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6th October 2006

Tamoxifen or Arimidex?

I returned to work part-time for the first couple of weeks then gradually started to augment my hours so that I was in by 10 am most days and working on all five days of the week by the end of September. Some days I was very tired and became increasingly irritable at home:house work was no longer a chore, it was a burden. I began to resent it in way that I had not experienced before. All this at a time when Bryan was building up to his busiest time of the year at his school and with Opera bookings. I was on my own with the children some week-ends and began finding it difficult to replenish my energy reserves. I became depressed at the thought of returning to the sort of treadmill existence I had prior to my diagnosis. Still, life is a series of juggling acts and in that sense our household mirrors countless others in the country. I was soon distracted by the looming prospect of the fourth and final part of my treatment for cancer. A hormone-based drug is often prescribed for five years and even though it is potentially life-preserving medication it did not appeal to me in the least.

At an earlier discussion with the oncologist two drugs came up in the conversation Tamoxifen and Arimidex. My cancer had been oestrogen and progesterone receptive this means that the tumour was being encouraged to grow by these hormones that I was producing. Some people who are diagnosed with cancer are offered Herceptin as this is a drug more appropriate to tackle a type of cancer that is evidently different to the one I was diagnosed with. However as this was not relevant to me the subject did not come up in discussions. I had to choose between Tamoxifen or Arimidex. Each has side-effects, some less pleasant than others but both seem to be well-tolerated by patients. They both also appear to have a very good track record where long-term survival rates are concerned. By long-term survival I mean five or more years. I reflected on my own circumstances. As chemotherapy has induced what appears to be an early menopause I wondered about the efficacy of these drugs as they work to counteract the production of oestrogen and progesterone. But hang on a minute. If I had little or no oestrogen or progesterone being produced by my body, why take the drugs?

Hair again

During late Summer as the wretched side effects of the chemotherapy began to wear off, my hair began to grow back. Slowly at first and then by the end of September I had a full enough head of hair to wave good-bye to the wonderful array of scarves I had been wearing since February. Also, just before I returned to work I took a particular interest in chemicals. All sorts of chemicals are added to our foods, creams, soaps, shampoo. Most are harmless enough however a couple of people I have spoken to have pointed me towards articles that suggest parabens may not be at all good good for us humans. I type the word into a search engine. Almost three million entries come up and the first two I come across make uncomfortable reading. I search for a shampoo that does not contain parabens (which incidentally has not been proven to be toxic) in some form or other and it's virtually impossible to find one that is parabens-free. In the end I find a website that sells what appears to be chemical-free shampoos, soaps and all sorts of other eco-friendly products : www.naturalcollection.com I order a big bottle of their Rosemary shampoo and conditioner. I am using such small quantities I can can see it will last a long time.

A bit of luxury

One of the possible side-effects of Arimidex is Osteoporosis. The oncologist and I agreed it would be a good idea for me to have a bone scan. If my bone density is low then this drug would be less attractive than Tamoxifen. We agree to revisit my choices once the scan has taken place and we have the results. In the meantime, and to take my mind off the prospect of long-term drug dependency, I decide to cash in a generous voucher for a facial in a posh beauty salon.The voucher had been given to me by friends who work at OneVu, the online billing company www.onevu.com The OneVu business team used to be located on the same floor as Voca's marketing department. That's how I got to know most of them although I never did fathom what they did tapping away at their keyboards all day. Perhaps they wondered the same about me? But they were friendly enough and we shared cakes a few times and chatted during coffee-breaks. Anyway, shortly after I was discharged from hospital I received the beauty voucher from OneVu. A thoughtful and sweet gesture. I decided to wait till most of my treatment was over before I went to the salon as I wanted to make the most of the experience. I made my appointment, put two hours worth of parking money into the metre and arrived at the salon with ten minutes to spare for my appointment. Relaxing music was being played on a CD: a cross between Tibetan monks singing and Indian music. Every now and then I heard wind-chimes as doors opened and radiant looking women emerged. I felt I had come to the right place. After a while one of the beauty therapists asked me to complete a form and appeared to discuss it with a colleague - I wondered if the medical section was the subject of their conversation. I was shown to one of the therapy rooms and before long warm, heavenly scented towels were gently pressed onto my face. As I lay on the table I knew that for once this treatment was removed from all things medical and that only gloriously scented lotions were going to be put onto my face. Then, my ear lobes were massaged. You know you are in a posh salon when your ears get a massage. I said nothing of course and lay there as if it was the sort of thing that had happened to me before. A facial scrub followed, cooling water was sprayed on, more soft towels applied. A face mask that smelled of cucumber was put on and washed off. I was left to doze for a bit and then sprayed again with more water. Hadn't anyone told them there was a hosepipe ban in the South East? Eventually it was all over and I left looking more or less the same as I did when I went in - but I felt wonderfully relaxed and happy.

Decision time

The appointment for the bone scan came up and it turned out to be a relatively stress-free experience unlike the CT scan and MRI which I can now see I was badly prepared for. The CT and MRI scans could have shaken my belief about my life expectancy. I remembered how, when I was putting on a brave face in November 2005 , I was a quivering wreck as I climbed onto the tables that hooked me up to machines that would reveal exactly what was going on inside. However the bone scan was uncomplicated and all that was asked of me was to lie still. And as I lay still I knew that I was cancer free . A much better state of mind than the previous year.The results came back relatively quickly accompanied by a note from my oncologist which showed my bone density was normal. I could take Arimidex if I wanted to. I then started to research the side-effects of both drugs in more detail: I found the following cancer charity websites helpful:


http://www.cancerbackup.org.uk

http://www.breakthrough.org.uk

http://www.breastcancercare.org.uk

But perhaps the most useful place was the National Institute for Clinical Excellence www.nice.org.uk. I trawled through the reports on the drugs I was being offered and the phrase "no statistically significant differences in overall survival rates" came up quite a few times in groups of patients that had taken these drugs. It was becoming clear to me that I could take these drugs for a period of years and be no better off than someone who had opted out of the drug regime. I was at then of this cycle of treatments and felt decidedly over treated. For all I know the surgery may have been all that was necessary, the chemotherapy was probably a good insurance policy and I remain unconvinced about the radiotherapy. Then there were the actions I was taking; less dairy, less red meat, more vegetables and fruit, more water, and juicing to name but a few.

I went back to see the oncologist and for once I did most of the talking. I went through with him the information that was influencing my thinking. My tumour had been removed, so had my breast and all the lymph nodes under my left arm. My body had stopped producing oestrogen and progesterone and I was limiting the intake of these hormones through my diet. He nodded quietly. I then asked him about what improvement in survival rate I could expect by taking of either of these drugs: he responded " between two and three per cent ". This was entirely consistent wit the reports at the national institute of clinical excellence . If survival rate percentages had been supplied to me in double figures I may have reached a different conclusion. However my mind was made up. I don't think I need these drugs. My view is that they will do me more harm than good and that I am better off without them. The oncologist responded by saying in light of the treatments I had been given this was a reasonable course of action for me to take. He added he was not worried by my decision. I smiled and stood up, we shook hands and I left the consulting rooms at the hospital. As I was driving away I noticed some rose bushes bathed in autumn sunshine. The colours of the flowers were surprisingly strong and showed no signs of fading.

The Song of the Salamander

I wondered how my legs would cope with the walk I had planned. Certainly it was modest by most people's standards: just a few miles, but it was more than I had walked for months.Then on the news I saw footage of Jane Tomlinson's ride across America http://www.janesappeal.com/bio.htm and was completely humbled by what I saw and heard. Jane has advanced metastatic breast cancer, the disease spread is extensive. The disease was diagnosed incurable on the 31st August 2000 and Jane's ride finished on the 6th anniversary of the date. Jane’s prognosis was for her to survive six months. This woman has had four courses of chemotherapy. One course of chemotherapy has left me weak and feeble but to have to withstand a series of them is beyond what I can imagine. Jane's achievement is extraordinary and she is an inspirational individual, a beacon of hope.

Writing about my aches and pains seems trivial in comparison to what Jane Tomlinson has endured however there's no doubt my body has been affected by the drugs. How long it will take to shrug off the after effects is anyone's guess. The soles of my feet and joints ache as I get out of bed, but these sensations diminish as I move about. I feel less able to carry heavy bags of shopping from the supermarket. I could order the food on line and get it delivered but then that would rob me of the need I have to smell the fruit, feel the texture of what I am buying, check the freshness,and choose food produced as close as possible to where I live. Also my periods appeared to have stopped and while I do not miss the monthly rush of hormones I cannot help but feel a loss. Of what exactly I am not sure. On the plus side I no longer feel the need to swing for someone if they annoy me at 'the time of the month' - so overall suburbia is a safer place.

