It was another very social morning at St Mary’s, what with visits from the hospital educationalist, followed by the physiotherapist, the dietician, the occupational therapist, the nurse with various medications, a plain old doctor, Kate who will now do lessons with Isita every day, and my mother, who brought lunch.
Isita was in her element with all the callers. Although her blood counts are low and she is clearly consuming huge amounts of energy dealing with the chemo (The reason for her weight loss), she looks very well. In the late morning she started a blood transfusion which has left her looking and feeling much more bonny and rosy-cheeked.
The business of feeding her up continues. Just before I left in the early afternoon, she tucked in to a ‘fortified’ ham sandwich i.e. spread with about an inch of margarine. Unfortunately I think she is like me. Nothing she eats can make her put on weight.
We hope she might come home tomorrow, and on the face of it, she is well enough. But it looks like the lab has lost her blood samples. They retook them this morning. This will keep us in for the whole extra day.
Both Marta and Isita slept well at St Mary’s last night. After antibiotics, Isita no longer has a temperature, ate a good breakfast of weetabix, and has since been holding court. Rosie was in this morning, then Kate, her former nursery school teacher who is going to be helping with lessons, and then Aude with lamb pilaf.
The docs are doing some blood analysis to see if Isita needs a transfusion. They are also checking her weight which appears to have fallen. We are hoping it is an error in the scales. But it could be that despite our best efforts she isn’t putting on weight. Whatever happens she will be in hospital tonight and all of tomorrow until they are sure she is OK.
After several days during which it has been almost possible to forget about the wretched lump in Isita’s stomach, she has had to go back to St Mary’s Paddington. This evening her temperature was nearly 38.5 C. This is above the level that the doctors want us to take her back into hospital to administer antibiotics and to ensure that she has not suffered an infection on her Hickman line (the wiggly).
It is hard not to be dismayed about all this, particularly at the end of a comparatively easy weekend. My brother Benjamin and his family came to see us yesterday, bringing a late Christmas present for the whole family – a swingball set. This is something else for Isita to look forwards to as soon as she is more active. The past days have also been enlivened by the visit of Marta’s cousins Sole and Belen from Spain.It was only this afternoon that Isita started to look a bit peaky, although she has been complaining again about pains in her stomach and hip. After lunch she was well enough to take a ride in the buggy (lent by Christina) up Portobello Road, where we got her passport photos taken. They do say, that if you look like your passport photo you are not well enough to fly. In Isita’s case this is literally true.
The community nurse who came this afternoon said that the effects of the chemotherapy often start to show after about a week to ten days. This is why Isita’s haemoglobin count has fallen over the past few days. If it goes much lower, the nurse said that a blood transfusion would be necessary. Her low haemoglobin levels mean that she probably also has low neutrophil levels. These are the white blood cells which function as part of the immune system. The nurses have been coming every day to inject Isita with a drug to boost neutrophil production. So in the next few days the numbers should start going up again. If all this means that the chemo is fulfilling its main function, then we should be happy.
Isita is enchanted by a soft purple bear, complete with golden wig and tiara that sings the hit song from Disney’s Tangled – ‘I see the light’. She has been singing along to it in bed for the past hour.
This gift came this afternoon in a large box from my great friend Amine, his wife Dorota and their son Kyle. What makes this more impressive is that Amine has been unjustly detained by the Algerian government for more than four years. Dorota, here in London, is fighting hard for him to be allowed to return home, with little support from the British government. We are very touched that in the midst of all their own difficulties they have had the time to think of Isita.
We are loving having Isita back at home. She is a bit under par first thing in the morning, but otherwise on great form, and eating pretty well. We had a chatty lunch with my mother and then she had chocolate cake this evening – a belated birthday celebration for Marta.
We have had to sort a lot out: medication, appointments with the community nurse and so on. I even managed to get on my bike and go to the office. By the time I came back our wonderful friend Christina had completed a true Mary Poppins style tidy-up of the children’s rooms.
We are in a minicab going home with Isita right now! She is in good shape (asleep on my lap, the darling).
The first course of chemotherapy is now done and the results of the MIGB are back. As expected the scan shows the cancer elsewhere in Isita’s bones. That is why the lengthy and intensive course of multiple therapies has been prescribed.
Isita could leave hospital as early as tomorrow but more likely on Wednesday. The main concern of the doctors is that she should eat. It is vital that over the next 2 1/2 weeks she does not lose weight and if anything she puts it on. Otherwise they will have to reduce the amount of chemo they give her next time and they do not want to do that.
On the ward round this afternoon, the doctors are very clear that for the time being all our concepts of healthy eating must be abandoned. She must consume calories in whatever form they take.
So when Mrs Millen, Isita’s teacher from Pembridge Hall arrived this afternoon and found her reclining on the bed, elegantly dropping the last chunk of a chocolate Bourbon biscuit into her lips, it was on doctor’s orders. Not something you could say very often.
Mrs Millen came laden with presents from the class, including a fabulous china fairy. She was impressed to hear that over the past two days we had cracked through Sally Gardner’s Operation Bunny – a proper novel no less with very few pictures. It is a beguiling yarn and the fairy theme helps. Until we tried her on it, Marta and I hadn’t realised she was old enough – more fool us.
The chemotherapy continues. Isita is doing well and not complaining of pain, although we don’t know yet if that is the treatment or just the painkillers. She had a bit of fever but that has now gone. The biggest struggle is getting her to eat. This evening she had salt and vinegar crips and some mango.Whatever works.
Meanwhile, Marta and I are eating fantastic creations for every meal thanks to our lovely friends. It is very comforting, we have no words to express how much it means to us. Also, thank heavens we don’t have to rely on what the GOSH canteen produces. The hospital’s Rolls Royce standards don’t extend to its cuisine.
A friend with experience gave me the useful tip that the halal menu option is always better, maybe because it is also prepared for other more exclusive patrons. But even Gulf princes will not been eating as well as us.
As my cousin Iona and Marta’s cousin Asunta were both here this morning, Marta and I took a good walk around the edge of Coram’s Fields and celebrated her birthday in a coffee shop. It was the first time we have had to ourselves in about a fortnight.
The first 24 hours of treatment has gone well. The nurses are pleased. They have administered some longer acting painkillers which are working. Isita has not suffered any bad side-effects so far – it is of course quite early for that. She has slept a lot, and does not have much appetite, but she is cheerful, chatting with the nurses and giving them the benefit of her wisdom.
It is remarkable how she has adapted to the inconveniences of having a cat’s cradle of tubes attached to her body via her wiggly. When she gets up to go to the loo the whole stand with computers and bags of medicine goes with her. We have to unplug five power cables. Each machine omits its own emergency klaxon, and a small procession marches round the bed. The cacophony continues until Isita is safely back in bed, and the electricity supply reconnected. She puts up with this palaver stoically.
I was with her last night and Marta is there tonight. We are getting a feel for how the shifts should work between us. Also, Isita’s godmother Tia Asunta has come over from Frankfurt. It is Marta’s birthday tomorrow (Sunday) so she needs a treat.
Treatment has finally started. They connected Isita to a complicated array of computerised syringe drives at about 6pm this evening. She is now sleeping very calmly.
It is a relief to have got to this point, even though it is the start of a hard road. Our immediate concerns are, of course, how to deal with any side-effects. We also hope that the treatment, as well as being effective, will quickly remove the pain that she had endured the past couple of weeks.