My Wife's Terminal Illness

December 2021

I first met my wife in 2001. We'd been talking over the internet for just over a year before deciding to finally meet up. We've been together ever since. My best friend for over 20 years, we've built a life together, bought our first home, had our first baby, moved to a bigger home and settled down into family life.

On the 6th December 2021 things would change. Our world was about to get shattered. Rewind to a few weeks prior to that though, here's what happened.

In early November she started to have trouble with her back, lots of aches and pains that didn't go away with pain killers. We tried to get in to see the GP as we thought it may be related to her disability (Cerebral Palsy with her legs, suffered from birth)

We initially though she may have pulled her back or trapped a nerve. Anyway, we didn't actually get to see or speak to a GP, only the receptionist who passed a message on to the GP and she was prescribed some pain killers over the phone.

A week later and still in pain we phoned 111 who sent for an ambulance. 12 hour wait overnight and the ambulance turned up next day and took her to A&E. 8 hours later in A&E she was discharged without really being assessed and was told to see the GP for some stronger pain killers.

So.. we did just that. Another week of "stronger" pain killers and still no joy. It got the point where she was in so much pain she was unable to get up off the floor.

So a 999 call went in, ambulance turned up 4 hours later and took her back to A&E. She was prodded and poked for a while and told to go see the GP it was a muscular issue.... off home they sent her again doubled over in pain, hardly able to move.

I booked a session with a Physio that we've used before with her condition and went to see him straight away. He spent a couple of hours doing various movements and stretches with her back to see where the pain was coming from. He was unable to make a conclusive decision about what was causing the pain. With some simple stretches to try and do we headed back home. (still in serious pain).

A few days later, still in pain, hardly able to move. I was having to physically help her to get dressed, wash, use the toilet etc. We decided enough was enough.

So another call to 999. Explained the situation again and was told here could be a 12 hour wait for the ambulance. So I took her up the A&E myself, having to arrange child care and dance around work schedules and what not. Things were starting to get very stressful at this point.

Due to COVID and all that, I was unable to stay with her in A&E, so off home I went. Several hours later I had a message from her to say that were finally going to admit her for tests. This was on the 24th November...

Between the 24th November and 6th December several things happened. I don't have the energy to go into detail about each day but in general this is it:

She had scans, MRI's, x-rays, multiple blood tests, several falls trying to use the toilet, lots of pain, lots of pain killers, several instances of medications being hours late (up to 6 hours in a few cases).

Being told many different things by many different people, Doctors, Nurses, Physicians. All saying something different. It could be this, it could be that. Having to go through all of this on her own. The ward was in lock down and visitors we not allowed.

Then on the 6th December 2021 they gave her the diagnosis (on her own).

She had Blood Cancer. Multiple Myeloma Stage II. With the back pain being cause by three fractured vertebrae which had cracked and crumbled due to the type of Cancer she has.

Multiple myeloma, also known as myeloma, is a type of bone marrow cancer. Bone marrow is the spongy tissue at the center of some bones that produces the body's blood cells.

It's called multiple myeloma as the cancer often affects several areas of the body, such as the spine, skull, pelvis and ribs.

Though the treatments available are highly effective, it is ultimately a Cancer than cannot be cured, its considered a Terminal Cancer.

She started treatment the day after for 3 weeks and was discharged on the 21st December to be home for Christmas. Treatment is still on going and she will eventually have to have a bone marrow / stem cell transplant.

We now have a diagnosis and can start to process it together as a family. Our 6 year old daughter (turned 6 while her mum was in hospital and unable to see her due to restrictions and lockdown on the ward) is aware that mummy is ill and needs lots of tablets and treatment from the hospital. She's been a total star and understanding through-out all of this.

I have to say I am most disappointed with the hospital and lack of care we received during that time. When she was discharged for Christmas, she was due a prescription to bring home with her to have over Christmas and new year. (3 weeks worth of chemo tablets, pain killers, blood thinners and anti-virals.)

A new Prescription should have been ready for the 23rd. It wasn't... she had run out of her chemo tablets and pain killers. I was trying for hours to get through to them on the phone, frantically chasing, trying to get an answer... I was unable to get through to the ward. So I drove down there instead. Only to find they had all closed up for Christmas (cancer unit/ward) and her medication/prescription had not been dispensed by the pharmacy....

Now what? A drug that is vital to her treatment plan is locked away in the hospital that no one has access too until they are back. With it being the Oncology/Hematology ward they are only open Monday - Friday for treatments. So we spent the next few days over Christmas trying to get answers and a prescription for her. We couldn't get one. It wasn't until the 30th December I received a call to say her Prescription is ready to collect from the hospital.

Unfortunately this isn't the end of it... unknowingly to us, she had started to develop a pressure ulcer (What we now know is she should have been discharged with a pressure cushion) as she's unable to move around and needed support for her bum. Fast forward a few weeks, and several calls to try and get a district nurse out to see her... we finally had a visit from the district nurses.

Grade 4 pressure wound. Due to not having the pressure cushion or advise that was needed. It took almost 4 weeks for Occupational Therapy to get in touch from her being discharged to send out some "equipment" to help out around the home. Again, all this was done over the phone. Believe it or not. We had our first home visit from occupational therapy last week! Yes, its March 2022!

Anyway, I think I've probably taken up enough of your time. If you made it to the end thanks for reading. It's helped me to write out this post. It's taken me a couple of days to do it, and its been emotional to revisit my notes on everything that has happened, but I think its helped me to come more to terms with our life going forward.

My wife is still dealing with her pressure ulcer, it could take many months for that to get back to normal, we're still receiving daily visits from nurses to clean and dress the wound. She is almost at the end of her 5th Cycle of Chemo injections (there are usually 6 cycles before moving on to the stem cell / marrow treatment) but she has been told that if she isn't well enough from her pressure sore then they may not be able to proceed with the treatment until she's in a fitter state.

I'm totally exhausted. I'm still working a 40 hour week. Having to do all the chores, school run, school work etc etc. Caring for my wife, she;'s lost a lot of muscle mass and is still very weak. So I'm caring for her 24/7 too.

We have a long path ahead of us, I don't know how long it will take to get there, but there isn't anyone else in this world I would want to travel down it with.

Hold your loved ones close, stop and take the scenic route every once in a while. Tell them you love them. Be present and enjoy life. We don't know how long we have in this life.

December 2022

In December 2022, my wife received the news that she had relapsed with her Cancer. Just 6 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 beleive them, so I immediately got in touch with her Myeloma Consultant, who promtply 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 wifes 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 he rback 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 officialy 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 (upto 6 hours a session) and have weekly blood tests taken to see how she is responding to the treatment.

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 and have zero income.

We've had a long chat, and after much deliberation, decided that I would give up work for at least 12 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 shit. To be a registered carer for my wife, they said they will give me £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 shit few hours and the blows just seem to keep coming.