Still the storm

[Willowkins]

Continuing the support thread - mostly for the partners of people living with terminal cancer - www.mumsnet.com/Talk/life_limiting_illness/3266385-The-calm-before-the-storm?pg=10

@TooOldforBouncyCastles This whole Covid thing is just making everything worse. I'm so sorry for this adding to your difficulties.

We've not heard anything about DH's Covid test result, so we're rather assuming that if it's positive then they'll contact us to cancel tomorrow's op. If we don't hear anything then I'm taking him tomorrow!

Good luck with tomorrow

The whipple's went really well, he has amazed evryone with his recovery - Yay!

They found a nodule on his liver when they were closing up, they said if they'd seen it on the way in they would've aborted the operation. The nodule was biopsied and is cancer - bugger. I guess that makes his cancer grade 4. Waiting to hear from the hospital whether they will give him chemo or not. He looks, and feels, so well. This is fucking unfair. I have involved our local MP in the mishandling of DP's case as his PET scan in August was clear yet they made him wait again and again for his diagnosis and his surgery.

@bloodywhitecat glad the op went as well as it could.

When we got told about DH cancer I pointed out he couldn't possibly have stage 4 ling cancer as he'd had a clear x Ray a couple of months before. When the nurse brought the scans up you could see it clear as day ! She chased me 3 times to raise it as a PALS complaint which I did, it was immediately upgraded to a critical incident and we ended up with a 29 page report chAnging the systems but basically was human errors.

@bloodywhitecat that sounds like a good result on recovery but pretty devastating on the liver news. The frustration of waiting for diagnosis or treatment is enormous without delays caused by Covid or cock ups

@notapizzaeater that’s appalling!!! Surely it’s an issue with whoever reported the chest X-ray rather than systems?

@TooOldforBouncyCastles yes the buck stopped with the 2 people that looked at his X-ray and reported it clear but the system failed as in our trust if you are waiting for a repeat X-ray it drops off the system after 4 weeks, DH had a totally unrelated X-ray on his foot 2 months before the x Ray and the chest request wasn't there or they would have done it at the sAme time. This bit they have changed.

I couldn't get my head round if you knew there was something suspicious on an x Ray in June surely on the next X-ray you'd do a normal check and look in the suspicious area ? DH can't talk about it he's so angry. We've had an expert report back (that legal insurance you pay for in your house insurance that you dint know why you do but you do - well it's actually worth it !) and they say DH would still have died from it but would have had 2 years extra.

@notapizzaeater I feel angry on your behalf. Robbed of life as years count. Everyone is going to die at some point but prematurely from cancer is still prematurely

Sometimes they get it so wrong 🥺

We were told that DH's bowel cancer was barely stage one but then the 'dr' turned to the cns nurse and started talking about his peritoneum. Which I questioned as I know what and where the peritoneum is. He quickly started to back track and tried to cover himself but I demanded we be moved to the hospital where I work. The consultant from my work confirmed it was stage 4 with mets in his liver, lung & peritoneum as well as the huge tumour in his bowel 😭

That is also an incredible error@loubieloo4. I can’t imagine anyone thinking peritoneal spread was stage 1??

My mum went from me sat around a table with 3 professionals telling me she was barely affected by her dementia (looking at me like I was exaggerating things) to being pronounced end of life due to it in the space of three days. A failure to properly assess and listen to relatives.

It’s very upsetting to be dismissed like that.

I have to say so far my sisters care has been kind and professional although tbh as we’ve only known for a month there hasn’t been that long to go wrong.

Pleased to have found this, if you can be pleased about such a thing?

DH has a terminal brain tumour. He is 47.

It was found in March, debunked, diagnosed formally in April as Grade 4 then radiotherapy.

It's already regrowing so now he's on PCV. It is an unmethylated tumour so they don't expect it to be very responsive. Chemo is the last hope.

I am struggling to keep putting one foot in front of the other at the moment.

Some users may know my name as I started the children with cancer thread in 2011 when my daughter had leukaemia. So, once again, I am back in this hideous situation. I barely got through it that time, but she did survive it.

So tired!! Struggling to find the joy in life at the moment and Covid has made that so much harder.

