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

Astrocytoma

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

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"

Nearly married: wedding stress.

21 August 2014

Pre-wedding stress has started. 24 days until WedFest and the mood in my house is one of constant slight irritation. Nothing major, but it is clear that we are both tense.

If you have organised your own wedding, then you know what I mean. That feeling of constantly being in a slightly bad mood for no reason (the reason of course is wedding stress but you don't KNOW this at the time). This is a similar feeling that many people have on Christmas Day: the expectation that is MUST be a fantastic fun-filled day makes you so stressed that it puts you in a bad mood. Ugh. Time for more booze I reckon. Oh no! Bloody pre-wedding diet. You know, when people say to each other: I can't wait to be your wife/husband. It is not because of love, it is because after the wedding it will all be over and they can go back to their normal diet and booze routine.

Weddings are so stressful. When you fist stat organising it, there is this massive flurry of activity. You get a venue, book a registrar, decide on a guest list, discuss the food etc. And the the waiting starts. Months and weeks of very little to do as time ticks on. And then, when the day is near, it becomes EXTREMELY busy and stressful. We are having a Bring A Dish wedding as we like it low key. This means that we have spent a lot of time (I mean A LOT OF TIME) trying to figure out how much and what we need people to bring. Our worst nightmare is if there is not enough food. But hey, we will just order pizza if there is not enough :-)  But neither of us has wever catered for more than 4 people. So how do you ask 75 people to bring a variety of dishes that will feed everyone? How much potato salad? How many rolls? How much green salad (you know, the stuff that is always left at the end of the night). Hours and hours of agonizing later, we think we have cracked it. We will provide the meat for the BBQ and the guest are asked to bring side dishes etc.

Doing your own food also means the caterer will not help with setting the tables. So we have asked our friends for help on the day. If everyone helps out for a few minutes, everyone can have a good time. Hopefully, instead of it making people feel used, it will make people feel that they have really participated in our wedding and are a really important part of our day.

So now we are in the last three weeks. We are asked to send the registrar our vows, the music and exact timings. Geeeez..... we were not aware this was all so regimented. We were going to kind of wing it on the day. Now we have to stress about that as well. The little things still need to be done. We are getting stressed and tired. Bring on the day of The Wedding. So I can get drunk (a little bit) and wake up next to my lovely new wife.

And then go to lectures at 10am the day after the wedding.  I have organised the perfect wedding on a completely stupid day! Duh.
Keep Reading: "Nearly married: wedding stress."

Back to Cornwall, again

13 August 2014

Cornwall, place of joy and immense sadness. It has a special meaning for me which I don't really understand. JD and I camped in Cornwall in 2007 (JD wrote about this holiday) and I returned to the area in some kind of pilgrimage in August 2011, a few months after JD's death. It was a gut-wrenching and cathartic trip.

But Cornwall is also very very beautiful. And I hated the idea that an entire section of the country was now forever going to be linked with JD, meaning it would be difficult for Fiancee and me to go there without it being all about JD somehow. We all love sharing things and places we love with the people we love. And I think Cornwall is beautiful so I wanted to share that with Fiancee. She agreed that a holiday in Cornwall would be lovely but did not want to be part of some kind of second pilgrimage for me. Fair enough. We decided to go to Cornwall but not stay in the same area or visit (man) of the same places that I had visited with JD. We probably will in the future as St Ives and Tintagel are very beautiful but for Fiancee's first time, we decided not to make things more complicated than they needed to be.

We still went all the way to the Land's End area, where I had been with JD but stuck to the south side, rather than the north. We stayed at the most lovely campsite in Praa Sands. It had only 12 pitches and it was lovely and quiet. The whole holiday was lovely. Yes we went to Penzance where I had been with JD but that was fine. We did not visit any other places I had been to but obviously we drove past many road signs pointing us in the way of St Ives and Perranporth. So JD did come up in conversations but the whole trip did not make me sad. It made me very very happy to be in Cornwall for the sake of it being Cornwall, not as a place that Means Something to me. We only had 5 days in Cornwall so we were pretty busy with dong and seeing things. In fact so busy that I never even used my body board, nor did I get the chance to go crabbing.

Underground at Geevor Tin Mine
We did go to the Porthcurno Telegraph Museum and the Geevor Tin Mine (which was totally awesome and will get another visit from me in the future); we grilled fresh fish on the BBQ; we had cream tea and ate fudge; we caught a tan on a walk from Penzance to Mousehole and had to have the car repatriated on the back of a lorry when the clutch decided it had enough.

Oh, and we bought a nice new tent. And we played at Camp Bestival in Dorset. All in all, it was a great holiday. We did talk about JD once or twice but at no point did it make me sad. Maybe it will if I am back at the actual places I had been with JD but then again, maybe it won't. No point in avoiding them forever.


