Bunny who?

Why? Who? What's this blog about? It's about MEEEE!

Being a Widow

My experience of dealing with grief as a widow


About Jane's brain tumour journey: Astrocytoma.co.uk

I couldn't do that...

10 June 2016

One of the things I hear a lot when I talk about my job as a palliative nurse, from nurses as much as from other people, is: "Oh, I could not do that. That sounds so sad". Strangely enough, I find my job very uplifting most of the time. I am able to help people at the end of their lives by being there for them and for their family. The desperation of hoping for a cure is gone and all the energy and time can be focused on making things as good as they can be. To me, that lifting of that burden makes a lot of difference.

I became a nurse after my experience with Jane. I will happily admit that some of it most certainly has to do with using my job to "make up" for some of the things I feel I did "wrong" when I looked after Jane. But this therapeutic part of my job is getting smaller and smaller and I mostly love this job because I seem to just love providing palliative and end of life care. I used to find it difficult to look after people with brain tumours but not anymore. I am currently looking after a young woman with a brain tumour and everything is reminding me of Jane. She even looks the same due to the medication she has been on.Whilst in the past this might have made me cry, these days it reminds me of the precious time I got to spend with Jane when she was in that situation. Time that was made so much easier by the fantastic support from nurses, health care assistants and doctors.

Every nurse seems to have their own "thing" that they say they couldn't do. I can't imagine looking after children. I'm not good with kids and I find it rather unfair of nature to make them ill. It makes me angry. But my main "I couldn't do that" is oncology. And that is related entirely to Jane. I was watching the excellent The Big C and Me on the BBC this morning and I was in floods of tears. I just could not deal with seeing those people going through their treatment. I remember all too well the feelings of hope, desperation, hope, anger, terror, desperation and loss of future. Working as an oncology nurse would destroy me. Call it an un-resolved emotional issue but I simply cannot watch people go through treatment without feeling all the emotions again. When I see people survive brain tumours, I'm happy for them but also a little bit angry and jealous. I could just not do that job.

And yet, when it comes to end of life care, all I feel is positive emotions. I feel the ability to use what I went through and make things better for other people.

I guess the whole "I couldn't do that" is just another way of making sense of our personal experiences. We learn to deal with what happens to us so we feel we could cope with it. I remember Jane once telling someone with breast cancer that she could not imagine having breast cancer. She thought that would be much worse than a brain tumour. And the lady with breast cancer said the exact opposite. Perhaps then, my inability to cope with oncology is because I just never learned to deal with it when Jane was going through it. I only really found my strength once it became clear she wasn't going to live. I hit my stride and found what I was good at: looking after a dying person. I'm glad there are other people who are looking after people going through cancer treatment. Because I just couldn't do that.
Keep Reading: "I couldn't do that..."

Forgetting to remember

28 November 2015

It's 5am and I have been awake for 2 hours. I woke up initially when our cat was meowing incessantly at our bedroom door. She has since stopped (yes, I note the linguistic impossibility of something incessant stopping) but I'm still awake. This happens almost every night and at some point, it is going to break me. What is keeping me awake? Work, of course. I know it is not uncommon at all for a newly qualified nurse to be kept awake by things that didn't go well or things they forgot to do but I feel there is a much bigger issue here. It's about forgetting to tell people about the things I have or haven't done.

It isn't the fact that I didn't get to do that wound dressing today that keeps me awake. These things happen. It's the fact that it completely escaped my mind to hand it over to the next shift. It isn't that I didn't get round to doing the referral to the district nurse. It is the fact that I forgot to hand over that I didn't do it. Random once daily BMs on patients I didn't get to do: not a problem. Forgetting to tell the next shift I didn't get round to doing it: problem. Changed a patient's mattress and didn't get round to cleaning the faulty one: not a problem. Forgetting to tell the next shift that I just dumped the mattress somewhere, fully planning to clean it later: problem. Forgetting to write that patient's hairdresser appointment in the book: not a problem. Forgetting to tell the next shift they need to do it: problem.

