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God be in my head!

Since October last year, when I last wrote, I have had a period of exceptionally good health. It seemed that my immune system has been strong and I have been living the best life I could have imagined for myself.

While never lulled into complacence, my excellent counseling has allowed me to live fully without an unnatural sense of urgency marring the sheer joy of life, with which I am continually suffused .

The last few weeks have been dogged by bad migraines that raised the alarm bells.

CT scans revealed on Friday that while the known marker tumours are in a stable condition, there are 6 new metastatic melanoma tumours on my brain. The largest is 3cm in diameter.

The involvement of cancer in my brain has always been my deepest fear. The loss of self and the impact of that on Tim and the children is so profound. Dr Tabane, my oncologist has warned of big effects on cognitive function and I have already had difficulty with speaking (dyspraxia) and and remembering (aphasia), where I can't remember people's names or recognize them and make the connection.

Under good advise from our trusted GP, I have completed a Living Will that allows me to make some decisions ahead of the time when I am unable to be in control. We have had a conversation about Euthenazia.

I am beginning with radiation treatment of my whole brain tomorrow and this will continue over three weeks. Surprisingly enough, I feel calm and resolute about losing all my hair and the probability that it will never grow again. Tim and I dashed off and bought a wig on Saturday. Not the run of mill shopping morning. It does make me look like myself, but thinking and feeling like myself are immeasurably more important for now.

I am overwhelmed, astounded and filled with enormous pride in my family. It is four years that we have lived with this bad cancer news and we have each developed extraordinary character and emotional intelligence over this period. We have had opportunities for many good conversations and fabulous experiences and they are strong and clear about how capable they are to move forward and to grasp all the good that life has to offer them. They do not have cancer. I have had the best imaginable wisdom and counsel from Sarah. Tim, in his generous and inimitable way, has created a miriad of opportunities  for gathering collective and individual memories, that we treasure.

There are some amazing new breakthrough drugs that are in trial phase out of SA and once the radiation is over, I will be pursuing them hotly. I am choosing to live as I have much yet to do. I am not giving up!

3 excellent years later

Reading back, I see that the more normal my life becomes, the less I need to write this blog as there is little new information on the Melanoma front and more general family and literacy news, which falls out of the ambit of the blog. I do have the odd gentle enquiry about whether I'm still around or if the silence indicates that I'd shuffled off!

I've had three Dendritic Cell Vaccines this year. Two caused big immune reactions and the third a very mild one. Strangely enough, I have also had two huge unexplained immune reactions which have been out of the known range of a vaccine. Such is the life of a lab rat!

This picture show the tube that contains 2 million of my own white dendritic cells that have been exposed to my own cancerous tumour cells, (which were removed by a liver resection two years ago and carefully stored frozen), taught to recognise them like sniffer dogs and then ready to be put back to do their job of attacking the tumours in my body. There are only 3ml of vaccine. It is quite miraculous and I am so lucky to be able to access this, which is the forefront and future of cancer medicine. Ali has studied this in Molecular Medicine this year, so he has the best understanding of it all.

The second of the unexplained immune reactions has been in the last week and has reduced my usually happily busy and productive life style to something far less exciting. I have had the classic immune response; temperatures and shivers, pain in joints, the tumor in my chest swelled up and felt like a cricket ball, low blood pressure, racing pulse and general flu like symptoms. It seems to be tapering off now, but I have had to take the decision to discard the next vaccine that was ready and due today as even the drive to Pretoria seemed too much. There is also the risk that over stimulating the immune system that is already compromised may cause auto immune disease. A risk I'm unwilling to take.

The next debate that I've been having is about the risks associated with the exposure to radiation which is in the CT scans I have regularly. I think I've had 10 already and 3 PET scans. When I walk through the scanner at the airport, I always set the alarm off! I am radio active and probably luminous too.

The surgeon who took the tumors from my liver for the vaccine said that I was more likely to die of radiation than cancer!

I have tried thermography, which shows masses by delineating the heat around them. Apparently tumours give off a lot of heat. Unfortunately the test was unable to identify the big lymph gland tumour in my chest, so while uninvasive and causing no harm, this was not a solution. I have also investigated PET scans and MRI scans and the advise I got from a highly regarded radiologist was to continue with the CT scans. As I have plans for my future, I am not keen to be treated like a terminal patient, where palliative care would allow decisions that would be appropriate if there was no future to compromise.

On a lighter note, I do think it is possible that these two immune reactions may have happened because of excellent healing that happened on lovely holidays.

Italy in July with Tim and Nicola. Rome and 6 glorious days with Phil and Di Duff at la Toscana in Tuscanny.

Sienna with Di

Berlin the marathon map, Nic took 30 minutes off her London Marathon time. There were 100 bands playing and Berlin was at her best. 

Budapest, the Fisherman's Bastion

Berlin Opera la Traviata, Nic's first opera

The healing hot spring baths at Gelert, Budapest

Also, my work with these perfect cherubs and the wonderful volunteers is definitely healing.

Learning to distinguish b and d using thumbs. Put together they make a lovely bed!

