Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

Chat

Join the discussion and chat with other Mumsnetters about everyday life, relationships and parenting.

Please help. Just found this on my dad's back.

948 replies

sprigatito · 20/05/2024 18:04

My dad's partner died of cancer a few days ago, he and I were with her when she died, and I've brought him home with me until the funeral (and probably permanently). He's got Alzheimer's and his partner was his carer. He's been looking pained and twisting his shoulder, he said it's just a spot, but I made him show me his back and found this. It looks just like the squamous cell carcinoma he's had removed before, only it's enormous. He's lost weight and is pale and more vague and breathless than usual, but I thought it was just grief Sad

This is really fucking bad, isn't it? He survived stage 4 lymphoma in 2017 and has a heart condition. I have a doctor calling me back from 111, but should I just take him to A&E?

Sensitive content
Please help. Just found this on my dad's back.
Sensitive content
Please help. Just found this on my dad's back.
OP posts:
Thread gallery
10
sprigatito · 08/06/2024 20:45

blackfuchsia · 08/06/2024 20:41

The letter would say if he was having a GA as he would have to starve beforehand. I imagine the reason the hospital has changed is they’ve got him into the earliest appointment they can at any hospital. It’s really not a long wait though I know you are frustrated by it all.

I do understand that it's not a long wait really, but I wish she hadn't impressed upon me that it needed to be done so urgently, then - she said she would like to get it out within a couple of days, so that's what I thought would happen. 19th of June is two weeks from the appointment, not a couple of days, and it never crossed my mind that it would be in a different town.

OP posts:
Mirabai · 08/06/2024 20:48

sprigatito · 08/06/2024 20:39

Oh that does sound horribly stressful, for both of you 😞 I hope he'll be more comfortable once he's recovered from the surgery a bit. Every decision seems to be so tough with poorly old people.

Thanks, no worries. My heart goes out to you - every decision is so fraught.

One thing is clear though - 30 miles - absolutely no way.

blackfuchsia · 08/06/2024 20:52

sprigatito · 08/06/2024 20:45

I do understand that it's not a long wait really, but I wish she hadn't impressed upon me that it needed to be done so urgently, then - she said she would like to get it out within a couple of days, so that's what I thought would happen. 19th of June is two weeks from the appointment, not a couple of days, and it never crossed my mind that it would be in a different town.

She probably does want to do it earlier but if there is no space in the schedule there’s not a lot she can do. You could ask to be called if there is a cancellation. I would book in hospital transport now in any case as you can always cancel it if you get the hospital changed. I hope you can get some clarity on Monday.

Mirabai · 08/06/2024 20:53

blackfuchsia · 08/06/2024 20:41

The letter would say if he was having a GA as he would have to starve beforehand. I imagine the reason the hospital has changed is they’ve got him into the earliest appointment they can at any hospital. It’s really not a long wait though I know you are frustrated by it all.

Exactly, that’s a conversation OP needs to have with them, because they need that information. They may not even know he has dementia or to what degree.

Eg - yesterday surgeon and anaesthetist knew my dad has late stage dementia, so did the nurse in the ward. But this morning another nurse rang to ask if he had dementia as it “wasn’t in his notes”!

Fink · 08/06/2024 20:55

Babyboomtastic · 08/06/2024 20:43

That's true though. Hmnnn.

Not necessarily. I've had day surgery under GA and all the information about fasting, pre-surgical checks etc. came in another letter not the initial appointment letter.

Anyway, you clearly need to talk to someone, OP, and see what's going on.

winewolfhowls · 08/06/2024 20:55

Unlurking to send you some virtual strength over the airwaves. You are an absolutely fabulous daughter and I'm sure your lovely dad is so proud of you.

sprigatito · 08/06/2024 20:55

I did explain all of his issues, his history, his other health problems and made it really clear that he's got Alzheimer's. She had all of that information.

OP posts:
Mirabai · 08/06/2024 21:00

sprigatito · 08/06/2024 20:55

I did explain all of his issues, his history, his other health problems and made it really clear that he's got Alzheimer's. She had all of that information.