JD in the new tent in 2007
Me in the new tent in 2014
In an odd note of historical significance..... we impulse-bought a new tent this holiday. In 2007, when JD and I were in Cornwall, I bough a new tent on impulse because the weather was so shitty. This time, I kind of wanted a new tent and then, as if a message from above, the tent poles split. There was my excuse! So at this highly significant trip, I said goodbye to the tent JD and I had bought there, and Fiancee and  spent our holiday in Cornwall in a new tent that we bought together. For some reason that feels nice and circular. Like the closing of yet another chapter.
Keep Reading: "Back to Cornwall, again"

Reflection on intimacy at the end of life

30 June 2014

I work as a health care assistant in the community, looking after people who are at the end of their lives and have chosen to die at home. Doing this work made me decide to start my nursing training as I want to eventually work as a nurse in End of Life care, ideally in the community. Although I am now a nursing student, I still work the odd shift as a HCA in the rapid response team, just to keep in touch with the reason I am doing the nursing training.

Of course at university we have been told all about the Activities of Living by Roper, Tierney and Logan. One of them is Expressing Sexuality/Intimacy. This aspect is often overlooked, especially in End of Life care. Many people find sexuality an uncomfortable subject because they focus on the SEXuality. But expressing sexuality also involves intimacy with your partner. Holding, kissing, sleeping together, hugging. All of those things are part of sexuality.

Today I looked after a young man* who is dying of cancer. His hospital bed has been set up in the bedroom next to his double bed where his wife sleeps. Imagine sleeping with your partner in one bed for years and then when you most need to be close, when you are going to lose the person you love, you can not lie with them, hold them and feel them. You can only look at them at night, as they sleep in a cold, noisy hospital bed a couple of feet away from you.

As nurses, we can sometimes be too focused on making the patient comfortable. Once we have achieved this, we are happy. Sometimes though, physical comfort is less important to a patient than emotional comfort. I asked the patient if he would like to be in bed with his wife for a while. In his own bed, with his own wife. The young man said he was too tired for it at the moment but his eyes lit up. He had not realised this was possible. Nor had his wife who had tears in her eyes when I explained it would be perfectly possible to transfer her husband for an hour and then, with our help, transfer him back in to his hospital bed again. To give them the chance of feeling like husband and wife again for a precious hour.

It is easy to forget how important such small things can be to a patient and their family. Yes a hospital bed with an alternating air mattress is of course what the patient needs. But does that mean the patient must stay in that bed 24/7? What is the ultimate aim of enabling people to die in their own home: to feel surrounded by those they love. And what better way to do this than to enable them to have physical intimacy with the person they have chosen to share their life with? Sometimes we have to think a little outside the box.

Today's experience also demonstrated how my personal experience is shaping my view of the kind of nurse I am becoming. When my partner was in her hospital bed in my bedroom, it was one of the nurses who suggested I should spend some time with my partner in our bed. I did not know this was possible. I thought I could only have a cuddle by squeezing myself on to the hospital bed and trying to sleep like that. But the nurse said that was ridiculous and together (using correct manual handling techniques and slide sheets, I'll have you know), we moved my partner on to our double bed.  I nestled myself in to the crook of her arm as she slept on her back. We stayed like that for a couple of hours. Then I called the rapid response nurse and together, we moved my partner back on to the hospital bed. I remember how that felt. Not just the time we spent together in bed, but also the fact that the nurse understood that this mattered. The nurse understood we were first and foremost a couple. Two people who shared everything.

I had forgotten about that experience until today. And when I saw the look on the patient's face, I remembered how important it was for me back then. And how important it was for them today. In those small, short moments, I think that maybe, just maybe, all that pain and suffering will end up making somebody else's death a little bit better. What a fantastic legacy to leave.

Here is a lovely article on intimacy at the end of life.

* Details have been changed to maintain confidentiality

Keep Reading: "Reflection on intimacy at the end of life"

Grief strikes again

20 June 2014

And just like that, I am on my sofa, looking at my computer screen, crying my eyes out...What happened?  It is 3 years since JD died and I think I am pretty well 'done' with grieving. I thought I no longer needed to visit a place I have been with JD, before I can go back there with someone else without getting incredibly sad and spending all my time thinking about JD.
 
I have spent a week in Normandy with JD in 2009 (see these blog posts). She had finished her course of radiotherapy and her hair had sort of grown back. My parents drove all the way from Holland to come and see us for a day. After a week or so, we drove further along the coast and ended up camping in a place called Malestroit in Brittany. Lovely campsite. We had a lovely time. But it was also an emotionally difficult time. I was constantly on alert, looking after JD, making sure she was OK, in charge of everything as she could not remember things very well etc. It was all very poignant. The last time we had a holiday before being told there wasn't really much they could do about her brain tumour anymore.

In the past few years, I have found that in order for me to be able to visit 'poignant places', without bursting in to tears all the time, I need to visit them and put JD to rest there. If that makes sense. When I went to Cornwall in 2011, 3 months after JD died, I wailed, howled and cried.And when I came home, I felt at peace with Cornwall. I drove through Buxton in the Peak District, to remind me of our visit in April 2009. It helped me 'reclaim' the place and I had no problem being in the Peak District with Fiancee in 2012. My theory is simply that once I have 'done' a place without JD, I can see the place on its own again. It is no longer ONLY a place where I went with JD. It goes back to being a place in its own right. Some places have very emotional memories and will therefore need a visit before I can go back there with anyone else and enjoy it. Other places are fine and can be visited right away. I may feel some sadness but nothing too big. Nothing that Fiancee says she can not deal with.