Things like that happen every day, multiple times. I don't mind not getting work finished. I am more than happy to admit when I have simply planned my time wrong. Planning is something that can be learned with time. But remembering to finish things I started has always, always been a problem. And the issue with it is that when people discover the thing I have forgotten to do, it makes me look careless, forgetful and incompetent. Because there isn't a note on the mattress that says: "Marieke knows she forgot to clean this today, please don't think she thinks it is acceptable to just dump it in this corner". There in't a note on the lady's wound dressing that says: "Marieke knows she should have changed this today or at least told you it needs changing but she forgot." I think of what I would think if I constantly just found things someone else should have done or handed over and instead I am left to sort it out: it makes me wonder if they are competent and it makes me question if they have the right attitude for the job.

How can I make this better? I am taking my ADHD-meds more regularly than every before and I don't think there is anything more I can do in that regard. Not even sure any of that is ADHD-related. Lists do only part of the job. Because you only put on a list the things you remember to put on a list and things your brain feels are important enough to put on that list. It seems that I struggle to remember the peripheral things of the day. I didn't forget to change that dressing: I decided I didn't have time and that it would hold until tomorrow for the next shift. And at that moment, the task of doing the dressing went out of my head because my brain doesn't feel that handing that task over is actually still part of the task. So there is no mention anywhere of the dressing not being changed. Patient needs a new mattress urgently? Done. I put the old one aside to clean later because i was in the middle of something. But my brain feels the task (getting the new mattress) is now finished and completely forgets that 'aftermath' of the task.

I feel I am leaving a trail of half-finished things and little time bombs (of varying importance) behind. It is not relevant how important the thing I have forgotten is because what matters is the process of forgetting, the principle of just leaving things for others to discover. It would be weird to call work in the morning with a list of things I forgot to tell them. Because many of the things are not that important and it would probably just make me look weird and work-obsessed (which I am).

And so now here I am at 5.30am, writing this blog post just to get it out of my head. And part of me hopes that the person on the next shift reads this, so that I can make sure they know I am not just a lazy person who doesn't care. But also, a very large part of me wishes my cat would stop waking me up at 3am. Because there is nothing I can do it this time but lie awake and berate myself.
Keep Reading: "Forgetting to remember"

I made it!

15 August 2015

Dear Jane,

Today is monumental. From the despair of your illness and the sadness of losing such a brilliant young mind has come something positive: today my mentor put her signature to a piece of paper that say she feels I will be an excellent nurse. I couldn't, and wouldn't, have done it without you.

I know! I can't believe it either...
I remember, back in Leamington Spa, that I completed an application for the position of Ambulance Technician in Coventry. I remember being upset when I didn't get the job, only because I did not have the right driving licence and they had many applicants who did have that particular bit of paper. We discussed that maybe I could go to Coventry University and train as a paramedic. We agreed that I would go back to university and do it once you were finished with your BSc, MSc and then your PhD. And in a way, that is what happened.

I have already apologised for nagging you in the past when you were writing your dissertations. I am only too glad you were not around to witness the hypocrisy I displayed by moaning constantly at The Wife that she should stop nagging me about it....

When I started university, everything revolved around you: all my learning, all the questions I had, all my medications, all my interests, all my tears, all the recognition, all my patients, all my empathy for people with similar conditions...it wasn't about me. It was about learning to place your illness in context. I wanted to re-trace all the medical and nursing interventions you had and understand each one. As time went on, as my life was no longer about losing you every minute of the day, I felt lost for a while. If this wasn't about you, then why was I doing this?

After a very difficult second year, in which I seriously contemplated leaving the course, this year has been great. I have found my feet and although still very much thinking I am in way over my head, I seem to have become a nurse, or at least, ready to start working as one. You have inspired me throughout. Many people, after hearing your story, have called me brave or told me how amazing it is that I am now a nurse. To me, it feels entirely natural. I hope that I can care as well for others as I cared for you and do the things I did wrong with you better with others.

When I applied to nursing school at 18, I was too young and immature. I always regretted not going back. Because of you, I could. You have made my dream come true. Thank you.
Keep Reading: "I made it!"

More than anyone, ever....