The Link has grown exponentially in the past three years. This year, a centre opened at Parktown Public School, the centre at Yeoville extended to include maths, Klopper Park opened and we have laid the foundations to open a new centre at Holy Family College in the new year. At the moment, we are reaching 653 children a week and most of them are getting 2 45 minute sessions each. It is thrilling work, which certainly has a lot to do with healing.

The mystery continues to unfold. Ekard Tolle says the future is a construct on your imagination, so I'm happy to leave it at that.

Generally smooth sailing

A glance back at 2012 made me realize that overall it was a very good year for me and my health.

CT scans, oncologist visits, vitamin C drips, and the rigmarole around the Dendritic Cell Vaccines are a minor part of my happy existence, which fit in relatively easily. My sessions with Sarah, my counsellor have become a very positive part of my life and I look forward to them and enjoy the time with her enormously. I feel that the backbone she said I needed to get at our first session over two and a half years ago, is coming along well!

December brought two scary bumps. The first was a massive reaction to the vaccine, which unlike the previous round, lasted 4 whole days. I was really ill with high temperatures, huge body aches, headaches and bad flu like symptoms. This was a classic immune reaction, which while desirable in terms of the vaccine, was difficult to manage. I also had a sharp pain under my sternum, which was relieved by the anti acid drug Nexium. I recovered well and we went down to Cape Town for James' graduation.

It was a splendid occasion and we were delighted to have my mum with us to celebrate.

On our return, the sharp pain started again and after a couple of scary nights, a gastroscope, some sonar scans and consultations with doctors, it became apparent that the tumor that had grown over the year was pressing on my oesophagus and causing gastric reflux. It is in a bad position. Tim was with me through all this drama. What a remarkable man.

But it was Christmas, and there were good things to do and luckily the Nexium has kept the symptoms at bay. So, knocked down, but back up again.

We had a perfect two weeks in Plett. The weather was amazing and we enjoyed being in a house with a lovely view and everything we needed.

Ali had some delightful medic friends to stay and Nic had Nomi with us for a few days. Nic was having physio daily for her sinus', which had been acutely and chronically infected for 5 months.

Unfortunately, James could only be with us for a couple of days as he needed to get back to Cape Town to study for his first board exam. He and Tim had a bonding drive from Plett to CT and Tim set him up with an air conditioner and a full fridge and freezer to get on with the task at hand.

We did the 'great trek' across the beautiful Karoo home and Nic flew back to her London life. The next day I whipped down to CT to steady the board writing crew. James had 2 friends studying with him at the flat and my role was of cook and bottle washer and to be quiet in-between. They really worked hard. We did have one small break to take Michelle out to dinner for her 21st.

Within minutes of returning to Joburg, I had the call from Nicola to say she had seen her ENT in London and that the only way forward with the sinus', following 7 antibiotics and a CT scan, was surgery. So 4 days later, I was on the plane to London.

I was there for three weeks. I knew she needed me. I was delighted to find that I could enjoy my daughter's company so much under very trying circumstances. She has had a dreadful time. The operation became complicated and took double the time planned, she had bad pain, horrible reactions to pain killers, a trapped nerve and a second anaesthetic, significant fatigue and a long and jagged recovery period. We were so lucky to be supported by the family and good friends, which made it a lot easier to manage. The Bernsteins had me to stay the night of the operation, having popped into the hospital at 10pm, while we were struggling to get Nic's pain in control. I arrived to stay at 2pm. Is there any reason why there isn't a pediatric mothers' room when ones' child is 25?

Tess and Nic

The Bremners lent us their car to drive down to Katie's cottage in Suffolk. What an experience, driving in London.  

The cottage was charming and the perfect, warm and beautiful place to be for  recovery. Nic watched all 3 seasons of Downton Abbey. Big Nicola and Anna Bashall came to stay with us to cheer her along, bearing healthy food and good humor in quantities. Martin and Nicola drove down again the following Sunday and got us through a horrible day of bad health. Katie called from SA daily and made sure that oil for heating was delivered pronto and that the charming neighbors kept a good eye on us.

Nicola, Nic and Anna Bashall

Tim was in constant contact and shared the anxiety with me. He had a lot happening at work at the same time.

Nic, Grace O'Malley and Frankie Ross-Smith

Frankie met us at Holy Trinity Brompton, where we had the privilege of hearing Nicky Gumble preach.

Nic, me and Francesca

Francesca met us for lunch near her office. Lovely to see our bride so happily settled.

Snow on one of my walks .

Nick and Suzie both made time to meet us for cheering breaks.

I didn't have a moment of illness in all that time. Sarah says that caring for another can be healing and I know that to be true.

Nic is back on her feet now, thank goodness. 

In the interim,  Tim represented us at the ceremony where Ali and his friends took the Hippocratic oath. Second year, with the delights of Doris, the cadaver, and the huge anatomy and physiology textbooks is in full swing. He never seems to have a day off and is constantly surrounded by his med student friends. They are in and out for study sessions, which is lovely for us. The house buzzes with constructive activity and good humor.

James is now fully employed at UCT doing his first year of articles as an Academic Trainee. He is doing his masters in Finance and tutoring for the year. A wonderful situation altogether!

