I have not posted here in a long while. But with good reason. Things are not going well with JD. Tumour is back and chemo no longer works. Doctor says it’s ‘a matter of months’ so God knows how long or short that is going to be.
After the appointment, I went to my boss and handed in my notice on the spot. I told him I would not come back. From now on, I will be JD’s full time carer.
So, the result of JD’s PET scan was not a happy one (Not that we expected that).
Scan shows clear area of high uptake and increased metabolic rate in the right anterior frontal lobe. On the positive side, the Oncologist thinks the surgeon might be able to take the offending Grade III bits out, something they will get back to us about. I assume that is a good thing as it means it will at least slow things down a bit.
She is still starting the chemotherapy, Temozolomide, tomorrow for 5 days. At least we can apparently go on holiday because any side effects of the drugs are only expected to last for as long as she is actually taking the tablets. So we’re off to France. Yay.
JD is much better about this than me. In fact, she went to see her PhD mentor after the hospital visit. I am feeling depressed and deflated after it all. This is not a curable illness. I think it is starting to sink in that, let’s be honest, she will die of this sometime (assuming she doesn’t walk under a bus before then). If she’s lucky, it will be 10 years, rather than 1 but that is still not good enough!
I should be strong and organised and supportive for JD but right now, I just want to leave my job, my house, my car, get all my money together and travel around for months, together, not worrying about anything. With no set time to return, no responsibilities. Just go away.
But apparently that kind of thing is only acceptable once things get ‘really bad’.
Might go home now and have some booze and a good cry.
How do you know things are getting better? How do you know she is not just having a good/bad day?
Last week, I asked JD to start making dinner before I got home so I could go to a meeting of my sports club. And lo and behold, when I got home, she had made a start with dinner, chips were in the oven and the dishwasher had been emptied.
A few weeks ago, that would not have happened. So, I am thinking that means there is improvement. She remembered to do what I asked her to do and did it.
But then again, last week, I asked her to go to our doctor so she could pick up HER prescription which I would then take to the pharmacy. I stressed how much I would appreciate her doing this as I was very busy already and I am sometimes struggling to keep track of all the things in both our lives that I need to do and remember. JD can play sports for an hour or so, so a 15 minute walk to the doctor was not asking a lot. She could easily do it. I also stressed that if she did not go and pick it up, she would be out of medication at the weekend and that it would be her own responsibility to sort it out.
So I tried the nice approach, I tried the ‘it would mean much to me’ approach, I tried the ‘it is really urgent’ approach. I rang her during the day to remind her to go. Twice she said she was about to go. But when I came home from the office, she had not gone. I was angry and disappointed. Especially because I had told her it would make my life so much easier if she would go and pick the blasted thing up.
Sometimes I feel taken for granted. She says she loves me. I know she does. I love her too. Lots.
So what is improvement? The fact that she can play sports for an hour? The fact that she remembered to empty the dishwasher? Or was that just a fluke?
I have now accepted that JD is not really able to remember things that she said she was going to do. It no longer irritates me or makes me upset.
What I can not get used to though is the continued lack of empathy towards other people (read: me). In normal relationships, and with us before the radiotherapy, if one of the partners hints at feeling unhappy or happy, the other partner usually picks up on that with a response or question. But at the moment, I could well be living on my own when it comes to that kind of stuff.
For example, I had my hair cut yesterday and I really really hate it. I want it cut again as it makes me feel really unhappy so I am off to the hairdresser again this weekend. I came home and needless to say JD did not notice I had a haircut. Fine, happens to many women every day. But when I said I had it cut and that I was unhappy with it, she did not say anything, did not ask why, did not say: it’s not so bad, or even; yeah, it is not very nice. It was just like she did not hear the part that included any emotion or emotional response. So she heard me say I cut my hair but the rest got a blank stare and she turned towards the TV.
So much for comforting your loved one.
Also last night, a friend told me I had said something that made her really unhappy. Good for her for telling me about it. I felt bad as I did not mean to upset her at all. So I mentioned it to JD. Who looked at me and said: I’m hungry.
This morning, I was having a shower, JD was in the bathroom as well and I mentioned I was not feeling happy today. ….silence….. I might as well have been alone in the bathroom.
It kind of leaves me feeling alone. Sure, I can mention it to friends who will be sympathetic and so on, but I miss having interaction with my wife.
Yesterday, we went somewhere that both JD and I had been looking forward to. We had tickets ad decided not to go too early since JD would not be able to last all day anyway so better go for a few hours and have fun than go all day and be exhausted. After about 45 minutes, JD said she wanted to sit down. Fair enough. I asked: Are you bored or tired. And she said: both, really. For some reason, that kind of pissed me off. I was really looking forward to going and I wanted to see everything there was to see. So I said: well, if you are tired then we’ll just go home, but if you are bored, then I am going to go and walk around on my own for a bit and see the things I want to see.