26 May 2015

One strange thing about being happy again is that I am so much more aware of how easily we tell people things such as: I have never been this happy before. If you say it to your current partner as a non-widowed person, it makes them feel good and you may very well mean it. When that thought comes to MY mind, as a widow, I swallow the words before saying them out loud. Because how do i know this is true? My relationship with Jane was fine. We were happy. I am happy now. The relationship ended because Jane died, not because we fell out of love. If I say: I have never been this happy....am I lying? Am I just saying it because I am just so happy right now? is it betrayal of Jane? Is it just the kind of thing people say without really thinking what that actually means? Do we say it because we simply cannot find other words to express how happy we feel and the only way we can express it is by stating this happiness is better than anything else, ever? Does anyone ever know it is actually really true when they say stuff like that? Deep down, everyone wants their partner to think they make them happier than ANYONE ELSE, EVER. Will The Wife think: Wow, I make her happier than her late wife did? Or will she think: Really? Does she really mean that or is she just saying it?

Declarations of love are often loaded in a way we don't realise. Things such as: I have never felt like this, or: you make me happier than I have ever been roll off the tongue easily and I have no doubt most people really mean it when they say it. And it is such a nice gift to give to your partner: to make them feel they are in every sense better than anyone else, that only they truly understand you etc.

When you are widowed, such things become a minefield. Sometimes I get frustrated that I can't just blurt such things out, like most other people can.
Keep Reading: "More than anyone, ever...."

Inspired by Florence Nightingale

11 May 2015

After months of working non-stop on my dissertation, I was feeling a little bit flat and exhausted. What I needed was to reconnect with real-life nurses to get my spark back and get fired up for the last part of my training. No better conduit for this than the Nurse who started it all: Florence Nightingale.

Florence Nightingale
I was very honoured to be chosen as the nursing student to represent the University of Northampton at the annual Students' day of the Florence Nightingale Foundation. The Foundation aims to keep Florence's legacy alive and promote nurse education by providing scholarships to nurses. Nursing and midwifery students from all over the UK had come to St Thomas' Hospital in London (where Florence opened her first training school for nurses in 1860) to learn more about Florence and her amazing work. People had even flown in from Scotland, Wales and Northern Ireland and it was great to meet nursing students who, like me, are at the start of their nursing journey, full of enthusiasm, pride and brimming with ideas. Just what I needed after months in a stuffy library!

The first part of the day was taken up with an excellent debate about many aspects of nursing, benefiting from the knowledge from a crack panel of experts. We got the chance to ask questions and have our say about a variety of topics. It was obvious that leadership is the Big Thing in nursing today, as it took up most of the questions. I have to admit that I am a little cynical about the emphasis that is placed upon it by politicians and NHS managers. However, after the discussion, I finally understood what leadership means to nurses at the bedside and how everyone can make a difference.

When the subject of nursing research came up, I explained how at Northampton, our nursing dissertations are research proposals for tangible patient improvement projects. The panel said they very much applauded the approach the School of Health at the University has taken and that all students should try to get their work published or their research proposals put in practice.

We then watched a documentary about Florence’s life which reminded everyone how much one person can achieve if they have the drive, passion and knowledge (and, in Florence’s case, a knack for statistics apparently also helps). In a time where no respectable woman wanted to be a nurse, Florence set in motion fundamental reforms to the profession and to how hospitals were run. She sure was a leader before her time. We visited the Florence Nightingale Museum (where fellow nursing pioneers Edith Cavell and Mary Seacole were given the attention they so richly deserve!). The day ended with an impressive commemorative service at Westminster Abbey with more than 2000 nurses, old and young watching Florence’s Lamp being carried as a symbol of the transfer of nursing knowledge. In the interest of truth, I have to admit that I did not attend the church service. Unless absolutely unavoidable, I do not attend church services and having seen the Order of Service, I felt there was simply too much emphasis on thanking God (whom I do not believe in) for nurses and Florence Nightingale. However, it is still great that 2200 nurses got together to celebrate Florence and the nursing profession in general.

