14th Aug2011

Helping the Hospice

by Dutchcloggie

Text BEAN83 £5 to 70070 Grieving is tedious. It has been a little more than 2 months since Jane died and it is getting harder every day. The first few weeks I was numb. Now I am beginning to feel again and what I am feeling is not fun.

It is extremely cruel that someone as smart as Jane found her ability to think and study affected by a brain tumour. Because of its location in the brain, it mainly affected her memory, personality, ability to process information and give feedback on things she was asked. Still, between her diagnosis in 2005 and her death, aged 27, in 2011, Jane got herself a BSc, an MSc and nearly a PhD from Warwick University.

I get huge comfort from doing things that are related to Jane. Be it writing a blog about her or looking through pictures. I want to use this in a positive way. So I am raising money for the Cynthia Spencer Hospice.

The Cynthia Spencer Hospice cared for Jane twice. In October 2010, whilst I moved us into a new flat that enabled Jane to stay at home until the end, the Hospice looked after Jane and sorted out symptom control. After she came home, we had 7 wonderful months together in which we made a few final trips. 
 
Then, when the end was close, Jane returned to Cynthia Spencer Hospice for her final 10 days. The staff are fantastic and made me feel so much better in the circumstances.

I have decided to back to university next year so that I can become a palliative care nurse and make sure others get the same fantastic care when they need it most.

You don’t have to do something so drastic. You can just give money!
 
The Cynthia Spencer Hospice is NHS-funded but they need additional money from charity to pay for extra nurses and other things the NHS does not pay for.
 
I am hoping to do a number of things to raise money for the hospice. Every penny helps so even if you just donate your small change to this, it would be brilliant.

Please visit my fundraising page at http://justgiving.com/Bouncybean.

Alternatively, get your mobile phone and text BEAN83 £5 to 70070 to donate £5. You can obviously change the amount to anything up to £10. To donate more than £10, or if you are donating from abroad, go to the JustGiving page.

03rd Jun2011

One last look

by Dutchcloggie
Jane flying a kite in Cornwall

Jane flying our kite in Cornwall in July 2007

I went to see Jane yesterday. She looks peaceful but I felt uncomfortable and stayed only 30 seconds. I saw her on Monday in the hospice of course but then she was Jane who is dead. Yesterday, she seemed to be a dead body that used to be Jane. Big, big difference.

I shuffled around the table but I could not bring myself to look at her face. I wanted to but I was afraid I would be unable to see her in any other way in my memory. And so my memories of her were more important than my immediate emotions. I decided that the memories will be with me forever so if they were somehow spoiled by the need to take once last look, I would forever regret it.

So I closed the door and left her for the very last time.

02nd Jun2011

In the end…

by Dutchcloggie

…it was peaceful. On Sunday morning, JD had trouble breathing and her skin turned a strange shade of blue, nearly purple. The nurses said this was a sign death was a mere hours away. JD’s mother came and went. And the waiting continued. Every once so often, JD’s breathing changed, became more shallow, more like snoring, then less like snoring. Her face returned to the normal pink colour, perhaps a little more grey than normal.

Our friends R&K arrived in the afternoon, all set up for the long wait. Ipads, beer, food, crisps. The hospice staff were fantastic in leaving us alone as much as possible whilst still checking JD was ok. As the day turned in to night, JD’s breathing changed a number of times. Looking back, I think she died a little every time that happened.

Around 10.30, I lifted JD’s left eyelid and saw her pupil had blown. And half an hour later, so did her right one. I knew she was no longer with us then. We held her hand, I crawled onto the bed and held her. And waited.

At 2am, R&K went home to sleep as JD’s breathing seemed very regular. I slept on the camping bed next to JD. The silence woke me up at 7. No sound of breathing. As I put my head on JD’s chest, I just caught her last few heartbeats. I got the nurses who confirmed JD was gone. Then they left me alone for a while and I cried. Relief. Pain. Anger. Sadness. Loss. Emptiness. Numbness. All of that.

They asked if I wanted to help wash JD but I felt unable to do that. I called JD’s mother, my parents and R&K came back to support me through the morning. It was all very calm & peaceful. I cried a bit more and we cleared out the room. After saying a final goodbye to JD, we went for a massive breakfast.

And so began my life as a widow.

Now what?

30th May2011

It’s done

by Dutchcloggie

Jane passed away at 7 this morning. She went in her sleep whilst I held her hand. Goodbye my angel.

29th May2011

Waiting for death

by Dutchcloggie

This morning, around 9.30, JD stopped breathing and turned purple. So I thought the end had come and I called the nurse. We sat with JD for 10 minutes, I cried. Then her breathing became regular again. And has been ever since.

Jane asleep in the hospice

Jane asleep in the hospice

It is now 3.50 in the afternoon. So a warning shot. Needless to say I have not left JD’s bedside since. Her mother came and left, having said her goodbyes and made her peace with anything that might still need peacemaking (sorry for crappy grammar). Then our friends K&R came along with ample supplies for the rest of the day, stating they were ready to stay as long as I want them.

