03rd Apr2011

In hospital

by Dutchcloggie

On Friday, JD suffered a seizure around 6pm. This was a different thing than her “normal” small seizures. When she is on high doses of steroids, as she is now, she sometimes has short absences of about 20 seconds where her eyes roll and she just goes all slack. When it is finished, she is straight back to normal.

On Friday however, she experienced a ‘proper’ seizure with groaning, mouth foaming and the like. I called the ambulance and they arrived within 4 minutes. Amazing. Friendly ladies took JD to The hospital where she had to wait 4 hours before being seen by a doctor. Unfortunately two patients had died in the A&E so things were a bit busy.

They admitted JD, who had 2 more seizures whilst waiting. She ended up in EAU, the Emergency Assessment Unit. This is where patients come from A&E when they need to be observed for a few hours, before being moved on to a proper ward in the hospital. It is an awfully noisy place with people running around all the time. I stayed with JD until 3.30am and then went home for some sleep.

In the meantime, my parents, who had arrived for a short visit from Holland only hours before it all kicked off, had gone back to their hotel as they had waited for me back at home when JD was whisked away to hospital. When I came home, I found that my mother had used her time well. She had done all the ironing and cleaned the bathroom and the kitchen. Yay for people who understand how much that sort of thing helps me.

I had a few hours kip and then went back to hospital. JD was ok but a bit confused. The doctors and nurses are having trouble making a proper assessment of JD as she does not always respond to their questions. So when she does not lift her legs as requested, they write down she is looking paralysed. But she isn’t. She just does not understand the question. Because 5 minutes later she might respond if you ask the same question again. Or they ask if she has a headache, she might not respond or say no. But I know that she has more or less permanent headaches.

So I make it my business to be around as much as possible, to make sure JD gets the care she needs.

They are keeping JD in the hospital until they can organise carers to help me with JD at home.

I will write a post later about the consequences of all this. Am going for a quick nap before going back to hospital.

04th Apr2011

Coming home

by Dutchcloggie

JD is hopefully coming home tomorrow. Today I spoke to the community care team and they said JD will have carers coming in 4 times per day to help with getting washed & dressed. I look forward to having her home. The Neuro Oncology Nurse said that the way things are at the moment, she expects JD to be with us for a couple of months or so. I look forward to having her home.

She is currently sleeping a lot and has frequent spells of absence. These can last for a few seconds or minutes. There is no physical sign when they happen but she will just stop responding for a while and just stares into the distance. There have not been any more full-on seizures and she is on different anti-seizure meds to avoid further episodes. This morning she had a good laugh about a story her mother was telling her. It is nice to know she still understands everything you are saying. It is just that sometimes she doesn’t seem able to respond or process exactly what she is asked to do.

The other night, I cried for an hour until my muscles ached. Last night I put off going to bed because I am afraid of how lonely and empty it is. I can not imagine how much hell it will be in the future. I am glad JD is coming home. It is lonely without her.

If you want to visit JD, drop me a line and we can sort it out.

05th Apr2011

Today is the day Jane comes home.

by Dutchcloggie

Jane is coming home today with a raft of carers and nurses in tow. Apparently they have just introduced a new service in Northampton for community care that is organised in a more flexible way. Sounds good to me.

I know it was unrealistic but for some reason I had a picture in my head of Jane just being in our bedroom in the hospital bed, free of pain. Peaceful. But of course because she has trouble swallowing, she needs syringe drivers for some of her medication and this has dramatically changed the picture for me, making my house feel like a hospital. I am slightly overwhelmed by the enormity of the reality of our lives for the next few weeks.

Jane seems to be sleeping most of the time and if you ask me, it will be weeks, rather than a few months before we have to say goodbye to her. My God, I don’t know how I am going to cope with it. I miss having my family around for support.(Sorry mum & dad, I know you read this blog and I know it upsets you that your daughter is so far away and that you can not give me a hug when I need one but I am not going to hide the fact that it upsets me too).