I need to gather the energy to do another round of the Dendritic Cell Vaccine in the full knowledge that  I may have another huge reaction. It is difficult to plan for it as there is so much happening with The Link. There are 5 centres up and running now and a 6th one to open in April. I am teaching 3 mornings a week and loving every minute of it. There are also many good and interesting meetings in-between. There are about 250 volunteers working in Joburg now and we are reaching about 500 children a week. They are incredibly responsive and the results from last year are fabulous. This work is healing.

Molly the Mini

Here she is!

What a thrill, my first ever brand new car.

Licensed to have fun. What a spoiled girl and a big vote of confidence in a big, busy future. Tim is 

endlessly generous.

We had a hectic 5 days at The Wild Coast sun at the KPMG Africa conference. Each day was packed to capacity with meetings and functions and opportunities to meet extraordinary people from all over the world. There's never a boring day where KPMG is concerned.

James has finished his gruelling GDA year at last. I'm sure it has been worse for the supporting team than him. He spent 5 days last week on the Orange River with 65 of the other GDA survivors. 

He flies back to Cape Town tomorrow, then head off on a month long road trip across South Africa with 4 friends on Friday. This is exactly what he needs.

The Link@HA Jack opened 4 weeks ago, after almost a year of hard, committed work by the Centre Manager, Nicky Elphick, Nicky Franklin and their band of remarkable women. They have a fabulous, enormous room and 80 signed up volunteers.  This is our 4th centre in Joburg and we have another 2 which will open some time next year. 

We have formed an exciting relationship with the Sunday Times, who have an initiative called `N'alibali, which means it starts with a story. They deliver their supplement to our centers every week and each child that we work with goes home with a book. One beautiful child, Belange, (beautiful angel) was thrilled to tell me that she now has 3 books. Laugh or cry?

 Nic has been in Glasgow on business.

Ali has had a wild week writing 4 monster exams. He has taken it in his stride. 2 more to go, then almost 3 months van. He's off to Bali with a bunch of mates for 3 weeks.

Two years post first prognosis

Snow in Joburg!

While life roars on at unabated, I do have the occasional nudge to remind me that I live with cancer. The latest CT scan shows that some tumors have disappeared. The one I was happy to see the back of had been in my left lung. However, two badly positioned ones have grown, but not enough to alarm the oncologist. My plan is to continue with the Dendritic Cell Vaccines and the huge drips of vitamin c for now and keep living as I do, fully, with great joy and delight.

Life as arranged by Tim, has continued in its perfect way. We went to England for the wonderful family wedding of Francesca and Matthew.  Afterwards, we went up to Scotland to see the lochs and Edinburgh.

There are, of course, magnificent photos of the wedding, but my new Mac has me foxed, so I promise I'll add them when I can harness the energy of anyone under 25 to help me (at last James has come to my aid!).

Tim and I had a long weekend at Thendele in Natal at the end of July. It is a beautiful place of happy memories and we walked far and felt relaxed and restored.

I dashed down to Cape Town for 2 days in the middle of August to see James, meet Maurita from Shine and to attend the Wetpups Matric Reunion. It was amazing to see the matric boys, many of whom I had taught in grade 3 and then again in Grade 7. Some had matured beyond recognition, but most were lovely big versions of their small selves. I felt a huge, warm connection to them and was so interested to hear all their news. It was a wonderful opportunity to catch up with my colleagues and to be reminded of those teaching years, which were such happy and fulfilling (while fully manic) ones.

James and Ali had a weeks vac in the beginning of September, so we gapped it for 5 days to the Vic Falls and to a lovely place, Imbabala, on the banks of the Zambezi in Zimbabwe. We saw Africa at its best, driving in lovely old Landys and bobbing down the river fishing for tiger fish. Seeing Tim completely relaxed in his homeland, Zimbabwe, was the best part altogether.

Last week, Tim and I headed off again for the week on what Ali called "adorable", a road trip on our own! We had 3 nights at Giant's Castle, which is absolutely exquisite. We hiked 12km the first day and 18km the next. I was happily surprised by the strength in my legs. We had one night at the Wild Coast Sun, where Tim had preparation work to do for the Africa Partner's conference, which takes place next month. Then we had one lovely, happy night with the Cox' in Durban and one at Three Tree near Spionkop Dam.

We had the soul searingly sad news that Dean Butchart had died while we were away. I met the Butcharts through friends and they were down in Joburg from Zimbabwe this whole year, while Dean was treated for lymphoma. He was only 17. I have had the privilege of getting to know them well and felt a kindred spirit in Dean as he endured round after round of chemo, radiation and surgery. His suffering made me realize how lucky I have been and how little I have suffered. On one of the occasions when I went to pray with him, I told him how sure I was that God had power enough to heal us both. The anguish and shock of that family is indescribable and while hope helped them to be the best family and to support Dean completely, we are all gutted by his death, as we felt so sure he would survive.

Living fully involves having the strength to embrace the terrible lows of life along with the highs and they do present simultaneously, which can be confusing. I know about survivor guilt and I don't have it, but I was very grateful to Hilary, our priest, when in her sermon at Dean's funeral, she gave us permission to ask why.

Celebration some pics