Author: DF

Blue lights and tears

We were back again the next morning, walking through the dismal corridors to the single waiting room, a couple of broken sofas and a kettle for comfort. We were able to go in to see her again, masks over our faces. They still hadn’t ruled out pneumonia and hadn’t ruled out her being contagious. She was still in the room on her own, one nurse keeping her company, and a couple of plastic chairs by a big barred window. This was a room with no air con – the window had to be opened – daft for a room with someone in a coma.

I had liaised with the Marsden, so I knew they were aware of things, but I still wasn’t sure how involved they were with the treatment. I did learn they were in talks behind the scenes, but before then we were in the dark, and feeling very alone.

And none more so, than when the doctor called us outside the room, into the dingy waiting room. We knew things were still in the balance, but he didn’t sugar coat anything. Her lungs were struggling, as was her heart, kidneys, liver, almost anything they could check. It was a battle to keep her going.

He then told us we should bring the family into see her, as she didn’t have long.

As when we had the diagnosis, my blood ran cold, and a sweat came over me. My mother in law was in shock. We had barely told the children how bad things were, and they hadn’t seen her in two days. When they had left her she was talking and playing games with them – how could I explain that their mother wasn’t able to see them, talk to them, was in a bed with tubes and machines, and would never come home.

That conversation is my biggest fear. I can hold things together for me, most of the time. There have been a few lapses of control, but the dark days can be put at bay. But the children, how do I tell them. I cant even comprehend how, what I say to them, how do I make it better.

And now a doctor was telling me that that conversation had to happen now. I had to get some air. It was raining outside but I didn’t care. That horrible Soviet style hospital, an institution dated back to the 70s had taken my wife away.

When I came back in, we resolved not to tell people to come in straight away. Family knew what was going on, but we didn’t want to rush them unnecessarily. The nurses seemed a bit calmer – and that helped us feel better. But it was still a depressing evening.

However, by the next morning, things had changed. The Marsden were now involved on a closer level, and her specialist had galvanised the ‘A Team’. They had access to drugs the NHS couldn’t afford, and that meant hope. And as we also found out, that meant a surprise transfer to the London hospital. We left the room to get a sandwich, while she was to be moved to the ward, and while there the doctors had organised an ambulance, and another high speed ride was initiated. We were out of the old hospital, and now into the arms of the Marsden doctors.

To hell and beyond

We were going to go to Tenerife on Oct 18th, just at the start of half term. The weekend before, my wife started having some breathing issues, and a bit of a bad back. We thought this was a re-appearance of an old back problem, and she tried some stretching, and Reiki style techniques. Friday night had been a struggle to sleep, but she had still been able to drive out on the Saturday to get her nails done with our daughter, and so we persevered into Saturday night.

This night was much worse, and she didn’t get much sleep at all, with a really tight chest, and was only able to breathe properly sitting up. Sunday, we called the Marsden to ask for advice.

They said to either come in, but we would have to wait for test results, or go to A&E – we took the latter quicker option. So at 4 oclock we threw the kids in the car with some snacks and a book, and went straight there. Luckily later our neighbours would pick them up.

In the Triage area, my wife couldn’t even stand up, and as I stood there at the counter, I remember looking back at her sat on a plastic seat, and almost seeing her life leaving her. We were rushed through a series of nurses and doctors, having tests done, and she was put on oxygen. Her intake of oxygen was down to approximately 10% of what you would usually expect, and obviously fatal amount without breathing support.

Through the night I sat by the bed, just talking to her, telling her to keep breathing. Questions were asked, papers filled in, and the background explained. The Marsden were contacted, and everyone was involved in planning what to do.

It was strange – as a husband you are pre-programmed to look after your children and spouse, but when something like this happens your focus changes. The kids were looked after, so I forgot about them. I had one focus, but when the doctors came in, that was redundant – they were the specialists, and they should do their job. What was I to do – I’m a trained accountant, but no amount of spreadsheets would help this. But I could sit by the bed, and keep an eye on how things progressed.

Eventually, I left at about 3am – the nurses told me to go. I had a very emotional drive home – not the first time in this crazy story. At home I ate a sandwich, and got some sleep, before seeing the children before school and going back in.

Things hadn’t improved, and now the feeling was that they needed to move her to a hospital that could answer what they thought was pneumonia. This would mean travelling under blue lights. When told I could see the concern in her eyes, but the nurse reassured her.

But there was a further obstacle. To do this meant coming off the oxygen piped out of the wall, and using a mask attached to an oxygen tank. And for this, a trial was needed.

It was a disaster – the portable tank didn’t give any where near enough to assist breathing. There was only one option, and so less than 24 hours after being admitted to A&E, my wife was put into a medically induced coma.

By now, my mother in law had arrived, and we were both in a state of shock. The driver and paramedic in the ambulance were great, they reassured us, told us what would happen, and did try to put our minds at ease. But still – WTF…

I pocketed my wifes rings, her bracelets, anything we didn’t want to lose and signed forms to allow the transfer, but didn’t really know what was happening. I felt caught up in a story that I didn’t want to read, and things were moving so fast. I hadn’t really called anyone – text messages help a lot – and here I was in the midst of this hell, that my friends and family were not aware of.