The day of my walk dawned and I made sure I completed a warm-up routine with my fellow walkers from the office. We were all walking relatively short distances apart from Arsalan who agreed to walk 11 miles to his home from work. I walked a much shorter distance ( just over three miles) to my friend Mark's house as my joints ached a bit during a few practice walks. I thought it was better to err on the side of caution. Two of Mark's children came on the walk too and it was good to be able to accompany Arsalan for part of his journey home. The other members of the team
(Emma and Liz) finished their walk in good time so overall the event was a success. To date we have raised almost £700.00 for Watford New Hope Trust. It's such a simple idea and I will see if I can repeat the exercise in the future.

September has been a busy month full of birthdays and wedding anniversaries. I do feel lucky to be able to join in as, although I have always felt confident about my recovery, I was never certain what each medical appointment would bring and how I would cope with chemotherapy. I think of Jane Tomlinson. In the not too distant future more and more people will be saved by kinder and more effective treatment for cancer. If I could have anything to do with it I would put Jane at the front of the queue. Sadly new treatments being tested at the moment such as gene therapy remain inconclusive and may not arrive soon enough to protect Jane. More's the pity.

In the meantime my life seems to be gradually retuning to normal. I am back at work part-time for the next two weeks and will move to full-time with one day a week working from home. I am lucky to have a supportive employer such as Voca: I am not under pressure to return before I feel ready and have been given time to recover and feel well. Others in my position are not so fortunate. During the day I have been finding simple tasks such as opening and answering emails, filling up cups with water to drink at my desk, having meetings and progressing with the corporate responsibility programme at work quite comforting. For a while, I can forget what has happened. Another huge benefit this year has been a closer involvement with the children and generally being at home more. I have felt more like a parent and learnt so much from other parents which will benefit the children in the future. This has been a welcome distraction from all things medical. Or so I thought. My mind appears however to have been dwelling on something which has manifested itself in a recurring dream. Usually I struggle to recall details of a dream: the content evaporates just as I wake and begin to retrace the sequence of events in my mind. But this recurring dream is different and remains a source of fascination for me.

The dream always starts the same way. Dozens of us are swimming furiously away from a hungry predator. Don't ask me how I know this, but in the dream, I am a small aquatic animal. From the colour of of my limbs and the markings on the others swimming so hard with me; it looks as if we are newts. It would have been more satisfying somehow to be reincarnated as something higher up the food chain, but, there you have it. Going back to the dream and the pursuit I am swimming as if my life depended on it and having, it seems, to work harder than the others being hunted by this larger animal. Every now and then something really shocking happens: the predator opens its mouth and snaps off someone's limb.The howls of agony pierce the water. Amazingly I am aware this has already happened to me as I can see I am missing my front left leg. I understand why keeping up with the main group of swimmers has been tough. Eventually, we lose the voracious killer. We slow down as we reach the pond weeds and stop to assess the wounds inflicted by the attacker. A number have lost one or more limbs, others, the smaller ones, are missing altogether: eaten alive by the cruel monster. What to do? No words are exchanged and instinctively we swim slowly to see Sal. Sal is the largest of our kind and came into our waters with the new rains. Sal is a salamander and it is not long before he starts to sing. In a tenor-like voice his calming song heals:

" Don't be afraid, you are out of the storm.
You will re-grow, you will re-form."

And that is how I realise I am dreaming and that it's not for real. But after the scary experience with the killer, floating gently and listening to Sal is wonderfully relaxing. Then, as if by magic, the stump on my left side begins to extend itself. Sal continues to sing and passes by each of us repeating the healing words. My joy is palpable and I begin to swim, slowly at first, around the weeds with my limb fully restored. I always wake up elated and the first thing I look at is my left arm. It looks remarkably similar to how it looked before I fell asleep. Tanned following a very hot July with an obvious paler part where my watch strap has been fastened to my wrist. The dream is not really about my arm and this is the bit where reality kicks in rather quickly. I look along my arm to my left shoulder and then across to the left side of my upper body and see an area damaged by surgery that has not re-grown. With everything else that has been going on I have not really understood a deep-rooted need to restore my appearance to how it was. More than once, I try to fall asleep, desperate to re-join Sal and the others. If only Sal had the power to heal me after I metamorphose back to my human form. I do not know how exactly I can restore my shape or whether I will have the courage to do what it takes. For the first time in almost eight months I think of my surgeon.

Sunday, 27th August 2006

A break away from it all

The surgeon, the nurses, the oncologist and radiographers have of course been giving me life-saving treatment; they have also been prodding and fiddling about with me in one way or another since November 2005. So it was with some relief that I looked forward to August. No medical appointments till the Autumn. No more fiddling about for a while. In the meantime, I have started to go into work more frequently and have a planned return date on the 18th of September. One of the small projects I have undertaken is a return to some form of personal fitness and have set myself a small goal: a sponsored walk for a homeless charity that I and others at work have supported in the past. Watford New Hope Trust is a charitable set-up that helps homeless people off the streets into community homes with the aim of helping them adjust back into a more normal way of life. Just Giving is the organisation we are using to help us collect the funds which makes it a lot easier for us and those people who are able to sponsor the project. Our sponsored walk takes place at the end of the month.

http://justgiving.com/walkinghomeforthehomeless

The subject of a holiday came up in conversation with Bryan and it didn't take long for us to agree a return to Scotland for five days in August would be just the ticket. Our little holiday there last year was wonderful. Our whole itinerary is planned by Robert Kidd of McKinlay Kidd. I used to work with Robert and Heather ( the McKinlay in McKinlay Kidd ) way back in the 80s at Thomson Holidays. A couple of years ago Robert and Heather set up their own travel business in Scotland. They have both been living there for some time and Heather's family is originally from the Kintyre peninsula, so the connection with Scotland for them goes back even further. They both evidently love being up there and their knowledge of the region comes through in the holidays Robert has planned for us. He prides himself with having stayed at all the accommodation he recommends to visitors and the attention to detail has paid off as the standard of the hotels is very good and, most importantly for us, reasonably priced. If this starts to sound like an advert for Robert and Heather it's because partly it is. They are without doubt Scotland's best kept secret so I'm hoping to put an end to all of that by encouraging anyone who wants to see the best Scotland has to offer to seriously consider booking with

www.seescotlanddifferently.co.uk

It was with some excitement that the package from McKinlay Kidd arrived including maps, the itinerary complete with directions of where to turn left and right, ferry bookings and hotel vouchers. We had decided to take a tour around some of the West Coast with a hop over to Mull.

However, our break from all things medical was short lived as, following complaints of tummy pains, Bryan rushed Joshua to the accident and emergency wing of our local hospital with suspected appendicitis. Joshua had his appendix, which had punctured, out the same day. Poor little chap had to have a canula fitted so that he could be kept hydrated and be given a general anesthetic. I know from my chemotherapy experience how horrible they are so it wasn't easy to reassure him as a doctor inserted one into his little hand. Anyway Bryan and I took it in turns and we spent a week with him in hospital as the medical staff were worried about infection and he had to take antibiotics intravenously for three days. Bryan's parents and my parents were brilliant and looked after Benjamin while Bryan and I stayed close to Joshua: we both wanted to be with him as much as he needed to be with us. Joshua lost his appetite and it took another week before he was up on his feet walking and eating properly. We had booked a Brazilian Soccer skills course for him but, with contact sports banned for six weeks, that had to be cancelled. It was not all doom and gloom however. Joshua's recovery to health was enormously helped by my Dad who has been teaching both boys to putt on the lawn at the back of Mum and Dad's house. My Dad was quick to point out to Joshua that now was the time he could practice his putting. Joshua has developed quite an interest in golf ( there's no accounting for tastes) and managed to complete a nine hole putt and pitch recently at a local mini Golf course. In fact such has been his enthusiasm that I have booked a golfing lesson at a local driving-range for his ninth birthday next month for him and nine of his friends from school.

The holiday to Scotland started to look even more attractive after Joshua's unexpected confinement in hospital and before we knew it we were in the car being driven to Heathrow by Bryan's Dad for our flight to Glasgow. Security measures have been significantly increased following renewed terrorist fears: we had to take our shoes off and place them in trays as we went through the barrier. I was not allowed to take any cosmetics, not even my trusty lipstick, in my handbag. A small price to pay to keep us all safe but I resented it all the same.

