Mum’s dmyeloma is now aggressive leukaemia too and she is in terrible pain. How to help?

[sydenhamhiller]

I am so sorry to bother everyone on here, but I feel like I have been chucked overboard into choppy waters and not sure which way to start swimming.

I live in London, and my parents live in the NW. We were all due to see them at half term (I teach) when DH and I had COVID and then we planned to see them at New Year’s but lockdown hit again.

Since November mum has struggled with back pain, and initially thought it was from gardening. In early February she was told it was Myeloma, and then 2 weeks ago they discovered it has evolved into the rare plasma cell leaukaemia.

I had not seen my mum since August. I called the consultant last week and said I was planning to come up and see mum (I know against the rules but I have been scrupulous about the rules so far), she said if it was her mum, she would be doing the same.

I came up yesterday, and it’s - obviously heart breaking. She is so frail and looks so much older, and worst of all is in so so so much pain.

She said that when she calls the nurses at hospital, or mentions it to the District Nurse they say call the GP - who is not particularly kind, communicative or proactive in my mum’s care so far.

Mum has morphine tablets - and for the past 2 days - some morphine liquid - but it’s hardly making a dent in the pain.

The consultant said to me that mum has a year at the most - my dad and I think that seem very optimistic looking at her - and also I feel desperate to think she’ll be in this pain for a year.

I’m trying to be practical - I called up a wheelchair rental yesterday and we’re picking up a wheelchair this morning; I’m going to book at stair lift; ordered a key safe so the daily district nurse can come in even if dad is at Tesco. Mum wanted a carer, but dad wanted to do it all, and I have managed to persuade dad to get a carer...

How can I help with getting someone to help mum with the pain? Can I call the GP? Do I call the hospital team? Mum and dad are obviously and understandably shell shocked by this whole thing, so are a bit vague on which team/ person is in charge. Mum goes to haematology every week for treatment - but would she be under oncology?

My parents have contacted Macmillan, and someone is coming next week - are they best places to manage mum’s pain?

I know I sound interfering - I’m really not in real life!- I just feel terrible mum is in such pain, and need it to stop. She said that it was so bad on Tuesday she just wanted it all to end...

Sorry this is going on and on... my other question sounds terrible, and I don’t know what to do.

We’re about a 6 hour drive from my parents. I work F/T (it’s my NQT year), so does DH, we have 3 kids. Like everyone in this situation, it’s full on. What do I do about seeing mum? I can’t pop round after work, or for the day. It takes most of a day to get here. Do I come up every weekend, every other weekend? Do I talk to work about compassionate leave - but how much time for how long? I know it’s not about me, but I feel so consumed by guilt by being so far away, and I don’t know what to do...

Thanks for any advice you can give, and sorry for such a long post.

Hi there so sorry to hear about your mum. I understand how you are feeling. I think the pain relief should be down to the oncology consultant and they should be ensuring she is as comfortable as possible. It doesn't sound like it's being managed effectively.

Are you on Facebook? I typed "leukaemia" into the search thing on Facebook and a number of groups came up on there which I think might be more helpful to you than here as you don't get much traffic here. Also on the Macmillan website is a discussion forum for different types of cancer where you can get lots of great advice. You can also call the Macmillan helpline number just for a chat about how you are feeling and for advice. They are great.

I hope your mum's pain is controlled soon and she is made comfortable. Am here if you need to talk

I am so sorry for you and your poor mum. She is entitled to care from the MacMillan nurses. You could ring the local hospice for advice and google local cancer charities.
As well as phoning, put everything in emails. To your gp, the MacMillan nurses, community nursing service, hospice, PALS. Your mum needs proper palliative care. There should be a palliative care team at the hospital and in the community.

There is a saying in the NHS:
" If it isn't written down, it didn't happen".
Follow up every single phone call with an email. Get everyone's name and job title.

Myeloma U.K. www.myeloma.org.uk/

Good for advice but closed for Easter. In the meantime phone out of hours doctors for advice. They can check her consultant if you don’t know. They can advise re pain relief and prescribe.

Also if you’re being treated for cancer you usually have an emergency number to ring. Check she has one.

Good luck.

Ring today. Explain the situation.

Missed your second question. That’s tough. I’d find out more info from the consultant if you can (with her permission obviously). Take it from there. You can’t take compassionate leave now really until you know more.