And the next hospital was awful. It was very Victorian – high, cold, dark ceilings, with barred windows too far away to see through. My wife was put in an ante room, off the ward, as they weren’t sure if she was contagious or not. We had to put on face masks to see her, surrounded by beeping machinery, pumps going up and down. No words can really say what it all felt like. A horror movie, a twisted mind had dreamed up. The nurses all came from abroad (God bless them all), and that meant that at times communication was limited. We (my mother in law and I) sat and waited.

Immunotherapy

So this meant that my wife was back to the Marsden on a regular basis again, once every three weeks to have immunotherapy.

This proved to not be as harsh as the chemo had been – it works by effectively ‘boosting’ your own defence system, and didn’t have as many side effects. It also took less time to do (an hour or so, not 6 hours sitting in the chair), and there were not as many drugs to take in the days before and days after.

And it worked – after three sets of treatment there was a reduction in the tumours, and this progressed through out the year, until September when the last round before a break. It had been so successful that we planned to take a holiday in October.

Not so long road

My wife has amazing resilience, and was determined to recover quickly from the mother of all operations. After only a few days in intensive care, she was moved to a normal private room, and within a few more days was up and walking.

It would be tough for her to get back to full strength, but she was sent home earlier than we expected. I had resorted to driving back and forth to the hospital as I wanted the children to have some sense of normality, but I was knackered with it all. The motorway had constant roadworks, I was in work for a few hours, and it wasn’t good to be driving so much. Not something I wanted to do again (little did I know).

But the drive home was something else – an unexpected joy. It was also the third most careful drive I have ever done, after bringing my children home from hospital.

Of course, the news that they had been successful helped our mood, and we could now settle for a stint of recuperation, and hopefully normality.

The rest of 2017 was spent doing just that, and we even managed to get away as a family later that summer, but always having to be aware of how she was. We had a big party, mainly to celebrate life, and moved house – wanting to get all the stress in one year! Our daughter started secondary school – I am always amazed at how she coped with everything going on.

And then to 2018. Unfortunately, I have learnt with cancer that nothing ever stays the same. We found that the tumours had returned quicker than we hoped. Surgery was out of the question, but now a new line of treatment was available. And so we entered the world of immunotherapy.

Intensive

After a good Christmas, with a lot of family, and getting some nourishment into my wife, we started 2017 with a new plan. It was decided no more rounds of chemo, but because the treatment had worked, the tumours were small enough to tackle with the operation.

This wasn’t to be taken lightly. The operation would take 10-12 hours, and involved opening the stomach up, removing any organs with visible signs of disease, and scrapping the tumours away from the wall of the peritoneal. I was told it was like a thick almost waxy substance on there. And there was a 2% chance of death, and 10-20% chance of serious complications. By this, they meant if they had to remove any of the colon or intestine, then that could lead to a colostomy bag. There would also be a full hysterectomy, leading to the menopause, and obviously no more chance of further children. Following that, hot chemo would be placed directly on the area to do a final stage. Recovery would be a couple of weeks in intensive care, and then a few more weeks in hospital recovering.

And this was lucky – we had health insurance that would cover the cost, and because of the chemo, a chance to even have the op. But it is a big step – this is a gamble no one wishes to take, and has side effects that are forced on you. The choice taken away about children, the potential life changing damage.

We left the children with my parents, and drove down to the hospital, with my mother in law and brother in law. We had a place rented close by, and had no idea how long we would need it. It was an early start, and we stayed for her to be wheeled out of the room, and off to theatre. I have never seen someone be so brave – I could never do that without having a major breakdown. Cancer shows all sides of people, but brings out the inner strength.

We were in a blur the rest of the day – killing time before we would get some news. I wanted to be alone – it is the main way I cope with things. Going for a walk, sitting in the car, anything to be by myself.

Thankfully the call came through late that afternoon. The operation had been a success, and she was now in the ICU. It would be a while before she would recognise us, but the first hurdle was jumped.

Like six rounds in the ring…

In the end she had six rounds of Chemo, once every month, with pills to take in between. These were to stop the sickness, and to counteract all the other nasty side effects.

She had to eat properly – we would buy high protein drinks, some even on prescription, so that we had a cupboard full (they got thrown away eventually as she couldn’t stand them). I had late night trips to buy angel delight (splodge as my childhood fondly called it), and came adept at cooking pancakes. Anything to keep her strength up.

After three rounds we had had a scan, and a meeting with our specialist. Thankfully the pain was doing the job, and we were seeing shrinkage of the tumours. This was amazing news, as it meant the aim of surgery might be coming.

It was also around this time that we had a battle with our life insurance company. Now, we had taken out cover fortuitously only a couple of years ago, and thought we were covered for an event like this – don’t we all. But oh, no, we weren’t, at least not easily.

