A difficult read this. I feel like it must be so hard to carry on with life when you have something like this going on. With the upmost respect, how do you find the motivation to go to work for example and focus on anything? I think the illness and/or death of one of my kids/wife would consume me to the point of barely functioning day to day. I commend your devotion and care to your wife and wish you all the best.
My Wife and I (Our Story)
- Thread starter Thesnipergecko
- Start date
My partners Mum also has multiple myeloma. She was diagnosed in 2017 and too went through a similar scenarios where the GP didn't refer for MRI but for physio, said it was nothing etc.
Anyway she's went through chemotherapy, then had an autologous stem cell transplant (she even went to India to get Revlimed as at the time it wasn't available / provided as a course of treatment on the NHS), went into remission again. Was waiting for an allogeneic transplant, 4 or 5 donors from around the world were actually identified but unfortunately after further tests they were deemed not suitable. Something to do with how some proteins bind in her blood. They were going to try another auto but 2019 she was accepted onto a CAR T-cell therapy trail at King's. She was having to go down to London every 4 weeks for bloods etc which I guess is a pain now it's every 3 months I think but it seems to have gone very well.
Although there are the massive annoyances in NHS appointments and communications there are amazing haematologists and consultants working hard to improve people's health.
Keep enjoying life the best you can and go for every option available to you.
Also any of you horrible lot reading this thread make sure you've registered with Anthony Nolan.
Anyway she's went through chemotherapy, then had an autologous stem cell transplant (she even went to India to get Revlimed as at the time it wasn't available / provided as a course of treatment on the NHS), went into remission again. Was waiting for an allogeneic transplant, 4 or 5 donors from around the world were actually identified but unfortunately after further tests they were deemed not suitable. Something to do with how some proteins bind in her blood. They were going to try another auto but 2019 she was accepted onto a CAR T-cell therapy trail at King's. She was having to go down to London every 4 weeks for bloods etc which I guess is a pain now it's every 3 months I think but it seems to have gone very well.
Although there are the massive annoyances in NHS appointments and communications there are amazing haematologists and consultants working hard to improve people's health.
Keep enjoying life the best you can and go for every option available to you.
Also any of you horrible lot reading this thread make sure you've registered with Anthony Nolan.
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As odd as this may sound, after a while it becomes the norm. The worst part about it is around blood test time, there's a period of wait between getting the bloods done and waiting for the results. I tell myself and my wife though. You have to "Live with it, not die with it."
I found it tough earlier in the year when things just kept going wrong with the appointments and medications etc, my boss at work kindly told me to have a week off to get things straight, and happily paid for 8 sessions of therapy for me.
Having someone to talk to was great, not wanting to burden my wife with how I felt. Staying strong for the family. Not just that though, giving me the knowledge of knowing how/why I was feeling the way I was, and being prepared to deal with it again, and again and again.
@bingham67 Blast from the past! I think last time I spoke to you, you had just started some form of Guard/Army training? I had you down in my MSN list as your Army reg number
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Thought I'd post an update.
In December 2022, my wife received the news that she had relapsed with her Cancer. Several months after finishing her course of chemotherapy. Her blood tests have shown that the Light Chain levels in her bloods had started to increase at an alarming rate. Doubling almost every 4 weeks. She was also in a lot of pain with her lower back again.
I took her to the A&E department (de-ja-vu) where she had an x-ray, they were unable to see any problems. I didn't believe them, so I immediately got in touch with her Myeloma Consultant, who promptly booked an MRI. A week or two later, we had a call from the Consultant, asking if Laura could come into hospital immediately for emergency radio therapy. Unfortunately, we were unable to attend to straight away due to a family funeral, my wife's mum (my mother-in-law) had recently passed away.
The day after the funeral, my wife was admitted to hospital and began treatment right away. 5 rounds of radiotherapy. The MRI has shown and small cluster of Plasma Cells that had built up in her lower back (Sacrum) the size of a small piece of fruit. This is what was causing all her back pain again.
She was in hospital for just over 8 days receiving treatment. On her 8th day they started a new cycle of Chemotherapy. This is where we are at now, at the time of writing this.
She has officially started her 2nd line treatment for her disease, this was is a lot more intensive that then last one. For the first 25 weeks, she will be required to attend the hospital twice a week for Chemotherapy and have weekly blood tests taken to see how she is responding to the treatment.
We finally had our consultant meeting today, where we've been given a decent amount of information about what happens next.