We picked up our pre-booked hire car at Glasgow and within minutes had left behind the hustle and bustle of suburban life. In fact in no time at all we were looking at mountains and driving through the Highlands and Glencoe national park. Talk about a sight for sore eyes. As we neared the location for our first night's stay at Port Appin we were greeted by one of the many castles en route, Castle Stalker. After a night in a lovely little hotel on the shores of Loch Linnhe we headed for Oban and caught the ferry that would take us to Mull.

We stayed at the little village of Dervaig on Mull for two days and made the most of what the island had to offer including visits to Tobermory ( the real life Balamory), the beautiful white sands beach at Calgary and an unforgettable trip to Iona, ancient burial place of Scottish Kings and Queens including Macbeth. Iona is also the historic site for one of Scotland's most important buildings the Abbey which commemorates the place were St. Columba apparently made his home way back in 563 AD and converted the locals and subsequently the rest of Scotland to Christianity. Robert and Heather described Iona as a 'deeply spiritual place' I can see why although we had little time to appreciate it with Benjamin and Joshua scrambling all over what, for all we knew, might have been important burial mounds. Many remain unmarked. Still we made it there and it was well worth the drive across the single track roads.

Our last day of the holiday was spent by Loch Fyne near Inverary. We enjoyed a visit to the magnificent castle there and the boys enjoyed the visit to the 19th century jail. In fact someone dressed as a warden offered to put them behind bars for a while. An offer too good to refuse and they didn't seem to mind a bit!



On the last night we met up with Heather and Robert at the Village Inn, a very nice restaurant in Arrochar by the shores of Loch Long: a beautiful spot and a perfect way to end a lovely Scottish journey. A journey that took us past waterfalls, mountains and lochs with old fishing boats quietly abandoned on the edge and gradually being reclaimed by nature.

Why radiotherapy?

The question kept coming up in my mind. Despite everything I have read and heard I still found it difficult to understand why radiotherapy was necessary for me. After all I have had a mastectomy.What on earth is there to treat apart from scar tissue? Also, isn't what I have already been through enough?

These are all questions I would have liked to put to the oncologist, but they evaporated into thin air following the information he gave me about the apparent disappearance of cancer in my body. Still, I always carry paper and something to write with, so I made a careful note of my questions and focused my energy on completing the preparations for the school's summer fair. The voluntary work at the school has been a welcome distraction from being a patient and from all things medical. It has given me something else which I have grown to value. It has made me feel part of a community of parents, has helped me understand myself better and, in a strange sort of way, reignited my purpose in life which revolves around my children. They are everything. And so, everything with the school is easy as I do it for them. That said I took enormous personal satisfaction from securing a pair of complimentary midweek tickets for a top London show. I packaged this up with the luxury car chauffeur service donated by one of the dads and placed this as one of the top prizes in our charity auction at the fair: a theatre trip to the West End with chauffeur driven service there and back has got to be worth quite a bit, I thought. In the end, the prize went to the highest bidder for £155.00. In fact we made over £500.00 from our charity auction alone. We had seven donated items ranging from the one I have just described to an hour's singing lesson donated by Bryan. The school summer fair raised a handsome amount of money for the school's charitable fund which is going towards the development of the playgrounds. Best of all, the kiddies that came seem to have a good time on the bouncy castle, trampoline and the other activities we had organised. I was delighted.

Rosemary came along as always to support the event and took some snaps. I then did a write up in our newsletter for all the parents and Voca kindly agreed to sponsor the newsletter by printing it for us in good time for the school to circulate before the end of term.

Roll up, roll up place your bids at out fabulous auction.

Getting down to business with the Go karts

Our favourite lion cub

Once the fair was over I found my anxiety about the next round of treatment returning. Good job I don't smoke. Goodness knows how many cigarettes I would have demolished. In the end I found some solace in a glass or two of Pimms. Sometimes a little alcohol helps clear an adult mind. Towards the end of the day I finished most of what was left in the jug of Pimms that I had intended to share with Bryan and reflected on the fact that Radiotherapy was potentially life saving treatment. This meant that I would quietly comply with all that was being asked of me. How could I do anything else?

So it was with a little hang-over and clutching a bottle of water that I met my mother on the London-bound station platform for the first of my radiotherapy appointments at the cancer clinic in town. My mother insisted on coming with me. Probably being at the receiving end of the concerns I had voiced had a lot to do with it. She kept saying reassuring things and how much better I would feel once it was all finished. I looked for the pieces of paper in my hand bag where I had written my questions and reminded myself to ask the oncologist about vital organs: how close would the radiotherapy come to my lungs and heart? The scar tissue was still healing: what would happen when the radiotherapy started? There were other niggles. The temperatures in London that week were soaring from 25°C to 30°C. My headscarf was for once not helping and the prosthesis that I was wearing to give me the shape my left breast used to provide was making me sweat profusely. The journey would last an hour there and an hour back. A journey I would have to make every day for three weeks. I started thinking about a Pimms as I availed myself of the water I had thankfully taken with me.

We arrived at the cancer clinic and, after a few preliminaries filling in forms I was shown to the radiotherapy suite then into the room where it was all to take place. A rectangular table was the focal point of the room together with a large circular machine with a long arm that swiveled round. A motorised mechanism directed the front of the machine to a target area, in this case the upper left side of my chest. I needed my boxing gloves again as I felt my usual confidence ebb away. Then I thought of my mother quietly sitting in the waiting room upstairs reading a magazine and how upset she would be if she saw me worried and unsettled. I put on a brave face when the radiographer came to explain want was going to happen. But all the time I thought of Sean Connery as James Bond who, having been captured by the eponymous villain 'Goldfinger' (brilliantly played by Gert Frobe) was strapped to a very similar looking table as a laser beam was being aimed at him to cut him in half. Before long I too was lying on a table, stripped to the waist, with a machine poised to direct what I hoped was a less deadly beam towards my body. I couldn't resist saying, "Do you expect me to talk?" The reply I was half expecting: "No, Mr Bond, I expect you to die " never materialised. Instead the soft, gentle voice of the radiographer said "No, just be very still". Then the radiographers and the oncologist took a series of measurements across my chest. I was also given two tiny pin prick tattoos: one in the centre of my chest and and one on the side. Another permanent reminder of my brush with cancer. The treatment itself would last some 40 seconds however getting me positioned on the table to make sure the dose of radiotherapy was delivered to the right place, took anything between 15 to 30 minutes. In fact I went along for several measurement sessions presumably so that the radiographers and the oncologist could assure themselves that the target area for treatment was correct for my individual circumstances.

After all the measurements were completed, the breast care nurse at the clinic asked to see me. I found this odd. Wasn't it a bit too late for all that? I have no left breast. But, my healthy right breast was worth protecting so I went along. She gave me a tub of aqueous cream and asked me to apply the cream twice a day to the target area first thing in the morning and last thing at night. She also asked me to drink lots of water. It was at this point I voiced some of my concerns. She wasn't able to provide the cast-iron responses I wanted to hear but said that a chat with the oncologist might help so we made an appointment for the following week as he was seeing other patients the morning I was there. But what could he say to me? No one has all the answers and in the meantime radiotherapy seems to be protecting cancer survivors. The cure for cancer remains complex; what I suspected they would tell me was that all they could do was reduce the risk of cancer returning by giving me radiotherapy. Survival rates are going up all the time and if radiotherapy meant I would fall into the long-term survival category then I would be a fool not to go through with it.

The following day would be the first of 15 radiotherapy sessions. I made sure I applied the cream to the left side and along the long scar across my chest. I was shocked by the bony surface that my hand could feel and I realised this was the first time since the day of the operation I had touched that area of my body. Could I ever get used to this? Joshua came into our room shortly after I was dressed and asked me where I was going that day. I told him I was going to have radiotherapy. "That sounds interesting" came the reply. And in many ways he was right. I went to the first of my treatments and it was painless: nothing as awful as the chemotherapy. I followed the regime of the cream and drank lots of water. As the weeks passed I became sore, tired and my skin looked sun-burnt but all this had been explained to me, so I was prepared . By the end of July I reached the end of the treatment and when I got off the table for the last time I was sore and tired, but felt happy that my treatment had come to an end. I thought about the weeks ahead and felt for the first time in eight months I had something to look forward to. The oncologist prescribed six weeks rest. No more medical appointments until September. I sprinted to catch the 205 that was heading towards Marylebone where I caught the train that took me back to the familar hedgerows of suburbia.