Thanks for reading.

Debulked! Stupid autocorrect.

@KinkyDoritowithsparkleson welcome to the shite club no one wants to be in. Are you having support for you? Bet you're punch drunk 😢

We're excited here (???) as we have a real In person appointment so get to leave the house ! Just a kidney check up but we know his function has gone back up to 18% as we saw oncology last week and she told us about the bloods. DH is having full dose of oxy each day as he's having more and more back pain 😭. He sat there this weekend trying to remember all his passwords to everything and is putting them in a document for me.

Just back from a lovely Costa on way home 🤣🤣

Kidney doctor happy with everything but she brought up the letter onscreen from oncology to our GP summarising our visit last week and she ends it saying months to live but def no more than 6 months. DH now really down, I think because it's not been 'in writing' anywhere we've 'Forgot'

@KinkyDoritowithsparkleson you poor thing. I can’t imagine how you will find the strength to be there for all your family. Nothing I can think to say matches what I want to convey

@notapizzaeater poor DH and you. I haven’t actually seen a letter with anything like that in. All letters have probably not been copied to me. Not sure whether to be relieved or feel excluded

I’m in that bubble of “it’s not really happening” today. (*see above re letters) There is no evidence that anything has changed. I can kid myself she is just sleepy.

Hello everyone .... I’ve been reading updates but finding it hard to post. I am finding it in general hard to talk (about anything meaningful)to others ..... I think it’s when I get overwhelmed I almost shutdown, to scared to speak as there is so much I’m repressing ....so In a strange form of limbo ...

. DH has finally had the conversation with his consultant where he was told that the meds he takes are to manage the brain tumours but can’t cure them. (Immunotherapy did not work for him)

He has been really thrown by this as I think he was thinking that he could be cured and the scans showing some reduction in tumours was good (which it is, but it’s for how long it lasts).

His Dr has been really kind to him and spoken of advances in medicines and treatments , and you never know ... there are people who are living longer and longer which is all true ..... but we have no idea of knowing how this will play out.

I guess I have been reading up more and was much more aware of this.

On a slightly different matter could you give me your thoughts on what you would do with the situation below .... which leads on from the above ....

So DH when he took on this news that the meds were not curative but more managing the tumours, in a blind panic I think phoned some “healer” he found on the internet, and impulsively booked himself on some form of colour healing. He was vulnerable, explained he had stage 4 brain cancer, not curable etc etc.

He received a critical life payment recently related to his diagnosis, and I thought that if he felt this would make him feel better I couldn’t say “no” - , and that some form of healing perhaps would help him mentally .... so he payed .(before I had a chance to look things over, do the usual due diligence,) ... drum roll £6500 (yes that’s correct) to the “healer” for a set of sessions. NOw he has had time to think, Re-spoken to medical team etc, he of course realises that he has perhaps paid a tad too much !!! So he emailed the healer to ask if he could change the amount of sessions to half ... get a refund for the other half, or even cancel it altogether .... and of course she responded to him that there are no refunds! (Or it seems change to the expensive plan she thought would be best for him!).
I am not sure how someone can take that amount of money from someone who is clearly vulnerable and say there is no refund - no sessions have started in any way.

I have booked an appointment with her to discuss this later this week ..... but feel that probably buried in some electronic paperwork when he paid and ticked a box these might the terms and conditions around this. No idea how to tackle this ..... feel so very upset by it all ..

I’ve told DH it’s okay ..... I don’t want him stressing about this .. he feels foolish,,,,, I’ll need to handle this, he’s so vulnerable right now, sets of more scans coming up .... it’s a hamster wheel we can’t get off l

But I want to firmly talk to her, (the healer) see if she will keep a deposit and refund him .... otherwise I might hand it over to lawyers .... although I am worn out with paperwork and life in general and not sure I have it in me ... I can’t even think about how much (wasted) money this is, ... this is really no small sum for us. I have a call booked with her this week.

So I turn to you for advice .... anyone dealt with something like this?

@iwantavuvezela that sounds horrific, nothing like taking advantage of someone when they are desperate. Do Macmillan have an advice line ? Could you do a chArge back from the bank ?