I don’t doubt it but you don’t know how much info she put into the referral letter. That’s why you need to tell them directly. I would have expected her to consider the possibly of needing a general herself.

Janiie · 08/06/2024 21:01

Our Trust has different departments 25 miles apart, many places do. It isn't ideal but if it's the next available slot then better that than the nearer hospital but in 4 weeks time.

I'd really avoid hospital transport they take ages as they drop other patients off obviously. I know it won't be cheap but in this situation I'd book a taxi. Or call on family and friends for lifts?

blackfuchsia · 08/06/2024 21:03

Fink · 08/06/2024 20:55

Not necessarily. I've had day surgery under GA and all the information about fasting, pre-surgical checks etc. came in another letter not the initial appointment letter.

Anyway, you clearly need to talk to someone, OP, and see what's going on.

Dermatology usually done under a local but, as you say, not necessarily.

sprigatito · 08/06/2024 21:06

I will get on the phone on Monday morning and be sensible, polite and reasonable...I'm just spitting feathers tonight. We've had a lovely but knackering day taking Dad out for a bit of a nature walk and dinner, then come home to find those letters on the mat. Sorry if I sound ungrateful and horrible, I know it's not the dermatologist's fault things are the way they are.

OP posts:
xerneas · 08/06/2024 21:08

My grandad has bone cancer and he has had to drive 45 miles just to have X-rays done. It might be your only option if you want to get the surgery done asap. Do you have family members or friends you can ask for help?

ArabellaScott · 08/06/2024 21:11

This thread is here so you can vent, OP.

Ginkypig · 08/06/2024 21:13

TheShellBeach · 08/06/2024 20:25

Day cases are frequently done under GA.
Are you quite sure it isn't under GA?

i had to have a surgery on my nose which was classed as day surgery even though I was under GA because I was expected to go home the same day.

as it turned out because I had noone to take me home and stay with me they booked me to stay a night on the ward and I got a taxi home the next morning.

sprigatito · 08/06/2024 21:14

xerneas · 08/06/2024 21:08

My grandad has bone cancer and he has had to drive 45 miles just to have X-rays done. It might be your only option if you want to get the surgery done asap. Do you have family members or friends you can ask for help?

That's awful, your poor grandad. I don't have anyone I can ask to drive us really, but if I really can't get it moved I will have to pay for a taxi. I just think it will be so distressing and painful for him.

OP posts:
Janiie · 08/06/2024 21:16

sprigatito · 08/06/2024 21:06

I will get on the phone on Monday morning and be sensible, polite and reasonable...I'm just spitting feathers tonight. We've had a lovely but knackering day taking Dad out for a bit of a nature walk and dinner, then come home to find those letters on the mat. Sorry if I sound ungrateful and horrible, I know it's not the dermatologist's fault things are the way they are.

You don't sound ungrateful and horrible but (I mean this very kindly not bossily) you do need to try and adjust expectations. Drs always say 'as soon as poss' but they've no idea on other waiting urgent cases etc. If you'd got an appointment for 2 months time yes be furious but 2 weeks isn't actually unreasonable.

Use the time to update your family chats and enlist volunteers for lifts.

PracticeorPractise · 08/06/2024 21:17

You should qualify for this patient transport. My dad is able to book transport from his home to the city where the main hospital is, as he has health and mobility issues. Our area also has a volunteer driver scheme where you pay for fuel only, worth looking in to.

