Why is it all so difficult?!

[NewAccountNewMe]

Firstly, new username so not outing.
Secondly, I am so sorry to anyone who has a need to be on this page. It’s truly heartbreaking.

Any advice/ experience welcome…
My Mum has recently been diagnosed with the big C. Sadly, tests have shown it is everywhere & it is terminal. Diagnosis was a bit of a mess & quite traumatising for her.
The advice is that with treatment she is looking at an average of 11 months.

My question is WHY is it all made so difficult for someone going through something so traumatic?
She was initially diagnosed with a separate primary cancer & her secondary diagnosis was only identified at her insistence that something was not feeling right. She was given a scan “to put her mind at rest” which has now shown that there is another primary which has spread far & wide. The hospital were blindsided & advised this is not common & was not the outcome they were expecting.

Since then she’s been sent from pillar to post & as amazing as the individual professionals are no one seems to be communicating!

• She has lost 3 stone in weight because she cannot eat without vomiting. The hospital arranged nutritional drinks to meet her calorie needs - she received her first trial box & nothing since. This has been chased with her GP & she’s heard nothing. She is surviving on a banana a day & flavoured water because she physically cannot manage anything else without vomiting.
• Her GP refused to give her the pain relief medication prescribed by the hospital, instead giving her an alternative that had made her sick as soon as taking it before.
• She has no income - she has no clue what she is entitled to. Universal credit rejected her claim with no communication, but have now advised they actually should be supporting her & “will try” & get it backdated.
• Macmillan have been supportive & submitted a PIP claim but she’s heard nothing since & is having to chase up when she’s feeling exhausted & Ill from chemo.

Should it be this hard? Surely when someone is dealing with this awful news things should be easier? The information should be more readily available & simpler to manage. She feels like no one is listening to her.

I want to make it as easy for her as possible. If anyone has any advice that can help me help her I would be so grateful.

Didn't want to read and run - my DM is experiencing similar. Diagnosed with ovarian cancer in March. Scan in April showed growth in abdomen. Further CT shower lesions on lung. Biopsy to check whether lung was separate or secondary cancer. Biopsy inconclusive so couldn't start chemo. Then contracted pneumonia and sepsis so was in hospital three weeks. It's now been over two months since her diagnosis and STILL no chemo plan.

I agree, it's all so bloody difficult. Sending you and your DM love and strength x

My step dad had king cancer and was told in the Jan it was terminal. By early Mar he could barely walk 4 steps but still had to go to hospital appointments- I don’t understand why when him travelling was so painful and expensive so taxis there and back £15 one way (no one drives) there isn’t a Doctor service that could visit terminally ill in there homes. We have midwives, community nurses, meals in wheels . Still angers me 13 years on.

macmillan were crap, took them 12 weeks to inform my parents there was discount fir taxis l… he died 2 days later! He saw one macmillan nurse twice and that was it. Just a constant battle for everything

He had lung cancer not king cancer ffs

Oh @MintMe that sounds awful, I’m so sorry you’re going through that. Your poor Mum.

If it helps, once we had our diagnosis the treatment plans moved really quickly & the team have been fantastic. It seems to be when it’s across the various departments that it’s confusing & messy & it’s just unnecessary stress on stress.

I really hope you get your diagnosis soon & you can all start moving forward with the proper support in place!

That’s so sad that your Step Dad had to manage all of that additional stress at a time when he should have been focusing on his health. I understand your anger & I am sorry for your loss.

I didn’t know that you could get discount on taxis - I shall look into this for my Mum as we’re not always around to take her too & from her many appointments.

I wish there was a better process for supporting terminal patients. A service that can provide them with all the information they need to know, everything that is available to them & advocate for them when messages are getting lost between the various departments

@NewAccountNewMe I'm sorry about your mum.
I think unfortunately you are going to have to push to get help for your mum.

When I had cancer surgery my surgeon prescribed the nutritional drinks and these were dispensed by the hospital out patient pharmacy. After surgery I got the sample packs prescribed by a hospital dietician, and I could contact the dietician with my preferred types and flavours. I didn't follow this up because i found the drinks horrible so I'm not sure who (GP or dietician) was responsible if I needed these long-term. So maybe try the hospital dietician service.

As a cancer patient your mum is entitled to free NHS prescriptions. There's an exemption form to complete.

See if your local Macmillan service can help with an application for a Blue Badge.
For terminally ill patients PIP and UC should be fast tracked under special rules.

Try a different GP for the pain relief, or go back to the Consultant. There's all sorts of things that can be prescribed. I was on Butec patches when I went home after surgery.
Is she prescribed anything for the nausea and vomiting?

Your local hospice might be able to help with some of these things too.

I hope this is some help.

@twointhemorning that is really helpful, thank you so much for coming back to me.

We are in the process of giving me permissions to communicate with the GP on her behalf as I think in her exhaustion she struggles to push for what she needs so I can hopefully lighten the load for her with this.

Did the patches help with pain relief? I think this is something she would be interested in as I know she’s wary of staying on oramorph too long.

She hasn’t had anything for the vomiting but we have an appointment with her oncologist tomorrow so I will ask about this.

I shall also chase with UC & PIP if these should be being fast tracked - she has her medical exemption certificate but that’s good to know about the blue badge so thank you for that tip also.

Are there any other financial routes we should be looking at?

Thank you for sharing this info & I'm sorry you found this out the hard way

I am sorry you're going through this. My father was under a multi disciplinary team - everyone seems to be - and it's just a nightmare.

As far as I know, you might be able to claim one or both of these

www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/nhs-continuing-healthcare/

www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/attendance-allowance/claiming-attendance-allowance/claiming-attendance-allowance-terminally-ill/

Have you talked to Adult Social Care? I might just have been lucky but they were helpful.

Do you know the local vicar - often they have good knowledge of navigating these systems.

So sorry to hear you're all going through this.
If she phones the PIP helpline she can do a 20 minute over the phone application and give the details of her oncologist and macmillan nurse. They'll then confirm the diagnosis and it'll be sorted quicker (took less than 2 weeks between me phoning and getting payment through)

@NewAccountNewMe I found the Butec patches really helped as I felt they gave continual pain relief. I thought it might be helpful for your mum if she's vomiting a lot and can't keep oral medicine down. After my surgery the hospital sent me home with just Oramorph which was hopeless (more for breakthrough pain) after being on Fentanyl. My GP prescribed the Butec patches (they come in different strengths) and they took a couple of days to build up the pain relief effect. If we were a day late changing the patches I could tell. My surgeon wasn't happy I was on them, said I would get addicted. But I was able to just stop taking them without any withdrawal symptoms. I was on them for a couple of months.

I'm not sure about other benefits. Can you contact Citizens Advice or Macmillan for a benefits check? If she gets certain benefits they act as a gateway to others particularly if she qualifies for means tested benefits. I don't know her circumstances to advise.

My Blue Badge has been so helpful. I qualified automatically because I got the mobility element of PIP. My Macmillan adviser thought of things I hadn't considered when completing the PIP form.

I did my PIP application online and got my award less than 24hrs later (and I'm not classed as terminally ill).

These responses have all been super helpful! Thank you all for taking the time to share - it’s all been a bit overwhelming since the diagnosis so I’m super grateful for all the advice & it’s given us lots of stuff to take forward.
Im just sorry that you all have the personal experiences to be able to share in the first place