So, what does this have to do with Fiancee and getting married? We thought it would be nice for us to go away camping for a week or so in August. It has been a long year for me at university and with the wedding coming up, we can both do with a week of just sitting in front of a tent, reading books and doing nothing. Sure, I thought. How about Normandy? Not too far away and still very much France. Let me go and look for some nice campsites, I said. I thought it would be fine. After all, I could just pick a different campsite from the ones JD and I had been to.....

Wrong. As I was looking at a map of the area, I spotted Fecamp, the town where JD and I pitched out tent on our first night. And suddenly I burst in to tear. Not the silent ones that delicately run down your cheeks. No. Proper crying with noise and throwing head back and all. WTF? Why? Why such a strong reaction? I felt actual fear at the thought of going back to Normandy. The idea of crossing the Pont de Normandie, the place I stood with my folks and JD; walking along the gorgeous harbour of Honfleur....when I remember the day spent there with my folks and JD, having a lovely lunch. Actual fear.

Even the thought that I would not have to go and visit these places just because we would be in Normandy did not help me. Because I felt that if I was in Normandy, I would have to go and put these places to rest, to reclaim them for me. And that felt like a terrible thing to do to Fiancee, only a couple of weeks before our wedding. So I told her I could not do it. That we may have to go to Cornwall or another place that I am perfectly happy to go to.  I told her I may need to spend a few days in Normandy on my own at some point. Just to even make it possible for me to drive those roads again, to see those places, to shake off the overwhelming link with JD.

Grief is a bitch. It strikes when you think it is all done and dusted.
Keep Reading: "Grief strikes again"

Three years came and went

10 June 2014

Last month, on the 30th of May, it was three years since Jane died. As every year, I was feeling depressed in the run up to The Date. It is strange how that works because I always feel like it is not particularly bothering me. And yet I always seem to have a sense of depression that starts the first week of May and abruptly ends on the 31st.  There is always something that seems to make me depressed. University work, or, this year, a placement that was incredibly difficult and made me want to quite the course at times. I feel low and sad but not about anything in particular. Nothing especially Jane-related makes me weepy or blue. It is just a month of feeling grey: nothing much interests me, no major emotions, good or bad. Towards the end of the month I always think: and then on top of this, it is nearly The Date.

This year, I realised it is the other way around. What happens is that my mental immune system simply gets low in May. Even if I am not particularly thinking about Jane and the things that happened 3 years ago, I guess the month of May just will always bring a blanket of grey to my feelings. So things that I would normally shake off become a lot more difficult to deal with in May. The 30th of May does not mark the crescendo of these feelings. It marks the cause. Subconsciously I must just be spending the month thinking about The Date that is rapidly approaching. And when The Date arrives, it is all over. Things go back to normal.

So much so that when my dad called on June 3rd (my wedding day) to tell me he and mum were thinking about me on this special day, I replied: what special day? In my defence, I had come off shift about 2 minutes before and was walking through the hospital corridor so I had no time to think about Jane and what date it was. My first thought was: oh, he must mean today was the day of her funeral. And that date is not a date that holds a particular emotion for me. So I dismissively said: Nah, this day is not a problem. My dad sounded a bit surprised by this and said: I guess we all deal with this in our own way. It wasn't until a week later that I suddenly thought: OH SHIT! That was our wedding day he was referring to, not the date of the funeral (which was actually on the 8th June). No wonder he was a bit surprised by my fairly blunt: Why would this day be especially difficult?

The first year, each day held its own significance. I remembered exactly what we did and when. So the 19th May Jane went in to the hospice, she died on  30th of May, our wedding day was 3rd June and then the funeral on 8th June all were reasons for me to be especially sad. But as time has gone on, it seems that all the sadness is focused on May 30th. Everything comes together neatly on one single date.  I think that this realisation will help me next year. I will help me not to think I am suffering from major depression. It will help me to accept that I should probably not make Big Life Choices in May. It will help me to accept that in May, I will be sad about Jane, even if there is nothing in particular that is upsetting me. It will help me to say to Fiancee: "I don't know how sad I am going to be but I will most likely be either extra needy or more distant this month. Please stick around, it will be fine once it is June."

Like a flu jab, I can protect myself a bit better. There is still a chance that I will be sad for the whole month, but knowing why will help me to feel less surprised about it. And if I have learned anything from the whole Widow Thing, is that the best way to deal with emotions is not to push them away but to open up my arms, stick out my chest and shout: Here I am!! Hit me with it.
Keep Reading: "Three years came and went"

Recording consultations with your doctor should be welcomed

22 May 2014

On the forum of the British Medical Journal website, there is a discussion about the right a patient has or does not have to make recordings of their consultations. It is interesting to read the responses. Interesting and disappointing because too many contributors have a defensive attitude and wonder why a patient would want to record. They suggest patients might use the recordings against them later or want to record them just to catch them out. Surely they can simply take notes as a record of the conversations.  It does not seem to occur to these posters that even note-taking means patients only write down what they THINK they have heard and understood. Just because they write it down does not mean they write down the right thing.
Patients are not adversaries. They are partners in their own treatment. Why the hostility? Do doctors forget that patients might need to listen to their words a couple of times, perhaps with a dictionary at hand, to fully understand what they have been told? (This study demonstrated that patients forget between 40-80% of what they are told and that even the things they do remember is often inaccurate!!)

