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Really concerned about my grandma with Leukaemia

37 replies

AintNobodyHereButUsChickens · 11/04/2024 01:21

My 85yo grandma has it, she found out last summer. I can't remember exactly what type it is that she has but apparently it's not the bad kind that'll kill you, it's the kind of thing she'll die with and not from. And it's more common in old people too. She said they won't treat it until her symptoms get worse, which I believe they are doing but she won't see it. She knows her symptoms are from the illness but she doesn't see that she's getting worse iykwim?

She sleeps ALL the time, I do her shopping and take her to the library and to coffee with her friends every week. A lot of times when I walk in the house, she's asleep at the dining table just sitting up in the chair. She sleeps the evening away in front of the TV and wakes up to go to bed around 1am, then sleeps until lunchtime. Throughout the day she'll just drop off sitting at the table or in the armchair.

She has a gas fire in the front room and I've had to go down to her house more than once recently to pick her up off the floor because she fell asleep when she was sitting on the footstool while lighting the fire (don't even get me started on how dangerous THAT is! I've lectured her several times about this) and slipped off.

She barely eats and is dropping weight at a scary rate, she buys her meals from Wiltshire Farm Foods and she gets the small meals which I think are half portions and absolutely tiny. Most nights she throws half away because it's too much.

She gets bouts of diarrhea almost every week that last a day or two at a time. She's always complaining of random muscle type pain that's come from nowhere (ie, when she hasn't slipped off the stool again), and she gets very breathless walking any distance that's longer than from her house to my car (and I park right outside her front door).

I'm not the only one that's worried either, I had Grandmas friend phone me on Tuesday to tell me she's worried. This friend was a nurse for 30 years and she can tell when a person is very unwell. She's been friends with my grandma for some years now so she knows her really well, they get together every Saturday afternoon and she says she can tell there's something not right with her at all. On Monday afternoon grandma phoned me at around 2pm and she sounded so confused and disoriented, she asked if I'd phoned her and told me she'd only woken up 20 minutes ago.

I don't know what we can do to get grandma to the doctor, if we did get her to go she'd probably downplay it all, she 'doesn't like to make a fuss' 🤦🏼‍♀️

What the hell do we do?!

OP posts:
AintNobodyHereButUsChickens · 11/04/2024 08:52

Morning bump for the people who aren't awake at daft o'clock

OP posts:
Asparename · 11/04/2024 08:59

I’d ring up and make an appointment at the doctor and say what you have said in the thread. I know some elderly people do sleep a lot, but the doctor might be able to do some tests and find out what’s going on.

lapochette · 11/04/2024 09:05

I would call the Doctor and explain the situation and my concerns. You DGM may get a home visit from a nurse or they may write out an appointment with an offer of a health check.

AintNobodyHereButUsChickens · 11/04/2024 09:21

The doctors won't make appointments without a phonecall from their triage nurse who will decide if you need an appointment or not. It's generally a very good system but Grandma would probably not agree she needed one and I don't have consent to speak for her medically anyway.

OP posts:
nether · 11/04/2024 09:31

Don't bother with the GP.

From what you describe, she has CLL
Watch and wait for CLL | Blood Cancer UK

If she is becoming generally unwell, then she needs an appointment with her haematology unit. Normally, there would be a point of contact for all patients, often a specialist nurse, and that is the person she needs to get in touch with.

The symptoms of leukaemia are often non-specific, so it's difficult to be sure whether what you describe is leukaemic progression or just random.

I wouldn't wait for next routine monitoring appointment (unless it's imminent). She will have instructions somewhere on what to do if she's experiencing increased symptoms, and you need to persuade her to follow them

sheroku · 11/04/2024 09:32

It would be understandably frightening for her, especially at 85, and I can see why she would be hesitant to go to the GP. Perhaps there's a way you can pick one of the less scary symptoms (e.g. the muscle pain or diarrhoea) and suggest she goes to the doctor about that. At least that way she can get in front of a doctor and get a clearer picture of what's going on. However, you also need to allow her the space to decide what's right for her. If she doesn't want to go down an aggressive treatment route then she needs to be able to make that decision for herself.

Andthereyougo · 11/04/2024 09:39

I’m not a medic so I’d suggest checking other things too. Is there a carbon monoxide detector in every room where there’s a gas appliance ? Is your grandma drinking enough water? Dehydration causes drowsiness.

x2boys · 11/04/2024 09:46

It might be a combination of things my 82 year old mum sleeps a lot too she's had a couple of stroke, s and tires very easily and neither of my parents have big appetites ,they are both 82 .