Vive42 · 08/06/2024 21:18

Hopefully OP they can get you a cancellation at the hospital more local to you. You could ask to go on the cancellation waiting list so if something comes up you go there, instead of to the hospital 30 miles away. That’s going to be tough going otherwise 😞

I remember when DM had stage 4 cancer and she was sitting in waiting rooms for hours, waiting for blood tests and supposed to somehow get herself to and from hospital on a weekly basis. In a lot of pain, elderly, very very weak. It was almost like at times the point of being there (to extend life) was actually making her weaker and far more rapidly. I remember once she was there for 5 hours. We waited and waited and waited some more. After that we said no more. NHS is in a disastrous state through lack of proper funding. I’m so sorry OP, I was beside myself too with waiting and how long the whole effing thing took to diagnose and then get on some sort of pathway. It’s the most draining, exhausting and sad thing I’ve ever experienced and it’s relentless 😞
Hang on in there, and one day at a time. This will be sorted out, at some point, and you will have some kind of plan. Every day you are getting closer to making your dad more comfortable and you’re doing the best you can. That’s all you can do. I really hope you get this resolved on Monday.

sprigatito · 08/06/2024 21:26

Vive42 · 08/06/2024 21:18

Hopefully OP they can get you a cancellation at the hospital more local to you. You could ask to go on the cancellation waiting list so if something comes up you go there, instead of to the hospital 30 miles away. That’s going to be tough going otherwise 😞

I remember when DM had stage 4 cancer and she was sitting in waiting rooms for hours, waiting for blood tests and supposed to somehow get herself to and from hospital on a weekly basis. In a lot of pain, elderly, very very weak. It was almost like at times the point of being there (to extend life) was actually making her weaker and far more rapidly. I remember once she was there for 5 hours. We waited and waited and waited some more. After that we said no more. NHS is in a disastrous state through lack of proper funding. I’m so sorry OP, I was beside myself too with waiting and how long the whole effing thing took to diagnose and then get on some sort of pathway. It’s the most draining, exhausting and sad thing I’ve ever experienced and it’s relentless 😞
Hang on in there, and one day at a time. This will be sorted out, at some point, and you will have some kind of plan. Every day you are getting closer to making your dad more comfortable and you’re doing the best you can. That’s all you can do. I really hope you get this resolved on Monday.

Thank you, that's really helpful. I'll definitely ask about cancellations, maybe we'll get lucky. I'm so sorry you've been through hell with your mum. It's all just so frustrating and frightening, I know my reactions are all over the place.

OP posts:
xerneas · 08/06/2024 21:33

You have every right to feel all of the emotions you're feeling OP - it's incredibly frustrating and difficult. You'll get there though, you're doing so well.

Mirabai · 08/06/2024 21:34

Just bear in mind - I’ve tried the cancellation thing with both my parents and some units don’t have the structure to do that. It depends on the setup.

POTC · 08/06/2024 21:38

@sprigatito I've come to this thread today and read all of your posts but not the replies, so apologies if these things have been mentioned before.

Firstly, you are doing an amazing job, never let yourself forget that. I was a community carer for dementia and alzheimers clients, as well as those under home hospice care, and it is tough, that's without close relative level emotions being thrown in.

Are you registered as a family carer? If not, do it. Google the name of your county followed by "family carers" and you should find a link. For example, ours is called Suffolk Family Carers, North Lincolnshire is called The Carers Support Service, but whatever it is called you'll find it by searching for 'County' family carers. Register with them. It doesn't matter that dad officially lives elsewhere, you are still a family carer and can access information and support through your own county. They can do a carers assessment, they can fund things to help you in your caring role. For some people that's a holiday, for some it's a day centre placement for the person they care for, for you I'd suggest asking for a railcard and transport vouchers to make it so you don't have the cost of travelling back with dad to his home or to his appointments.

You mentioned not being able to leave for the walk in centre until you'd persuaded dad to wash and change his clothes. To put it simply, Don't. I know it goes against every instinct you have, but the people you are taking him to see will not be bothered and will not judge you, him, or your ability to care for him because he hasn't washed and has clothes on that are not perfectly clean. Take him in his pjs if you have to! Keeping your stress levels down for the sake of your mental health, whilst still getting dad to the right people to help him is far more important than him being clean and well presented. If you're going to get through this you will need to adopt a don't sweat the small stuff approach. Focus on the big goals like getting him there rather than the small ones like his clothes.