I do not see why doctors would have an issue with this. It happens so often that, especially in Bad News Conversations, patients only hear half of what is said and forget the rest. This can lead to a lot more problems later when patients might claim they were never told something or where they have misinterpreted what the doctor said. As a nursing student who has extensive experience as a Health Care Assistant in End of Life care, it happens far too often that nurses are asked by patients to repeat and explain what the consultant has just told them.

Doctor says: "This treatment is palliative but we should be able to stop the tumour from growing further."

Patient hears and writes down: Treatment will stop tumour.

For most lay-people, this will read as: this treatment will stop the tumour from growing which means it will kill the tumour which means this treatment might actually rid me of this tumour.

Doctors might think that is a silly thing to conclude and that they were surely VERY clear in not saying the treatment was curative. But how much do we expect patients to know about treatments? Curative? Palliative? Health Care Professionals (HCP) should ALWAYS assume (in a non-patronising way!!) that the patient has not understood what they have said and ask them to repeat in their own words what you have told them. I also think that every consultation should start with a recap from the last one by asking the patient to explain in their own words what they remember form the previous consultation. So that when you build on what you THINK was understood, you don't simply go further down a path of total misunderstanding.
If we care about our patients, surely the worst thing we could do is send them in to a treatment they think will cure them when in fact, they might endure terrible side effects for something that won't?

I simply do not see the problem in people making audio recordings of the conversations. For the life of me, I cannot imagine what it is that you could be saying as a HCP to a patient that you do not wish them to be able to hear again? It is not like medical notes where the communication is aimed at other HCPs. There indeed might be things you would prefer a patient not to see (although you should always be mindful that patients might request to see their notes!).

If your first response is: Why should a patient want to record me talking? Then your focus is not on the patient but on yourself. If a patient wants to record your conversation, it might be because last time you spoke, they did not understand. Or last time you spoke, they had so many questions. Or last time you spoke, there was too much information for them to write down. Or last time you spoke, the news was so bad, they were unable to take it in. In all these cases, it is up to the HCP to improve our communication skills and ensure the patient leaves with a full understanding of what has been discussed.

Remember that in a HCP - Patient relationship, the HCP ALWAYS has the advantage of knowing more. Patients feel this. They know they will only ever know what you tell them. You decide what they get to know so the least you can do is to allow the patient to actually understand the things you let them know. It is up to you to make sure they fully understand. And if it helps a patient to understand you better if they can record the conversation and go over it again at their own leisure, then so be it. Better informed patients leads to better health outcomes.

From personal experience, my wife had a brain tumour and the Neuro Oncologist was going to explain all the treatment options and prognosis and so on. I asked politely if I could record the conversation (just sound) so we could listen again at home afterwards to make sure we were able to take it all in (my wife was no longer of the mental capacity to take things in so it was all down to me to listen and remember). He refused in a less than polite way. The news was terrible and after the words "palliative radiotherapy" we heard nothing else that was said. I tried to take notes but my brain was numb. Over the next few months, the consultant kept saying that things had been discussed in this particular meeting but I had no recollection of it. We thought there might still be chance of a cure. When it was over, the MRI scans revealed there had never really been that chance. I must have misunderstood him when he spoke to us. But I have no way of checking that. I was devastated. This could have been avoided had I recorded the conversation. Then I would have understood and remembered.

I am not saying he was lying. All I am saying is that consultants should be aware of how patients interpret what they say and how a recording can help clarify things. The arrogant refusal of consultants to let patients record conversations shows a lack of patient-centred care. The first thought should not be: they might use it against me. It should be: It might help the patient to understand me better so we can come to a more collaborative treatment.

Why not record the conversation and let both parties have a copy for their records? This safeguards against patient editing the recordings and making false claims.

I hate to say this but could this be an example of the difference between the focus of medical education and nursing education? Between the Medical Model and the Holistic Model? Just throwing it out there....

P.S. Legally, patients are allowed to record their consultations. However, if you can not be open about it to your doctor and need to do it on the sly, you may want to reconsider your relationship with your doctor...
Keep Reading: "Recording consultations with your doctor should be welcomed"

Charity trips to Fiji? Patronising rubbish.

16 May 2014

In the foyer of the library at University today, I spotted a young lady who was selling cupcakes. Would I buy one. "It's for charity", she added, looking at me hopefully.

Charity? I see. I asked her what she was going to do. "Teach English to children in a village in Fiji and help them build water tanks and paint their school building." No, she wasn't a qualified English teacher, although she did of course have her GCSEs and stuff. Her face fell when I asked her what, then, made her qualified to teach English to other children? She had no answer.

I continued to ask questions about what she would be doing there. After all, she was asking for my money to support her work. I would be happy to give her cash if I agreed with what she was going to do. She said she would be building water tanks so the village had clean water. No, the money raised for not for her because she had already paid for her ticket. The money she was raising was going to the charity.