Twice a week injections, 3 weeks in a row, 1 week rest. This is called a "Cycle". After the 3rd cycle, another MRI to check up on things. Then cycles 4-8. After that, they have said Laura can have the stem cell transplant, which is a trip to hospital for 6 weeks for a period of treatment and isolation. Then a 3 month recovery after that.
To further add to our problems, I was also given a notice of redundancy. Come the end of March I will no longer be working.
We've had a long chat, and after much deliberation and cutting back, decided that I would give up work for at least 6 months, the first 25 weeks of her treatment is critical and I want to be there for my wife and daughter.
I have absolutely no idea how we are going to pay the mortgage and ever rising costs of household bills, but I will find a way. I won't see my family homeless or hungry.
I've worked for over 20 years, paid my government and taxes, paid into a broken system, scrimped and saved to make sure my family has the best life they can, I won't have it ripped away from me. I've worked too hard for that.
Yet, when I come to ask my government and council for help, it seems that I am entitled to absolutely jack ****. To be a registered carer for my wife, they said I'm entitled to £97 a week and need to look after her for more than 35 hours a week to get that.
35 hours a week... which is pretty much a full time job, and means I won't even be able to work part time to earn more money to pay the bills or put food on the table.
Despite all this. I remain positive. Good things happen to good people right? Well its about time something good happened to us. We've had a **** few years and the blows just seem to keep coming.
Anyway, enough ranting for one night. Keep on, keeping on as they say.
In December 2022, my wife received the news that she had relapsed with her Cancer. Several months after finishing her course of chemotherapy. Her blood tests have shown that the Light Chain levels in her bloods had started to increase at an alarming rate. Doubling almost every 4 weeks. She was also in a lot of pain with her lower back again.
I took her to the A&E department (de-ja-vu) where she had an x-ray, they were unable to see any problems. I didn't believe them, so I immediately got in touch with her Myeloma Consultant, who promptly booked an MRI. A week or two later, we had a call from the Consultant, asking if Laura could come into hospital immediately for emergency radio therapy. Unfortunately, we were unable to attend to straight away due to a family funeral, my wife's mum (my mother-in-law) had recently passed away.
The day after the funeral, my wife was admitted to hospital and began treatment right away. 5 rounds of radiotherapy. The MRI has shown and small cluster of Plasma Cells that had built up in her lower back (Sacrum) the size of a small piece of fruit. This is what was causing all her back pain again.
She was in hospital for just over 8 days receiving treatment. On her 8th day they started a new cycle of Chemotherapy. This is where we are at now, at the time of writing this.
She has officially started her 2nd line treatment for her disease, this was is a lot more intensive that then last one. For the first 25 weeks, she will be required to attend the hospital twice a week for Chemotherapy and have weekly blood tests taken to see how she is responding to the treatment.
We finally had our consultant meeting today, where we've been given a decent amount of information about what happens next.
Twice a week injections, 3 weeks in a row, 1 week rest. This is called a "Cycle". After the 3rd cycle, another MRI to check up on things. Then cycles 4-8. After that, they have said Laura can have the stem cell transplant, which is a trip to hospital for 6 weeks for a period of treatment and isolation. Then a 3 month recovery after that.
KICK A MAN WHILST HE'S DOWN
To further add to our problems, I was also given a notice of redundancy. Come the end of March I will no longer be working.
We've had a long chat, and after much deliberation and cutting back, decided that I would give up work for at least 6 months, the first 25 weeks of her treatment is critical and I want to be there for my wife and daughter.
I have absolutely no idea how we are going to pay the mortgage and ever rising costs of household bills, but I will find a way. I won't see my family homeless or hungry.
I've worked for over 20 years, paid my government and taxes, paid into a broken system, scrimped and saved to make sure my family has the best life they can, I won't have it ripped away from me. I've worked too hard for that.
Yet, when I come to ask my government and council for help, it seems that I am entitled to absolutely jack ****. To be a registered carer for my wife, they said I'm entitled to £97 a week and need to look after her for more than 35 hours a week to get that.
35 hours a week... which is pretty much a full time job, and means I won't even be able to work part time to earn more money to pay the bills or put food on the table.
Despite all this. I remain positive. Good things happen to good people right? Well its about time something good happened to us. We've had a **** few years and the blows just seem to keep coming.
Anyway, enough ranting for one night. Keep on, keeping on as they say.
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I have no words.. I am sorry for what you and your family are going through right now. This country is becoming a laughing stock.
I wish you all the best.
I wish you all the best.
