03rd Jan2010

2009: an overview

by Dutchcloggie

As it is a new year, I thought it would be a good idea to look back at 2009 in a really quick summary. So what has happened this year (and, more importantly, who cares about this kind of self-indulgent navel-gazing??)

January – June
JD had to have radiotherapy on her braintumour. Every day for 6 weeks we got in the car for an hour to have 10 minutes of treatment. We had been warned about possible side effects but let me tell you: radiotherapy to the head is fucking devastating. Only in September did JD start to recover from the damage. No concentration (and I mean: not even for 2 minutes!), extreme lethargy, forgetfulness to the point of forgetting to eat and forgetting what day it was, non-stop eating, depression, lack of initiative, self-centeredness, inability to understand emotions, both her own and other people’s, unable to plan more than 5 minutes ahead, not able to have a phone conversation with the radio on, the list goes on. We were not properly warned and for the first time since she was diagnosed back in 2005, I really felt like screaming, hopelessly desperate and unable to see a light at the end of the tunnel. I just could not see how JD would ever get better again. And I am not talking better from the tumour but just recovering from the damage of the radiotherapy.

Life just stopped being anything like it was before and I had a tough time living my own life as well as living JD’s life for her more or less. I don’t care if people think I am being selfish for saying it was difficult for me (after all, JD is the one with the nasty tumour) but it was. So there.

June – December
Life has a funny way of throwing things at you. In June I read something in a local rag about Spratton Folk Festival. It said all-female group Invocal would provide the local flavour to the festival. So I checked them out. Found they were looking for a singer. Agonised about it for days (am I good enough, I’m shit, really), got in touch, did not get the job but ended up as their ‘manager’ in the end.
No idea what a manager does so I just jumped in, started about 50 things at the same time, then drowned in ther amount of work I started and did not finish (ADHD much?) but managed to do some good stuff in between. (video, brochures, PR, general organising, whatever). The only thing I have not managed to do is book any gigs. Bit of a bummer really… keep working on it. (see how I managed to avoid saying I am talking about Invocal here!)

Anyway, it is absolutely lovely to be doing something in music again, even if it is not performing and playing. Sometimes I feel like a groupie and a fraud. But I just love being around music and people who make music. It just feels like a lovely warm blanket. The unexpected side effect is that I have also made some new friends and I have actually seen more pubs since June than my entire life before then. Yes, I have a social life. Well, I had one before but not in Northampton. Never got round to building a new one after moving here.

JD recovered well from the radiotherapy but has lasting trouble with her concentration and some remaining lethargy that may not go away. Unfortunately the RT did not help & the tumour actually changed in to a Grade 3 Astrocytoma in certain places which means it went from wholly benign to partly malignant. Bummer.
So she started chemotherapy in August. 5 days of Temozolomide per month. For 6 months initially. She will be on that for as long as it stops the tumour from growing. Which may be for the rest of her life. IF it stops it from growing. We’ll know after the first post-chemo scan in February 2010.

My sister gave birth to her second daughter, a tiny little puppet called Alessia. Hurrah. Now my folks are proper grand parents I am I am officially off the hook for providing the offspring. Phew!

That’s about it really. Other than a lovely holiday in France and erhm….lots of other stuff I have forgotten about for the moment.

Resolutions for 2010:
– Book more gigs
– Be more organised
– Go out more
– Make money & get paid
– Find a cure for AIDS & brain tumours

14th Nov2008

More pain in the head

by Dutchcloggie

Aarrggghhh! I know it is JD’s pain and not mine and that I shouldn’t complain but my God how annoying is this tumour!! I feel so powerless and unable to do anything useful.

On Wednesday, JD had yet another headache. In fact, she had a headache for a few days (ever since her course of Dexamethasone, a steroid that helps to reduce swelling of the brain) was finished. On Wednesday, it turned in to a proper headache that left her rolling around the bed in pain. By the time I went to bed, she had been like that for hours. We had tried Paracetamol, Ibuprofen and Codeine tablets but nothing really helped against the pain. She was throwing up and it was just heartbreaking to see.

In the end, I picked up the phone and called NHS Direct, a telephone service where nurses and doctors from the National Health Service give people medical advice 24/7. The idea is that if people call that for minor cases, then they don’t need to go to the ER or doctor, saving money and time.

I rang them to find out if there was anything stronger I could get JD for the headache. We live 2 minutes away from the hospital so if the answer had been yes, I would have taken her to Accident & Emergency to get he medication but I did not want to take her there and then be told there was nothing they could do for her. After all, it really was just a headache.

The nurse on the phone was fantastic. She was friendly, helpful, caring and understood that I was anxious to get SOMETHING, anything, to help JD feel better. She decided it would be best for a doctor to call me back to discuss it. And so I gave my phone number and within 15 minutes, a doctor called me back. He said he would like to see JD at the hospital. So I bundled her in the car for the 2 minute ride and off we went.

