FRESH STRAWBERRIES, PLEASE

Last week was half-term school holiday here in Oslo, and I invited my daughter Johanne and the two granddaughters on a two-day cruise to Kiel, Germany. Lucky granddaughters! For the first half of the week-long holiday they stayed with their other grandparents in Nordland, in the north of Norway, where they enjoyed themselves immensely, shopping, going to the movies, meeting relatives, eating fantastic food - and as grandmother Gudrun said: Also simply doing nothing. Which is a great clue to how to enjoy yourself with grandchildren - leave them alone every once in a while, let them (and yourself) get on with those small insignificant everyday things, whatever they may be. (I for one am such a bad, lazy and self-absorbed Granny that I may easily agree to hours of TV, internet surfing, social media contact and staying up late. "Can I please turn the light off and go to sleep now, Mimmi?")

Kiel docks in sunlight! I think this is a first - and I have been to this harbour town approximately 50 times...

Only four hours off the ship in Kiel - just enough time to have a delicious Prosecco breakfast and do a bit of shopping in the pedestrian area - then back onboard for some more tastes of luxury. It's funny how quickly you get used to that luxury feeling. And these were only two days! Imagine those loooong Caribbean cruises - day-in day-out of pure laziness! Here you can really talk about "doing nothing!" Well, come to think of it I was on a 3-week cruise myself 45 years ago - when I was 15 - and my parents nearly went bonkers with boredom, which I suppose is a good and healthy sign. But I loved it! As did my grandchildren on this very short one, and the minute we disembarked in Oslo - having been gone exactly 44 hours - granddaughter Mira wanted to re-board and do it all over again!

Ooo - that cruisin' feelin'

Massage with a view for Big Mama - Aqualand for the others...

Fresh strawberries, please

  

Dining in style...

… and not even managing to finish the ice lolly...

Well, after forty-four hours of delightful and delicious distraction it was back to reality and my roller coaster of emotions, my endless brainspin, my exhausting conflicting thoughts, my "mountain high and valley low."

On February 17 I drove my husband from Hospice Lovisenberg in Oslo straight to the Hospice in our new municipality of Bærum. We were told there was a long waiting list, but he must have been given priority. So this is where he is now, in a room the size of a small flat, with hotel standard and a terrace and a spare room (for me) and guess what?! Angels work here too. They must have a special angel-gene, these nurses and these volunteers. Never have I become so close so quickly to anyone in my whole life as I have to the wonderful human beings who work in the Hospices. And knowing they take such good care of my husband relieves me endlessly.

Yesterday my husband was supposed to go to the Radiation Hospital for a blood test because he is in the middle of his chemo cycle. In two weeks there's a new consultation with the doctor to decide on another round of chemo. In accordance with the Hospice doctor I did not take my husband for the blood test yesterday, because of the trauma of moving him, and I called the Hospital to cancel. The hospital doctor rang me right back, and in just a few minutes we agreed on this: No more cancer treatments, i.e. chemo, no more blood tests, no more brain scans.

This is it.

Spare room - thinking I'll spend the night here this weekend

My husband's room on the right. One of the common rooms on the left - you can spot my husband there, just after I left him this evening. 

Or - then again, this is not it.

He's very much here still. This afternoon I visited him accompanied by his "second wife" - Turi, the wife of one of his best mates, who has known him much longer than I have, and who has become one of my very closest friends too. I honestly don't know what I would have done without her support. We sat with him for two hours and chatted, laughed and joked - and I'll say this: My husband's inherent sense of humour tells me over and over why I've loved him so much during all these thirty-four years. It says a lot about our relationship. He has always disarmed me - this crazy impulsive woman.

I sat with him for another hour. Feeding him. Guiding his hand to the wine glass. Noting the numbers he wants for his game coupons, Eurojackpot, Keno, the horses. (He remembers them by heart). Talking about this and that. Not talking. Hugging. Stroking. Chatting with the nurses who move quietly to and fro, in no hurry. Leaving at dusk to go home to my flat to talk to Sophie and eat something.

Tomorrow our fitted curtains will arrive, finally. So tired of being paranoid of everyone seeing me dance to Bryan Ferry's "Simple Twist of Fate" and Neil Young's "Harvest Moon." Well, as if I care.

I will describe the curtains to my husband tomorrow. But I do wish he could see them!

No curtains!

My Throwback Thursday photo posted on Instagram this evening. I simply love it!

For my gambling husband

IN THE MIDST OF LIFE WE ARE IN DEATH

Today's blog title is borrowed from Joan Didion's prize-winning depiction of her personal grief - "The Year of Magical Thinking."

I have recently finished reading this book. I read about half of it just before I moved in December, then after I'd moved I couldn't find it (it was buried deep in one of the hundred banana boxes), and I missed it and was desperate to retrieve it. And then - yes, magical! All of a sudden it turned up when I stopped looking for it.