Sunday, 2nd July 2006

Race for life.

Throughout the month of June I tried not to allow the side-effects of the last dose of chemotherapy to interfere too much with everyday life. One of the few important dates I had in the diary for June was Rosemary's sponsored fun-run in Old Deer Park, Richmond, as part of Tesco's Race for Life programme. (www.tesco.com/raceforlife) Although the run was only five kilometres it was more that I could manage a few days after my sixth chemo. However, I was determined to be there to support Rosemary no matter what on Sunday 4th June. Rosemary was, as ever, very organised and made sure we could park behind her flat in Twickenham. Parking in Twickenham can be time-consuming and expensive if you get it wrong. Bryan and I packed the children and a picnic with lots of bottles of water into the car so that we had enough supplies. Just as well, as it was a bright, very hot and sunny day. We walked to the park from Rosemary's flat with Rosemary, her runner's number pinned to her t-shirt at the front and my name written on a pink label pinned on the back. Rosemary, who is used to running far greater distances, looked as cool as a cucumber. When we got to the park, we picked a spot to set up our picnic, while Rosemary checked in at the runners' desk. I had remembered to pack my new digital camera (thanks, Suzanne!) and wasted no time in taking a few snaps of our favourite runner.

Rosemary and Benjamin

Rosemary and Joshua

Rosemary

About 15 minutes before the race, the runners were all called over to a large grassy area in front of the stage where a couple of fitness trainers led a warm-up session. We wished Rosemary luck and said we'd see her after she finished. The sight of almost three thousand people moving in unison was quite impressive. Then, after the warm-up session was over, the runners moved across to the starting line. Joshua and I dashed to the edge of the runners' area leaving Bryan to entertain Benjamin with the promise of another ice-cream and a balloon. I wanted to take a snap of Rosemary in action, however, she was either too fast or I was not quite quick enough to get to the right place: probably a combination of both. Nevertheless, the pictures I did manage to take captured some of the other runners and the atmosphere in the park that day, which was quite jolly. Once I put the camera away I noticed how many children were taking part, many as young, if not younger, than Joshua. There were also older people walking around the track. Perhaps they were grandparents of cancer victims. Rosemary was back with her medal and goodie bag in no time at all, and, together with our proud parents who had also made their way to support Rosemary, we went back to her flat for some welcome shade and cold drinks.

During the drive home, I reflected on what I might be able to do to raise money for a cancer-related charity. After all, I was the recipient of potentially life-saving treatment developed as a result of studies and research that had probably been funded by events such as the one Rosemary had participated in that day. During my illness, I have been able to go to a cancer support centre at Mount Vernon Hospital. (www.ljmc.org). I have received some good advice and free complementary therapies such as relaxation classes and reflexology while having chemotherapy. However, it was difficult to contemplate exercise while recovering from chemo and with radiotherapy around the corner. Then an idea came to me about my notes. A number of readers have spoken to me and said they have forwarded my notes to people they know in my circumstances in the belief that they would help them; others have suggested that I try to find a publisher. I am not convinced that the content is sufficiently different from other more worthy authors or of high enough quality to compete with them. Perhaps when I complete my last entry on 13th November 2006 I may re-visit the idea. I might be able raise funds for the Lynda Jackson Macmillan Centre at Mount Vernon Hospital with the publication of my notes. It's a nice thought at least. In the meantime, maybe I can do something more practical. During my most recent visit at the Lynda Jackson Macmillan Centre (ljmc), I met the Marketing Manager, a bubbly person called Buzz. Buzz told me about their forthcoming fund-raising event, a 10 kilometre run in September, and asked if the company I worked for, Voca Limited, would consider getting involved in some way. As I manage the community programme at work I said I would try to help by promoting the idea at our monthly Corporate Responsibility forum. In this way I might be able to find some runners which the company could support by fund-matching the sponsorship money they raised. I wondered whether I would be fit enough to do the run myself. By starting slowly to do some regular exercise I could effectively start my fitness training and have that as a goal. What better way of getting fit and do my own bit for giving something back.

The garden continues to bloom thanks largely to my mother and Bryan. My mother has visited a couple of times and brought plants, created a border where there was none and helped organise me into some kind of regular watering routine. She reminds me everytime we speak about watering the garden. Bryan valiantly mows the lawn in all weathers. My neighbour Violet has also been very sweet and given me geraniums which I have planted in some little green containers which my mother gave me in June.



I put the containers just outside the playhouse to give it a more homey look. While this little detail has been lost on the boys, I quite like it. Looking after the boys and the garden was a welcome distraction while I tried to shrug of the illness induced by chemotherapy. We had a family over for lunch on Father's Day, and our friend Nigel brought a bottle of chilled white wine. I had not really been able to think about any sort of drink other that water or green tea while having chemo, however, I opened the bottle and had a glass. It tasted like nectar. I was sorely tempted to finish the entire bottle then remembered we had five kids running around the house and that it was Father's Day ( I was doing all the cooking etc.) so I abstained. The other activity which has been absorbing every minute of spare time is my voluntary work at Benjamin's school. I am the charity coordinator for the Parents' Teachers' Association and when the chairman became ill with a heart-related condition, I stepped in to organise our biggest fund raising event, the Summer Fair on July the 8th. We are currently trying to raise funds to improve the playground so a series of tasks from organising a tombola to writing the programme for the fair and organsising a charity auction have absorbed my time - in a very positive and healthy way I hasten to add. One of the Dads who runs a chauffeur business has offered to chauffeur two people to the West End and back. If only I could find a theatre that might donate a pair of good seats to a show. I have a shortlist of productions that will appeal to the families and friends coming along to the fair, and feel hopeful that one of the theatres will donate a pair of tickets. The Really Useful Theatre Company, for example, have entered us into their monthly draw for tickets in June, so, who knows, a pair may be winging their way to the school as I write.

My anxiety about the radiotherapy persisted. The radical surgery was enough. The chemotherapy was a trial but I understood completely why it was necessary. I had an appointment with my oncologist 'Captain Mainwaring'. I rehearsed in my mind what I would say to him. How could he be sure the radiation would not harm the healthy parts of me? I have had a mastectomy. Why did I need this? What is the risk that the radiotherapy might in fact trigger a new form of cancer? However when I finally made it into his consulting room something he said took me by surprise. As if addressing a member of the home guard he said " Hello Mrs Kesselman, I have been reading through the results of all your blood tests we have been carrying out in the last five months. One of the things we have been testing for is the presence of cancer cells in your body. There are none. You'll need radiotherapy to reduce the risk of cancer coming back of course...." but, by then, I wasn't listening. My heart was beating so powerfully it was difficult to take in anything else. I was winning the race for life I began on 13th November 2005.

Tuesday, 30th May 2006

'It's Over'.

After waking this morning, I noticed Joshua had already gone downstairs and found him busy cutting out shapes from pieces of white paper. He was in fact cutting out letters he had drawn earlier. The letters formed two words which he displayed for me on the dining room table. They simply read 'IT'S OVER'. The apostrophe was in the right place; more importantly he understood the importance of the day for me and I could not help but thinking it was probably quite a significant moment for him too. I kissed his lovely curly head, nodded and smiled. In truth, I was very moved. I reminded him that although today was a very happy day for me, I would not feel better for at least three weeks but that after that my hair would slowly start to grow back and I would get stronger and stronger with each day.

My blood test results were fine apart from the Haemoglobin level which meant I was anaemic according to the oncology nurse and, had I had more chemo in the diary, this session would have been postponed for a least a week. But I had no more chemotherapy appointments and, with the rest of the Summer to recover, I was classed fit enough to be hooked up to the drugs. I made an appointment to see my GP when I got back home (the Macmillan nurse suggested I do this so that they could monitor the anaemia,) and immediately started taking iron tablets.

Blood test results 6th and final chemotherapy cycle:

Haemoglobin 9.7 White blood cells 7.1
Platelets 352 Neutrophils5.9

In the meantime, I have the rest of the Summer to look forward to. Rain or no rain each day will get better and better. Of course there will be radiotherapy, and I have to make an appointment to discuss that with the oncologist. I do have concerns about this treatment: what do they think there is left to zap after a mastectomy? But radiotherapy will be like a stroll in the park compared to chemotherapy. Like a mariner that has been out at sea for months and months, at around midday I stepped off my sailing vessel onto dry land. That part of the journey was over.