I suddenly felt really annoyed with her lack of honesty. Because the bottom of her fundraising paper had an official message from the organiser of the whole thing, Volunteer Eco Students Abroad (VESA). It said that the money the volunteer was raising was NOT going to the charity but would be used by the volunteer to fund the cost of their program. I asked the girl again what the money was for. She said the whole thing costs £1200 + flights. She had paid for her flight and was fundraising for the £1200. I countered therefore that the money was not going to charity but it was going to her own pocket to help her pay for this trip. Again, she got flustered. The money was needed by the charity in advance so they could buy equipment to help them teach and build water tanks and so on.

Having sufficiently upset her, I bought a cupcake. Not because I support her 'charity work', but because I felt sorry for her. She was clearly upset by my questioning.

But why should she be upset? Shouldn't people think about what it is they are going to do on these trips? How patronising is it to think that a young person with no experience is not good enough to teach kids in the West, but perfectly fine to teach kids in poor countries? Furthermore, after she is done teaching for a week and leaves, who will continue teaching these children? A real teacher? In which case she was never needed there. Or yet another young person on a very expensive trip who is looking to feel good about themselves by helping 'poor people'? How does that in any way secure a quality education for the children there? Not to mention the question if learning English is the most important thing for children in a very remote village. Some of these village are so remote that they are only reachable by kayak so not much chance of them needing English, other than to be able to speak to those lovely gullible White People who come to have an Authentic Experience.....Building classrooms is very nice. But I feel uneasy about pictures of children sitting at desks that carry the name of the charity organisation. God forbid they ever forget how they got so lucky to even have these desks. Surely the point of charity is that you do it with no strings attached. Not even the requirement to let everyone else know that it was YOU who was so incredibly generous? It was all very annoying that the girl was clearly unprepared for anyone questioning her thoughts behind the whole thing. So convinced was she that surely all charity is good.

But most importantly, she failed to mention (in fact she blatantly lied about it), that the trip would be 5 days of 'charity work' and then 7 days of sailing around the Pacific coral reefs, learning to scuba dive and lie on pristine white beaches. I am quite sure THAT is what the £1200 is for. Not to buy materials for a water tank in a remote village in Fiji.

Now I don't mind being asked to pay for someone's holiday. I think it is quite daring to do that. But at least have the decency to be honest about it.
Keep Reading: "Charity trips to Fiji? Patronising rubbish."

International Nurses' Day 2014 (and a drag queen at Eurovision)

12 May 2014

Congratulations to me. Today is International Nurses' Day. A day to celebrate all the good things nurses do. And since I am nearly a nurse, i am going to pat myself on the back already.

I am currently stressed out of my little skull trying to produce a 5000-word literature review on a public health topic. My topic has gone through various incarnations:

1) Are lesbians at increased risk of breast cancer and should they be more aware of this?
2) What are attitudes towards sexually transmitted infections among women who have sex with women and how can this group be reached with public health campaigns
3) Sexually transmitted diseases: women's risk perceptions and how this leads to behaviour modification.

Currently I am settling for "Sexually Transmitted Infections in the over-45s: why are they on the rise and why does the Safe Sex message not reach this group."

Hopefully I can write something that can at least be handed in before the deadline. I am at that time of the year where I am less and less interested in the quality of the work and more and more in just passing the year. This saddens me but I realise this is normal in any student and I guess nursing students are no different. Since March, I have been working full time at my placement. It finishes the first week of June. That same week we are due a 5000-word literature review and a group health care debate about assisted dying (in the style of the Cambridge Debating Society). 10 days later, we are due to hand in a 2000-word care plan. Not sure why this all had to be done at the same time as working full time at placement but it certainly is stressful. Apparently it is related to the structure of the academic year and the fact that a nursing degree is 45 weeks per year whereas most other degrees are only 32 weeks and we have to fit in with the regular examination board's time tables.

Oh well, it focuses the mind I guess. Never to early to get used to the stress we will be under once we actually qualify ;-)

On the positive side, today  got news that I have been selected to be a Care Maker! What is a Care Maker I hear you ask. Well, let me explain. As part of the drive to improve patient care, the NHS and universities are pushing hard to make sure all health care professionals adhere to The 6Cs in patient care. These are:

Care
Compassion
Competence
Communication
Courage
Committment

In order to push these values forward, a few thousand 6C Ambassadors have been recruited. These Care Makers will attend conferences and spread the message about the 6Cs. They will, hopefully, demonstrate to other people how easy it is to implement these core values of good care in every day practice. For more information about the Care Makers and the 6Cs, have a look at the Care Makers website. I am proud to have been chosen as a Care Maker (and happy that I shall get a nice new hoody and a t-shirt. Free clothes are always good for a student!).

And on a totally unrelated note.....can I just say how AWESOME this year's Eurovision Song Contest was. As a Dutch lady, I am of course very proud of the fantastic Common Linnets with their gorgeous country song Calm after the Storm. I am currently listening to their entire album and it is bloody amazing. Americana from Holland that can compete with anything Nashville can churn out.


Oh yeah, and there was also someone with a beard I think. Can't remember what that was all about. Something with a Bond-theme song or something.

Keep Reading: "International Nurses' Day 2014 (and a drag queen at Eurovision)"

Supernumerary? I beg to differ!

