Happiness, in order to last, will always be an inside job, a constant quest involving reflection, action and further reflection--an active, daily pursuit frought with peril, distractions and the even greater danger to it, malaise, that lazy, bit by bit forgetfulness that day by day lets go of the dream--until we wake up old and wonder why and what it all meant...

The only certainty is that life goes on, with or without us, with or without our contribution, with or without our happiness--and, therefore, only each of us can determine our own happiness fate, and only if we consciously make the ongoing decision to go after it.

What does it look like?
What does it feel like?
What does it taste like?
How do we find it?
How do we keep it once we do?

Look around...maybe, just maybe, it's already there...



The unexpected continues to turn up. I guess that is what life does. Better than the total uneventfulness of death I guess. In any case the thriving I intended at the last post didn't go quite as planned. I managed to get septicaemia (bacteria in the blood stream) and ended up having to call an ambulance and spent a week in hospital on intravenous antibiotics. Then a week at home recovering from that. Now I am back on track and going to the gym three times a week, Tai Chi classes once a week and intending to increase my swimming as the solar heating is finished and working for the pool. I am currently on my first intravenous treatment since before I went to hospital. I would have started earlier this week but the fluid bags were out of date so I didn't want to risk repeating the hospital episode so waited for a new order of fluids to come in.

The drawing course I enrolled for has also started. Didn't enjoy the first week so much but this week was better and I actually improved which was gratifying. Also enjoyed the actual process and the 2 hour class went by very quickly. I even feel inspired to do some drawing at home. The Tai Chi class was also good this week and I hardly had to sit down during the class and I stayed an extra 15 minutes for the practice of going right through the stages 1-6 at the end of the class. Most enjoyable.

My stamina and strength at the gym are also improving. I have lost a lot of muscle in the last 18 months with all the lying around. I went and saw Dr Fluhrer a couple of weeks ago and he tested my body fat percentage which is a horrific 30%. This means that I am carrying about 6 kg of fat (yikes) and without the fat I weigh about 52 kg. This is underweight for my height and reflects the low muscle mass. So I really need to build the muscle and get some strength back. This should help with my lethargy as well, more muscle will give me more energy. It is also much nicer to exercise without large breasts getting in the way and not having to wear an uncomfortable bra. The advantages of a double mastectomy despite still getting some discomfort from the surgery where the fascia was removed from the muscle on the right side. Glad that no actual muscle was removed.

Emotionally this last week has been interesting. I have been crying a lot on some days for no apparent reason. I will be driving along and thinking about the lovely trees along the side of the road and suddenly I will be in tears. I haven't cried very much since I was diagnosed. I may be feeling a combination of grief at nearly dying, and I am not out of the woods yet, and joy at surviving. Perhaps being home, getting into a routine of treatment that doesn't make me very sick and that requires less courage, is allowing me to let go a bit more. Less pushing hard to keep going and more relaxing into a life that is not completely focused on cancer and its treatment. Maybe the letting go is allowing the tears to come that I have held onto all this time. In any case I am not worried about it, just intrigued. I have also had moments of feeling physically almost normal - wow!

Intellectually I am struggling a bit still. My memory is shot to pieces. Lots of past stuff I don't remember at all, short term memory is also not good and I will forget things that I did and said an hour ago. Presumably this is all due to the drugs I have had over the last year. Hopefully this will improve again with time. My hair is growing back so maybe my memory will also be restored. I haven't forgotten everything in my past, it is just like a jigsaw puzzle with some of the pieces missing. As I am trying to live more in the present anyway it is not a great loss, just can get a bit tricky if I have promised to do something for someone and then I forget.

The garden needs some attention and I have managed to do a bit of pruning. The bromiliads are flowering and look stunning. The heavy and incessant rain let up this week and it has been nice to have some sunshine as well as heat. Life is good.

Surviving and thriving

Linda

Return to Oz

Face your deficiencies and acknowledge them; but do not let them master you. Let them teach you patience, sweetness, insight.