The consultant will be a haematologist (not oncologist) as this is a blood cancer. But yes, they are the person who should be dealing with pain management (as some analgesia reacts dangerouosly with some drugs used to treat leukaemias)

Is there a specialist nurse for her unit? They are often a good starting point.

Macmillan don't always do everything you think they will. It might be worth getting in touch with Marie Curie instead.

Is there a local cancer support centre?

Don't make any work related decisions until first shock of her diagnosis has subsided. Visit as and when you can for now. Find out the rules on compassionate leave - ie work out your options - and then pause a bit before deciding

Blood Cancer UK provides telephone support, as does Leukaemia Care UK

The GP and prescribing pharmacist at the surgery were very helpful with my dad's pain meds. He was on slow release 12 hour morphine tablets with liquid oramorph for breakthrough pain. The NHS is very disjointed though. I found people individually helpful....when you could eventually get hold of them. Getting your mum comfortable is basic needs stuff - have you been given any out of hours contacts by her oncology team?

My mum died of cancer last year so I speak from experience

1. You are allowed to visit for compassionate reasons even in lockdown. Your mums consultant could give you a letter saying her diagnosis

1. My mums GP was also effing useless. She wasn't in pain but she had terrible oedema and similarly couldn't get any help. I took some time off work, went to stay with them and kicked some arse:

• I called up the GP and requested a home visit and refused to be put off. I then attended it and advocated for mum.

• mum had already consented for me to discuss her medical condition and put this on record with the GP surgery and with the hospital

• I moved mums bed downstairs and made her more comfortable there. The district nurses supplied some equipment; a commode, pressure relieving mattress, over bed table and in the end a hospital bed. Sorry to say but a stair lift might be an expensive albatross if a move downstairs is what is needed

Things we did buy that helped included an electric blanket and a recliner chair

• mum made a DNAR order and we explicitly discussed her wishes about her death so I could be sure to advocate what she wanted. She wanted to die in a hospice and I cannot recommend that enough when the time comes. They were amazing even with COVID

• mum had known about her cancer for much longer than your mum has and she was already known to Macmillan and the local hospice. Macmillan were mostly not much help but they stepped it up towards the end and did advocate for her with the GP so glad they are getting involved

• mum was under oncology and weirdly they were not helpful at the point when she was dying. Her consultant said she had months left a week before she died but then again he hadn't seen her due to lockdown only phoned.

I realised she needed a palliative care specialist at that point and I think your mum does too. Ours came via the hospice who are a charity and not NHS. Macmillan got us into the hospice system and mum attended day clinics there and they were the very best with symptom control and also helped her and dad (and indeed me) come to terms with her dying. She could talk to others in the same position, go to groups, she had physio, OT and counselling there. It was really amazing

I highly recommend you look up your local hospice and see what they can offer and ask how to get referred.

It is really hard to know how to balance your own life with seeing a dying parent. My mum always wanted her children to get on with their own lives. I had prioritised seeing her every holiday and at least once a month since her diagnosis (4hr drive away) and that felt a good balance for a long time

When she called me and asked me to come 2 weeks before she died I am so glad I dropped everything and went. My original plan was to go for a week and sort stuff out but when it became clear she was dying obviously I stayed.

You need to ask for a palliative care team referral and Macmillan nurse. You do have to badger sometimes and be an advocate.
It's also worth thinking about a power of attorney for health/welfare to allow you/your dad to make decisions for your mum. You download the form from the internet.

Make sure your mum is taking the oromorph regularly and not saving it til the pain gets bad.
OP

You don't sound interfering at all you sound like a daughter who totally loves her mum. Sorry I have no helpful advise re pain but agree sounds like she needs something more x

On reading that back I realise that I shouldn't imply that your mum might not be dying right now of course. No Dr can ever really give an accurate prediction.

On at least two occasions before mum did die I thought she was imminently going to because she looked so bad and once was when she just needed her pain from bone mets controlled and she was a lot better after that. She started having injections of a fearfully expensive drug (denosumab) that was a massive game changer for her for quite a long time.

I shouldn't think your mum would want you to take months out of your job and your family but I'd say maybe invest a week or so now to get things set up better, visit regularly after that (especially if vaccinated/ have had Covid) and be ready to take some compassionate leave if needed ie warn your employer of the situation

The only upside of dying of cancer is that you do have warning and so you can talk as a family about what you all want and prepare things. Mums friends all knew about her illness and that made it less hard for us to tell them when she had died. She had her finances, funeral arrangements and will all sorted. She sorted out all her photos and she wrote us some beautiful letters and memories.