And so we wait. I know there is not much time left. But how much or how little is a complete mystery. So it is a strange thing sitting here with friends, food for the evening, Ipads, books and crisps, waiting for death. Knowing JD, she will make us wait. And wait. And wait. Just because she can.

Just go, my angel. Just let go.

28th May2011

Waiting game

by Dutchcloggie

JD is no longer opening her eyes. Don’t know if she is asleep all the time or unconscious. This is the cruelest of waiting games.

I have lived in the hospice for more than a week now, unable to go home at night, just in case something happens. And of course, nothing happens. I put the folding bed next to JD every night. In the morning, I go home for a quick shower and breakfast. I am concerned the hospice staff will by now think I am weird and in their way. They say they don’t of course.

I have a sneaking suspicion JD will die as soon as I go away. Maybe I should leave for a night. That might encourage her to let go.

27th May2011

What’s in a name

by Dutchcloggie

JD is the Chief Warlock of the WizengamotToday JD is Chief Warlock of the Wizengamot. Yesterday she was Queen of the Borg. Before that, she was Minister for Magic and The Last of the Timelords.

At least it means people smile when they walk past or when they open the door. And a smile is always good.

26th May2011

As the end approaches

by Dutchcloggie

JD is now virtually unconscious/asleep all day. Her breathing is extremely shallow. It breaks my heart that we are basically waiting for her to die from dehydration. I asked the nurse about giving Jane extra morphine to speed up the process but because JD does not appear to be in much pain (or she is and can’t show in any way), they can not give her much as there needs to be a reason for giving her morphine, i.e. a nurse needs to verify JD needs it. Here is one situation where I wish there was a law on euthanasia (and no, I am not looking to start a discussion on that here, just saying that I personally just don’t see the point in having to watch Jane die of starvation & dehydration over a period of weeks when she could just go to sleep peacefully).

Anyway, I have really come to know our friends over the past few weeks. Having so many visitors is quite stressful as everyone wants some time alone with JD to say their goodbyes. Planning all that is not easy. However, it is absolutely wonderful to see how many people care deeply for JD. Some friendships have really grown stronger and although not everyone has been to visit, there isn’t anyone of JD’s friends who has faded away or not been in touch. Some of them needed some encouragement after my blog post of a few weeks ago, but they still came through in the end.

Yesterday, two of our friends, who are in a band together, sat at Jane’s bedside and, with a guitar, played a couple of Jane’s favourite songs for her. She blinked twice so I assume she heard it. It was wonderful. I had tears in my eyes. I recorded a video of it which I will treasure forever.

A friend sent me an extremely insightful article about hospice care versus keeping treatment going at all costs. It is a long article and American and also not specifically brain tumour related but it resonated with me in many ways. Especially when it comes to doctors almost actively avoiding raising the issue of perhaps ending treatment and just enjoying the last few months.

25th May2011

Sleeping

by Dutchcloggie

Sleeping JaneJD had a good night’s worth of peaceful sleep.

19th May2011

Deciding on the impossible

by Dutchcloggie

JD is in the hospice. After agonising over it for a few days, I decided I wanted to see if re-hydrating would make JD more comfortable. So she wemt to the hospice and spent yesterday on a drip. After a night of seizures, vomiting and bed wetting, I think the answer is clearly NO. Her body is strongly objecting to the fluids. By doing this, I have probably prolonged JD’s life by a few days (the fluids did make her more alert, even if also more uncomfortable) but also prolonged her suffering.

I sat down with the consultant (and a host of medical students) to discuss options. He understood how hard I found it to make decisions when everyone keeps saying that it needs to be good for both JD and for me. Since these two things are not always the same, that makes deciding almost impossible. The doctor was lovely and he asked me if I would prefer him to make the decisions in my place or would I like his opinion and decide myself? In the end, he gave his opinion on what he felt should happen and I said: then that is what we’ll do. And then I cried. Not just for JD, but because finally I made a decision with clear input and opinions,based on facts and experience, not just on emotions, hopes and wishes. This has been so lacking in the past few weeks where the responsibility was all mine. I made decisions based on gut feelings, rather than on experience or medical knowledge. This has meant I never felt sure about having done the right or wrong thing, something which has proved extremely stressful.

Decision was to stop all treatment, other than pain relief. So no fluids, no food etc. This is effectively the same as it was at home. But this time, I also decided to keep JD in the hospice. I know this is probably better for JD and me as I would most likely panic every time JD vomits or moans in the night. But I still feel like I failed her at the last minute.

So the waiting begins. Or rather, it continues. For as long as someone can live without fluids. This time, it really does feel like I can cross off the days.

Is it wrong to already be wondering which one of her friends would like to speak at the service?

18th May2011

Hospice

by Dutchcloggie

JD is in the hospice. Initially to try and give her some fluids but if I’m honest, I think we are already too late with that. Am already regretting the decision to take her there but after changing my mind a million times a day, I just could not face making yet another different decision.