Apologies

For a long silence. But I really have been quite wretched. The pneumonia lingers on. The nausea and vomiting has left me so weak that I can scarcely pick up a book let alone write. And the weakness means I can’t walk or exercise with the result that after three weeks confined to bed I’m now suffering from excruciating back pain.

On the brighter side I am enjoying being totally infantised. A few nights ago I had this surreal experience of complete role reversal between me and my son. As George was trying to put a forkful of food in my mouth, he circled the fork like a plane and said “come on open up we’re coming in to land” which is exactly what I would do to him 33 years ago.

My daughter Sarah reads to me. We’re reading ‘Why Be Happy When You Could Be Normal’ by Jeanette Winterson. An extraordinary tale of triumph over circumstance. The author was born in a two up two down in Accrington with a tyrant of a mother who did everything to undermine her confidence. Somehow she got to Oxford and is an award winning author and OBE.

Nick continues to read me the Maigret thrillers. We’ve read fourteen now. My sister Rosanna is reading me Winnie the Pooh. Last night, we got up to the tale when Pooh, Eeyore, Piglet and Rabbit gang up on Kanga and Baby Roo and kidnap Baby Roo in the process. But all ends amicably and everyone is friends again now. What wonderful timeless and ageless stories.

So, I’m being fed and read to and nurtured and given loads of love from my family. All of which is keeping me going.

On a more serious note, I’ve also discovered to my relief that despite the infantisation, my cognitive faculties are still with me. Sarah and I took three days to finish one game of Scrabble and I won-270 to 250. Although I’m pretty sure Sarah let me win. Nonetheless it boosted morale, which is in need of boosting. Please keep sending your messages and forgive me for lack of personal response.

scrabble pic

What A Night!

Oh dear! It has been a tough few days which apparently climaxed on Friday evening. Between 8pm and 4am I had more doctors assembled in my hospital room than I think I’ve ever consulted in a lifetime. No fewer than four of them wanted to listen to my chest. By the time the fourth approached my bed, I was cross and said “no!” and told her to go and ask the third doctor for the information she needed.

In my drowsiness I remember one of them standing at the bottom of the bed and saying, “you really are very unwell” – which I did not think was very helpful. They were trying to work out how to control the consistent high temperatures along with worrying low blood pressure and a chest infection. At one point the Head of the Intensive Care Unit came to call saying he didn’t have a place that night but he felt that I could move in to the Unit on the morrow. Fortunately,  by morning, they’d agreed a new treatment regime which seemed to work and the panic abated.

The funniest thing about that night, perhaps, the only funny thing that night was when at about 3am the nurses started clearing my room of all furniture and the door opened and a man dressed in white, dragging behind him what looked like a small white house entered the room. It was enormous. Drugged to the eyeballs, I truly thought, I’d started to hallucinate. He manoeuvred it in with some difficulty and the started assembling it. I thought a bedroom was going to emerge and that he was some hi-tech hobo who had to choose a different location every night in which to assemble a bed and lay down his weary head and that tonight it was my turn to accommodate him. But, as the assembling of different parts proceeded, it turned out to be a mobile x-ray unit. It had all the gizmos. When he opened it out there was a little control room for him to sit in, monitors, the lot. They shoved a frame behind my back in the old fashioned way and “beep”, it was done .

It didn’t get that much better until today when I know I’m definitely on the mend. I’m still unable to eat more than five or six hundred calories a day, but I’m much stronger. My neutrophils, those pesky little beasts we talked about in earlier blogs, are rising fast. They are currently over the figure at which I was told I could go home. So with leads leading out of my arm, a catheter and an oxygen feed through the nostrils, when my dour Scottish consultant, Professor Steve Mckinnon came to see me this afternoon, I said to him, “I assume I can go this afternoon?”It’s the first time I’ve made the dour Scotsman laugh. “It’s likely to be another two weeks,” he told me.

Major panic today, my daughter Sarah has given me a purple toy cat. I was clutching her through out the whole stem cell transplant. It’s funny how you start attaching undue importance to such apparently meaningless things but when I came back from a procedure in the bowels of the hospital this morning, Catty as we call her had disappeared. A major alert was put out in the ward and my favourite Irish nurse, Maria, even went to the laundry to check all the bags of dirty linen. Catty was found among my sheets! And she’s lying on my chest purring as my daughter Sarah writes this.

catty

Porcupine On Drugs

Oh dear! My optimism was premature. I’ve been feeling perfectly rotten again over the last few days. Forgive me for not answering your kind comments to my blog. My energy level is simply nil. My daughter Sarah is writing this for me.

The result of my discomfort is that I now resemble a porcupine on drugs. In addition to my PICC line with two outlets which are normally occupied by the immune suppressor and the saline drip then I have two cannular through which no fewer than five anti-nausea drugs are sent to me 24/7 and anti-viral drugs and the other one is used for anti-viral drugs and paracetamol when my fever goes up which is often. Elsewhere my veins are punctured with little holes.

The doctor who came to see me who’s head of the Symptom Management Team agreed with me that this treatment is ‘really rough’. So I fervently hope it will be worth it.

I spend a lot of time gazing in to space. Particularly at the picture of Mount Everest with Tibetan prayer flags in the foreground which is directly opposite me. It brings back so many happy memories. Then I swivel my eyes to the left where I have my pictures of the mountains in Mallorca and a lovely photo of George and Sarah when we were on safari in Tanzania. Again, lots of happy memories.