There is a distinction between terminal illness cover and critical illness cover – and we had only got terminal. This meant that while hoping beyond all hope that the treatment was doing some good, and our specialist doing the same, we had to give evidence to the insurance company that showed a twelve month or less life expectancy. Always check the small print…

But after all that, the six rounds of treatment did work, the tumours had reduced, and she could take a break to get some strength. We took a short holiday with our children, and prepared to enjoy Christmas, in the knowledge that the probable next step was a peritonectomy.

First Treatment

It wasn’t long after the diagnosis that we had met with a very specialised cancer doctor. Unfortunately my wife has a form of cancer caused by asbestos (so we found out later), a mesothelioma of the peritoneum. This is usually associated with the lungs (people breathe in the asbestos fibres), but here the tumours were forming on the wall of the cavity surrounding all the organs in the lower abdomen. God knows how that happened.

We were told there were a couple of approaches to try and get rid of this. One was surgery – a ten or twelve hour operation to open up the cavity and remove all the tumours. But the scans seemed to show this would not be possible – the bulk of disease appeared too great.

So that left chemo.

Now I had only ever met one person who had had chemo, and so wasn’t all that aware of what it entailed.

I soon found out.

My wife was very brave – she had a special outfit picked out, to show that the disease was going to be beaten. And she went with her mother for the treatment, six hours in the ‘chair’.

I don’t recall the specific drug, but it was tough and strong, and should help to reduce the cancer.

But the chemo also destroys everything else around it, and has severe side effects. In my wife’s case, hallucinations, great big bloody dragons in our room, watching over us. And a lack of appetite on top of the vomiting – they say to bulk up before hand, but the disease had made that hard, hence the rush to get the chemo started.

And then there were the mental impacts – eventually certain foods, and clothes would have adverse memories attached to them, and even walking into the hospital was a struggle. It was devastating, watching her lose weight, strength, happiness.

For six rounds – once every month, this went on. And not even knowing if it was doing what we hoped and reducing the disease. All we could see was the deterioration of a person.

My wife has cancer? A surprising diagnosis

My wife can’t have cancer? The build up to her diagnosis and horrible first hearing of that word

It was in late 2015 that my wife started to have some issues – her stomach was becoming bloated, and she had some abdominal pain at times. Nothing serious, so we thought, and we put it down to a food intolerance. We did start trying the different tests – gluten, wheat, lactose, anything that might be the cause, but nothing came back.

So into March 2016, she had been finally referred to a gynaecology specialist, and he did a laparoscopy. This is keyhole surgery, and the aim is to drain of some of the ascites – a build up of fluid in the abdomen – mainly caused by irritation. The cause of the bloating. This could then be sent for testing – trying to find the markers in the fluid.

While waiting for this to come back, she developed a sore shoulder – what we thought was an injury from being lifted onto and off the surgery table. On a torrential evening, we found out that that wasn’t the case – our local GP (God bless him) took one look, and referred her to a specialist who hospitalised her and within hours had her on a drip for a Deep Vein Thrombosis. She was lucky – the clot was in an artery leaving her heart, and only a small clot entered her lungs, however she was left on daily injections of blood thinners for nearly two years. Never, ever dismiss something as minor (a mistake we have made time and again). And apparently blood thickening is a side effect of her disease.

The tests did come back. At first, we were told that the markers they were looking for were clear. I learnt however, that the disease is a tricky customer, and that not all types will show up in certain markers.

We did then have a meeting with the doctor who had performed the keyhole, and both went along to see him. Meeting with a doctor is strange – most of the time it is you, maybe your partner, and the doctor. However on this occasion, there were a lot more people in the room. And this was because the diagnosis was of cancer. My blood went cold at the word, and to be honest I didn’t hear much else, but all I can remember thinking was

“STOP SAYING THAT”

As if, by not saying it, it wasn’t real. But they couldn’t stop. And in a blur we were then thrown into a whole new world.

The rest of the day flew by in a mix of further talks with nurses to try and explain. I didn’t take in much. Each chat would be in hushed tones, all very calm, when inside I wanted to scream, my back slick with sweat. I wanted out, wanted to leave all of this mess behind. How could they be so matter of fact about all this?

I cried in work the next day telling my team. I didn’t want her to die, I still don’t.

Thanks

Thanks for reading, and if you like what I have written, maybe consider giving a tip to help keep us going. Looking after my wife getting expensive, with treatment outside of the health insurance cover needed to keep her comfortable. You can give tips two ways – either click on the button below, or on cash app if you have it – http://cash.app/£mywifehascancer. It’ll help keep the lights on.

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First Steps

With this I hope to try to make sense of life as the husband of a cancer sufferer, and maybe give other people some sort of support. Some people will read this and understand, while others may skim through and click away, but hopefully someone will take comfort.

Eventually I will write up the history of how we are here, and then start writing regular updates.

Until then, enjoy the sun, but remember the suncream…