28 March 2014

When you start your first placement, mentors and lecturers stress over and over again that you are not to be counted in the staff numbers on your placement and that you must not be sucked in to becoming an extra body on days of staff shortage. You should of course help out and patient safety always overrides your learning but you should never be denied a learning opportunity just because the ward is busy and cannot do without your help.

Simple, right?

Not so. Most nursing students want to be helpful. We want to be liked and seen as hard working. Wards are almost always chronically understaffed. And who could say No when a health care assistant asks you to wash a few patients in the morning whilst your mentor is writing notes or preparing paperwork for a discharge. After all, you would only be sitting next to your mentor when you could be on the ward helping out with what most people think of as 'real nursing work'. And so, all too often, students say yes to such requests. Or we offer to help out before we are asked, thus creating a rod for our own backs. And we miss out on learning how to do discharge paperwork. But surely a patient is more important than paperwork?

Yesterday I was called to A&E by a trauma nurse who wanted to show me a particular injury on a patient who had just come in. He would be transferred to our ward after assessment so the nurse thought it would be good for me to see the entire patient journey from A&E admission to surgery to ward and eventual discharge. I left the ward to go to A&E and see the patient. When I returned 15 minutes later, I mentioned to one of the HCAs that I was hoping to go to theatre later on to see the patient's wounds being sutured and then bring him back to the ward. Her response: "Not today, you won't. We are too busy as we are an HCA short." I laughed it off and said in a jokey tone of voice: "I shall be reporting this to the university as you know we are not supposed to be denied learning opportunities just because the ward is under-staffed." The HCA laughed and encouraged me to do so in the hope it would demonstrate once again how understaffed the ward was. I was taken aback and did not know what to say to that. What should I do? Should I go anyway, knowing she said they really could not miss my pair of hands? I knew that leaving would mean a patient might have to wait a long time before having their soiled sheets changed. Or they might not get their afternoon cup of tea. Was my learning opportunity worth that? Of course you should help the patient if this is a one-off. But what if this pressure is structural?

How can they ask a nursing student, who gets compassion drilled in to her from day one, to be selfish and say: sorry but I need to put my learning needs first, I am here to train to be a nurse, not to be used as an HCA? Not every student is lucky enough to work closely with their mentor every hour of their placement and thus being protected somewhat from this pressure. I mentioned the comment to my mentor later on and she was not happy about it, saying she would rather send a student off to study in the hospital library than have them used as an extra body to make up for staffing shortages. So I felt better about it, thinking my mentor would fight my battle for me and tell the HCAs not to pressure me in to missing out on learning opportunities. Because I am simply not strong enough to do it. I simply cannot watch a patient in a soiled bed, knowing I could help if only I did not insist on learning how to write up discharge notes. On the other hand, I know that if I do that every time, I will end my degree as an excellent HCA but a rubbish nurse.

In the end, the patient did not go to surgery as it was too late in the day. He arrived on the ward straight from A&E and would have surgery the next day, when I was not on shift. I felt relieved because it meant I did not have to make myself unpopular with the HCAs by leaving the ward. However, it still made me feel uneasy. This issue has bothered me from day 1 on my first placement. How can we guarantee nursing students get a full learning opportunity when the pressure on them to help out on the ward is so great that it interferes with their learning? Especially at a time when more and more experienced nurses are leaving the profession, leaving relatively newly qualified nurses to fill the gaps, how can we ensure these newly qualified nurses have had enough suitable placement experience? I don't know the answer to this and I would love to hear from other students how they handle this pressure without feeling the burden of guilt when they walk past a soiled patient in order to learn to write discharge notes…

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This blog first appeared, in a slightly different version, as a guest blog on Britain's Nurses.
Keep Reading: "Supernumerary? I beg to differ!"

How the hell do you revise pathophysiology with ADHD?

01 March 2014

I am a clever girl. I am also unable to wrap my head around the concept of revision. I don't know if this is me being weird or if this is an ADHD-related issue or what but I am seriously struggling.I know other people are struggling too and I am not trying to make this sound like I am worse off than they are. Just thought I should get that in first.

From when I was a kid, my brain analyses what I am trying to do and says: OK, I get it, you can do something else now. This does not mean I REMEMBER the thing I have just read but my brain says: I read that and understood it, let's move on. And from that moment on, I am unable to concentrate on that topic because my brain is bored, even though my memory has not yet absorbed the info and committed it to memory, ready for regurgitation in the exam. Every time I try to revise the topic, my brain goes: "Yeah yeah, you know this already, do something else, something I don't know yet." It is as if my brain says: I understand the concept, so I don't need to know the content.

Example: in this exam I will probably be asked to compare and contrast Diabetic Keto Acidosis (DKA) and Hyperosmolar Hyperglycaemic State (HHS). I have read the differences and similarities. I understand why things happen when I read my book, I nod and think: yep, seems good. I close my book and try to answer the exam question and I am utterly lost. I can not list signs and symptoms, nothing but the very very basics. So I open my books again, read the chapter again and my brain goes: "Why are you reading this again, you just read this and you already understand it. I AM BOOOOOOOOORRRRREEEEEEED."

I have read all the exam topics. I understand all of them. But hardly remember any of it.