Sunday, 28th May 2006
'Frostbitten Leaves'

The final session of chemotherapy looms over me like a dark cloud. Fortunately the days pass leaving me with little time to dwell on how my body might respond to the final dose of unpleasant chemicals that await me on 30th May 2006. I have been going into work a few days each month (with medical consent and agreement from my employer) to stay in touch - people in the office have been so supportive - and also offer some management continuity on Voca's corporate responsibility programme. One of our projects has been kitting out the newly-built adolescents' room situated within the children's ward at Watford General Hospital and there are numerous community projects which we are supporting through a combination of staff volunteering or sponsored runs of one sort or another. I have been doing some volunteering too at our children's school helping out with fund-raising to develop the school grounds. Together with a handful of other parents I created a newsletter for parents and staff at the school to keep them informed of fund-raising events. The first issue went out on Thursday 25th May and it seems to have been welcomed by parents which was a pleasing way to end the week. For me at least, creating activities that channel my thoughts in a positive way has helped me cope with this most testing phase of my treatment and I would advise anyone else who is going through treatment like this to look at some sort of constructive activity to focus the mind. But there are hundreds of chemotherapy combinations and in the end people do what works best to get themselves through this rather sticky patch.

On a personal level I remain relatively well although my eyebrows and eyelashes began to fall out about a month ago and the penultimate chemotherapy session on 9th May made matters worse. I suppose my change in appearance has been gradual but when I caught sight of myself in the mirror yesterday I was shocked: I saw an alien form. Apart from looking tired, I also looked ill. And yet, the irony of it all was that the drugs have been wiping out any cancerous cells that might have been floating about in my body, so I was simply suffering from the after-effects of the drugs and not from being ill as such. This is an important distinction and while it may be evident to onlookers it is not always evident to the person at the receiving end of the treatment. I stuck my tongue out at my own reflection, it smiled back at me. Suddenly the face looked less scary and more familiar. I knew this was a transitory phase in my life, one admittedly I could have done without, but one that would pass by. However this physical alteration and the tiredness which has at times overwhelmed me during the past 10 days has made me feel less inclined to venture out and I have focused on what I see as my primary task: keeping the children watered, fed and clean. They don't properly understand what I am going through of course and in a way I am glad however at times my patience has been has worn a little thin when they quite naturally are less than co-operative. And that's when I have wished they understood a little bit more. After breakfast, and before we dash out to get to school on time, the main objective is to get them both dressed. Simple enough. Admittedly Benjamin still needs a bit of help, especially if he is to leave the house with his trousers the right way round. Joshua by contrast is very self-sufficient, once he gets going, except that it's the devil's own job to get him to that point. Despite several repeats of the command "GET DRESSED" he is quite happy to look out of his bedroom window and day-dream. So after a lot of shouting from the bottom of the stairs he finally emerges fully dressed,but by that stage, my nerves are in tatters. That's parenthood for you I guess.

In the meantime, I continue to be reminded of how fortunate I am to have such a caring circle of people around me. Firstly Bryan, my parents, my sister and in-laws continue to help out with washing, childcare, cooking and other domestic chores. Debbie recently provided another meal-on-wheels service driving all the way across London to deliver cooked meals. Somehow she manages to weave this in between her job as a designer and design lecturer. This meant that Bryan and I did not have to worry about cooking for a while. She continues to amaze me. Another friend, Shirley, appeared on the doorstep the other day with several bags of supermarket shopping and, a few days later, insisted on taking me to a garden centre for tea one morning. Then there's Myra, she of the lovely hair, who booked an aromatherapy massage for me followed by a lunch at a very good sea-food restaurant near where she lives as an 'early Birthday present'. And if all that wasn't enough to cheer anyone up, I became the proud owner of a digital camera thanks to my friend Suzanne.

Despite busy days looking after her young boys, husband and house Suzanne managed to find time to enter a local amateur photography competition. Suzanne has always been able to take good photographs and I have often thought how professional they looked. So it came as no surprise when, undeterred by the complications of the school run, getting food organised and sorting out laundry, she set out to explore an area of outstanding natural beauty near where they live to see what she could find that might merit an entry into the competition. In the end she took lots of pictures that wintry morning including several which simply featured woodland leaves. She decided to enter one of her pictures which she simply entitled 'Frostbitten Leaves' into the Winter category of the competition. This was the first time Suzanne had entered a photographic competition, so, several months later, in the Spring, she was completely surprised to be informed by the organisers she had won the Chiltern Woods in the Winter category. I later found out there were other categories including Woodland Feature and Woods in the Autumn. I asked Suzanne if I could go to the presentation ceremony which took place last month as I wanted to be there to show my support. It was all pretty exciting. 'Mum of two wins photographic competition' would have been my headline in the local newspaper. The award ceremony was to be held at the Ashridge Estate Visitor Centre
www.nationaltrust.org.uk.

So one Sunday after lunch we set off in two cars with what seemed like loads of kids (to be fair, I think we only had four), Suzanne's husband Chris and a visiting Aunt to the award ceremony. We made it just in time. Unbeknown to any of us the judges also had a prize for the best overall photograph shortlisted from the 155 entries they received. When I saw Suzanne's picture of the leaves I could see why it had won the Winter category. The detail on the frost around the leaves and the way the light was shining that day created an amazing impact and Suzanne had been clever enough to spot this and take a winning shot. The category winners came up to receive their awards and when the overall winner was announced it came as no surprise to me at least to hear Suzanne's name being called out for the second time. Her picture was the overall competition winner and she looked absolutely delighted as well as surprised when she went up to collect her prize of a digital camera and an enlarged framed picture of her 'Frostbitten Leaves'. It was a great day and all the winning photographs are featured in, 'Chalk and Trees', Spring/Summer 2006 newsletter of the Chilterns conservation board.

A few weeks later Suzanne and her children came for tea. She turned up with the digital camera and handed it to me saying she wanted me to have it 'for all sorts of reasons'. Under any other circumstances I might have tried to talk her out of giving this to me, after all it was her prize, but I was very moved and accepted her kind gift. I will always think of it as Suzanne's camera and the pictures that follow are both taken with the new digital camera. Unfortunately a combination of rainy days and other activities have prevented me from putting it to good use. However the arrival of the new garden shed and the playhouse have changed all that.

Sunday, 14th May 2006

Charlie and the changing garden

It was good to see Charlie turn up with a cement mixer and a sledge hammer. I watched with glee as that awful shack started to wobble. I really wanted to join in with Charlie and give that slug-infested pile of rotten wood a good wallop but thought the better of it: I barely had enough energy to crush a grape never mind smash a shed. Still, just thinking about it made me feel good. The next important event that day was the arrival of the skip. I really know how to enjoy myself. Charlie had been told by the skip company that the skip would arrive at midday. By 2 pm and several calls the skip had not arrived. For some reason he wanted to be around for when the skip arrived. I later found out why. He said he needed to pop out to get some fencing and that he would be back in 20 minutes. The skip truck pulled into our road shortly afterwards being driven (somehow) by someone who I can only describe as Skip Man. A large, heavily tattooed man with a No. 1 hair cut proceeded to angle the skip truck so that he could winch the skip into our front garden. I watched with disbelief as, mobile phone firmly plugged into his right ear, with his right hand, he proceeded to try to reverse the skip truck into our garden. Not even the collision with the telegraph pole next to our house and me energetically waving at the back seemed to interrupt his conversation on his mobile. Finally, he noticed he could not reverse the truck, so he edged forward and repeated the manoeuver all over the again. The second collision evidently irritated him as some rather bad language emanated from the cabin.
This time, I shouted, "There's a telegraph pole behind you !"
The response that came back was barely intelligible. Obviously I wasn't expecting Charles Dickens to deliver a skip however neither did I imagine for one moment I would be left trying to negotiate with Neanderthal man.

Anyway, the second collision seemed to distract him from his his mobile phone conversation and he got out of the cabin and walked towards me. I stood my ground and quietly pointed at the telegraph pole. I figured hand signals were best in this situation. I waited for him to say something.
"£130.00 in cash before I leave this," he said.
I had already given the cash to Charlie as we knew he would need paying immediately. I thought about the mounting pile of rubbish in the back garden, and told him to wait while I went to get the cash. By the time I returned from the cash point, he had managed to lower the skip into the garden. When I asked for a receipt the conversation became a little strained.
"If you want a receipt then you have to give me an extra seventeen and a half percent." When I questioned this, his language became less eloquent and then he started to shout at me. "You've got the skip, if you want a receipt, you have to pay for it"
I told him I though this sounded a little unorthodox and that I would think twice before using his company again. He responded with an Anglo-Saxon-style salute and an abusive grunt before going back into the cabin of the truck. I made a mental note to leave all further communications with Skip Man to Charlie who was dismayed when he heard what had happened. He later confided to me that it would be the last time he would be using them too.