Luckily my sister is coming over some time in the next two weeks and I suspect my parents will be here again soon as well.

I would like to hear from other people with experience of loved ones dying at home. At the moment, my ideal option would be for Jane to be home until a few days before death and then go to the hospice. I feel I can not deal with having her body in the house, undertakers running around etc. I am afraid I might not be able to sleep in the bedroom again after that. My nan’s sister said that she still has nightmares of when her husband died at home and all the things that happened after that. I know I might change my mind on this of course but I would like to know how other people feel about this.

06th Apr2011

Hurrah for the NHS

by Dutchcloggie

The NHS gets a lot of bad press (mostly from the Daily Mail) but I think they are awesome. JD is now home and comfy. There are carers 4 times a day. Once per day, the nurse visits. JD was discharged from hospital with all her medication for a month, bags full of syringes and dressings and a detailed chart written out for me with all her medication. There is an emergency nurse available 24/7 and if I want some time away, the Hospice at Home team will come and sit with JD for a few hours. All relevant people have all the details and all of it was organised in 24 hours.

I am a bit scared about the first night alone with her. I think I will struggle to sleep and will be checking her breathing every minute or so. The nurse did say the nights would be the hardest.

The carers will be here an hour each time, 4 times a day and I have decided to use the afternoon hour to take up running. It is a good way of getting some exercise because apparently my arse has become rather large. Secondly it gives me some time away from home without feeling I am leaving JD alone for no reason. Hopefully I can get some regular running going and get a bit fitter again. And thinner.

JD seems to be quite comfortable and not in too much pain. She had a right laugh when watching Top Gear this afternoon and is now sleeping again I think.

We can do this.

10th Apr2011


by Dutchcloggie

After a very hectic few days, things have now settled in some kind of routine. JD is in bed most of the time. Sometimes we get her out of bed around mid day and she sleeps in a chair in the living room. Around 3pm, we take her back to bed.

There is a lot of sleeping going on. 4 times a day nurses and carers come in to help change the bed and make sure JD is comfortable. The district nurse comes around 1pm to change the medication in the syringe. All in all, there is a massive support system available for me and JD.

I have to learn to let go when the carers are here. The are happy to have me help them with the care but they all keep encouraging me to go out and take some time for myself when they are here. I don’t feel that need so much but they all have the experience so perhaps I should listen to them.

Last night I had a bit of a panic attack about the whole dying thing. I was sitting on the bed next to JD and we were eating apple crumble. It was all quite pleasant and loving when suddenly it struck me that even this distorted idea of happiness would not last. I suddenly got all cold and felt my throat close up. I broke out into a sweat. If I had been alone, there would have been an almighty crying session but I was sitting with JD so I did not want to upset her.

I think it is obvious I am not at all prepared for life without JD. I can deal with the present, no matter what it is because she is still here. No matter how much our relationship has changed due to this evil disease, she is still there and I can still see the woman I love. When I look at her now, sitting in her chair, asleep, I can almost pretend she is perfectly healthy and that this is all a dream.

14th Apr2011


by Dutchcloggie

JD in our bed for a cuddleWith the help of the nurse, we managed to get JD in our bed. We are now lying in eachother’s arms, cuddling. Nice.

15th Apr2011

In it for the long haul?

by Dutchcloggie

JD is getting a steady stream of visitors. There are people here almost every day. It is nice, I think, for JD but it also breaks my day a bit.

JD is now really speaking only a handful of words every day. If we are lucky, she might just respond a with a Yes to a few questions but that is it. I am however working on the assumption that she can hear and understand everything. So I read to her, watched the DVD of Green Wing and have visitors sit and chat around the bed as normal.

My big worry is that she is able to understand everything but unable to communicate. A bit like locked-in syndrome. That would be terrible for her. I just guess how she is feeling and hope I do the right thing.