Greybeardy · 11/04/2024 09:57

As per PP if she doesn't have a CO detector that needs checking ASAP. IIRC the fire service are very good at doing safety checks on vulnerable people with fires (assess smoke detectors/CO detectors, hazards). Not sure if they would be able to raise safeguarding concerns on the back of that (i guess they might), but it might be helpful and an older person might accept it from a 'man in uniform' easier than from their granddaughter.
Fatigue and anorexia are fairly non specific symptoms though and may/may not be related to the (presumed) CLL. Sounds like she needs a bit of an MOT with her GP - if she won't call them you can and you can express concern, but without her consent they won't be able to tell you anything.

nether · 11/04/2024 10:04

A GP will want leukaemic progression ruled out before testing for anything else in a patient with CLL.

Watchful wait doesn't mean the patient has been discharged from haematology, and she will have a means to contact her unit (she should not need to see a GP to be referred). So being checked by haematology is the first step for a current patient.
(as well as non-medical things like checking CO monitor - good shout).

If her CLL is not showing signs of progression, then that is the time to see the GP to look for any other underlying causes.

AintNobodyHereButUsChickens · 27/04/2024 15:39

Small update. She saw a GP on Tuesday for the regular diarrhoea and she also revealed she was bleeding. This is a concern considering she had a hysterectomy a long time ago. The Dr has referred her urgently to gynae for suspected cancer, but since then she has started bleeding everywhere except her ears and eyes. It's not a lot apparently but it's enough to be concerned about. I tried to make her call 111 for advice but she refused saying she couldn't be bothered to wait on the phone and she's been referred to be seen anyway. I just feel like she's starting to give up on life now Sad I'm so stressed out with all this worrying. I lost my mum just after Christmas (Grandma's daughter) so this year has already been incredibly difficult for us all. I can't bear to go through another loss so soon Sad

She was also supposed to have her latest CLL blood test on Thursday but when I arrived to pick her up she had bad diarrhoea again and didn't want to go (understandable).

I feel so out of my depth and I just don't know what to do. My siblings are about as helpful as a chocolate fireguard so it's just me dealing with everything.

OP posts:
nether · 27/04/2024 16:07

When is she being seen?

Is she also bruising easily? Bleeding far too easily is a symptom of leukaemia.

Any progress on finding out contact info for her haem unit?

Flowers I hope you can get her in front of a doctor asap, and make sure she mentions the CLL to them. There are effective treatments for CLL, but she can't be considered for them if she won't make contact
Ilikewinter · 27/04/2024 16:12

Unfortunately it sounds very much like the symptoms my DM had as her leukemia progressed. I would say getting her latest bloods done is the most important thing. Is your gran still under the heamotology dept, if so she should have contact details to speak to them. You can only encourage her to go to the GP etc , I would probably guess she knows the cancer is progressing hence the reluctance to goto hospital / 111.

AintNobodyHereButUsChickens · 27/04/2024 17:24

nether · 27/04/2024 16:07

When is she being seen?

Is she also bruising easily? Bleeding far too easily is a symptom of leukaemia.

Any progress on finding out contact info for her haem unit?

Flowers I hope you can get her in front of a doctor asap, and make sure she mentions the CLL to them. There are effective treatments for CLL, but she can't be considered for them if she won't make contact

I'm not sure, I think they're sending her another blood test appointment after she couldn't attend the one on Thursday. Hopefully it'll be soon. She does have contact details but she tends to just stack any and all paperwork into one heap without any sort of system so I need to hunt through to find it.

OP posts:
AintNobodyHereButUsChickens · 27/04/2024 17:25

She's not mentioned any bruising and I haven't noticed any on her. Mind you, I've only really seen her hands and face as she stays bundled up despite the fact her house is sweltering.

OP posts:
nether · 27/04/2024 17:34

AintNobodyHereButUsChickens · 27/04/2024 17:25

She's not mentioned any bruising and I haven't noticed any on her. Mind you, I've only really seen her hands and face as she stays bundled up despite the fact her house is sweltering.

I wonder if that means her bodily thermostat is off.