So I left her, went away for about 30 minutes and then came back to check on her. She was still a bit bored. Somehow I was pissed off about that. She knows I would do anything for her and go home right away if she was tired. But instead, she spoiled my fun by saying she was bored and did not really want to walk around to look at stuff. I suppose I need to accept that she probably is not able at the moment to take in to account how this makes me feel and that she is not able to say: OK, I might be bored but I know how much YOU like it so I’ll come along to make sure you have fun, at least for a little while.
In the end, I only saw about 25% of what there was to see. I know I could have left her sitting with her coffee and just go off for about an hour on my own but you just don’t really do that. Well, I don’t. I’d feel guilty.
So am I right to be pissed off with her? Should she have made a bit of an effort for me for a change? After all, she said she wasn’t tired. Just bored.
On the positive side: we got free tickets to part of the show. The tickets cost £8 and we had no cash. I looked at JD and she nodded in quiet approval. And so I said: Please, can you let us in? My wife here has been through a rough time recently (I pointed at her bald head and scar across the skull) and this is the first time she is on a day out since treatment. The man squirmed in sympathy and said: OK then, in you go!
Score! Might as well use the bloody tumour for something good hey! So far we got a free hotel upgrade, free entrance to a theatre and, oh, something else I can’t remember. Mind you, I DO always check with AB before I appeal to people’s sympathy. After all, she’s not some kind of commodity. Not a ticket to free stuff.
The past few days have been quite good actually. We went away over Easter and did nothing. No pressure, nothing to do, nothing to forget. That has been really nice for a change. It helped us to get a bit closer to being a couple again, rather than patient and carer.
I think I have now accepted, as much as possible, that the best way for me to deal with this all is to expect absolutely nothing from JD. I don’t expect her to get out of bed, I don’t expect her to make herself lunch. Nothing. This way, anything she does do is positive. And so I praise her for it. But it is hard not to be condescending when praising.
Another trick is really to use repetition. I will not just say: Can you empty the dishwasher today. Instead, I’ll say: Are you emptying the dishwasher today and then she’ll say yes. A few minutes later, I just say: Do you remember what you are doing today? And if she doesn’t remember, I’ll tell her: you were going to empty the dishwasher. And I repeat this trick until she has remembered it at least 3 times.
This seems to have worked so far with small things such as having lunch and, well, emptying the dishwasher.
I realise that the whole household and relationship is basically carried by me and that is hard to deal with sometimes. I do not just have to remember my own life & appointments but also hers. This is hard because I don’t always know she had an appointment in the first place.
Another trick is that every Sunday, I sit down with her and go through her emails. Then I list the emails that require action or a response and then I simply type the response for her (whilst she tells me what the response should be of course). That way, hopefully, she won’t miss anything important or fail to do something someone has asked her to do (She is a member of a few clubs but also social emails from people asking how she is really require a polite response).
It is strange to treat your partner like they can not remember or do anything themselves and it is important to remain vigilant to laziness creeping in (She just rang to ask where her wallet was but she had not actually bothered to look anywhere: she could not see it from the bed and decided she would ask me instead of getting up to look for it. That’s just laziness
JD is currently slow in everything she does. Her thinking and her acting. A quick shower is now an alien concept, eating with the TV on is impossible as she will end up watching TV with her fork suspended in mid-air on the way to her mouth as she is distracted by the box. Getting ready to leave the house takes forever since everything is distracting or requires a decision in some way (what to wear, what to eat etc)
Unless I help.
And this is a difficult thing. Do I wait until JD finishes the task at hand by herself? She is perfectly capable of getting dressed on her own. But it will take an age. So if we have to go somewhere, and I say: we need to leave in 30 minutes, I will frequently find her still undressed by the time it is time to go. So, what do I do? Keep reminding her to get going? Or do I say: Shall I give you a hand getting dressed so it will all go faster?
I feel bad for helping her to get dressed for example as she is physically able to do it herself. And mentally as well. it is just that it all takes forever and sometimes we don’t have forever.
Another thing that I am unsure about is how talk to other people about JD when she is right next to me. When we go somewhere and people ask how she is doing, what do I do? JD is quite slow in processing and not always able to make sense of the questions. So frequently, instead of answering, a long silence follows. People tend to be confused by this and end up looking at me. And so I answer. I don’t want to treat JD like a child or a mute but people then start talking to me about JD as if she is not there. I don’t want to be rude to people so I talk to them. JD will mostly just stand next to me, looking ever so slightly confused and I kind of feel bad.
We were warned about the side effects of radiotherapy to the brain. Tiredness, loss of short term memory, somnolence, loss of concentration. The oncologist tells you what to expect and you sit there and nod, thinking it will all work out in the end.
During the 6 weeks of treatment, JD did not really have any problems. She got tired and started losing her hair after 4 weeks. But no major problems. When the treatment was finished, we were told to expect the side effects to get a bit worse, until about 6 weeks after. And so we were not that alarmed when she started to get more and more forgetful. Nor when she was less and less able to concentrate. Or when she started to have problems with wetting herself in public. At the same time she was reducing the amount of steroids she was taking and headaches soon returned, indicating that things were not going all that well.
