Linda’s Weblog

A quiet day at home, early slight snow followed by grey skies and drizzle and then snow drifts again. Routine tasks: bank checks, sorting national insurance, tidying up and watching the Hutton report live on TV followed by Prime Minister’s question time.

Today is the second go with Calex: no signs it has been effective so far but may be it is slow acting. After this more treatment of an experimental kind if she can stand up to it.

Positives: two better days, a walk outside and within the hospital; less nausea and vomiting; determination to face more treatment, not giving up yet…

Emma has had a couple of relatively good days and is about to have more chemo. In bed yoga seems to have a great effect. She has also been off the TPN lines for a few hours and been able to walk outside for the first time since new year. The photo with the baby was on one of her really bad days so she showed great strength in being able to do it at all. Another change is her wish to pursue more treatment no matter how experimental it might be. So she is determined to rally herself and press on. I hope the treatment does not overwhelm her completely.

On January 21st Emma Thérêse Candy met Emma Louise Ham Edmonds: not much talking but communication of another kind. Baby, all 7 lb 4 oz still curled in neo foetal position, and oblivious to the excitement around her. Dark hair and very pink. Emma’s face so tight with pain.

The very same evening we had a meeting with her doctor and the palliative care specialist at the hospital and the message was for the first time spelt out: no hope of a cure and that symptom control was going to be hard. She continues to suffer severe discomfort, nausea, vomiting and pain and it may not get any better. She is being extraordinarily brave. There will be more chemo to give it a final shot but, as she says, it is clutching at straws. She has started to prepare herself.

We are working on what to do if she can be given some kind of stability medically: Home nursing with hospice visits can be arranged. For the moment she needs intensive nursing and new problems arise each day. She may die of a sudden infection.

Making her house ready just in case it will be possible to have some time at home and be nursed there with support from a hospice. It seems a fond hope somehow.

Her good humour never leaves her but she is becoming firmer about what she wants and who she will see. She is frustrated about not feeling good enough to do anything useful. Getting out for two hours to see the new arrival was a terrible struggle but she was so pleased she managed to be the first visitor. A yoga session in the hospital bed and she then had a much better day.

Tomorrow we hope to see Emma’s doctor. She is worsening by the day. Yesterday it was oedema and now infection and so the ordeal goes on.

And now from the silence in East Dulwich, there are signs of life.

We have had advice from another consultant. He says the oncologists may now need to pass treatment over to a palliative care team. He said the trouble with ovarian cancer is that the tumours press on the bowel, which causes the problems that Emma is experiencing. As far as sickness goes, palliative care doctors sometimes have trouble controlling this in ovarian cancer but probably fair better than the oncologists.

Emma had another scan. The tumours have grown. This means they are not responding to the new chemo. Her doctor says he has not given up but his options are diminishing.

So there it is. Hope is slipping away.

The Hickman line is a conduit for a potent concoction, all white and resonating goodness. Still too much pain through severe distension in the abdomen. Suffering is a long drawn out day and night process with tiny moments of relief. She is surprisingly alert and the disease gallops away. A gentle back massage deceives the pain detectors as she puts it. So we do that. Every time I touch her there is a spark of electricity.

Earlier she had asked to see the unit manager to complain about the lack of cleanliness in her bathroom knowing how infection could strike her down at any time. As soon as she was taken down for a scan, the cleaning staff descended.

Tonight at 8 pm her doctor rang me. The scan shows more ’solid’ (tumour) and less fluid. He was clear: keep treating her actively but the cells have always been especially difficult: I said “aggressive” and he agreed vigorously. What will happen if no response? More tumour, into the bowel, obstruction, into the bladder: no surgery because this cancer engulfs everything. But Ovarian does not invade the brain, lungs and liver like other cancers: it stays largely in the abdominal cavity. So the chemo is there to contain that growth and make the patient more comfortable. He asks me what our family view about further treatment is. I say go with Emma’s wish: if she wants to go on then do it. He will talk to her about getting through this: to help her stand the therapy, come to terms, talk to friends and family. She does not talk to me frankly for fear of upsetting me.

I am devastated at the thought of losing my darling girl: so feisty so bright, so witty, so aware, so talented and so loving. I had hoped that having had her so young, we would grow old and sit in the sun together. Not to be. No recovery. Keep thinking of all the other parents who have lost their children and wonder if they ever have a whole life again.

When I look again at my words, they do a very poor job of expressing how momentous it all is. Life is in shadow and growing darker.

Emma has had a Hickman line installed but it is not working properly and she is going to have it fixed today. Until it works there will be no TPN- Total Parenthal (?) Nutrition. It also is a means to take in blood.

She is shrinking fast and very weak- no fluid no nutrition at all. Getting very worried. Her stomach is swollen with cancer fluid and who knows what. Our sweet girl is suffering so much.

To keep my mind occupied, I am working on her tax return and trying to work out what to do with future care. We are having family discussions about how to deal with the primary care issues. Also looking into support facilities locally.

I wish I could spirit her away!

So much quiet desperation on the train to New Cross. A place to leave if you can. The old and sick find it hardest.

Emma came home for a few hours today still hitched to her infuser. She sat on her sofabed typing vigorously into her blog. On Monday she will have a Hickman line installed- two channels into a main vein to bring in food and medication and chemo too. She is not looking forward to it but as she cannot keep food down and is slowly starving, it has to be. She is now 55 (from 68 three weeks ago) kilos and going down fast. She is drowsy and unable to read or do anything interesting so her life quality is poor.

This is what she wrote on her blog today.

a short interlude

I am out.
I just nipped out for a morning cos I was so bored.

I have been at the hospital since Jan 3rd.
I did make it to Wales but was poorly while I was there.

I can’t eat for being sick. Waiting for new drug to kick in.
They have attached a little box to me that gives my constant
anti-sickness drugs and pain killers.

On Monday they are going to insert a “line” which goes into my
main vein and means they can feed me.
How gross is that?
blah blah…

Haven’t worked out how to moblog yet.

Sorry for any inconvenience caused….

I can get email on my phone.

Grey and wet outside on the Thames. Inside the bland room Emma is suffering terribly. She is hitched to infusers and drainage tubes and lies desolately on her bed. We are hoping she can come out for the weekend and we can be with her at home. Poor sweetheart is drowsy and still feeling sick They are pumping anti-sickness drugs into her continually but there seems to be no respite.

Terror alerts, USA closed, Hutton, Diana inquest.

Today I read Emma’s web log for the first time: Emma Candy

She writes so beautifully and transports you inside her world. Only it is not fiction. The modern girl comes through loud and clear. She looks for responses from strangers and takes such pleasure in having this contact with the world out there in blogland. Made me feel inspired and weepy at the same time. Also had a calming effect to hear her strong voice still there even amid the horrors she is going through. Feel pessimistic about what is happening but cannot lose hope. An underlying sense of her spirit fighting on keeps me going too. The more she goes through the better she gets. Awful to think that this is how it can be. Makes the business of living so precious and fragile at the same time.