My Mum was diagnosed with Acute myeloid leukaemia (AML) in May following a routine blood test. No symptoms.
It feels like we have had problem after problem.
She has TP53 gene mutation which affects the chemo resistence.
She has more than 3 chromosome defects which affects the chemo resistence.
She needed teeth out which delayed treatment.
Having a tooth out on each side meant she couldn’t eat as she was in a lot of pain.
She has had intense chemo (Vyxeos).
She has had constant infections and high temperatures on and off each day.
She developed a sore bottom and we had to fight to get an air pressure relief mattress.
We have to fight for anyone to help her wash.
Her memory has deteriorated.
She appeared very confused, almost like she had dementia. This seems a bit better now.
Her speech was slurred for a while…
She fell in the bathroom in the night and bruised her bottom and chest. She couldn’t get up and just had to call help for staff to come.
We were called at 3am a couple of weeks aho to day she had a brain scan and she has had a bleed on the brain.
Her picc line wasnt working properly so she’s back to having a canula.
Her veins are very resistent so this is very painful.
She developed a chest infection.
She now has pneumonia.
They can’t do any procedures for this due to the brain bleed. So its just another course of antibiotics.
She doesn’t want to eat, a nibble is all she manages.
Her hands, fingers, legs and feet have ballooned with water retention.
She cannot walk unassisted. She cannot dress or wash herself.
She has lost her hair (ok, so we did expect this one).
There are different staff on all the time, and different staff tell us different things (eg a nutse asking what makes us think her skin is sore, when they are the ones who told us, and have cream prescribed for it… Just one example of many)
On one occasion, when an agency nurse was used and my mum asked for more water, she replied “do you know how far I have to go to get water!”
No one answers the ward phone, so if we try to contact them its pointless, and I live 60 miles away.
Her documentation is not up to date. Cant face that. Neither can she.
People mention Attendance allowance. Again, cant face that form.
I feel like she will never come home. I mean, how would she cope in her own home anyway… So theres so many unanswered questions there.
I just never expected the journey to be so hard.
Oh @Jupiter I really feel for you and your mum, it must seem one thing after another and a real struggle for you both.
I certainly know the feeling of not being able to face a form.
You must be absolutely exhausted mentally, emotionally, physically and practically.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888 and we are here for you on the forum. If find just typing things helps me very slightly.
The main thing is that you really try to look after yourself to help you cope, being a family member/carer is the toughest role you can have and nobody asks how you are, we do and really care. Please keep posting
@Jupiter, I’m so sorry you and your mum are going through this. I had Acute myeloid leukaemia (AML) 3 years ago, and the treatment causes so many side effects and infections - it really can be awful. A seemingly endless series of medical hurdles to get over. At the time, it feels very catastrophic - like a personal disaster movie unfolding. Incredibly though, many of us do get through this, because the medics see these issues time and again with their Acute myeloid leukaemia (AML) patients, and know exactly what to do. The Acute myeloid leukaemia (AML) treatment period is notorious for fevers, infections, swellings, rashes, peeling, ulcers, loss of appetite, vomiting, diarrhoea, fatigue etc. Please don’t think your mum is responding particularly badly - it is unfortunately par for the course a lot of the time. But that’s good news in a way!
What shouldn’t be par for the course is rudeness from staff and difficulty getting support. It’s shocking and sad to hear how stretched the staff are there. I was fortunate to be in a just about adequately staffed hospital, but I know from family experience that other hospitals haven’t enough staff, and those staff that are there are overworked, stressed and exhausted and on the brink of breakdowns themselves. It inevitably affects patients. This shouldn’t be the case - it is so wrong in what was recently a wealthy first world country - but that’s where we are in Britain in 2023. If you feel a complaint should be made, the hospital website should have details on how to submit one. And maybe have a chat with the ward manager about your concerns? Your mum’s fall in the bathroom should at the very least be ‘datix-ed’ (submitted into the computer system as an incident of posdible concern) because the more incidents caused by staffing level failures/neglect that are reported, the more the powers that be have to listen that there isn’t a safe level of staff there.
I know what you mean about not being able to face all this form filling. I couldn’t and didn’t apply for any benefits, and couldn’t get much help in lockdown. But I have since found out Macmillan can help and advise with benefits over the phone - maybe worth a ring? And they’ll work out what other benefits she/you might be entitled to as well.
As for coping in her own home once she’s medically fit for discharge, I do know from experience with my elderly dad that they don’t discharge anyone older until it’s deemed there is enough care in place for their needs - and this is assessed and sorted out by the hospital. It might well mean a longer stay though.
I can really hear how stressed, shocked and worried you are, @Jupiter. Do you have somebody you can lean on a bit for support? Ways of managing your stress? Something relaxing to do in between all this rushing around?And of course, we’re all here for you if you’d like to talk to us.
Thinking of you both. X
“Local authorities have social workers who deal specifically with cases of abuse and neglect. Call the person’s local council and ask for the adult safeguarding co-ordinator.”
You are all going through a stressful time
While I was having treatment back in 2017 there was an elderly lady across from me who wouldn’t ask for help as she said the nurses were busy
They would sit her out and she would stay there all day not to bother them
She was given her drink in a feeding bottle piping hot and the nurses would leave it so she couldn’t reach it and it was too hot for her to join in while we had our dinner
She didn’t get a lot of help by being silent and I can understand the oldies don’t like to bother anyone
I reported what I was seeing to her daughter and she was not happy and went to find the head nurse
My brother also had a word with the nurse in charge about what he had seen
The lady did get help and was bed washed when she couldn’t get out of bed and I did my best to call nurses when she needed help
This is an appalling catalogue of dreadful care (or lack of). You don’t mention your mum’s age, but clearly she was reasonably well before her diagnosis. Not one thing that you have written suggests a calm considered discussion between your mum (and you if your mum wishes) and the consultant in charge of her care. Nowhere do you suggest that she was offered choices about her treatment, nor what the pros and cons might be.
I think you should name and shame the hospital (here at least). You should also ask to speak to your mum’s consultant (with her permission) - in person, not on the phone, asap. It is the very least to expect - then you can make a plan for what happens next. Good luck. (I am a retired consultant and I am utterly horrified by what you have written.
@Jupiter I am so very sorry to hear of what your mum is going through. It sounds incredibly tough for you both. As @Erica has said above, please don’t hesitate to give our support line a call on 0808 2080 888 if you want to talk anything through, or if there’s anything we can do to support you both, at any point.
If you’re feeling like there are difficulties in communication with your mum’s treating team, you might find talking to the Patient Advice and Liaison Service (PALS) within your mum’s hospital helpful. These services exist to support people to resolve concerns/problems they’re facing with their treatment and care within the NHS, and should act as an advocacy service for patients. You can find your hospital’s PALS using this webpage here - Find patient advice and liaison services (PALS) - NHS (www.nhs.uk).
I also wondered if this section of our website might be useful at all, as it’s written for people who have a loved one affected by blood cancer - My friend or family member has blood cancer | Blood Cancer UK. If there’s any information we can send you, or anything we can do to support you, please do let us know.
Thanks all, I will reply properly when I have more energy. Just wanted to let you all know that I am grateful for your responses. And I have read them all xx
Hello as I’m reading this I feel hope for my father, I have a questions for you. Did your family stayed with you at the hospital? I think this makes the world of difference to the patient, to go through all this with their loved ones
I’m so sorry for the late reply, @Valentina123. How is your father? And how are you?
No, no family could visit me in hospital because it was during the pandemic and I wouldnt have survived covid. But I really hope you’ve been able to visit your father. X