Joan Didion won the Pulitzer Prize 2005 for this book. It's simply a recount of her experience with and after the death of her husband of thirty-nine years - John Gregory Dunne. He died suddenly and unexpectedly at dinner on New Year's Eve 2003 from a heart attack. It's also about the longterm illness of her daughter, who died just as she was finishing the book. (She has written another one about this loss, "Blue Nights"). I find myself admiring her openness, her honesty and her truthfulness about grief, bereavement and mourning. And she's not even that emotional - just frank. But between the lines you realise how traumatised she is. As she herself has pointed out - she was crazy with sorrow. She says she wants others in the same situation to know that their craziness is "normal."

I recognise myself in her. Without attempting any bold comparison I see that I write a bit like her. My mission is to convey to others my situation of living day in and day out with unbearable sorrow, with the knowledge that my husband of nearly thirty-two years, my life partner, my soulmate, is going to die from his illness. Not in five years, not in ten, not in twenty - but very soon. The absurdity of it! The absurdity of knowing that "in the midst of life we are in death." Still, this is a fact, an inevitable one, and I have to deal with it, both now and when he is gone.

"Life changes in the instant. The ordinary instant." Joan Didion.

"The Year of Magical Thinking" was recommended to me by my Norwegian friend Eva, who emigrated to Australia ages ago (a bit like my own daughter has done), and I bless her for picking out and knowing exactly the kind of literature that would soothe me. Eva and go way back - to 1976 and our first encounter at the old airport of Oslo - Fornebu - which was situated just a stone's throw away from where my new flat is. Funny how coincidences simply enter your life and in retrospect they were obvious!

Brighton of course!

I was at the airport gate waiting for my flight to England where I was going to spend summer '76 with my English boyfriend. A quick visit to the Ladies' left me so scared I simply had to tell someone, and that someone was the girl next to me, waiting for the same flight. When I came out of my toilet booth there were two REALLY frightening looking guys by the wash basins (in the Ladies for heavens's sake!), and it looked to me as they were swapping, trading, whatever - something illegal - guns, drugs… well, they shouldn't have been in the Ladies' with that nonchalant attitude anyway!

My new acquaintance calmed me down - and said in as many words that she thought I might be overreacting. That's my friend Eva - she'll always be straight with you!

So we got talking - and I asked her what she was going to be doing in England over the summer holidays. "Getting married," she said, very matter-of-factly. "Then we'll be moving to Brighton and I'm starting at the University of Sussex in October." "You'll meet my friend Grete there!" I said. Long story short - the following year I enrolled at the University of Sussex, and the year after Tove turned up at the same Uni and became my friend for life. Four Norwegian girls that coincidence brought together and who are still very much in touch. (And Joan Didion's book was lent to me by Grete)!

I think it was all meant to be. The support these girls give me is endless. This is true friendship for you.

My husband has spent the last twelve days at the Hospice. My decision to ask for more help got things moving at a fast pace, and only five days after my application to Hospice Lovisenberg in Oslo he was admitted for a two-week stay. Though after moving house we now belong to another municipality, there was no question of boundaries. He was there for a five-day stay at the beginning of December when we moved, and they understood the importance of admitting him to somewhere familiar, especially important now that he has no eyesight and has lost the use of his legs.

My days have been structured differently while my husband is away from home, and I've been assembling IKEA's Billy bookshelves at such a rate that I should receive the IKEA gold medal, or at least be given the lead role in the next IKEA commercial. Finally my wardrobe interior arrived too (ordered and paid for before Christmas), and the enormous contents of clothes from black plastic bin liners are being neatly folded or hung out of sight. Much of it has in fact gone into other sacks for donating at the Salvation Army depots. And these are beautiful things! But when you realise you haven't worn them for let's say the past ten years - well, it's not likely they'll ever have a revival.

The view from my husband's room at the Hospice. So terribly sad that he can't enjoy it, but we tried to describe it to him.

I took my husband out of the Hospice last night to come home to a dinner party with six close friends and his sister Eva and our daughter Johanne and her friend Janne. It was great fun and much laughter. He managed to discern and place all the different voices. He enjoyed himself immensely. So did I.

But then, after everyone had left, and I'd put him to bed, I found myself breaking. And today has been bleak. Sleeping next to him again was lovely, but seeing that I can't possibly handle him on my own ever again was a horrible realisation. He fell off the toilet this morning, right on to the hard tiled bathroom floor. If Johanne hadn't stayed the night and been here, I would have had to call the emergency nurse. The two of us lifted him. I'd left him alone on the toilet. The nurses at the Hospice wouldn't have done that. Basically I'm not a nurse. And he needs a nurse all the time, preferably two. Again I thought I'd handle it, and I didn't.