Even if her cognitive functions are deteriorating, physically, she seems fine. Her appetite is good, she sleeps well, her breathing is strong. I guess that as long as the tumour does not interfere with the brainstem and vital body functions, she could be like this for a long time. This cruel disease does not always progress in neat stages. With JD it seems to be more short, steep decline and then a period of calm where it is relatively stable. So perhaps we have just had the period of steep decline and are now entering a long period of calm. No idea. But last week I had the feeling she would not be long for this world, but this week I am feeling much more confident that there is still some time left for us to spend together.

Now I just need to think of things to do with JD.

18th Apr2011

Difficult weekend

by Dutchcloggie

Learning to say no is an important skill but it is so difficult. As most people have a job, a lot of people want to visit at the weekend. I am not good at saying no as I do not want to deny anyone their time with JD. And, I like visitors as well.

However, this weekend I got it all completely wrong and nearly had a nervous breakdown.

First of all, on Saturday morning, my sister and her husband came to stay. They had only just arrived when the carers showed up. So then there were 4 extra people in my house. I was keen to get JD in to the chair in the living room so I suggested we tried to use the hoist to put JD in her chair so she could sit and hold court for the day.
The sling

Now this hoist is quite a beast and the carers were not sure how to put JD into the sling properly. They started to put JD in the very complicated looking thing. In the pictures, this always looks easy, with the patients smiling happily. In reality it was a nightmare! We could not get it right and when we hovered JD off the bed, it looked all wrong. JD looked in serious distress and I was panicking a bit. We decided to abort the attempt and try again another time. So all the man-handling was for no reason.

As we were doing this, a friend arrived for JD on a planned visit. So then there were 5 extra people in the house. Due to the whole hoist-disaster, I was stressed and very upset so very much flapping about.

The carers left and another friend arrived. So still 4 people in the flat.

Around 4, another 2 friends arrived, just after the previous 2 left. By now I had calmed down a bit so things were fine again.

On Sunday, we did manage to get JD in her chair in the living room but with friends arriving just as we were doing all the hoisting, it was a stressful start of the day again. It got worse, much worse.

After all friends and my sister had left, the carers and I had to put JD back in to bed. When we were lifting JD from the chair onto the bed, she started to slip out of the sling. She is quite heavy these days and having her fall out of the sling onto the floor would be a disaster. As she helplessly slipped further down, I panicked. Luckily the carer just said: I have her legs, you grab her shoulder and we’ll just lift her onto the bed. So we manhandled JD onto the bed. I swear I saw tears in her eyes. I too cried again. I promised JD she would never have to get into the hoist again.

I told the care agency I wanted a different sling. JD really likes to sit in the chair in the living room so I really want to make it work. It will make her feel more part of life, instead of spending the day in bed. But not when it confuses and scares JD, hanging in some uncomfortable contraption.

So combining all that stress and agony for JD, this was easily the most stressful weekend in months. And that includes the weekend when JD had her seizures!

The new sling was delivered this afternoon and looks a lot easier than the previous one. stay tuned for a picture of JD in her chair.

20th Apr2011


by Dutchcloggie

JD having a rest in her chair

JD having a rest in her chair

Jane is having a sleep in her chair today. Yes, it means we got the hoist to work. Opened the door to the patio to let the sunshine in.

26th Apr2011

The trouble with food…

by Dutchcloggie

JD in her chair on the patioThis weekend my parents came over from Holland for Easter. On Saturday, we put JD in her chair again and rolled her outside onto the patio to enjoy some nice time outside. i had hung up some blankets to create shade and it was a lovely little space for her. The bbq was fun and JD did eat a bit of food.

Lately, eating and drinking have become more of a problem. It seems that JD is slowly losing the ability to voluntarily control her muscles. This means she has trouble swallowing but also trouble REMEMBERING to chew (or something like that). Food will remain in her mouth for a long time and she needs constant reminding to keep chewing and to swallow. Other times, she simply won’t open her mouth, no matter how much I try. Since she will only drink when she has food in her mouth, this also means she drinks nowhere near enough in a day.