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I don't know how I missed this thread the first time round, you have my sympathies for the crappy hand you've been dealt.
You seem to be coping well with all that is coming at you, my dad was suddenly ill a couple of years ago and I couldn't have handled work and kids on top of that so all credit to you holding it together.
I don't know what else to say but I hope some good news comes your way.
You seem to be coping well with all that is coming at you, my dad was suddenly ill a couple of years ago and I couldn't have handled work and kids on top of that so all credit to you holding it together.
I don't know what else to say but I hope some good news comes your way.
Soldato
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I moved back in with my parents to help my Mother care for my old man (Parkinson's w/ Lewy body dementia, prostate cancer, heart problems and COPD) yet I couldn't claim a penny of carer's allowance because my Mother lived here too (she's late 70s and needs help herself due to chronic arthritis) and I was classed as living with parents and not a carer. It's absolute ****. You pay in all your life and then when you need it they tell you to **** off.
Soldato
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Horrific. Stay strong dude, my thoughts Are with you.
Thinking back 5-year-ago to when my dad was in a similar situation, we claimed attendance allowance for him, higher £92.40 per week, lower £61.85 per week. Then in turn I claimed carers element or something if you have to look after them full-time 35+ hours a week, as carers allowance. We didn't have any issue with my mother living there, only one person can claim the carers allowance, it didn't effect any other benefits my mum and dad were claiming, pension etc.
Attendance Allowance | Carers UK
www.carersuk.org
Carer's Allowance
Apply for Carer's Allowance - money to help you look after someone who needs to be cared for. Apply online or use form DS700.
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Jeebus. Not what I hoped to read.
It used to be the case that the state would pay your mortgage interest (not the principal) for 3-6 months (I forget). Is that not available now?
IIRC it used to be the case that part of 'caring for' could simply be being there, so you could work from home.
Afterwards, be prepared to demonstrate that you haven't been in prison.
A left-field suggestion: sell your house and move into rented accommodation. The market in many parts of the UK is hot so you should make a good profit on your current home. But if you get a good landlord then property maintenance will be one less thing to worry about. Check with local agents about the feasibility.
The very best of luck to you both.
They started cutting back on that in the 80's! Been gone a long long time.
What there is now is SMI (Support for Mortgage Interest) which you can apply for but no guarantee to get. It's a loan, that they charge interest on, which is secured against your property and paid back when the house is finally sold or ownership transferred (like equity release).
You have to be in receipt of a qualifying benefit like JSA, ESA, UC etc but the problem for sniper is you have to be on them for 39 weeks before you are even eligible to apply.
Then if you earn any income at all, including even something like a tax rebate, you would cease to get it.
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So sorry to hear all this OP, sadly the totally variable 'service' you received from the NHS is all too familiar to me.
Wishing you both the best of luck.
Have a look on MoneySavingExpert to try & understand what benefits/allowances you maybe entitled to - I've seen some good posts on there before.
Wishing you both the best of luck.
Have a look on MoneySavingExpert to try & understand what benefits/allowances you maybe entitled to - I've seen some good posts on there before.
Soldato
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Everything is broken. NHS, Police, Courts, Councils, Education, Transport.
By contrast, since I first read this and emphasized with what my dad is going through (exactly the same diagnosis) the nhs care has been exemplary. A few small cockups with meds but by far and large the lesser of an overall fantastic care.
He's 75 this year and starts stem cell in 2 weeks. Technically not a valid candidate for stem cell due to his age. Last year, up until maybe June was a really tough time. Multiple infections with emergency hospital visits, fractures in the spine etc, but that all got better through chemo meds.
To top that off, got a prostate cancer diagnosis to manage now as well. But after stem cell, that can be treated. Things are actually quite positive at the moment
He's 75 this year and starts stem cell in 2 weeks. Technically not a valid candidate for stem cell due to his age. Last year, up until maybe June was a really tough time. Multiple infections with emergency hospital visits, fractures in the spine etc, but that all got better through chemo meds.
To top that off, got a prostate cancer diagnosis to manage now as well. But after stem cell, that can be treated. Things are actually quite positive at the moment
Hope the stem cell transplant goes well for her. Maybe look for a local support group - https://www.myeloma.org.uk/help-and-support/support-groups/ for both yourself and her. Generally they'll be a group setup at the hospital.
Soldato
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I’ve only read the op( will read the rest after this post). This is where the nhs is crap, if somethings not immediately obvious they don’t seem too bothered in doing a thorough investigation and palm you off with some tablets.