Nostalgia

Sometimes just getting into the car can bring a burst of nostalgia. One such occasion happened today, with the radio playing David Essex and his famous track Hold Me Close.

Now this took me back to going home for lunch from primary school, to my mother making ham, egg and chips, and Gloria Hunniford on Radio 2 (this is in the UK).

Music has a great gift for giving us a sense of time and rememberance. Memories of happier times, but also sadness for loss of those times.

This isn’t a song I would listen to a lot, but for a few minutes I was happy, back at the lunch table!

Global Mental Health Day

Today is Global Mental Health Day, and I thought it worthwhile putting down some thoughts. I’m not going to claim that I fully understand what it is like to have a mental health issue, but I do know that I am personally working through a variety of issues. I have seen counsellors, and through that understand that I am trying to comprehend a lot of factors from the events of the last few years. Grief for the loss of the way of life we once had, grief for the loss of the wife I had, concern at how things will turn out for her in the future, fear of what may happen at any moment, on top of the pain of dealing with the various traumatic events that have occurred. Now don’t get me wrong, my wife has lost so much more, but our lives have been changed 100% from where they were.

Why mention this today? Posters in my office are raising awareness of Mental Health Day, with a focus on suicide, and the need to ask people how they are – ask twice being a theme. And posters giving facts that most, if not all of us will answer 14 times a day to the question how are you, with I’m fine. I’ve done it today, you probably have. But today I know that that isn’t true – today was one of the days when I could feel dark clouds descending this morning, for no obvious reason, other than it being a nice morning, and not wanting to waste time at a desk. That triggered overwhelming thoughts of despair, and I have spent the day feeling like I am walking through water, and that at any point I may trip and go under. My heart is heavy, I feel unmotivated, and am struggling with doing anything. All I really want to do is go back to bed and stay there warm under the covers, blocking out the world. But when people ask that question, I force a thin smile, and reply, fine, what about you. Not many people know what has happened in our lives – it is my choice to keep it private in work, but it means that on days like this I fight my own corner. And I understand that is stupid, that a problem shared and all that….

I should respond with a not great thanks, few things on my mind, but we don’t do that do we. We bottle it up for fear of showing a weakness to the world. I also feel that unless I have a physical problem, it isn’t real – my wife has a real, calculable illness, we can see it, measure it – she has a right to feel depressed, but for the rest of us…

I didn’t know what I was going to write at the start of this, and am not sure if I have got where I thought I would. Just a splurge of words, but sometimes a splurge is better than nothing. I’m no specialist, but I know what I am feeling, and am trying to understand how to cope with it. I try to go for a run, or listen to music, but a lot of things that used to bring pleasure simply don’t anymore.

I don’t have an answer, everyone deals their own way. Keep on keeping on.

PS The following sometimes helps me:

Back to life, back to reality

Things slowly started to get better with time. My wife was brought out of sedation, and over the days was more responsive, eating solid food and drinking bottled water. The children visited a few times and after two weeks or so, she was moved out of ICU.

I then had a battle with insurance – as she had come in through A&E, it was harder to get her moved to a room with a bed, rather than a ward. Anyone who has met my wife will know she is very particular, and having noise and movement around her didn’t help her mood, or aide her recovery. Thankfully everyone played ball, and within a few days she was moved to the Marsden in Sutton, closer to home.

I’m not going to go into too much detail of the remaining few weeks – that isn’t the point of this. The immediate threat was over, now we had to deal with the recovery, which was slow, but after 5 weeks in hospital, she was able to come home.

But it was a very different person who came home – after leaving the home she had had near total major organ failure, a stroke, lost sight in the left side, and was now dependant on even more drugs. And the toll on the rest of us was hard – we had been planning a holiday, and now had to increase the care around the house. We had had relatives staying with us constantly – and that causes strains. We appreciate their help, but sometimes need to be able to close the door on them! I hadn’t coped well with the stress, and neither had my mother in law, which meant things were not easy.

So where are we now, nearly a year on from that momentous few weeks? Thankfully my wife is slowly getting better – the steroids have decreased, however the eyesight still isn’t fully back. There are improvements, but not enough to drive. We have to be aware of any small slight illness – a cold for you and me, might be something more sinister for her. Never again will we leave things, and discount them as not serious.

I don’t want to go to Chelsea

My brother in law helped get her settled, writing her details on the board, and ensuring he knew the nurses. ICU at the Marsden was very different, a bright open room, lots of seats, and more up to date equipment. Not to say the last hospital wasn’t good in terms of treatment, but the modern nature made you feel more confident.

She was still in a coma, and would be for a couple of days, but now we were with the doctors and nurses who had been seeing her for two years. They determined that the issues had been caused by the immunotherapy, basically causing her body to over work, and start shutting down the major organs. Things were in a bad way (not as bad as the previous doctor thankfully), but we could see the way forward.

Now family could start visiting, and especially when they brought her round. In her typical fighting way, she was soon engaging with us all, and bossing us around. The kids could be taken in to see her as well (which they thought was great fun – mainly because they rank hospitals on hot chocolate). They still didn’t really understand the severity of the situation.

The major logistic issue was that the hospital was a train away, and this made it harder to take the kids for a quick trip – we had to combine it. My parents came down as they had now finished school, and so we could go up and back easier.

It was a Saturday when we had visited, and I was on my way home when I got a call half way back. She had had a minor stroke. Started with convulsing, and scared my mother in law who was still there. I was stood in the rain by my car at the station, not knowing what was going on, or what to do. They settled her, and sedated her, before we could all breathe again.

It is strange writing this down, as this a major thing to happen to a body, but feels like one more bump on the road for us. There have been long term implications – she cant see down the left hand side, has to take a multitude of drugs to counter act the effects, along with those taken for the other surgery, and it means our lives are a considerable amount harder. She doesn’t have the same energy, cant drive, gets tired, forgets things, cant see the children on one side, trips over the cat, but she is still alive. For one terrible evening, for one more terrible evening, that might not have been.

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.

Intense choice, and a mammoth operation

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.