Let me tell you, all those people who say that degree nurses are not passionate about care should come and spend a day with this group of people. I smiled all the way through the day. We visited the Florence Nightingale Museum (where Edith Cavell and Mary Seacole were given the attention they so richly deserve!) and watched a documentary about Florence's life. She sure was a leader before her time!
Keep Reading: "Inspired by Florence Nightingale"

Dear Jane

10 February 2015

It feels weird after nearly 4 years to be writing something directly at you. I don't actually believe you are in any way around me, spiritually or otherwise but it seems easier to write it like this than as a 'normal' blog post.

This week I will finish my penultimate practice placement for university. Once again, being with the district nurses has made it clear that I want to work in the community. Once again, the bit I was most comfortable and confident with was when dealing with patients at the end of their lives, and offering comfort to their families. I really wish you could know in some way that the legacy of your death is that I am able to make things easier for other people. Yes, I know it sounds somewhat arrogant for me to say that but I am convinced that I really have something to offer to people and that I can play an active role in making the prospect of loss and the aftermath of that loss easier for people. Even if only a little bit. I feel no discomfort around death or dying. It feels as natural as life. Perhaps that is a weird legacy for you to have left and if you were in some way able to talk, you would probably tell me that you would rather be alive and not have a legacy at all! Fair point.

Your BSc graduation in 2005.
I need to apologise to you. When you were working on your undergraduate and then on your Masters and finally on your PhD, I nagged you relentlessly about doing work, sitting down and writing, not procrastinating so much and just bloody well get on with it. I now realise that all that time, you have been a saint for not exploding at me and starting a big row. I now realise I had NO IDEA what it is like to do a degree. It is HORRIBLE. For you to voluntarily choose to do 3, or at least try to get to 3, is incredible (or incredibly stupid :-).  It puts the work you did in perspective. Especially the work you did in trying to finish your PhD so you could, in your own words, "die as Doctor Daniel." Whenever I am moaning about how hard my tiny little undergraduate dissertation is, I think of how hard you worked. How you got through your exams knowing that 2 days later, you were going to have brain surgery. How you tried and tried to keep working, even when you must have known you were no longer able to string your thoughts together in to a coherent narrative about corporate social responsibility (btw, I am still not exactly sure what your PhD would have been about but I have given up trying to understand it!!!).

The next few weeks, I am back at university and they are teaching modules on End of Life care. I look forward to these modules. Because I know I will recognise most of the things we will talk about. I love that I still come across people who were involved in your care. They all remember you. They all remember what a great team we were. And they all love it when I tell them that our experience is being put to good use in the hope to help others. Most of the time, people who work in End of Life care don't know what happens to the family after the patient has died. All they see is the immediate grief. I love being able to tell them that their work has inspired me so much; that their compassion for you (and me) gave me the confidence and determination to do something I really should have done years ago; that their care made me realise it is never too late to start caring for people if you are certain you have something to give them.

It will be 4 years by the end of May. It seems appropriate that at the end of that month, all my assignments will have been submitted and I will hopefully be ready to start the final 3 months of my training. I will never be able to thank you for what you gave me by going through your journey with me. Obviously it is a journey I wish we hadn't made but hey, sometimes life gives us lemons. The difference is that you left me with a recipe for lemonade.

Keep Reading: "Dear Jane"

So I have a job now!

24 January 2015

As part of my final year as a nursing student, we have to do mock job applications. This is to help us prepare for the kind of questions they will be asking at interviews and to build confidence in the transition from student nurse to staff nurse. I wrote a personal statement and sent it off to my tutor, ready for the lecture later this week.  Then I trawled through the NHS Jobs website to see what kind of jobs are out there for newly qualified nurses. I won't qualify until September but it is good to see there are plenty of jobs at the moment.