I'm afraid he won't be coming home again. Perhaps never again. He was glad to go back to the Hospice this afternoon. It must feel a lot safer. But I am so happy we made the dinner party last night. 

At the moment I am dealing with a roller coaster of emotions and not least deep grief. But my huge relief now is having let up on responsibility and decisions. For the first time in my life I am pleased that others are taking control.

After the party

Beautiful flowers from our even more beautiful friends 

DOCTOR CLOONEY

Beautiful orchids from Irish friend Addie - my brother from another mother. My sista from another mista. I couldn't believe it when this decoration suddenly appeared at my door. Well, no. Trust her to send us flowers. 

Sometimes people ask me in disbelief why there is nothing that can be done to cure my husband's brain tumour. They are adamant there must be something - "why don't you just insist upon another operation to remove it?" "Why don't you demand that new medicine they've been researching in Sweden? I've read that others are getting it!" "Don't listen to the doctors, question them, challenge them!" This is all directed at me.

The other day I had to go through his entire illness with two of his best friends - the diagnosis confirmed to us after surgery in October 2013, the prognosis, the type of tumour. It surprised me that they hadn't caught on to it all before, but perhaps there's a sort of denial involved here.

My husband's brain tumour is called Glioblastoma, one of the most aggressively malignant cancer tumours there is. It occurs only in the brain and has not spread from any other part of the body. Medical research has not yet been able to reveal the cause. It's not hereditary, it has nothing to to with lifestyle or diet. It can hit anyone, but is most common in men between the ages of 50 and 70, less common in women. It is basically a rare disease. The average survival from the day of diagnosis - with radiation and chemotherapy treatment - is 12 to 15 months, without any treatment it is 4-5 months.

Today - February 1st - we count 15 months and 21 days since my husband's surgery.

Surgery involves removing as much of the tumour as possible and then keeping development stable with treatments, but sooner or later it will start to regrow. The doctor at the post-op meeting described it as an octopus with tentacles that wind their way into all parts of the brain. This is what has happened to my husband now. The tentacles have now attacked the visual cortex and have made him blind. The tumour, which is on the right side of the brain, pushes his brain leftwards and thereby paralyses the left side of his body - his mouth droops that way, his arm is useless, and he can't walk properly with his left leg, but drags it behind him.

This week everything took a turn for the worse. I can't believe how quickly changes appear now. Saturday a week ago we were at a friend's house for dinner, this Saturday we couldn't have made it.

The eye specialist we saw on Tuesday merely said: "There is no more functionality in your eyes. The pupil activity is gone." Then on Wednesday was the monthly appointment at the radiation hospital, to decide on a new round of chemotherapy. The doctor said: "No more chemo. It's useless and might do more harm than good at this point."

I made a praying gesture behind my husband's back - PLEASE. I saw my husband's disappointment, and he said: "What will I set my hopes on now?" Hope is important - until the very last. Even if it's mixed with an element of denial.

So the tall dark handsome doctor - who looks like he comes straight out of a hospital TV series - said: "Ok. Another round of chemo it is."

At the end of the session with Dr Clooney and the lovely nurse Julia I mentioned that my daughters had been on to me about getting some help. Another stay in a Hospice, home carers and nurses. I have refused up until now - perceived it as a bit of an interference really. How can they manage better than me?

Oh wow. My remark started a landslide.

The doctor said to me: "You are unique. I have never seen anything like it. You do the work of a team of nurses." To my husband he said: "Your wife is one in a million. Anyone else would have sent you to a home, or a hospice, or had nurses in - a long time ago. And your family! Those daughters of yours. You must have done something right!"

I bet Dr Clooney says that to all the girls.

We keep receiving aid stuff from the municipal office. I call this our stripper pole. My husband wonders if he's meant to put on a show, especially considering we have no curtains yet. (It's supposed to be grabbed so that he can raise himself out of bed).

Well. On arriving home I simply sat down alone - and whimpered. For a few minutes. Then I rang everyone there is to ring - Hospice, home nurses, the lot. 

End of story - the nurse has been here Friday, Saturday, today. And she's coming now, in just a few minutes. This was long overdue. 

I need to let go. I need to give up my huge sense of responsibility and control. I need to learn to receive help. 

Perhaps now my husband and I can be a couple again. Now that I don't need to be his nurse 80 per cent of my time and the nasty girlfriend the remaining 20.

Granddaughters have stayed for three days. Getting up at 6.30 and driving them to school… well, I deserve a medal for that….

Driving them to school in darkness and picking them up in almost darkness at 4.15 pm. But we're getting there - the days are longer now.  

Beautiful porcelain candle holder and old fashioned candy (also known as Dr Clooney's Remedies) for my husband, from brother Harald and sister-in-law Tone when they visited the other day