Mark’s Story

The beginning………..

Being asked if I would be happy to write about me and my family after the death of Natalie, my wife, Natalie the kids mum, Natalie the friend of many and an inspiration to some through her cooking, really gripped me.

It would be cathartic for me I hoped, and I see it as a way that people to really see how things have an impact on all of us.

2016. It is summer. Natalie is at work and complains about having a bad stomach, thinking it is a reaction to something she has eaten, she gets on with things. However, when I collect her after the night shift at Mencap, she is still in agony. Later that day I phone 999 and off we go to hospital, where they can’t immediately work out what is wrong.

She has emergency surgery, a hysterectomy, which it turns out nearly ends her life on the operating table. Life will never be the same again.

As she recovers from the operation, she is called to Doncaster Royal Infirmary to meet a consultant. She knows what is coming as we are ushered into the room and lists a number of questions that the Consultant cannot answer.

It is all a bit of a whirl, but they are hopeful that the cancer has been totally removed. It isn’t any normal cancer; it is a rare Sarcoma.

It had developed into a Fibroid which had then ruptured. She looked upon this as a blessing in disguise, as, if this hadn’t had happened, she would have had no idea.

Her cancer was 2B, whatever that was. She just got on with the job. Things had to be normal for the kids, including our eldest son who is on the Autistic Spectrum.

She has regular check-ins and things seem ok.

She made a big fuss about knowing what type of cancer it is, how it deals with different treatments and speaks to Sarcoma UK and professionals about this. Her views on this are heard and these help shape the future treatments.

Things are clear, but the chance of the cancer reappearing is high. 70%.

We decide to get married, celebrating the fact that it is two years from initial diagnosis.

She stands up at the wedding and delivers a rousing speech, always something to say, always willing to wind people up for the sake of it. Today she tells everyone that cancer is not winning and that her friends are there to celebrate with us.

It is Autumn 2019; a regular check-up begins the end.

There is evidence that it has reappeared, this time in her lungs. This time there is no escape. It will kill her, who knows when, but it will.

How do you tell the kids? How do you tell relatives? How do you tell friends?

We sit and explain to the kids that the cancer has come back, but that she has years to go, and we get on.

Our oldest son, in his matter-of-fact way goes away and research what it all means. His password for IT at school is ‘Stage 4’.

We are carrying on as normal as we can. Football, fencing, piano playing and cricket. She carries on working at Mencap.

She inspires us with not giving in to what is ahead. She organised private treatment and things are kept at bay; things are stable with her lungs but there is a problem with a rib and radiotherapy is to be done. The treatment finishes as COVID 19 raises its head.

This is the hardest thing I’ve had to deal with she essentially isolates herself from the rest of us in our bedroom. I’m relegated to the settee. So, it begins a time of us living separate lives to keep her safe. It is lonely for us all, just like many others at this time, but she has to be safe.

I am one of those who continues to work as I’m a teacher, working with children on the Autistic Spectrum and associated conditions. She needs to be safe.

We treat things in a matter-of-fact way. We know the end point and openly talk about it with others. It helps me to deal with things. I don’t want sorry, I don’t want wishes, I want to get on with stuff. I am surrounded by some great friends and colleagues who I can lean on, but I don’t say much.

The rib situation is getting worse, and it is now a lump. Chemo is suggested and begins. I arrive home to be met with tears. The long flowing red hair is falling out in clumps. I dutifully borrow the father-in-law’s hair clippers and the hair is removed, every bit, finished off with a trusty razor. Things are quite scary, long red hair to no hair changes the narrative. We are into what is really the beginning of the end. She refuses to have a prognosis, what is the point, she has some time left, hopefully years, we get on with stuff. Our daughter is going to Newcastle University, our second child is doing his A Levels and our youngest is at the local high school.

The Chemo slows things down, even slight shrinkage with the rib tumour and it is agreed that no more Chemo is required for now. There is no change to what is coming, it will eventually get to the day we have been waiting for.

Another check-up and the rib causing concern, it has begun what will be the rapid journey to the end. For those that knew Natalie, she could be fiery and say things to shock, she did it at school as she did it throughout her life, courting controversy just to provoke a reaction.

She had told me that I should find a new woman. Not just once but on several occasions after she was diagnosed as Stage 4. She means it. She knows that I’m too laid back to even think about these things. Some people are shocked when I tell them, others laugh with me at how ridiculous such a suggestion is.

Our youngest son is Yorkshire U14 Fencing Champion for the Foil. She is so proud of him, yet disappointed that she can’t be there, but it clearly means a lot when we get home.

The Chemo isn’t working, and she tells me again that I should find a new woman and not to worry about it. It is a measure of the woman that she wants us to get in with lives and be happy. She is upset by the death of an actress from cancer who wrote a letter to her husband willing him and the kids to carry on with lives. She wants the same for us and tells us so.

A prognosis. She finally asks and we are now talking numbers, possibly 18months, even longer, but it is “no exact science” and it could be 12 months. She has already been talking to the insurance people when I get home and she has the wheels in motion.

She is to start a new Chemo, one that can be had at home.

It is the hottest period ever in the UK, she says that she feels a bit funny, her legs don’t feel great, no doubt because of the weather. It is the end of term. I am back paying first team cricket which pleases everyone and I’m going to Cleethorpes to play the day after we have our summer do at work.

I’m woken up in the morning by her on the phone to Weston Park who tell her to go to Doncaster Royal Infirmary A&E. She keeps falling over. Off we go. She tells me I am playing at Cleethorpes; I have to go, our oldest son is excited about me playing for the first team, she is pleased I am back there, she loves the fact that there are people who think I am too old and yet I am still a star turn. It is something of a turnaround, having been told that people won’t forget that I decided to go to a Play-Off match soon after her diagnosis and not play cricket. It angered her that family were considered by some to be unimportant. She never got to tell that person what she thought of them.

I am sent away from the hospital, and she is waiting to see what will happen.

I’m told that I should be at the hospital with her, but people know, deep down, that she wants normality for us all. Get on with life.

She is getting transferred to Northern General that night where there is talk of operating. The tumour is pressing on her spinal cord and her legs don’t work. No one saw this coming.

Weeks in hospital, a blast of radiotherapy again at Weston Park before being transferred to Doncaster, the operation not done, a decision made on the morning of the operation as the risk of infection is too great, recovery time long and therefore uncertainty.

We prepare the home for her coming home, we have submitted plans for an extension, a new kitchen, a new bathroom, and bedroom downstairs. It is moving forwards, and she comes home with a special bed and hoist and regular care from some great people. She has 6 weeks of this care in place.

It is difficult being a carer. I am working at school, but life is get up, sort some food out for Natalie, drinks, tablets, off to work, home, sort out tea tablets and so on.

Our son has got in at Durham university and starts soon. She is so happy that he has done it.

Her care package is about to change and with it our lives. She hates the new carers; they aren’t like the others. It signals the beginning of the end. She is being awkward, not eating, not drinking properly, she has had enough. It is frustrating that we are here.

I get a phone call from paramedics to say they have been called because she was thought to be not breathing. She has an infection and off we go to A&E.

She knows.

We sit in A&E and she says she hasn’t got long left, I tell her that we are having an AGA for the kitchen. It is the last thing we talk about.

It is 13th October.