Then I spotted a job advert for a staff nurse in a community hospital. Community hospitals are not like general hospitals. They tend to have only a small number of beds and their focus is on keeping people out of a general hospital and to help them return to their own home as soon as possible. So for example a patient might be ready to leave hospital but their care package to help them with washing and dressing themselves has not yet been organised. So they go to a community hospital until that is sorted. Or people need a few days of extra care whilst their symptoms are being sorted out. Such patients do not really need to see a specialist doctor as, in theory, they are healthy enough to be in their own home, they just need a bit of support. This means that the care for these people is led by nurses, not be doctors. Obviously this is a fantastic opportunity for a newly qualified nurse to build up skills and confidence in her own decision making. And I love the focus on community nursing. I already know I am not born to be a hospital ward nurse. My heart is in the community, helping people in their own home as much as possible. I love the feeling that I am working with the patient as a team to get the best out of life for them, rather than in a hospital where the power is firmly in the hands of the nurse and doctor. However, ward-based nursing does offer great learning opportunities for newly qualified nurses that might not be available if I was to go straight 'in to the community' as a community nurse. I would have close support for the first 6 months and a chance to obtain additional clinical skills such as IV therapy, palliative care training etc. It just felt like a slightly safer start. Seeing as my last experience on a ward in a hospital was a very difficult one (I nearly quit the course afterwards), I feel I need a little bit more reassurance about my abilities.

So this job seemed like the perfect half-way house: a chance for me get to grips with ward-based nursing and learn about discharges, working with multiple disciplines, different health professionals and increase my knowledge of medications and their use, whilst also keeping my eyes firmly on the community by making sure my discharges are well organised and in the best interest of my patient. not to mention the fact that they also provide palliative care. And that is where I really want to go: palliative care in the community. When JD was ill, the nurses I met back then inspired me to go on my nurse training. Without them, things would have been so much more horrible than they were. Good end of life care is vital, not just for patients but also for those left behind. I firmly believe that good end of life care saves money, even after death. Because I was not left traumatised. I was left sad but satisfied that the best was done for JD. I believe this helped me to quickly become a productive member of society again, confident that I was able to handle the world. It helped me to move forward.

Sorry, I got side tracked there for a minute (*climbs off soap box*). Anyway, I thought: well, I wrote this mock personal statement for my course, I might as well tweak it and apply for this job. You never know. I got invited to an interview, passed the maths and English tests before getting to the actual interview stage. I presume they liked me because they offered me the job on the spot. Even when I said I couldn't start until September 19th, they still said: that is ok, just let us know when you can start. I was so happy, I bounced home.

And then I had a small panic attack. With so many people telling me I would make a great nurse, what if I failed? What if I don't even get my assignments in on time? What if I am not actually as great as people think? I am caring and willing but I often lack eye for detail. Am I good enough?????? These worries are not new to me, nor are they unique to me. I think every single nursing student has had these thoughts. So I am just going to ride this out and see where it lands. if i fail, then so be it. On the other hand: I wrote 1000 words of the dissertation so I guess I was motivated for a little while....

I HAVE A JOB. AS A NURSE. Like, wow......

Reading that, I may have just felt a tiny amount of pride in myself. Me. A nurse.... unbelievable.

Keep Reading: "So I have a job now!"

You should write a book!

20 November 2014

Many people have told me over the past 4 years that I should turn the blogs I wrote when Jane was ill and my first year as a widow in to a book. People have said it was helpful to them, informative. They said it made being widowed less of a mystery and made them feel more confident about approaching someone they knew was recently widowed. There have been emails and messages from partners of people with brain tumours, both in the comment section on this blog, as well as in emails I have received.

I find it extremely humbling that the blog is in any way helpful to people. The blog has been extremely helpful to me in many ways. Initially it was part of my normal blogging. Then when Jane became more ill it became a way to inform people without having to spend all my time on the phone or emailing people individually. When the end was near, it became a way of dealing with my fears and frustrations. Afterwards, it was my crutch; my only way at times to pour out my most painful, raw emotions right at the moment I was feeling them. More often than not I would break out in tears and run to the computer to start typing. None of the blogs I wrote then (or any of the ones I have written since) have been edited other than for spelling and typos. I have always written them in one sitting without going back to read them. Often they started about one thing and ended up being about something completely different.

I have read many books written by people who have lost someone or gone through a traumatic experience. These books always seem so well written, so planned out, so organised. The thing people tell me is so powerful about the blogs is that it is so raw, straight from the heart. But when I read them (which I never do), I can not imagine people would find them anything other than slightly tedious and confusing. After all, they are about someone they don't know, whose life they have never interacted with. It might work as a blog but I can not see it as a book.

