Linda’s Weblog

Emma’s birthday party at the Café Kick in Shoreditch. She is not disappointed by the turn out as she feared and has a great time surrounded by friends. They are there in force and she loves them for coming. The whole day is passed at high level of tension and excitement. Had she not had her blood transfusion on the Friday she might not have been able to keep going.

The discomfort in the tummy is growing and looks more swollen than last week. She fears the new drug is ineffective and notices that her hair is still intact and now growing back on her legs: she fears this is a sign that it is not powerful enough. The booster injections for white cell count were given over five days last week but at the end of the week her haemoglobin was so low they called her in for a three-bag dose of blood.

The new baby is only six weeks away. This happy expectation side by side with the suffering that Emma is going through is sometimes hard to bear. All the pain, injections, blood taking, chemotherapy onslaughts, gut wrenching fear and emotional torment. And yet she is still full of humour and her bravery shines through it all. Always smiling wherever, whatever…

The first full day of President George W. Bush’s visit. No members of the public are allowed to come close. The noise of helicopters hovering overhead as the massive demonstration against the Iraq war makes its way from Malet street down Holborn to Trafalgar square and Whitehall.

Emma goes to St Thomas Hospital for an appointment with a psychiatrist as a first step to counselling. I meet her at London Bridge Hospital for the injection and then we shop for her birthday. We spend the first part of the evening in All Bar One drinking Sancerre. She takes me through the hour and a half of telling her stories and the woman reacting in a surprising way- by which she meant as a normal human as distinct from professional person. She says she wants someone to whom she can speak without fear of hurting and frightening them.

She leaves before me to meet the boyfriend who has come to stay. When I come back later, she is upset and he makes it clear I am not welcome. She asks me to go somewhere else to please him. I feel devastated and prepare to go and then am reprieved. I stay wakeful all night wondering what to do next.

Back in London and dreary New Cross. Today the state visit of President Bush begins: he is guest of the Queen and the security is phenomenal.

This week she has a daily visit to the hospital to have a booster injection for her bone marrow. She seems resigned and more tired than before. She says that the chemo cannot be doing much good as she is bearing up so well! A funny kind of logic but understandable:a young person has a highly active metabolism and plenty of renewal in the cells and the cancer has the same environment to play in: strong constitution, equally strong cancer. We know this beast is aggressive and the build up in her abdomen is evident. She expresses her fears calmly and with no hint of self pity. I stifle mine in the quiet of my room but they surge wildly and overwhelm my best efforts especially in the interminable hours of the night.

I am writing this on the train to Sheffield. Emma is determined to go to the fifth and last chemo for this round on her own. She is standing up to it very well: any one who did not know would think she was a picture of health. Lots of jokes and clarity about what she wants from her treatment. She seems to be facing everything head on and all at once. Her outward calm is remarkable. The pottery and painting classes seem to be the right balance of struggle and satisfaction. She has always been artistic but has not spent much time on making objects since going digital.

This morning before I left, she talked about her fear of boredom. This is a hard one as she thinks that work offers something there but knows it is not enough really. The problem is to find another way of achieving daily satisfaction and ridding herself of the fear that she will wake each morning and find it difficult to stir herself into action. She is in limbo at the moment not knowing if she has any time in the future to care about these things and if she has, how much will it be and what will she want to do in a limited time frame.

A routine visit by now: we arrive at 10.00 am. Emma was so relaxed she had forgotten to take her pills the required 30 minutes in advance so that delayed the treatment. In any case we were out by 12.00 picking up new pills on the way out. From there she bussed direct to life drawing classes and I went home to clean, pack and wrap presents.

Yoga in the morning for Emma while I deaden my senses on domestic chores.

London Bridge Hospital for 1 pm. First chemo, then consultation.
The specialist is a quiet and undemonstrative character quite unlike the previous one. Her reaction to the chemo is so far so good he says and no more. It seems pointless to press him further. He checks with her that she cannot and does not want to return to work right now. Confidently completes the insurance form and she relaxes a little.

We shop in the Hays Galleria for hats and toothpaste. She buys a crazy pink woolly thing with mock Scandinavian plaits. I buy a red sparkly Xmas scarf.