Helen Keller










We are back in Australia and it is taking a while to recover from the combination of treatment in Germany and the long trip home.

My fears for the second Removab were realised. We were very thankful that we had organised to spend the night in the Klinik. The reaction was only marginally better than the first and with the added joy of vomiting and diarrhoea. The day after the treatment was hard as well, although there was little pain, there was extreme exhaustion and malaise. The third Removab was on Monday the 18th Jan and we were leaving on the Thursday. The reaction was less on this treatment in terms of pain, shivering etc but the day after was worse. Even lying in bed seemed like too much effort. I could not get comfortable and only managed to sleep intermittently despite the feeling of exhaustion. Too tired to read or listen to my iPod. Yuk.

The trip home was uneventful. Managed to fit all the medications in my suitcase with Glen taking some of my clothes. The main problem was bringing over the Mesenchymal Growth Factor (MGF) injections as they were in vials that needed to stay frozen. So I had a huge styrofoam container with dry ice to fit into my suitcase. In the end almost half my suitcase was filled with medications. At least it did all fit. Glen drove to Frankfurt Airport and with the help of the SatNav we got there without any problems. Had a bit of rain on the way and a bit of snow but the roads generally were pretty safe. Plane didn't leave till 11.30pm, so a long day already, then a 22 hour flight. Only managed 5 hours of sleep on the plane. My sister, Yvonne, picked us up at the airport which was great. It was an early morning arrival and I tried to stay awake for the day to slot into the change in hours but ended up sleeping most of the day and the night.

It's taking a long time to get over the jet lag and treatment. I decided to give myself a little break from the treatment regime I was to do at home just to let my body recover. I was waking at around 4 am every morning and this has helped me to get back into meditation, so there is the silver lining on that cloud. Just started back on Thalidomide tabs two days ago and a new antiviral drug for Herpes 6 yesterday. Thalidomide does seem to help with sleep. I had been continuing with all my supplements such as CoQ10, quercetin etc. The MGF is every 10 days and is a 5ml intramuscular injection. It was due two days ago and I had been worried about giving that to myself. I am used to intravenous injections and infusions through my port, subcutaneous (under the skin) injections and smaller (1ml) intramuscular injections which I put in my leg muscle. The 5ml is too much for my skinny legs and so needs to go into my backside. Those of you who know me also know that my Gluteus Maximus is more like a Gluteus Minimus. I also didn't want to stand up and do the injection as I wanted the muscle relaxed. This meant that I could not look in the mirror to see what I was doing. In the end I just lay on the bed and did it. Wasn't as hard as I thought and I feel much more confident now in doing the rest of the course.

I have worked out my medication schedule following Dr Jacob's treatment plan and will start in earnest tomorrow. I have intravenous injections twice a week which includes Vitamin C with EDTA and magnesium sulphate (for chelation of heavy metals) and glutahione for liver support. Three times a week I have an intramuscular injection of Artesiane which is an anti malaria drug which helps kill cancer cells. There are two different subcutaneous injections, Thymoject and Polyerga, each once a week on different days for the immune system. So I have injections 5 days a week with the weekend off except when I am due for a MGF injection which may fall on a weekend. Then every second day I have Haelan via enema retention (1/2 hour). Not as bad as it may sound and easier than the coffee enemas I used to have. Once a month I also have Zometa via intravenous infusion to help my bones. I have managed to source all the necessary medications that I did not bring back from Germany such as EDTA, heparin, fluid bags and so on. I have a good supply of all my supplements and now have a supplier in the US that now ships to Australia and is very reliable.

Hopefully the treatments I am on will have minimal side effects and I will get some energy back. Tai Chi classes have started and I enjoyed that very much. I managed better than I thought and only got out of breath a couple of times and didn't need to sit down as much as I thought I would. Tomorrow I have an appointment at the gym to see if we can work out an exercise program that will help me build strength and stamina that will be manageable. Getting out of breath very easily at the moment. Even just having a shower can leave me out of breath. I have also enrolled in drawing classes which are once weekly. The meditation course we enrolled in starts on 13th Feb and goes over two months with a total of four sessions. Looking forward to that.