The doctor was friendly and managed to make me feel smug too! He said it was rare to meet a patient with a partner who knew every single detail of the treatment (I know all dates, medications, dosages and whatever else you can know about JD’s condition). This surprised me because I would have thought everyone wold know all details about your partner’s illness.

Anyway, he looked at her and offered her to be admitted overnight (it was already 1.30am by then) so that they could give her stronger pain killers. The other alternative was to give her a new course of Dexamethasone right away as that would immediately start reducing the swelling of her brain and thus take away some of the pressure inside her head. JD chose to go home instead with the tablets.

They seemed to help because she finally managed to fall asleep around 3am. In the morning, we went to the GP who gave her a new course of Dexamethasone for the next 25 days.

It is now Friday and the headaches are still there. On a scale of 1 to 10, she rates it as 7 or 8 today. That sucks. That really sucks. I hate the fucking tumour. It may not even be related to that bloody thing. She might just have developed migraines. Now that would be really shitty.

JD was supposed to go to Germany with the fencing team for a tournament. She’s at home now, deciding the headaches were too severe.

Oh, and to top it off, the boiler is broken and we have no heating & no hot water.

08th Jun2005

Tumour diary – Day 3 Going home tomorrow!

by Dutchcloggie

Today was a good day. In fact, today was a perfect day. JD was feeling much better and walked around. Her face is a little bit bloated from the bruising but nothing major. We went for a walk around the hospital and when I arrived for visiting hour this evening, she was all happy because the doctor has told her she can go home tomorrow!!

Can you believe it? they hack a piece out of her brain on Monday afternoon and she gets sent home on Thursday? Of course we are totally and utterly happy that everything has gone so extremely well. I don’t know if they made it all sound horrible at the start so that it would all look much better and easier once it was all actually happening. Or maybe JD is indeed recovering extremely quickly.

Either way, the next step is waiting for the results of the biopsy. But tomorrow is a nice day for the two of us. I got champagne, roses, a clean bed, tidy house, croissants for in the morning….did I forget anything?

07th Jun2005

Tumour diary – Day 2 Afternoon

by Dutchcloggie

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.

Thank you.

07th Jun2005

Tumour diary – Day 2 Good morning

by Dutchcloggie

JD has had a nice and quiet night sleep. That is according to the night nurse. According to JD herself she had a reasonable night sleep with headache and interruptions. She seems quiet this morning but fully awake and talking. She had breakfast and some bananas. She asked her mother for a digital camera so she can see what she looks like in hospital.

I am feeling ok but of course i am anxious about any possible changes in her personality or behaviour that may have come from the tumor or the surgery. I have to learn to ignore it every time i think: would she have been like this before the surgery as well or is this different? We will be ok i am sure. I love her to bits even with her newly acquired comb-over.

06th Jun2005

Tumour diary – Day 1 She’s fine

by Dutchcloggie

A quick mobile blog to let you all know jane has had the surgery. It all went fine and she is looking really good. No bruises in her face yet and they did not have to shave her entire head either.

06th Jun2005

Tumour diary – Day 1 She’s in

by Dutchcloggie

Getting ready for surgery

Do I care if anyone reads this? Not really. Just makes me feel better to write something, no matter how short.
I took JD to the hospital yesterday afternoon. We were reasonably cheerful until JD was appointed her bed. Right opposite a little old lady with her head in a full-on metal frame. Obviously she had some kind of spinal reconstruction done on her. Just not a cheerful sight. JD’s mood changed instantly. It obviously started to dawn on her this was all really happening. My heart just melted when she sat there in that chair that seemed to grow bigger every second.

The nurses seem nice so that is good. We just waited around and did a Sudoku. We found even the easy one to be excruciatingly hard on a day like yesterday. Surgery is today (Monday) at 1pm so remember to send your positive thoughts. You can pray if you like. it is nice to know that even though we are not religious, people take the time to pray for us and ask their God, who they feel is all powerful, for help in JD’s name. Thanks guys.

JD on the morning of her surgery

JD on the morning of her surgery

I am about to go to the hospital to say good morning (If the nurses will tolerate me outside visiting hours of course) and then during surgery, I am not sure yet what I will do. Wait in the hospital for 4 hours? Or go for lunch with my parents who have set up camp on a campsite near the hospital? Don’t know yet.

Risks of the surgery include seizures, aneurisms, hemorrhages etc. Nice thought. They can not remove the tumour completely so they will try as much as they can and the rest will have to be treated by monitoring it and operating again if it grows again in a year’s time or so. Or they give her radiation. But that can turn benign cells into malignant cells so they are not too keen on that unless it is the only option.

I love her so much. It is unfair.