Sunday, 30th April 2006

My playlist

I was passed fit (just) for the fourth round of chemotherapy on Tuesday 18th April 2006. I chatted to the nurses in the oncology suite at the hospital and one of them reminded me that I was now two thirds of the way through this saga. I had two more cycles to go and then the endurance test, for this part of my treatment at least, would come to an end.

Blood test results

Haemoglobin 11.1, Platelets 363
White blood cells 3.8, Neutrophils 2.4

Chemotherapy does not get any easier with each successive treatment. As I steeled myself for the effects the drugs would have on me, I focused on the permanent damage being inflicted on any rogue cancer cells that may still be floating around my body. Also, not a day goes by without either a family member or friend helping me out in some way. In this respect I am very lucky: imagine going through all of this on your own? Apart from my ever supportive family and friends music has been constant companion – this predates my diagnosis by a long time but somehow songs I have always enjoyed have become even more enjoyable. I nearly always have the radio tuned into a music station in the car and I have a favourite set of CDs that are never far away. Theres are some songs that I keep coming back to: like friends they are always there in the background and never fail to cheer me up. They speak for themselves. Some are classics, some will fade with time, all are special for me.

1. Song title:It don't mean a thing (if it ain't got that swing).
Artist: Louis Armstrong
Composer: Duke Ellington - Lyricist: Irving Mills
Date: 1963 EMI Records.

There can't be many people in the western hemisphere that could fail to recognise the identity of the man behind this remarkable voice. All the more extraordinary given the racial discrimination he faced however, such was the size of his talent, he overcame this and abject poverty to become a name intrinsically linked to the jazz genre. His seemingly natural and charming ability to weave sunbeams into every note he plays or sings has secured Louis Armstrong's place not only in musical history but in the cultural development of America. Above all, it was Louis's trumpet playing that broke new ground. His distinctive voice, and the music of Duke Ellington makes this song one of my all time favourites. His performances have thankfully been recorded in several Hollywood films including High Society and Hello Dolly where he looks every inch a star. And you know what? The light shines as brightly as it ever did.

2. Song title: Come fly with me.
Artist : Frank Sinatra
Composer: James Van Heusen - Lyricist: Sammy Cahn
Date: 1957 Capitol records

This is the young Frankie at his best. The big band sound was arranged by Billy May who also conducted the fabulous orchestra, but, soaring above it all is Frank himself. I pack my bags and leave with him every time he flies away.

3. Song title: I've got you under my skin
Artist : Ella Fitzgerald
Composer/lyricist: Cole Porter
Date: 1956 Polygram records – New York

The purity and honey like sound of Ella Fitzgerald's voice has a mesmerising effect on me and I imagine countless other people. Ella can sing just about anything however this song by Cole Porter might as well have been written for her as it brings out the best in her vocal talents. When Ella starts singing it's as if an angel has found its way into your head-set and allowed you to hear what it sounds like when you get to heaven. She remains untouchable.

4. Song title: Help!
Artists : The Beatles
Composer/lyricist: Lennon & McCartney
Date: 1965 on Northern Song record label.

It's difficult for me not to continue with the entire album once I listen to any Beatles track however this song goes like a train from the start and I tend to want to listen to it more than the others. The close harmonies are sublime and I'm always disappointed when it comes to the end.

5. Song title:The Girl from Ipanema
Artists : Stan Getz and Astrud Gilberto
Composer/lyricist: Jobim/Moraes/Gimbel
Date: 1964 MCM records inc.

This has to be one of the most mellow and chilled out jazz songs ever recorded. I love the contrast of the two voices and of course the unmistakable saxophone solo that could only be Stan Getz . I sometimes dance to this song when I'm pottering about in the kitchen. Everything takes twice as long but somehow the chores become less dull.

6. Song title:Move on up
Artist : Curtis Mayfield
Composer/lyricist: Curtis Mayfield
Date: 1970 MCA records

Is there anyone that can keep still listening to this song? I have not a clue what Curtis is singing about however it's one of the most uplifting songs I have ever come across. That's not all. Someone is having a seriously good time with those Congo drums. A real floor-filler in the Kesselman home.

7. Song title: Dance me to the end of love
Artist : Madeleine Peyroux
Composer/lyricist: Leonard Cohen
Date: 2004 Rounder records corp from the album Careless Love

My sister bought me this CD for my Birthday one year. I had not come across Madeleine Peyroux before however, knowing Rosemary's good taste in music, I played the CD as soon as I had a moment to myself and was immediately struck by the haunting beauty of this lady's voice. There are echoes of Billie Holiday tinged with a Gallic influence that makes it very distinctive and the more you hear the more you want the music to go on. Works very well in the rush hour when you're trying to stay calm but ideally listened to when you have the sofa to yourself and you simply want to drift off. Every word is crystal clear;this song is a delight from start to finish. And yes, it's taken me till song No.7 to stumble into the 21st century.

8. Song title: Summer Soft
Artist : Stevie Wonder
Composer/lyricist: Stevie Wonder
Date: Originally released on the Tamla records label in 1976 as part of Songs in the key of life album.

Easily one of the most played artists in my record collection. There are over four million entries on Stevie when you type his name into a search engine such is the interest in his extraordinary musical output . He too had to overcome racial discrimination and poverty, perhaps not in the severe way Louis Armstrong did nevertheless it was a part of his life as was his blindness which makes him all the more remarkable. Not only does he write the music and lyrics for all the songs he sings, close scrutiny of original record sleeves reveal he plays most of the instruments and very often has produced the entire album.

As a teenager I was allowed to go to see him in concert with a school friend at Wembley Arena when he was on the 'Hotter than July' tour. In those days I could scream for England and, with the thousands of other hormone powered kids in the audience, we made sure he knew just how many of us were there to welcome him when he walked onto the stage. It was a dream come true for the Stevie Wonder fans that had managed to get a ticket. To see him, hear him sing live, and play all those instruments was an unforgettable experience. Towards the end of the concert he said that he had a couple of friends in town and that they were going to join him on stage. Then on walked Diana Ross hand in hand with Marvin Gaye. We held hands and danced as the three of them sang together with Stevie on keyboards. The cheers, screams and whistles went on and on when they finished. I couldn't speak for days after – but it was worth it.

This song is not often played on the airwaves however it bears the hallmark of his musical talent. Could anyone other than Stevie have written lyrics like “....Morning rain, gently plays her rhythms on your window pane...” He has received countless music awards most notably perhaps for those of us in the UK the Ivor Novello lifetime achievement award in 2001. I remain in awe of him.

9. Song title: Over the Rainbow
Artist : Eva Cassidy
Composer: Harold Arlen - Lyricist: E.Y. Harburg
Date: Recorded between 1993-1996? I have it on the Song Bird album.

Bryan said to me “How can you choose this recording over Judy Garland's original master piece?” It is true, Judy is a hard act to follow, but this interpretation arranged and sung by Eva Cassidy breathes new life into the music and stands on its own merits. E Y Harburg's lyrics have stood the test of time and Eva's voice is extraordinarily beautiful adding bright colour and subtle meanings that remained hidden until Eva discovered them. Eva's life was cut all too short by terminal cancer. Thankfully we have recordings like these to remind us of her wonderful gift. I always try to hit the notes as she soars to the top but of course can't get anywhere close.

10. Song title: Another star
Artist : Stevie Wonder
Composer/lyricist: Stevie Wonder
Date: As before

The man is too good. I turn the volume right up when I play this song and then lose track of time. An added bonus is the “La la la la la...” at the beginning and at the end. What more can I say? “There might be another song, but in my heart your melody will stay with me.”

Sunday, 16th April 2006

Back to my roots

There is a rectangular plot of land at the back of the house which we refer to as a garden. Certainly it looks more like a garden since we carted away all the rubbish deposited by the previous owners and cut back the bramble that covered much of the grass – I suppose an estate agent might refer to that part of the garden as a lawn however that would be stretching the description by a long way. Neither of us have a clue about gardening as the picture below shows although we have had the sense to maintain the fruit trees as we have grown to enjoy eating the apples from the garden.