My experience with the Removab has made me even more aware of the need for meditation ( and Tai Chi which is really a moving meditation). When I was in severe pain there was a narrowing of focus - the pain, my pounding heart, my breath and the hope of relief. I tried to focus just on the breath but it was beyond me. Sometimes there was just the pain, totally overwhelming. I have heard it said that the sensation of pain can be reduced by focusing on it as pure pain i.e. not involving the mind, no dialogue - no 'this is agony', 'I wish this would stop' or 'when am I going to feel better?'. I did try that but couldn't manage it. The closest I got was to minimise it to a single focus - the desire for it to stop. Being adept at meditation would have been of great benefit.

What I did learn is that I do the same with other types of pain - emotional/mental pain. My mind builds it up like throwing wood on a fire and so the pain flares and burns more fiercely. Meditation is looking more and more appealing as a way to stop the mind inflaming difficult situations or feelings or making complexities where there might be simplicity and peace.

Perhaps with the silence and an apparent focus on one thing (e.g. the breath), without mental stories, I will actually be able to open myself, my heart, to the 'whole' and experience expansion, an opening of my heart, like a tight flower bud releasing into full bloom. This idea is appealing but the practicality of achievement seems seriously elusive. Hopefully it is a skill I can learn with consistent practice of meditation.

This is what I feel I must do. It is not enough to survive, I really do want to thrive - to feel the fullness of being alive in this world now, in each moment with an open heart, whether in pain or in joy, because regardless of what happens I will feel both. It is said that to be human is to suffer. While I agree that we all suffer as part of living we also feel joy, and in those dark hours we all experience that is a good thing to remember.

Surviving and thriving

Linda

Removab 2

Pain adds rest unto pleasure, and teaches the luxury of health.


Martin Tupper 1810-1889, British Author, Poet, Inventor





Today is the second Removab day. I must say I am not feeling very brave. Yesterday I started feeling better and we had lunch at the Klinik as it was getting late again with my infusions. By late afternoon I was feeling pretty good. This morning I woke up ok but then got very nauseous after drinking some lime juice and hot water. Had to take a Zofran. Oh well.

Truth be told, the last few days I have been feeling anxious about having Removab again today after such a horribly 'good' reaction last time. This morning I remembered some words of wisdom from a DVD I have by Loretta Le Roy called "the Joy of Stress" in which she says that you are guaranteed to suffer so.... why practice? I love that. Harder to put into practice than that simple idea might seem to indicate, however. Too much brain chattering. Nevertheless, it is something worth reminding myself of regularly and it also brings some lightness and laughter to what could be made, by my mind, into a somewhat grim situation.

Practicing suffering does seem to be a pretty common condition. Many of us seem to be constantly worrying about possible future scenarios that may or may not occur or past ones that we can not change. Future speculation has some place, I think, in making some possible necessary preparations. A bit like taking an umbrella if it looks like rain. However, we then need to let go and live more in the present. Preparations are not always necessary or useful. We seem to waste so much of the good in the present by worrying about the 'not so good' in the past and the future, both of which are pretty well out of our control anyway. If we live more in the present we may become calmer and more centred and be more able to deal with any adversities that may arise. We may even feel, in much greater depth, the good things that are in our lives now. If we walk down a beautiful garden path thinking about the rain tomorrow how much of the garden do we really experience as we walk through it? If we worry about a rock we may stumble on and break a leg over then we may not go out into the garden at all, or walk through it in such a state of tension and anxiety we may as well not be in the garden. If we spend all day contemplating our navel we may miss the garden as well. Or is that just another sort of garden?

Knowing all that, I still keep looking at the drip stand and the clock in trepidation for what is to come. Unfortunately, I don't think 'practicing' suffering makes me any better at it. The practice of meditation on the other hand .....