Often, when people are dying, they lose their appetite. JD seems to be different. It seems that she does want to eat but that she is simply sleeping too much to be able to concentrate on the chewing and swallowing.

She is very sleepy and has been for the past 3 days. This may be a sign of progression of the disease. Or it may just be because we have exhausted her over the past 3 days, having her in the chair for too long every day.

I have spoken to the district nurse and we agreed to see how things are in a few days. It might just be a temporary blip.

UPDATE: Today, JD has eaten her way through an entire bag of Kitkat bites and a pint of orange juice… Yay! She is also much more awake today. So it is clear the two things are very much linked. Maybe it is something as simple as that when JD sleeps, her entire body goes in to a much deeper kind of sleep as before and unless she is fully awake, she is unable to eat or drink.

So maybe I need to work harder at keeping her awake….

01st May2011

Having a wee

by Dutchcloggie

JD eats or drinks very little these days, as discussed in my previous post. Obviously this means she also does not need to toilet very much. Nothing going in, nothing going out. However, not having a wee for 16 hours is not healthy, no matter how little you drink.

So after this happening 3 days in a row, I got worried and discussed it with the District Nurse. It was costing me my night’s sleep as I was checking to see if there was a wee already, just about every 2 hours.

It was decided to use a catheter to drain the bladder and then leave it in for a few days. It seems that every time JD is having twitches and small seizures, her bladder goes in to spasm and doesn’t empty properly. This means she never has an empty bladder and that in turn can lead to infection.

So with the catheter inserted, the bladder was drained and now we can keep an eye on how much goes in and how much goes out. Once we have a good idea of how much output there is every day, we might try to take the catheter out again and monitor how things are. After all, these things are annoying and can be quite painful.

But it is yet another step backwards.

02nd May2011

Absent friends

by Dutchcloggie

It can’t be easy to accept that one of your friends is dying. I understand this. However, there are some people that Jane considered good friends whom we have not heard from for weeks now. If it is too difficult, too emotional, just send me a message, saying you are aware of the situation but that it is too hard for you to deal with. I can easily accept and respect that.

But there are a few people from whom I have heard nothing. Or very little. People who are our friends on Facebook so they must know what is going on. And yet, nothing. Not even a comment on a status update. Or a Like. Surely that is the simplest way to at least show you are interested in your friend.

We are blessed with some very good friends who come over on a regular basis and lots of people who stay in touch via Facebook, email and this website.

Maybe the initial shock wears off for people. After hearing how ill JD was, we had A LOT of visitors, emails & phone calls. Now that things have gone on for longer than perhaps first expected, fewer people are visiting. And this is the time when visitors would be really nice, not just for Jane, but also for me. Caring is hard work. It is relentless and all-consuming. Having visitors gives me the chance to leave the house for a bit, even if it is just for an hour to grab a drink with some other people, or something like that.

When JD first came home, I did not want to leave the house. But now, over the whole bank holiday period, we had visitors on only 3 out of 11 days and none at all in the diary for the next 2 weeks. And believe me, I love JD to bits but spending day after day, alone with someone who just sleeps all day, without being able to leave the house can be really boring.

Maybe visiting terminally ill friends is just different from visiting a friend. It is less about a social visit for the visitor’s pleasure. It should become more about being helpful or entertaining for the ill person or their carer. Your visit becomes something that helps someone, rather than just entertains.

