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.
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 crips, waiting for death. Knowing JD, she will make us wait. And wait. And wait. Just because she can.
JD is no longer opening her eyes. Don't know if she is asleep all the time or unconscious. This is the cruellest 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.
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.
JD is now virtually unconcious/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 euthanesia (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.
JD is in the hospice. After agonising over it for a few days, I decided I wanted to see if rehydrating 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 decising 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: tuen 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 friejds would like to speak at the service?
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.
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.
I 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:
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.
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.
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 itmis 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 enquiries 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 formher 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.
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 kwould 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.
So 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, stonger medication. JD and I slept through the night, the two syringe drivers buzzing away reassuringly by JD's side.
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 angey 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.
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 everytime 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.