In true ADHD-style, I try to trick my brain in to thinking I am doing something new. I do this by trying to find a new way of revision. That way, my brain will pay attention for a bit because it is a new way of absorbing information. So I started the revision for my pathophysiology exam by printing off all the lecture slides and all my lectures notes. For a few days I read and read and took notes. Then I could feel my brain going: "Lalalalaalaaaa.....I'm not listening anymore." I tried for a couple more days but nothing went in.

So I thought I might try oral revision: no writing, just talking with fellow students about the material. That worked for a couple of days.

Then I thought: how about group-mindmapping? I got a few students interested, we went into a classroom and wrote all over the whiteboards, made mind maps, lectured each other on things we were sure about. It worked really well. So well that different students showed up each time.

After 4 sessions, my brain said: "Lalaalaalaaa......Why are you doing this? You know all this. Move on!"

So this morning, I decided I would answer questions from previous exams and compare my answers with answers from a few fellow students. We arrived in the library, set a timer for 10 minutes and picked a random question:

Compare and contrast signs and symptoms of chronic bronchitis and emphysema.

I KNOW the answer to this. Or at least, I UNDERSTAND the answer to this. Unfortunately, when we all compared our answers, my answer was vague, repetitive and quite shallow. I did not mention hypercapnia, hypoxia, digital clubbing, cor pulmonale...nothing. My answer wasn't wrong. It just wasn't enough. I could not reason it through. I could not remember. These 2 diseases are quite similar and quite often people have signs & symptoms of both. So how the heck can I differentiate between the two if I don't understand the pathophysiology behind each of the symptoms. Why is someone with Chronic Bronchitis more hypercapnic than someone with Emphysema? They are both struggling for breath so why the different outcomes?

Part of it is probably nerves. If I had 20 minutes for each question, here is how I wold be able to answer the questions:

1) Think of the disease
2) What is the first thing that happens? Which process goes wrong, which enzyme causes that, etc.
3) What does this lead to (i.e. what sign or symptom does this cause?) And WHY?
4) What happens after that & what signs/symptom does THAT cause? And WHY?
5) And so on.... And WHY?

That way, I will 'walk through' the illness and logically come up with many of the answers required.

Unfortunately I have only 10 minutes per question and so what I need to be able to do is:

1) Give a list of signs and symptoms, the order does not matter as long as you list enough of them to pass! Also, this is not a patho-question so just list signs and symptoms and you do not need to explain why things happen and why this symptom occurs. GO!

And I just can't do that. I just do not understand how to do that.

All of this obviously on top of the exam stress everyone feels and the ADHD-related inability to plan or remain concentrated for longer than 30 seconds.

This post may sound really self-indulgent and navel-gazing. Like I am saying: I have it worse than you, feel more sorry for me. It is not meant like that. I am just at the end of my tether with this. Because there are only so many different methods of revision I can come up with. And for this exam alone, I have already tried 5. What if I can not invent any more for the next exam. Or, God forbid, the re-sit of this one?


PS: I only started writing this blog post because I was looking online for tips and hints on revising when having ADHD. It is now an hour later, I have not revised yet and also not actually looked for any of those tips....I got distracted. Ugh.
Keep Reading: "How the hell do you revise pathophysiology with ADHD?"

A crisis of faith

27 January 2014

I wanted to be a nurse when I was 18. For all kinds of reasons, I went on to do a degree in broadcast journalism instead. Then Jane's illness happened and it spurred me on to finally get this nursing degree done. I was going to use my experience for a good thing. I would become a palliative care nurse and make things better for other dying people. That was my motivation.

Or was it? Was my motivation perhaps more selfish than that? Working as a health care assistant in palliative care is nice. It requires lots of care and empathy. Helping people with washing and dressing etc can really help them have a 'better death. I never questioned that being a palliative care nurse would merely mean I could care for people even better. But now that I am in nursing school, I am beginning to doubt my motivation.

I spend a lot of my time looking t things related to brain tumours. Palliative care for young cancer patients, radiotherapy doses for Astrocytomas, recommended surgical interventions for frontal-lobe Astrocytomas, use of different chemotherapy drugs in brain tumours and their relative efficacy.... that kind of stuff. My assignments are often linked to my own experience and how I use that in practice. All I do seems related to it. When lecturers say: pick a topic for your assignment that you care about... generally, brain tumours or cancer and young people are the first things to pop in to my head. Not that I go to the library for hours especially to look stuff up, but when I am there, I will often lose track of what I was doing because I end up reading about brain tumour-related things.

And I am not sure that is the right motivation to sustain a nursing career. Surely this means I will suffer burn out sometime soon? Am I only doing this degree so that I can look back at Jane's treatment and finally understand what was done, the medication she was given, how her symptoms progressed, how her death was essentially inevitable from the day she was diagnosed etc. I don't actually WANT to spend the rest of my life linking everything I do to Jane and her illness. Which is exactly what would happen if  become a palliative care nurse. My very existence would be defined, every day, by how I want to either improve on the care Jane got, or improve the bad parts of it. I will constantly want to tell people: I understand, I have gone through the same thing. Which is inappropriate almost all of the time. The question is why do I feel I want to do that? Is it because I need to feel connected to other people in similar situations or is it because I want to pass on my wisdom? Am I looking for something or am I looking for a way to give something back? I would like to think it is the latter but deep down I think I know it isn't.