Not sure what I am trying to say. Maybe I am saying that perhaps some people should get over the fact that they feel uncomfortable sitting next to JD’s bed and think instead of how their visit, hard as it might be for them, can bring a little bit of relief for JD or for me. To them, it is just an hour, 2 hours of being uncomfortable. For JD and me, it is day after day after day. For a “normal” social visit, I can see how driving 1 hour to come & see us after your regular work day is a bit much. But for a friend who is so ill, surely that is a tiny, tiny inconvenience for you and certainly no reason not to visit on a regular basis? is people’s willingness to travel an indication of how much they do or do not care? If that is the case, then the lovely guy who had not seen or spoken to JD for 6 years who came to visit recently must be one of her best friends.

Hmmm… As usual, this all seems rather angry and ungrateful for me to say. It is not what I mean. Just not very good at saying what I mean. I am just thinking that if it was one of my good friends, I would visit regularly, inform regularly, email or phone regularly. Show my interest and care very regularly. I know life goes on for people and that, hard as it is to believe, JD is not the centre of the universe for some of her friends, but I would have thought that she would occupy a slightly more central place in some of her friends’ lives now that they will be losing her soon.

06th May2011

Seizures and syringes

by Dutchcloggie

As mentioned before, JD has trouble swallowing things and this is only getting worse. Her medication is all in liquid form because she struggles getting it in with tablets. She has a syringe driver with steroids which dispenses the medication over a 24 hour period. However, up till yesterday she still had to take her anti-seizure medication orally. I would draw the liquid from a bottle and squirt it in to her mouth and beg & pray for her to swallow it. As she needed 4 syringes in total, it had become a complete struggle and I was getting frustrated with worry about not getting the complete dose in her. I am sure JD was getting annoyed and upset with me trying to force her to swallow.

Syringe DriverSo a solution was concocted. We were offered a number of different options. One of them was to give JD a suppository with the anti-seizure stuff 3 times a day. No thanks. Another option was to give her a different drug in smaller doses 4 times a day. This would not really solve the swallowing issue so this too was rejected. That left the option of inserting a second syringe driver with a drug called Midazolam. This is an anti-seizure drug which is also used as an anesthetic. To put it simply, it prevents seizures by making people sleepy.

In anticipation of this change in medication, I had not given JD her full dose of oral medication in the morning, preferring not to battle with her. Unfortunately, JD had a seizure during the day as the nurse ran late and only set up the syringe driver late in the afternoon. It was only a small seizure so I wasn’t too worried.

Then, later that evening, she had another one. I felt a bit sorry for her two visitors who were sitting at her bedside. It must be very upsetting, especially as they had not seen JD for about 6 years.

I checked with the evening nurse to see what to do if there were any further, larger, seizures and then I went to bed. But just before I turned off the light, I checked the new syringe driver with Midazolam. And I noticed it had actually not dispensed any drugs at all since the nurse set it up in the afternoon! No wonder JD was having fits, she had no medication for a whole day! I rang the excellent Primecare Rapid Response team and they sent a nurse with a new syringe driver and it was all sorted. Phew!

It made me feel a lot better to know there was a clear cause for JD’s seizures. I would have been much more worried & upset if the seizures happened despite having new, stronger medication. JD and I slept through the night, the two syringe drivers buzzing away reassuringly by JD’s side.

11th May2011

A quiet week really

by Dutchcloggie

After last week’s issues with seizures, things have settled this week. Kind of. The new anti-seizure medication, Midazolam, is doing its job and JD has not had any problems since.

A couple of nights ago, the catheter she had in stopped working. That is to say, instead of in the bag, the wee just came out the “normal way”, bypassing the catheter completely. I called for the evening nurses and they prodded and poked JD with a new catheter. They seemed undecided which of the holes was the correct one (seriously!) and after much prodding and poking without much gentleness, they decided they were still not sure but they would leave the new catheter in and see what happened. The next day, after more bypassing, JD’s regular nurse came and re-did it again. After that too did not work, we decided to take it out to give JD a bit of rest. After all, as long as the wee comes out, it doesn’t matter if it is via the regular route or via the catheter. A urine sample was sent off to the lab and the result was that JD has a Urinary Tract Infection. So now she is on anti-biotics. Meh!