Good luck on this horrible journey. Death is always shit but I did feel my mums was as least shit as it could have been.

@endofthelinefinally

There is a saying in the NHS: " If it isn't written down, it didn't happen". Follow up every single phone call with an email. Get everyone's name and job title.

Yep, best advice. My OH has myeloma and is often left in the chasm between the haematology dept and the GP with both saying it's the other's responsibility and neither taking the lead. He has sometimes spent whole days on the phone being passed around between them to get the simplest of things organised. Then it's a whole new world of obstruction and buck passing when the haematologist refers to another consultant, such as to deal with bone damage when you get 3 different lots of people buck passing between them. He now always gets names and asks for agreed "actions", i.e. specifically asks for times/dates by which a call back is expected so things done languish for days and weeks.

Ask if morphine patches are available - my mum had them 25 years ago so not sure they are a thing anymore but they were a great help.

Ask if she can go into a hospice for a week for palliative pain control management - my mum did this twice. It gave me a break, I was able to get the house ship-shape, and most importantly, they got her pain control sorted out. She died at home but the hospice was amazing she she was in - drinks trolley, spa facilities, amazing food, beautiful accessible garden. Some hospices allow you to self-refer - maybe give your local one a ring and ask if you can speak to one of the admittance nurses?

Just here to add some supportive flowers as great advice above, especially Covoid’s recommendations and the key information that “the” NHS is actually a series of disconnected fiefdoms that have only just discovered the internet, with staff ranging from the absolutely wonderful to the frankly useless, all managed differently across local areas.

So yes, get permission and paperwork in order, do detective work to find who locally is responsible for what for your mum, and kick some ass. Palliative care can be fantastic, and most people working in any aspect of it genuinely want it to be great.

I did also at times resort to letter writing and emailing when I thought my mums care was crap at her initial diagnosis

That time it was being stuck in the wrong system (a lung cancer clinic when hers was a breast cancer met) and getting buck passed with no-one taking responsibility.

That time I wrote a letter to the GP and to the consultant and I looked up the NICE guidance and asked them why they were not following it.
It was a polite letter and I did not rant or threaten to sue or anything just pointed out that timescales were being missed and NICE recommended treatment not offered The GP called her the next day after ignoring for weeks and she was seen in the oncology clinic and we got an apology.

So definitely do put stuff in writing if you are not getting a response. My next step would have been PALS if they hadn't sorted stuff out.

Purplewithred you are so right

If you manage to get to the right spot usually care is great but if you are in the wrong stream somehow it's hard to put it right.

It happened to me the opposite way around. I had an issue that was NOT cancer and I pretty much knew it wasn't but my GP referred me under 2 week wait as it was an outside possibility. I thought that was good news that I could then got a tonne of invasive investigations that I didn't feel I could refuse for them to eventually say 'good news it's not cancer so you have been discharged' but I still had the original issue so had to ask my GP to re-refer. I then did not get to see a specialist about the original issue for 6 months (COVID)!

I work for the NHS in a different field so I know that people on the ground do usually care and want to do a great job for patients it's just getting someone to take responsibility in the first place that's hard. Everyone is stretched and doesn't want to take extra work.

There’s a very good myeloma U.K. Facebook group. www.facebook.com/groups/408542472584923/?ref=share

Lots of helpful information. My mother has myeloma and has been useful.

Also, print a letter expressing permission from your mum to allow HCP to discuss her medical cinditiin and treatment with you and get her to sign and date several copies.
You give one to GP, one to hospital, keep a couple in your own records. Keep copies of all correspondence.

Hi sydenhamhiller,
Has this pain been getting worse or changed? There should be a 24 hour emergency call line - you can call that with complaints of pain. They will need to work out the cause. Myeloma patients are at risk of SCC so the route cause is always needed when pain is involved with myeloma. It is usually a red card. The number should be available if you google or will be on someone’s voicemail for whatever phone numbers they have already
If the pain is long-standing and is not Acute: Call the clinical nurse specialist and ask for Macmillan referral to be made urgent. They are fantastic teams
DNs will not be best placed to manage the complexities of plasma cell leukaemia (apologies for the general sweeping statement). You need Macmillan and CNS team
My heart goes out to you x