@iwantavuvezela I would contact Trading Standards for initial advice and / or Citizens Advice. So on your behalf that someone would take advantage in this situation

@notapizzaeater MacMillan is a good shout ..... and @notabucketlist ... citizens advice - good starting points - I could also speak to bank as I have POA in place which I can see if I can use in some way in this matter.

I have had to book an introductory session with her (as if a new client as no other way to access her) which is booked for Thursday ..... if she is unwavering on keeping the whole amount (which cannot be fair .can it???????. happy at this point to wave a deposit goodbye) then I am going to look into your suggestions ...

I have also booked my DH a session with his counsellor so that he can speak o her about this (he feels a little used and now feels that she not a real healer but it’s about the money ☹️)

I’ll let you know how the “meeting” goes on tomorrow.

@iwantavuvezela that’s horrific! She’s obviously a fraud because she’s taken a huge sum of money off a vulnerable person. Even if she shows you some sort of paperwork saying no refunds I think this could be argued in court and money returned. I would definitely speak to the bank urgently and see if they can get the monies quarantined until an investigation takes place. Threaten a safeguarding investigation or police.

Thank you for that @TooOldforBouncyCastles - I realised today that we have some legal insurance with our house insurance so going to give them a call in the morning to ask for general advice & rights & bank so I’m ready with some facts when I speak to her at 12.00 - I’m hoping she does the decent thing ..l. It’s hard seen DH feeling stressed and anxious about this ... he wanted a healing experience thinking that someone would do this with care not just try rip him off.

@iwantavuvezela if you don't get any joy from the house insurance - are you in a union?

iwantavuvezela I know someone who did this so you're not alone. In their case it didn't work and there was some guilt/anger about "not wanting it enough" - as if something can be wished into existence of you name it loud enough.

I completely get the hope that someone can fix this and if not doctors then prayer or healers or something. We had loads of people praying for us.

It's hard to let go. It's heartbreaking.

Hi to anyone new, sorry you have had to join us.

I thought I would write a quick rundown of who we are and the cancer involved as I'm sure it's hard to keep up!

I am Louise, my dh 41 has stage 4 terminal bowel cancer diagnosed last April. He is currently on palliative chemo but has all ready outlived his life expectancy, he is doing ok so far. We have 3 children who are amazing. Sadly my dad was diagnosed with cancer a few weeks ago too. It's all pretty stressful at the minute.

@iwantavuvezela I would threaten the small claims court, I'm sure your house insurance would cover it.

@notapizzaeater we get excited to get out of the house, even if it is just for appointments 🤣

@KinkyDoritowithsparkleson I am so sorry you are going through his again.

Anyone know anything about neutrophils? Dh couldn't have his chemo on weds as they are too low, on Monday they were 1.2, weds 1.1 and today 0.7. He is due back on Tuesday to try again. Poor man has to have diazepam every time he has a needle to stop him fainting, this really isn't helping. I have read up about filgrastim injections to stimulate stem cells, is there a reason they haven't offered it yet? Do his levels have to be even lower? Anyway I am going to try and see if I can go in with him on Tuesday and ask.

In better news dd has raised over £2500 so far 😱 and I am going to put up my Christmas tree tomorrow fuck it.

@loubieloo4 sorry can't help, we've never had chemo on the table, I suggest you sling him in a wheelchair and push him in ..... DH has put his 'boot' back on this week purely for his hospital visit so I just waltz in with him ..... what is it with these blokes, DH is type 1 diabetic 47 years and still faints at needles unless he's laid down !

My history for newbies ....

DH (never smoked in his life) was diagnosed last may 2019 with stage 4 lung cancer, we've been treating it with targeted therapy tablets at home (sort of chemo tablets) we had 10 brain mets (gamma knifed) last December and then bone mets in his ribs in June that got zapped with radiotherapy. Currently the cancer is progressing and we've no more options. DH is sleeping 18 hours a day and pallative are involved with pain relief. We are hoping to get to Christmas but it's not guaranteed. We where told 2/3 months about 6 weeks ago ..... We have an 18 year ASD son and a new puppy ! Ct booked for 14th dec where we will see spread 😭. Think it's spread to the ribs (again) and back as in constant pain at the same spot.