She seems to have more headaches as she is a bit more restless these days. But then again, it might be pain from the UTI. Unfortunately it is difficult to determine if the morphine she gets is making things better. She is on a small dose and could easily be given more if needed. But I don’t want to give her morphine when she does not need it.

Other than these minor issues, things are relatively ok.

On the personal front. I have started to make inquiries about doing a university degree in Adult Nursing in 2012. I have written to several universities asking what their entry requirements are. If I need to do any particular courses before I can start, I will be able to do that this coming academic year. I feel guilty for making steps towards my life without JD. It feels a little as if I am just waiting for her to die so I can get on with things. On the other hand, I think that having a target to work towards will make it easier to pick up “normal” life again, rather than feeling I need to re-organise my life in the first weeks after JD’s death.

Eeewwww… I don’t like thinking about JD’s death and what things will be like afterwards.

16th May2011


by Dutchcloggie

As most of you will know, JD was studying for a PhD at the University of Warwick until last October. She was working on something related to Corporate Social Responsibility (details are here). Today JD had a visit from her PhD supervisor and 2 friends from University that used to work in the same office as JD. Her supervisor had with him a letter from the Vice-Chancellor of Warwick University. Apparently, these are more rare than gold dust.

JD gets a letter from the VC of Warwick UniversityI had asked her supervisor if there was a way to award JD her PhD, based on all the effort she had put in to it before she had to quit. Or perhaps even an honorary degree instead? Apparently this is not possible due to academic rules and regulations. However, they brought with them the next best thing. The letter reads:

Dear J,

I would like to personally commend you on your contribution to the University of Warwick both during your MSc and your PhD.

I congratulate you on your Distinction in your MSc in Engineering Enterprise Excellence and the work you have done since in promoting the degree, mentoring current students and co-supervising projects.

The work you presented in your literature review for your PhD is exemplary. The mindmap you produced shows an excellent command of your subject, all the more remarkable for having been achieved under very difficult circumstances.

The achievements demonstrate the high value you have added to the University in a relatively short period of time. It is a great loss to Warwick that for health reasons alone you have not been able to continue your PhD to the level of success predicted by your supervisor and other staff in Warwick Manufacturing Group.

My thoughts are with you, your wife and your family and friends.

Yours sincerely,

Professor Nigel Thrift

JD’s supervisor told us how JD and him had worked together on a mindmap model that helps PhD students to make sense of the mountain of information they acquire and that he uses this revolutionary method with other students. It is nice to know JD has created a lasting legacy in some way. He also told us they were thinking of writing a book together and that JD’s work would have been a seminal piece of research in the field of Corporate Social Responsibility.

He has requested I give him JD’s research and writing so that a future student can pick it up and build on it.

It is wonderful to know JD’s work has been valued in such a way. Clearly she was much smarter than I ever gave her credit for.

18th May2011


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.

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?

25th May2011


by Dutchcloggie

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

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.

26th May2011

Prolonging life

by Dutchcloggie

For months and months, JD has been on a high dose of steroids. These steroids reduce the swelling of healthy brain tissue around the tumour. The healthy brain gets irritated by the tumour and swells up, causing more pressure inside JD’s head.

Keeping the swelling down obviously reduces the chance of headaches. It also reduces the chance of the swelling putting pressure on vital parts of the brain, thereby preserving brain function as much as possible.

Ironically, the same steroids that made her life bearable are now making her death hard. Without the steroids, the pressure in the brain would be greater, thus more vital functions would be affected, possibly resulting in a quicker, more peaceful death.

So this morning the doctor and I agreed they were now probably prolonging JD’s life and thus doing more harm than good. So the dose has now been drastically reduced. If this results in severe headaches etc, we can simply increase the pain relief. Perhaps by letting nature run its course, we can limit JD’s suffering.

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.

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.

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.