Next to the photo I’ve got my two crystals given to me by my French cousin, Caroline. The large pink one is meant to take away fear and the white one is meant to cure cancer. I have been mightily tempted over the last few days to put one in each hand and do a runner. And leave it to the crystals!

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Abrupt Change

The gentle period did not last long. On Day Six I was given a dose of melphalan, which, the doctors told me, is a stronger dose of chemo in one input than all the chemo I’ve received so far.

It has been truly awful- nausea, continual vomiting, terrible tiredness but I’m unable to sleep because of the frequent retching.

I was given anti-nausea treatment but at one point the doctor apologised because it wasn’t very effective, saying that was all they could do and I’ve just got to see this period through.

It took four days and long sleepless nights, that was the worst, thinking the nights would never end, watching the clock, two o’clock, three o’clock…

Today, Sunday I feel much better and have even managed to eat for the first time-half an omelette.

The good news is the doctors say the treatment is going according to plan and the transplant went well. It was an amazing experience, I could even see my donor’s cells shaped like snowflakes going through the tubes in to my veins.

Some of the nurses even call transplant day ‘Rebirth Day’ and it is an odd feeling, that I’ve now got someone else inside my body. My blood group and my DNA have now changed. In effect, I’m a new person.

Still feeling weak so my daughter Sarah is kindly typing this for me.

On a happy note, my sister Rosanna has filled the walls of my hospital room with a few of my favourite things-pictures of Everest, penguins, prints of Venice, Breugel, Velasquez and the Dalai Lama thrown in for good measure. I’ve also got a new turban ‘butterfly’ look- this picture taken in what I call the gentle period.

turban gentle

I’m hanging on in there, thanks for all your emails and messages.

Countdon to Stem Cell Transplant

Have been in for almost a week now and the chemo has been quite gentle. I am managing to work on my book every morning, Nick and I go for a walk in Regent’s Park or out to lunch at midday and then the chemo starts at 2.00 and lasts about six hours. Apart from a nasty rash, I am feeling well. All change tomorrow, though, when the much stronger stuff is delivered to prepare for the transplant on Thursday. The bad news is that I am told that one of the side effects will be nasty mouth ulcers and a painful throat. The good news is that the hospital freezer is filled with ice lollies which I am obliged to suck. Sounds good!

Have a new view. A shame it is so cloudy today and not a good day for photo taking but, if you look hard, you can see The London Eye on the right and the Shard on the left.

view july

The staff here have been so wonderful – welcoming me back like an old friend. All my favourites are here – Juan from Spain, Antonia from Portugal, Lito from the Philippines, Maria from Ireland and Emily from Essex. My sister is filling my walls with pictures – I have the Dalai Lama, Breughel and  Velazquez prints and a picture of Diogenes in his barrel with an invitation to enter a caption competition. Mount Everest and Leonardo de Capri to come. A cousin in France has sent me crystals – a white one that allegedly cures cancer and a pink one that takes away fear. (So, I guess, I could just grab them and go home!) And my daughter has brought me a teddy bear to cuddle.

So the stage is set for Day Zero, as they call it, stem cell transplant day. Wish me luck!

A polychromatic day

Spent a wonderful “last” day with my daughter, Sarah, yesterday before my incarceration. It was a day of pampering – facials, manicure and the pedicure I had promised myself. Sarah gently explained that it would be too sad to have ten bright red toes and today’s fashionista  has polychromatic toes – I chose red and then descending shades of pink.

Nails 1I don’t think anyone has ever been better prepared to go in to hospital!Toes

“Packing It In”

In my last blog, I mentioned that my consultant who is Greek and whose use of the English language is sometimes uncertain had urged me to “pack it all in,” which I had interpreted as an encouragement to do as much as possible before weeks’ of isolation. One of my friends has kindly pointed out that he could have meant the complete opposite – i.e. to cease all frenetic activity and take it easy for a while.

I have preferred not to go back and ask him quite what he intended to mean but to interpret it my way and so it’s been a busy week. My report on the suffering of Yazidi women went out on Newsnight on Monday and since then it has been non-stop with more TV and radio appearances on this sad story, another appearance on the Victoria Derbyshire show about my sad story, a trip to the West End to see Anthony Sheer in Death of a Salesman, which was terrific, and an evening in Regent’s Park last night for a picnic and then “Seven Brides for Seven Brothers” at the Open Air Theatre which was very jolly and ideal for helping me momentarily forget what lies ahead. 1680749449[1]

About half way through, it started raining. Nick kept looking at the weather app on his phone which said that it was not supposed to rain until 5.00 a.m. and refused to believe it until he got so wet that he was forced to go off and buy us all ponchos. No one had excepted rain (because all our apps said it wasn’t) and so the poncho seller, at £4 a go, had a good night. The entire audience was rigged out in his yellow, blue and pink colour range by the second act. We all looked very comical.

Now I must face up to packing and preparing to go in to hospital. My daughter, Sarah, is spending tomorrow, my last day of freedom, with me to help. We plan to begin by having a manicure and pedicure before we start filling crates full of books, laptop, DVDs and CDs. I have decided that the sight of bright red toes sticking out from the bottom of my bed is exactly what I need to cheer me up and all who will be attending to me!