She is quite stable, slightly tired but less so than yesterday. The initial nervousness is over and a routine is established. I provide the food and comfort and keep her focused when it seems right to do so. The only hesitation is the thought of having daily booster injections to counter the chemo effects on her bone marrow. These could be self-administered but she is reluctant to do that. Tomorrow we will hear when it will start. The doctor thought it a good idea given the previous history. The sister at the day unit remarked on how much more relaxed Emma was since changing consultants. That was certainly the case today. It hardly seemed possible that we were in the middle of a hazardous regime of voluntary poisoning! The optimism has to be cautious but it nice to feel it at all.

Shopping in Oxford Street for clothes in the morning and suddenly at 11.00 am everything stopped for two minutes silence on this Remembrance Day. People stand staring into the distance or pause momentarily and then move on shiftily daring to break with the common cause. While we remember the long lost dead, Emma shapes pots at her class all morning.

I take the 453 bus back to New Cross and then we train it to the Hospital for Chemo Type 2 Round 1 second infusion at 2.00 pm. We come home mid afternoon, more sleep, hair wash and then pasta and pesto with salad. An alarmingly normal routine in a chemo driven life.

We go to London Bridge Hospital today. Both were wakeful all night. Slept after 4.30 am until 8 am. The routine is familiar but with new drug and a shorter time as it is given daily for five days.

A mild grey day without rain. Afterwards we come home to rest. Instead of my planned shopping expedition I sleep for four hours. Cook tea- steak, mash and salad. Emma is tired but feeling good considering. The steroids and anti-nausea work well. Constipation is the main problem. Lots of dried apricots and prunes but no visible effect.

For a short period we have heated words brought on by a quick sortie downstairs where she makes a half-hearted attempt to get to grips with her clear out. I am upset hearing her harsh words and she is angry with me. I am doing things she does not like but she still wants me to help. I feel her resentment of my ham-fisted good intentions.

Slept hours last night after dinner and too much wine and food at a nice restaurant in East Dulwich. Awoke to the sound of the remembrance ceremony at the Cenotaph in Whitehall on the radio.

Em is happy to have me here. I can tell by the amount of gentle teasing I am getting. We are pottering about together very nicely. Had a quiet day today ready for the new chemo regime tomorrow- once a day for five days. She is nervous but, as usual, ready to face it.

It is a miserable grey day and the environment is dull and dirty and full of angry people. Such a contrast to Sydney.

Yesterday bloods and a massage at London Bridge Hospital while I shop in Borough Market and Hays Galleria. Her house is more liveable but still too small and lacking in storage so that the downstairs is not yet a working space for her. The painted walls upstairs and the new blinds give it a cared for feel and the heating can be improved as we discovered. Still lots to do: listed them already! But the time to talk slips away. A form she has to fill in for an application for a sickness pension. Boyfriend due to arrive sometime but not yet specified.

I walked along from New Cross Gate to New Cross station. After dark people are rushing home, past heaps of shop debris, filthy pavements, loud unforgiving traffic and people, some with desperation, some with anger and danger in their eyes: ‘I will see you hang’, said one, ‘Yes you!.” Who? Me? Everyone? It did not matter. A world of fear and loathing. Only here 24 hours and the stark reality of a hostile city comes home. At the Natural Health Centre I am ignored and find that the therapist did not know I was expected or waiting for her. Try again today. Emma is sleeping late after a late night out with friends. Some kind of normality at least.

Nest week on Monday 10th November, the new chemo regime starts: she had a CA125 of 46 last time, and no treatment of any kind since then. A gap of four weeks now due to a delay brought about by the consultant’s absence. This means the tests yesterday may show an increased CA125. She has a cold and is tired and weary before it starts. But she still has an occasional pink glow in her face and the eyes are as bright as ever. Signs of an underlying strength there that sees her through this hell.

The drug is Topetecan and the lesser of the two evils as far as side effects are concerned. It will be administered daily for five days and then a gap of two possibly three weeks until the next one. She opted for the daily administered one anticipating a faster course before Christmas but that may not be the case.