It is surely not a good idea to think about it in such terms. So I am thinking more and more that I should focus on something else. A different specialty perhaps. And forget about palliative nursing completely, at least for a few years. Until I am ready to do it for the right reasons, armed with the right amount of self-awareness and the skills to see when I am overstepping professional boundaries, both towards the patient and towards myself.

Cardiology sounds interesting.


Keep Reading: "A crisis of faith"

Feeling guilty

07 January 2014

How can you miss the love you lost and still say that you are genuinely happy with the one you have now? Surely you are lying to yourself and really not 'over' it if you still sometimes feel: I wish I could talk to X about this because he/she would understand exactly what I mean? Isn't that the same as saying your new love isn't good enough? I cannot quite square missing someone with loving someone else. Surely these two things are mutually exclusive?

If I say I miss JD because she would have been perfect for a discussion on research methodology, does that mean I am saying that Fiancee is not good enough to do that with? If I say I miss JD because we used to go skiing together, am I saying Fiancee is not good enough because she doesn't ski? Or am I just saying: I miss JD because of these few things, nothing more, nothing less, it has no bearing on what I have with Fiancee? Of course I think it is the latter. After all, the reverse is true too: when I say that I love making music with my very talented Fiancee, I am not saying she is better than JD, with whom I did nothing musically. I can't conveniently say it works one way because I revel in feeling guilty, but not the other.

But what am I basing that conclusion on? Maybe other people who know more about loss and grief will say: If you are feeling like this after 3 years, then you are not ready for a new relationship. I don't know. After nearly 3 years I still have this need for other people to tell me I am doing 'it' right. (Fiancee's note: You totally are, dear.)

I think Fiancee and I are ticking along quite nicely. We talk about it. We make up the rules as we go along. She seems to be coping extremely well with these random episodes of self-doubt. But I feel very guilty about these kinds of thoughts. I have a tendency to just throw things out there without thinking them through first (this blog is a case in point!). And then as I think them over out loud, I filter my thoughts down to 'what I really mean'. But by then I may have already brought up some rather painful thoughts and suggestions. Which I then have to explain as being incomplete and therefore not really applicable to her or to us. Doing this, I rely on her ability to 'forget' the things I later on dismiss as not true. I know that if it was me, I would not be able to forget. It would nag in the back of my mind. So I assume that it must nag Fiancee as well. And since I don't want her to worry about things that I end up dismissing, I sometimes choose not to talk about something that is on my mind when it related to JD.

Maybe what I am saying is that I just feel guilty towards Fiancee every time I feel I am missing JD. As if missing JD is directly related to how much I love Fiancee.

I know that is not the case of course. I don't miss JD on a daily basis as a presence in my life. I don't miss her as my partner. To me, that would signify that I would not be ready to be with someone else. I miss JD usually at very specific times, about something very specific that we used to do, when I need to answer to a specific question about something she was good at, or when I am at a very specific place we have been. I guess I miss her as a friend, as a person.

Yet I still don't understand what place my past has in my current life. Or how to give it a place. It bugs me.
Keep Reading: "Feeling guilty"

A new home for us

06 January 2014

Soooo......after months working with a team of District Nurses as part of my degree course, I have today returned to university. And the exciting topic to start off the year is Research and Research Methodology. Yes yes, I hear you groan. It made me wish I could chat it over with JD. She would be an invaluable resource. I mean, the subject of studying research itself seems pretty navel-gazing. But in actual fact it was really interesting. It is just such a shame I will have to actually write a massive essay at the end of all that lovely research. Maybe I should get an assistant to do the hard work for me.

Speaking of assistant.... Girlfriend is currently next to me on the sofa hemming our new curtains. You see, we were cheapskates and bought the curtains that were 3cm too short for our windows because they were £20 cheaper. So now Girlfriend (that really should be Fiancee by now) has taking the hems out and is now making a new hem. Ain't she clever...

And that, Dear Reader, is why I am marrying her.

So yes, our new house. We moved in on a Saturday and went on a ferry to Holland on a Monday to 'do' Christmas with my parents. So no real stress at all there. The Monday on the ferry was awesome. It was on Stormy Monday. Only a few hours after we sailed, they closed the port of Dover due to the severe weather. Our crossing was tumultuous but kinda awesome. A nice way to introduce Fiancee to ferry travel.

Then there was Christmas and then we came home. To FLEAS in our house. A man came and sprayed it. And then we put our things in to the house. And now it looks like this:


Which I think is pretty awesome. The massive map is a Zoological Map of the World, dated somewhere around World War I. We got it from the DIY shop and I had to rent a van to get it home. It was too big for the car. There are still a few small things to do but we are getting there. It certainly feels like our home. It is quite something to get used to, going from a small 1-bedroom flat to a 2-bed house. If nothing else, we have to shout so LOUD to hear each other when we are in different rooms.
The biggest room has been turned in to our office. My desk is there and Fiancee has her little home studio set-up. The house is pretty cold as the wind blows through the gaps in the floor boards but I will be sealing these in a couple of weeks.

Yeah, I am happy with the house. Now we have a wedding to organise. Better get on with it.












Keep Reading: "A new home for us"