And yet, with so many people telling me it might help others.... I have started to think maybe I should do something with the blog. After all, in a way the book has already been written. It just needs tidying up. Which is the bit I am rubbish at. I write from the heart with no filter. I am simply not able (or willing?) to re-write parts so that they are in a better order or so that they are more concise. Is this what editors do? Where does one find one? How much editing should be done? Is there something that should be added or removed from the text? It is about 570 pages long so something will have to be sacrificed. Does it need small bits of clarifying text in between the blogs?

There might be someone out there who would benefit from knowing they are not the only one who lost patience with their partner when they were unable to swallow that medication that was so vital to keep them going; that they are not the only one who has shown up at work smelling of booze because last night someone offered to 'babysit' their partner so they could just go out with friends and forget all about it for a few precious hours. I'd hate to think that person would not be able to find this blog and feel better, even if for only a few minutes.

I have no delusions of grandeur about this blog. It is not the best thing ever written. But if it helps one person to feel better, isn't that what I am becoming a nurse for? Isn't that part of my nursing responsibility?

So, if you are a writer/editor/proof reader and you think you can work with me on this project (read: I give you the text and you make it in to a book), then get in touch. Or tell someone to get in touch with me.

By the way, I forgot another vital function of this blog. When I met the new Mrs through mutual friends 3 years ago, she had already read my blog (we live in a small town). She knew more about me than I knew about her. She said that reading the blog made her less scared of getting involved with a widow because she understood what I had gone through before getting involved with me. It made the widow thing a part of me, without making it all that I was, if that makes sense.

I quite like the idea that the raw story of loss is what has played an important part in finding happiness. Jane would have liked that a lot.
Keep Reading: "You should write a book!"

What about our future?

29 September 2014

So yes, this happened
So Girlfriend became Fiancee and has now become Wife. Yes, I got married. 3.5 years after being widowed, I got married again. Well, I say again, but previously I had a civil partnership with JD and, much to my surprise, getting married felt very much different. I really did feel like having the weight of tradition behind us. It felt like a much more solemn occasion, which does not mean it meant more to me than when I had my civil partnership. It was just different. And I liked that it was different. Because it meant it was new for both of us, rather than Wife feeling that I had been through all of it before with another woman, we went through it together for the first time. That felt important to me and, much to her surprise, it turned out it was important to Wife as well. 

We had a lovely day, the weather was nice, there was a lot of family, even from Holland, and people had made fantastic food to share with everyone else. All in all, it was fabulous. It felt really meaningful for my sister and parents to share this day with us. They were there when JD was ill, they were there when JD and I got our civil partnership and they were there when we had to say goodbye to JD after she passed away. My sister read a lovely eulogy at JD's funeral service and so it meant a lot to me that she was willing to do a reading at the wedding. It felt right that those who were there when life was at its worst were now there to share the moment life got back to being fantastic again. Which is why I chose my friend R as Maid of Honour/Bridesmaid (or Best Bitch as we called them). R and her husband sat with me in the hospice the night JD died and got me through the first few weeks & months afterwards. It all felt right.

So back to normal life then. But not before first going to London to see the amazing Kate Bush live. It was truly mind blowing. So now it is back to university in an attempt to complete the 3rd and final year of my nursing degree.

Last night, as we were cooking dinner, Wife made a throw away comment about our retirement. She pointed out that I will retire at 68. She will be 56 by then with still 12 years of working life left before she can retire. That means I will be 80 when she retires. So the plans we have about going travelling after our retirement are probably totally impossible. There will be no joint retirement. No globetrotting. Just me being bored at home whilst Wife has to go to work.

It threw me completely. I had never thought about this consequence of the age-gap. I burst in to tears and spent the rest of the night feeling incredibly sad. This morning, the feeling still has not gone away. The only way to avoid this problem is to make enough money so we can both retire early. If anyone knows of a scheme that will enable Wife to retire at 56, please let me know. You'd be making me very happy. For now, I will just have to put my faith in weekly lottery tickets.
Keep Reading: "What about our future?"

So erhm...this happened

17 September 2014

Keep Reading: "So erhm...this happened"