Consider telling the doctors etc that you take him to about you being ND. Tell them you need to record the meeting on your phone because it helps you to listen again a few times as you take longer to process what is being said than an NT. Ask them to write down the important parts of what they're telling you. Just because the treatment is for your dad doesn't mean that you aren't entitled to those reasonable adjustments. It will also potentially flick a light switch for them to think that dad may also be ND, although undiagnosed. The better ones will adapt their approach as they recognise the statistical probability that he is too!

If you need a break from the family messages etc, take it. Tell them you are overwhelmed and you will contact them when you are able to but not to contact you first. If you don't feel up to being that honest with them just mute your phone and keep it in sight so if it is someone important you can answer, or give the relatives a different ringtone so you know you can ignore that call/text, or ask DH to keep hold of it when he's around and only alert you if it's doctor or hospital.

Look up Attendance Allowance. Dad may well qualify and that will help financially. If he isn't already on PIP then look up that too, if he is then you should apply for Carers Allowance for you. These things will help you to help him.

Lastly, take a breath. It is so difficult to prioritise yourself and you likely feel bad if you do. You can't pour from an empty cup is used in the family carers world a lot - if you are exhausted and drained you won't have enough left to give dad what he needs.

I'll be thinking of you both, you've got this ❤

LizzieBennett73 · 08/06/2024 21:51

When my Dad was diagnosed, he was sent from pillar to post for appointments, and in the end, I rang the central booking office in floods of tears as it was just too much for him (and me, in honesty). They were very kind, took all my details and talked to the Oncology department who rang me and we made some compromises so Dad could have bloods done by the district nurses at home and that the specialist nurse would also come to the house. You may reach a point OP where you decide that these appointments are just too much for your Dad. It may also be worth contacting the helpdesk of your local adult social services department. Dad was assigned a social worker and she was absolutely amazing at sorting benefits out and talking to local council etc. They're not always something to be wary of.

Mirabai · 08/06/2024 22:04

@Vive42

I remember when DM had stage 4 cancer and she was sitting in waiting rooms for hours, waiting for blood tests and supposed to somehow get herself to and from hospital on a weekly basis. In a lot of pain, elderly, very very weak. It was almost like at times the point of being there (to extend life) was actually making her weaker and far more rapidly. I remember once she was there for 5 hours. We waited and waited and waited some more. After that we said no more. NHS is in a disastrous state through lack of proper funding. I’m so sorry OP, I was beside myself too with waiting and how long the whole effing thing took to diagnose and then get on some sort of pathway. It’s the most draining, exhausting and sad thing I’ve ever experienced and it’s relentless

Thanks for this it’s helpful to me as well as the OP. It’s focused my mind on what is in a parent’s best interest in the aggregate not just the short term.

At this age - just getting them to appts and sitting in waiting rooms is a lot for them let alone the treatment.

Vive42 · 08/06/2024 22:34

@Mirabai I'm very sorry you're going through this.
We were very very lucky in that DM had private health insurance and we came out of the NHS system as she was exhausted and the oncologist started to visit at home every 6 weeks, - though we did have to pay an extra fee for that. At some point they allowed her to stay on the drug she was on without blood tests as it appeared to still be working and that saved us the constant need to go in over and over again. Perhaps this could have been achieved on the NHS. We didn't wait to find out and we were lucky not to have that extra mountain to climb.

She was bedridden and couldn't get out anyway, so a district nurse would have had to come and take bloods but it had reached the stage anyway, where if something had come up bad with the bloods, it was either that or another thing that would have taken her life, so we just carried on blindly, as her life was in danger being on the drugs or off them. As it was, this arrangement lasted for the best part of 18 months. Incredibly tough but I'm grateful that we had those months. End of life care is something you never think you're going to have to face and then suddenly you're living it every day. It's so unbelievably tough. My heart goes out to you and OP.

All you can do is take it one day at a time and try to find a way to sleep. I found a podcast that was light and fluffy and made me laugh. I used it to fall asleep every night. Without that podcast I think I'd not be here, I would have gone insane through the stress of it all. You need to escape from time to time and think about other things because the pain of losing someone you love is just so hard to deal with.