There are two possibilities that can be linked to progression of CLL. One is that you have a low temperature (under 36) or that you have an infection that is hard to shake off (leading to a mild fever, which can also leave you feeling cold)

Happy hunting through the paperwork. I really do think she needs a full blood count asap, ideally one taken by a haem unit (who can usually fast track it through the lab and interpret it immediately).

Keep reminding her that CLL is treatable!

AintNobodyHereButUsChickens · 27/04/2024 18:12

nether · 27/04/2024 17:34

I wonder if that means her bodily thermostat is off.

There are two possibilities that can be linked to progression of CLL. One is that you have a low temperature (under 36) or that you have an infection that is hard to shake off (leading to a mild fever, which can also leave you feeling cold)

Happy hunting through the paperwork. I really do think she needs a full blood count asap, ideally one taken by a haem unit (who can usually fast track it through the lab and interpret it immediately).

Keep reminding her that CLL is treatable!

Yes she's waiting on a new appointment for a blood test, she was supposed to have one on Thursday but she couldn't go. I'm hoping the new appointment will be very soon 😣

OP posts:
FortunataTagnips · 27/04/2024 19:49

I agree with @Ilikewinter . It also sounds like how my mum was when her CLL was progressing. I went round to see my parents, not having been there for a couple of weeks, and the change was really obvious to me - more so than to them. My mum was severely anaemic and needed urgent transfusions and in-patient treatment. I really hope your gran can get in to see the haematology team ASAP.

Booksandflowers · 27/04/2024 19:59

Agree with others. The sleeping, diarrhoea and weight loss were all signs of the leukaemia progressing I’m afraid. I’ll admit that in our case it was the beginning of the end although it was a different kind of leukaemia. I hope she gets seen soon.

Ilikewinter · 27/04/2024 21:00

Booksandflowers · 27/04/2024 19:59

Agree with others. The sleeping, diarrhoea and weight loss were all signs of the leukaemia progressing I’m afraid. I’ll admit that in our case it was the beginning of the end although it was a different kind of leukaemia. I hope she gets seen soon.

@Booksandflowers
Unfortunately it was the same for my mum, although she had AML not CLL, it appears that many of the symptoms are the same.

@AintNobodyHereButUsChickens
I know you say your grans all wrapped up can you see if she has a rash on her anywhere?, when my mum needed platelets blood vessles would burst and she would have what looked like tiny dots on her skin, almost forming a rash...if she does then thats an urgent call to make.

Booksandflowers · 27/04/2024 21:04

Ilikewinter · 27/04/2024 21:00

@Booksandflowers
Unfortunately it was the same for my mum, although she had AML not CLL, it appears that many of the symptoms are the same.

@AintNobodyHereButUsChickens
I know you say your grans all wrapped up can you see if she has a rash on her anywhere?, when my mum needed platelets blood vessles would burst and she would have what looked like tiny dots on her skin, almost forming a rash...if she does then thats an urgent call to make.

Yes it was AML in our family too. We thought it was just a bug until the diarrhoea went on too long. Bruises were back too so may be worth trying to see if you can see any bruises. It’s not nice. In hospital the blood transfusions seemed to help and gave us false hope for a bit too.

AintNobodyHereButUsChickens · 27/04/2024 21:27

Next time I see her I'll ask if she's noticed any random bruises or rashes. I think she'll be rather bemused if I randomly start poking at her!

She wants to give me power of attorney for when it's needed but I have to keep reminding her to make the solicitor appointment to update the LPA and will. My mum and sister had it but mum has since died and my sister doesn't live locally anymore, plus she has a lot less time these days since the LPA was originally done. The solicitors will do home visits which Grandma was pleased about. But she says she'll phone them later, then falls asleep and forgets (oh that's another thing, her short term memory is bloody awful now and she gets confused a lot, hence me trying to get her to make that appointment...)

OP posts:
FortunataTagnips · 27/04/2024 21:30

If need be, chase for that blood test appointment. In fact, see if it’s possible to get her in to see her haematologist - they’ll order blood tests to be done the day before in any case.

Booksandflowers · 27/04/2024 21:33

Short term memory also went here too, to the point that Alzheimer’s was being investigated. I always thought that Alzheimer’s would have progressed but now wondering if it was part of the leukaemia ?

TraitorsGate · 27/04/2024 21:34

Sorry to hear she's so poorly. With the lpa and will the solicitor won't change anything if she is confused with poor short term memory.