Nevertheless the apple trees aside the garden looks unloved and, during my time at home either recovering from the surgery or chemotherapy, I have been plotting in my mind how we might make some modest improvements. The first thing that has to go is that shed. We have talked about that shed for years but with other demands on the household budget such as new windows, doors, and nursery fees the upkeep of the garden has taken a low priority. Consequently nothing much has changed there since we cleared away the rubbish almost seven years ago. However with Benjamin turning five during the Summer, and full-time school on the horizon, the monthly payments to his private nursery will soon stop. I have already worked out where we can spend some of the money. In the meantime I decided to cash in some savings to fund some initial improvements. The shed seems like a good place to start.

Thankfully we are still in touch with a very good local handyman: Charlie. We called him and gave him a list of jobs in the garden including the repair and replacement of fencing, laying down a concrete base for a new shed and demolishing a rather ugly bit of masonry installed by the previous owners. We have a date in the diary for him to start work and we will be all the happier once the transformation starts taking shape. But what to do with the rest of the garden? Well, we have also decided to install a playhouse for the children which will be a nice surprise for them, and the challenge really is to try and create a child-friendly, low-maintenance, attractive little patch at the back of the house. Bryan is not keen on the old garden path and neither am I. The grass needs uprooting and replaced with good quality topsoil and lawn turf. Some hardy perennials around the borders would probably be a good idea however with a hosepipe ban just coming into force we need to think carefully about what we buy. This is the little project which I am hoping will provide a positive way to direct my remaining energies during the second half of my chemotherapy.

During the Bank Holiday week-end we visited my parents and I found a newspaper in their living room which contained an article written by the gardener Monty Don. In the article Monty advocates the merits of mulching during April. What a wonderful word! I had no idea what he meant by this, but already I was keen, so I read on. Essentially, mulching involves laying down a collection of gardening fodder (mulch) onto flower beds to deter weeds and maintain moisture in the ground. So far so good. But, as Bryan quietly observed, we had mostly weeds in out garden so what was the point of mulching? Well, if he had read Monty's article he would have understood that the mulching would stop further weeds from appearing. And in any case, I was planning to uproot all those rogue weeds. A planting plan was formulating in my head and the first line of the plan involved weeding and, if I could manage it, some serious mulching. I can almost see Monty nodding wisely back at me from the page of the newspaper. Then I took another hard look at the little suburban garden at the back of our house and decided to postpone any immediate activity until Charlie had started some of his work.

The front garden looked pretty apart from some weeds, so when we got back home I set about pulling some out. I found an old pair of gardening gloves, checked there was nothing crawling around inside, and began to pull out some weeds, in a feeble sort of way I admit. Nevertheless I had started my gardening project which was a satisfying experience. After a little while an elderly gentleman stopped just outside our front garden and sighed heavily. We live opposite a Doctor's surgery so a number of people walk past every day. I am usually unaware of the activity as I am at work but in recent months I have noticed just how busy it gets during surgery hours. Anyway the gentleman sighed again and groaned audibly.
At first I felt like saying, “Move on buddy, I have my own problems.” Instead the following words left my lips, “Are you all right there?”
"Yes love,” came the reply “apart from my gout, that is.”
“Oh, sorry to hear that. At least you're heading in the right direction.” I said cheerfully nodding towards the surgery across the road.
“Not sure that will help...had this for years,” he responded.
“Well, they're very good in there,” I said, thinking that that would do, and that he would move on.
But, much to my disbelief he stopped walking and replied, “ Really?”
I couldn't believe it: I only came out to do a bit of weeding not provide a counselling service. “Oh definitely we've had all sorts of things fixed in there,” I responded in a reassuring a manner as I could muster. It seemed to work.
“Let's hope they can do the same for me” he replied and, with that, he turned to cross the road.
I carried on weeding before the size of the task got the better of me. I looked at my fistfuls of uprooted weeds and couldn't help but feel pleased with myself. I didn't see the gentleman again. Maybe they fixed him in there after all.

Friday, 14th April 2006

Meanwhile, back in suburbia....

Young children, and by this I mean the under fives, have an efficient if unorthodox way of coping with a runny nose. This will be a familiar sight to some parents. As liquid trickles out of their little nostrils, an equally little but perfectly formed tongue pops out and clears it away from the upper lip much in the way a car screen wiper might clear rain from a car window. This is what gave me my first inkling that Benjamin had a cold. Despite several demonstrations from me about how to take out tissues from his pockets, how to blow and wipe his nose, he doggedly stuck to his tried and tested lick-it-off-my-face method. Well, he's four years old, so why not? The runny nose was followed by a slightly croaky voice and a little cough but no temperature and,within two days his cough and cold went as quickly as it came. Little children have little problems. During this time I received my usual quota of hugs and slobbery kisses from him. Having a lovely child like this made me forget about how my immune system would react. It may have been pure coincidence, however, it was not long before I too had a runny nose: but I refrained from using the tongue method so beloved by Benjamin. I was very grown-up about it all and availed myself of several tissues. If only the cold had been restricted to that I would have been perfectly happy but matters took a turn for the worse. I lost my voice, developed a stabbing cough, a series of headaches that stubbornly refused to disappear without paracetamol and sprouted a cold sore on my lip: all I needed just ahead of cycle 4 of chemotherapy.

Life goes on and with Bryan's school breaking up for Easter a week after Joshua's and Benjamin's school I focused on the entertainment programme for the boys. For the first few days this entailed ferrying them between each set of grand-parents as I was not up to much. In fact, I had agreed to meet up with the mother of one of Benjamin's friends Helen and her son Edward. However I had to cancel at the last minute as I started to shiver and feel drowsy – an unusual combination. Thankfully, my parents and Bryan's came to the rescue and took care of the children when the heavy cold restricted me to staying in bed for a few hours at a time. That said, I began to feel better towards the end of the week and managed to pack a picnic for myself and the children to take to Aldenham County park. www.hertsdirect.org/yrccouncil/hcc/env/enjoy/places/aldenhamcp/ The park is managed by Hertfordshire county council and is home to a collection of rare breeds of farm animals. There are also thoughtfully planned play areas for the under fives and older children. It was a little chilly for a picnic I suppose, however, the boys didn't bat an eyelid and tucked into their sandwiches. We had some bread left over at the end and fed this to ducks who had been paddling in a hopeful sort of way at the nearby water's edge.

The next day Bryan was at home and I felt confident enough to book a bowling alley for the boys and we took Joshua's friend Lawrence with us (Lisa's youngest son). We had great fun and Benjamin perfected a technique of pushing his ball down a bowling ramp (supplied for small children who might not otherwise be able to play due to heavy nature of the bowling balls) while maintaining his grip on a chocolate chip muffin. By the evening, the persistent cough I thought I had managed to shrug off returned with more vigour together with the now familiar headache. I took more paracetamol and went to the pharmacist to get whatever he/she was prepared to give me. I came away with Benylin and Strepsils as my throat had become sore and I had started to lose my voice. By Saturday evening my usually mild asthma kicked in and I developed a wheezy chest. By Sunday 9th April I was taking so many cold remedies you could have heard me rattle as I walked. They all seemed to help in some way and I list them here;

Vapour rub – very good for blocked noses/wheezy chests at night-time.
Ventolin – Kept my airways clear.
Benylin – a cough remedy. It works in mysterious ways.
Zovirax – for cold sores.
Strepsils – for sore throats.

It was not usual for me to need such a colourful assortment of medicines to manage a cold but then colds have rarely taken hold of me in the way this one did. Nevertheless, I remained undeterred and went along for my pre-chemo blood test on Monday 10th April as planned. After all, despite the coughing and spluttering, I had no temperature and felt well enough to drive. When I went in for the chemo the following day the oncology nurse narrowed her eyes as she looked at me and said, “You do not look quite right to me.” She had a point. I was coughing, had a cold sore the size of a small raspberry hanging off my lower lip, my voice had been reduced to a strange hissing sound: to be fair, I was not looking my best. All I needed was to shove a cushion up my back and to drag my left leg behind me as I walked to complete an impression of Quasimodo. However before I got carried away with thoughts of bell-ringing, the nurse brought me back to reality with my blood-test results. She read them out like football scores:

Haemoglobin 10.2, White blood cells 5.2
Platelets 298, Neutrophils 3.1

At first glance the results looked as I might be fit enough to withstand the chemo. However, the nurse said the raised count for white blood cells and neutrophils confirmed that I was fighting an infection and that the chemo would weaken me further. She called the oncologist who concurred with her view and I was advised it would be wiser for me to postpone the treatment by a week to Tuesday 18th April. I was partly relieved and partly disappointed as I wanted to plough my way through this course of treatment according to the schedule. But I wasn't going to argue. I would have a week to recover, to gain my strength, and as I walked back to the car I consoled myself with the thought that I might even be able to enjoy a bit of Easter chocolate.