In the end, it was me who decided that things were not going well and were in fact getting worse than we were told to expect. Maybe selfish but I was no longer able to understand what was going on. AB would forget to do things she promised, she would not take me in to account in anything she did do (have dinner before I was home from work just because she felt hungry, make appointments with people on days that I already had something planned etc.) She also is unable to relate to her own emotions and is genuinely confused by questions that require a decision, be it a factual one or one based on emotions. She will give the answer you hand to her (‘You want red?’ Yes. ‘Or would you rather have blue?’ Yes, blue would be better.)
When asked why she says certain things or why she behaves in a particular way, she will look away, get distracted and (conveniently?) forget the question. This is all beyond frustrating for me and has brought me to the edge of reason with her at times.
I realise this is more my failure to deal with it than JD’s fault for being like this but either way, I struggle to deal with it. Some days I am able to just ignore it but on days that are perhaps stressful due to work etc, I might not be so patient and snap at JD. It makes me feel bad.
I have a really good relationship with my parents and sister. I tell them everything. They are fully aware of what is going on with JD and when she first had surgery, back in 2005, my parents canceled their planned holiday in Italy and came over to go camping in England instead to be near us during the surgery. (My parents live in The Netherlands, where I am from). So every time there is a minute new development with JD’s brain, my parents are usually the first to know. That is how they want it. I don’t really worry about what they do with the information I give them. With that, I mean that if they get really scared when I tell them we are due to visit the Oncologist, that is not my business. Not that I don’t care, but I mean, I do not withhold information from them just because they might get upset or take it the wrong way. They are responsible for how they deal with the information I give them. It is not up to me to judge if they are ‘fit’ to hear certain things or not.
JD however has never really been close to her parents. Her father died earlier this year and the relationship with her mother is a complicated one. In her family, the tradition is more: don’t tell unless there is an absolute need. So for example, she would be told after the event that her dad had been in hospital for a few days but that it was all OK now.
It seems JD is now taking the same approach with her mother. I had to almost twist her arm to even get her to tell her mother that the latest MRI showed growth and she has not told her mother that she will see the Oncologist this month. She just told her that she had a follow up appointment to discuss the results of the PET scan.
This is something I don’t understand. Surely it means that if JD needs chemo or radiation, this will be a major shock to her family since they have no idea what is actually going on. JD says: well, we KNOW nothing so it would just upset them to give them half a story. She may have a point there. My family know everything, even though we really know nothing. So they are just as uncertain and scared as we are. But in my mind, this means at least they are prepared if the news is going to be bad. If you don’t know how serious it is, the news that someone might need chemo or radiation will be even harder to take, right?
Sometimes we argue about this. I think communication is absolute key. JD feels she does not want to deal with her mother being upset over something we don’t know much about yet and so prefers to say as little as she can get away with. I can rationally see her point but it feels totally alien to me to keep information from my parents.
So, how do you guys handle this? Is it better to keep people informed, as some kind of running commentary, even if the news is tiny or unclear? Or is it better to just limit the information to things you know for sure so as to not upset people too much? Are we ever responsible for how our loved ones respond to the news? Or do we owe them ‘full disclosure’?
I am home for a short while to get some laundry done, have some food and get JD some clean clothes.
Nothing has changed since this morning so it is all still very good. Nothing has changed. Apart from me having read the letter she left under our bed in case something would go wrong during the operation.
Nothing has changed since this morning. Apart from me having gone from a composed partner to a teary mess, sitting at home with a letter in my hand, crying my eyes out.
In the envelope was a letter and another envelope. I have not opened that yet. And I don’t think I will. I will ask JD to open it for me this afternoon. If she does not want me to open it, she can throw it away. Or keep it safe for when it is needed. She told me I could read the letter so I did. If she had told me I couldn’t I wouldn’t have read it.
Just the thought of her not surviving. “Perhaps you can hear my voice or see me standing next to you when you read this…”. I pictured myself reading the letter after her death or after something really wrong had happened. And I just cried and cried and cried. Like I am when I am typing this now.
I would be absolutely destroyed if something ever happened to her. I am nothing without her.
Can we please never have to do this again. Please. Pretty please.
And then you have to do all those things you have been putting off for far too long already. Will, Living Will, Power of Attorney etc.
Sometimes being a lesbian is really annoying. A registered partnership or marriage would solve this sort of thing in one instant. But no, us gay folk have to sort this out separately. Thank God JD and I have no joint possessions beyond the freezer and the bookcase we bought at IKEA.
I don’t get on too well with JD’s parents so it is important we sort things out before the surgery. I do not want to end up fighting over issues when JD is in hospital or even worse. I am her partner. I am her next of kin. This is her choice, this is what we want to put in writing.
So we made an appointment to see a solicitor.
I preferred life when it was about living rather than dying.