ago and I often say medical people talk a different language and it is a never ending time of waiting on tests, results and appointments.
As @Coastgirl says so well I have also learnt to be '‘pleasantly assertive’.
Unfortunately test results do take time and Covid times have meant there is a backlog of appointments.
I can imagine that seeing the deterioration in your mum must be so worrying for you and of course your mum.
Any food is better than no food and liquid intake is so important.
@Alice_BloodCancerUK says a key contact for your mum (and you?) is something you will get.
Now is a time for you both to write down questions you want to ask.
Also your mum’s symptoms, their severity and impact on her lifestyle.
Also medications that she be on and other conditions she might have and a relevant medical history.
I do it because my mind goes blank when I walk into a medical building.
As we often say the waiting is the worst feeling so look after and be ever so kind to yourselves, anything to divert the mind is good.
Please do let us know how your mum’s appointment goes in 2 weeks.
Not sure that I am say any more than has been said already.
This is the worst time, the waiting, hoping things will go at the same pace, but getting caught in the lull.
I still remember the waiting, before I was first diagnosed. I even had an appointment postponed until a result had come through.
Luckily I had a phone call and the person I spoke to explained why.
As has already been said they will want to get all the results through first to be able to get an accurate picture, unfortunately these things take time.
Someone has already suggested getting in touch with the hospital and asking to be in contact with the specialist nurses and the secretaries.They are there to help.
I volunteer in my local hospital and know that phone numbers are available and staff generally only to happy to help.
The helpline here at Blood Cancer UK are such a help and support.
I wish you both all the best and know that there are a whole load of people out there thinking of you both.