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Trials and Tribulations

It’s been a while since I updated this, so first, Happy Christmas to all. We had a nice time, usual rushing around visiting relatives, but we have managed to get some rest. It is hard – my wife doesn’t have the same energy as she used to, and also struggles with having people staying – she likes things just so, and not having people mess things up!

The big news came just after the last lot of scans (see my last post). My wife was called to say there could be a place on a clinical trial. This could be massive – apart from this the only option might be chemo. One person had dropped out (reaction to the drug and nothing sinister), and so my wife had to go in for scans, and blood tests. It was two days in the Marsden – which was quite stressful for her, as she had mentally come to terms with no more trips in. The trial itself would entail an overnight stay every 6 weeks, and then a weekly visit to have bloods taken. A big commitment, but hopefully worth the time.

We were unsure at first – this is Phase 1, so very early days, and obviously means no guarantees of what the reactions might be, how major the side effects could be, and no knowing what the mental impact would be. My wife really struggles mentally with going into the Marsden, and so this could be a last straw.

After the usual delays, and issues with blood taking and results, we are now waiting to know whether she will be accepted. We hope she will, and have mentally come to terms with the potential process.

So we will start the new year with some hope. Fingers crossed 2020 will bring some good progress – it would be a change for the new decade.

Kicking the can down the road?

As planned we met with the specialist. The meeting is always delayed, so we sit in the waiting room, desperately trying not to make eye contact with other patients, while making idle small talk.

I think it was good news, but it is hard to know what is good, when the parameters are so off from normal. Anyone else with the measures, and amount of tumours my wife has would be straight in hospital. But in her context, some growth, but no spreading to other areas is seen as good. Bad for us is spread of disease elsewhere.

How can that be? Good should be “Great news, it’s all gone”, not “Well, at least you don’t need chemo right away”. It’s messed up.

It also makes the week stressful. Family say it’s good, but inside we are saying it isn’t. We just have to wait another couple of months.

Sometimes not having a definitive move is really tough. Having an action to take is easier, definitely on your mental state. Again, I don’t know how to react, what to do, what to say. I don’t know what is going on in my wife’s mind. And then just when we have got to grips with the latest, another round of scans will come along.

Running up that hill

The check ups and oncologist meetings come around exceptionally quickly – they are now every two months, but feels quicker. My wife has CT scans, MRI scans, blood tests, and a day in the hospital, and then a week later we will head in to see her specialist.

That appointment is tomorrow, and that means that the last few days have been stressful. We had family to stay over the weekend as our daughter was in a school play, and that always sets my wife on edge. She struggles now to deal with lots of things going on at once, following the stroke last year, and needs time for her own space, which doesn’t always happen with elderly relatives in the house.

I have learnt to be helpful, but give her the space she needs. I cant imagine what is going on in her head – the slightest ache and pain causes anxiety. This week it has been a stomach ache – and when the cancer is in the peritoneal wall, that makes you think the worst. So far there has been no movement to the bowel, but stomach aches can signify that. It may be innocuous, but we thought that with the chest pains last year, and that led to pneumonia, a coma, and the stroke.

I have to find ways to cope, and one is running. I am not very good, and dont get out very often, but find it does clear my head. Amd luckily the study linked below came as good news. Even once a week can help.

https://www.theguardian.com/lifeandstyle/2019/nov/04/any-amount-of-running-reduces-risk-of-early-death-study-finds

It helps, me and may help others. Looking after yourself is almost as important as looking after the patient (I learnt that in therapy!), and this is one way I use.

Anyway, on to tomorrow, and hopefully good news.

#RedCups

So apparently Starbucks are releasing red cups today – a lead up to Christmas. I don’t agree with the advertising of this consumerism – I love coffee, but don’t need all the crap around it. What I don’t get is why releasing different cups is a thing – in the modern age of trying to be eco friendly surely we need less plastic cups being produced. And I also don’t understand people who get excited by this. I would love to have so little going on in my life that this was a big deal.

And how do I tie this into the name of my blog? My wife is desperate to go back to America – we used to holiday in Florida a lot (yeah, yeah), and one thing that will take her back there is a soy decaf vanilla latte – the small things. But she doesn’t care what colour the cup is!

Venice

Things have been going reasonably well recently – the last scans didn’t show too much deterioration, and as my wife is not having any active treatment, we decided to take a trip to Venice at half term.

The biggest hurdle is always travel insurance – anyone who tries to get this while under a cancer diagnosis will understand how tough it is. And how expensive. In the UK, a regular trip would cost say £30 – if you are ill, or have been ill, or have a diagnosis, you can times that by at least 10. And forget going any further than Italy, Spain or the Canary Islands – that is out of the question. It is a big source of stress in itself – you need a change of scenery, but cant afford to pay, especially as one of you is not working. Effectively you get penalised twice – once for having the illness, and then once if you try to do anything. It really isn’t fair.

We have found a reasonable supplier now – Boots have been good for us recently – however we will need to see what it is like when she is back having active treatment.

So we had insurance, we had tickets, and now hoped her to be OK. Thankfully she was – and so we packed our bags and woke the kids up ridiculously early to get our flight!

The next main problem with travelling with my wife is that she now gets very tired easily. We have to be very conscious of this – we have to factor in breaks during the day, we have to ensure she gets a good nights sleep and gets to bed on time. All things that you will be aware of from having kids! But this is serious – she can get confused easily when tired, but wants to be doing the same things she was before all this started – not easy after all her body has been through.

We also need to ensure she can keep warm – she finds it hard to regulate her temperature, and so if we are out late, or in the rain, we have to be extremely careful. And a cold weekend in Venice was one such place to keep an eye on.

However, the benefits of breaks away outweigh the tough sides. We needed to get away from home – there are too many reminders of everything there. And despite struggling with money, we will make this work to at least have a short time away. The pizza and pasta were good, as was the red wine and ice cream!

We Care Alot

The World Health Organisation define Palliative Care as an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness. However it also has negative connotations – patients often see it as end of life care.

This is what my wife sees – and who is to blame her – no one wants to go around a hospice and see people with similar illnesses to you. But there is a positive element to this care that she doesn’t see- they are not just there to help the patient, but also to get to know and care for the family and close relatives.

My wife wont have anything to do with the hospice that we have been put in touch with. She doesn’t want to meet the nurse, counsellors, and go and visit. I have been to look round, I’ve seen the rooms, the nurses stations and met with a few. I have also been to talk to a counsellor there.

This has been a great way to try and come to terms with the events of the last few years. Talking through with a professional, and understanding that the feelings and thoughts you are thinking are normal is amazingly helpful. I don’t know if it is something that will help everyone, but it can assist.

End of life is something that we do have to address – hopefully further away and not soon. And to do that we need help – no one knows what to expect, or how to handle what will come. Talking to someone before that time will allow for some understanding that someone with experience is there and knows your personal situation. As the saying – goes prior planning prevents poor performance.

I keep in contact with the hospice – more through the hard times, less when things are going well, and know that there is a trained person who I can call. At the end of the day, that is all you can hope for.

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.