On a lighter note, it was snowing this morning and the snow shovels were out in force. It was also colder, the temperature having dropped back down to -6C. The news is full of horrendous conditions mostly in England and Germany but it does not seem too bad here. It just looks beautiful, smells lovely and softens all sounds other than the yummy crunch of snow underfoot.

Meantime I strive to survive and thrive remembering not to do too much striving and to look and feel around me in this lovely garden of life. When I stop and take my work ethic attitude out of striving it becomes joyous as well. I cannot wait till I am feeling better to live, I need to embrace life now as fully as I am able.

Survive and thrive

Linda

Tea Gardens (Oz) and Hallwangen (Germany)

May the stars carry your sadness away,
May the flowers fill your heart with beauty,
May hope forever wipe away your tears,
And, above all, may silence make you strong.

Chief Dan George
American Indain




More than a month has raced by since my last post. As usual full of ups and downs. I will do a quick fill in before the new start in Germany.

Early December we headed off with the dogs (left the cat with Louise, our wonderful house sitter) to Hawks Nest, about 200 km north of Sydney. There are actually two villages there - Tea Gardens on the Myall River, which is where my parents live, and then Hawks Nest across the Singing Bridge. It lies on the east side on the ocean with a gorgeous beach, on the south west side on Nelson Bay with its dolphins and on the west side on the Myall River. It is great because if it is windy on the ocean beach we can go to the bay and swim there where it is sheltered from the north easterly winds.

I hadn't seen my parents for about 8 months so it was wonderful to see them. The three weeks there went by very quickly. The house we had rented was flea infested so we were able to choose another house that was available but it didn't have any fly screens - not good if you want fresh air. We ended up in a lovely house in Tea Gardens near the river. As it turned outI spent a lot of time in bed so it turned out to be really comfortable with lots of fresh air and a short walk to the river. Just after our arrival we had dinner at a local restaurant on the river with my parents, very enjoyable.

Chemo therapy continued with a day trip back to Sydney, very tiring for Glen driving and for me feeling unwell from the chemo. Meantime I had also started Thalidomide and Artesunate which is an anti malarial drug that was tested effective in the Greek blood test results for promoting cancer cell death. I was giving myself the artesunate by intramuscular injections three times a week. I am still on monthly Zometa for bones as well as intravenous vitamin C twice a week, increasing the dose from 30g to 45g. Managed to get in a few dinners with my parents as well as lunch and we made them Christmas lunch. That went well other than mum had a little turn and we had to call the ambulance. It all turned out ok in the end so that was good. Gave us all a scare, especially mum. The combination of the thalidomide, Artesunate and the chemo Gemzar made me feel pretty unwell so we didn't get to the beach as often as we would have liked. When we did it was beautiful. I swam in the ocean one day but my legs went all rubbery from jumping over and under the waves. On the bay it was a bit easier but there is really nothing like swimming in the surf, it is so invigorating.

We returned to Sydney on the 26th of December and on the 27th we went to a friends 50th birthday down in the Royal National Park in the south of Sydney. It was at a lovely little cottage in the bush and right on the water. Enjoyed catching up with some friends as well as the beautiful scenery. I had more chemo on the 28th. Had contacted Dr Jacob by then and had decided to stop thalidomide and Artesunate so that I would be well enough for the flight to Germany on the 4th. Even so things didn't go as well as planned and we had to cancel the New Years Celebration we had planned with friends on the foreshore of Sydney Harbour to watch the 9 pm fireworks. Just as well as on the 31st I had severe abdominal pain and ended up in hospital for a few days. Great to get iv pain relief and the ultrasound and CT scan I had while there showed no reasons for the pain. Deduction was that it was probably biliary inflammation. Went home again on the 2nd of January feeling weak but otherwise much better.

The good news while in the hospital was finally getting the second opinion on the PET scan - NO detectable tumours!!!! So all the 15 visible tumours are gone - wow. Great way to start the new year. The blood results from Greece showed there are still lots of active cancer cells in my body so that will be the challenge for the next lot of treatment.