Sunday, 2nd April 2006

The power of the mind

The day before the third of my six cycles of chemotherapy I was inexplicably tired. Worse still, the nausea I experienced when I had completed the last course of anti-sickness drugs mysteriously returned as did the dryness in my mouth and the metallic taste. I puzzled for a while over this as it had been nearly three weeks since my last session of chemotherapy. It now seems obvious that the symptoms were psychosomatic. My mind had begun to anticipate what was about to happen and my body was simply responding to messages sent by the brain. I have often heard the expression 'the power of the mind' and here was clear evidence that this phenomenon existed and was real. Fortunately for me, I was lucky enough to spend the afternoon with one of the other mothers from school: Lisa. Our sons have been in the same class since they were very little so we have a common interest, also Lisa has been very helpful taking Joshua to school on days when I have had to go for scans and other medical appointments. Like many parents, she juggles jobs around the school timetable. One of these is beauty treatments such as manicures and pedicures. Lisa had previously offered to give me a manicure and I decided to accept her kind offer. A good decision the day before the next set of injections. It took my mind off something which, quite frankly, I was not looking forward to and we talked about home improvements, our children and holidays. Now, here is an insight into the workings of my brain: I can talk about holiday destinations all day and never run out of ideas of where to go and what to do:that is, before reality sets in. But who needs reality these days? Escapism is far more liberating. I walked back to the house and my symptoms evaporated into the Spring air as I began to relive memories of last Summer's family holiday in Scotland.

I had however gone for a blood test that morning and very soon began to wonder whether the results would be sufficiently high enough to certify me fit for the next series of injection. I consulted my record book and reminded myself what my blood results had to be in order to qualify for the third chemotherapy session. It was all quite simple and straightforward:

Full blood count readings ______My actual blood test results
needed to qualify for chemo. ____before cycle two.

Haemoglobin >10 _________ -_-.___12.6

Platelets >100 ___ _________ _____208

White blood cells >3 _______- _ ._.__3.1

Neutrophils >1.5 ___ _______ __ ___1.7

The blood count readings prior to cycle two of chemotherapy were not great; I barely scraped a pass on two of the measures. However I reflected on my strategy of regular exercise, my juicing regime, and my own determination. I was anxious although quietly confident my results would prove good enough to allow me to sail through the half way mark. I told Bryan I would be able to cope with this next round on my own and drove myself to the hospital singing along to Stevie Wonder at the top of my voice. The oncology nurse read out my blood results with a smile on her face: my recovery was improving and the results were good enough and in some cases better than cycle 2. I was passed fit to take Cycle 3.

My cycle 3 blood results

Haemoglobin 12, Platelets 280, White blood cells 3.3 and Neutrophils 1.7

As I was being hooked up for the drugs in the oncology suite at the hospital I chatted to the oncology nurse about my juicing, new diet etc. Whatever damage the drugs were doing to certain parts of my body, my mouth has thankfully remained in perfect working order. The nurse, waiting for a chance to get a word in edge-ways, then warned me that this next series of drugs might induce more severe side effects. I looked at her and thought, “Nice of her to tell me, but it probably won't be that bad.” For once, her predictions were borne out by what happened over the following week to ten days. Once I completed the course of anti-sickness drugs, the symptoms I had previously experienced, returned however in a more pronounced way. For forty-eight hours I felt like sleeping all the time. The nausea created a knot-like sensation in my stomach which made drinking water never mind my beloved veggie juices virtually impossible. The dryness in my mouth was more severe and the metallic taste pervaded everything I tried to eat. I suffered nosebleeds, dizzy-spells was unable to shrug off the tiredness all week and became constipated to boot. I was able to keep food down however and was not prevented from taking the children to school, taking charge of bed-time, cooking and filling laundry bags for my mother and mother-in-law. But it took over ten days before I felt I had my body back and I felt wretched, depressed and began to think the unthinkable: could I really face another three of these dreadful injections? I quickly came to my senses. I was half-way through this ordeal. On April 11th, I would be taking my fourth series of injections. The penultimate series is scheduled for 2nd May and the last 23rd May. These gruelling repetitive cycles were coming to an end. This was not the time to waver. It is true I have, on occasions, felt like a mariner lost at sea but I reminded myself I had a compass, better still I had plotted my course, had become a confident navigator and held the end of the voyage clearly within my sights.

Monday, 20th March 2006

Vanity thy name is woman

Having assembled a respectable collection of head scarves I decided it was time to show some of them off. I have been sporting a different look every time I take the children to school however not really recorded any for posterity until now. I called my sister Rosemary and told her about my idea of having a little photo shoot in Uxbridge and, being the good egg that she is, she pitched up last Thursday with her camera. Following a catch-up over a pub lunch we got down to business. We called in on our friend Spyroulla who runs Le Petit Beauty Salon. She sprinkled some fairy dust over me and also allowed us the use of a room so that I could change from one outfit into another. I regretted not bringing my other coat with me but still hopefully the pictures show how you can go bald, not use a wig and, well, sort of get away with it.

Hat courtesy of Rosemary. Scarf from Anne-Marie's own collection.

Hat from Accessorize courtesy of Debbie. Scarf from Anne-Marie's own collection. When Joshua saw this picture he said to me, “Nice boat.”

"I'm ready for my close-up Mr De Mille......"

The casual shopper look. Hat courtesy of Debbie. Scarf courtesy of Andee. Both from Accessorize.

The Boho look. Scarf courtesy of Suzanne.

I made the most of last week when the side-effects of the chemotherapy had all but worn off by packing as much in and seeing as many people as I could. Apart from Rosemary, I also met up with boxing-glove-Jaks and Izzy for lunch in the city. It was good to see them both again. Time flew by: we left the restaurant at half past three. On Saturday, I asked my parents if they would look after the boys so that I could see Debbie over a relaxed lunch at her place. I drove there as I was feeling absolutely fine. She's a very good cook and lunch was delicious. I left having been fed and with a chicken casserole to go into the freezer.

But it has not all been plain sailing. Simple everyday tasks, such as loading the washing machine and hanging up clothes to dry, have become harder for me. With two boys that are mud magnets and our own clothes plus towels and linen, the machine needs to go on two, maybe three, times a day. Previously, I thought nothing of putting on a load before I left for work in the morning then doing the other two loads when I got home from work in between supper and bed-time. A chore, of course, but it got done. However, over the last week, the washing has been piling up as feeding the children and putting them to bed was all I could manage. Bryan continues to work as a music teacher during the week then as an opera singer at the week-ends and looks tired enough when he gets in without me asking him to do a load of washing. For a few days I tried to muddle through but the laundry was not getting done so in the end I decided to enlist the help of my mother and mother-in-law. Thank goodness we have them both nearby, willing and able. Since I asked for their help laundry has been whisked away then returned cleaned, dry and...ironed. In fact everything is coming back ironed even underwear and pyjamas. It occured to me I could tell them both not to go to so much trouble. Then thought the better of it: if this is what they expect to do who am I to tell them otherwise? We are very lucky to have such a caring family around us at a time like this.

I have been able to continue with a little voluntary work at Joshua and Benjamin's schools. I am one of the parent trustees on the parents'/teachers' association that runs events to raise money to purchase much needed school equipment for both schools. This entails helping out with publicity (in my case) and helping to run one or more of the stalls at one of the events or to persuade other parents to spare time to do the same. Currently we are preparing for the Spring and Summer Fairs. Last week we had a non-uniform day at Joshua's school to remind children about the Spring Fair and encourage the parents to send in a bottle with their child for the adult tombola. So we had a bottle collecting activity at school on Friday morning when each class took it in turn to form a neat queue outside the store room and a handful of mums, including me, took in bottles taken into school by the children. We collected over 200 bottles for the adult tombola so this stall will get off to a great start. I also attended a meeting one evening to discuss planning for future events. As a number of the mums know about what has happened to me I was giving them a quick summary of how the chemo was going before all the other attendees arrived. Listening in attentively was our token dad at these meetings: Steve. A number of the mums started to make some helpful suggestions about how to adjust to my new circumstances; had I tried lavender under my pillow; did I know about the soothing effects of chamomile and so it went on. After a while I could tell Steve was building up to something and that he too was about to make a suggestion.

“Have you thought about having anything tattooed on your head?”
“Not really, no.”
“You could get a rabbit tattooed on your head.”
“A rabbit.”
“Yes. From far away it would look like a hare.”