We left for Germany on the 4th January and the flight went much better than expected. They moved us to better seats and we got quite a bit of sleep and it was only about 1/2 hour stopover in Singapore. We got to Frankfurt at about 5.30am and were in our little red Kia rental car by about 6.30am. The temperature was minus 11 degrees centigrade and there was much less snow than we had expected. Glen got us on the autobahn before I had even got the satnav working. The roads were clear of snow but the countryside and houses had a nice white layer on them so it was very pretty especially once we got off the autobahn and into some more forested hilly country. It was dark till about 7.30am when it started to lighten up but was not fully light till after 8am. We stopped at a petrol station and got a lovely hot chocolate and a nnot so lovely sandwhich. The autobahn was just as we remembered. We would be travelling at 120 km/hr and cars were passing at at least double that speed. Incredible. Once we were off the autobahn we travelled along some quite narrow roads that were very picturesque. I must have put in the wrong road in the satnav because we ended up in a little lane with no houses, buildings or anything really and the satnav said "you have reached your destination". Well not quite. I reconfigured the satnav and we were soon at the right place. Herr & Frau Ziegler were very welcoming and our apartment was a pleasant find, very spacious. The lounge room is positively huge and there is a separate kitchen/dining room, two bedrooms and a spacious bathroom with a large bath as well as a shower. We were very tired from the 22 hour or so flight and then the 2 1/2 hour drive. A hot bath was very welcome. We walked to the clinic, a very pleasant 500m walk through the snow covered street. On arrival we saw some familiar faces but I had no treatment. Dennis, the head nurse, who we knew from Bad Wiessee, gave us a tour of the very substantial clinic. It is all very nice although the pool is not yet ready for swimming. We went back to our apartment and managed to stay awake till about 6 pm and then were out for the count.

On the 6th January I had the antibody treatment, Removab. It took 9 1/2 hours to infuse. We ended up having lunch at the clinic, the food was great. Reactions to the antibody are expected at about 6 hours but I still had no reaction at 9 1/2 hours so we went back to the apartment. An hour later the reaction started - not very nice. Severe abdominal pain, nausea, headache, joint pain. By 9.30pm we had to ring the clinic. The mobile phones didn't work so Glen had to go upstairs to the Zieglers and they rang. I ended up back at the clinic and got some blessed relief for the pain with an iv infusion. Spent the night and till 5pm the next day in the clinic hospital room. Apart from feeling extremely unwell, although with a lot less pain, the room was very nice. The view was of a lovely blue spruce in the foreground, then some snow covered rooves and in the background a gently sloping hill with snow covered meadows and pine trees.

The plan was for me to have hyperthermia treatment but that has been ditched as it will be too hard for my body to cope. I will be having another antibody treatment early next week at double the dose I had this time. Then next Saturday I will be having the vaccine which made me very sick last time so I expect something similar this time. This will be the third vaccine I have had made fromt the tumours taken when I had the double mastectomy in May last year. We will stay at the clinic overnight for the antibody treatment as a precaution. the second injcection is not supposed to cause as bad a reaction at the first but I seem to be a bit out of the norm for a lot of the reactions anyway. If I get pain I will be able to get relief that much faster.

Today I am still nauseous have a headache and very tired. My eyelids are very swollen but improving a bit. Treatment for the headache and nausea don't seem to last very long and I still also have a slight fever. Hopefully I will feel better tomorrow. I have also spoken to the doctor who gave me the stem cell treatment in Bad Wiessee, he is very pleased with my progress in terms of genetic predispositions of the cancer cells so that is good news as well.

So now I will try and enjoy the environment as much as possible and remember the treatment that makes me feel unwell is making the cancer cells even less well.

Thriving & surviving

Linda

Chemo revisited.

Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos into order, confusion into clarity.... Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow.

Melody Beattie


The time is racing by and I am trying to focus on the positive and gratitude - for what I have - the love of family and friends, a nice place to live, lovely pets, a pulse. Well I think that last one is both funny and relevant. If not for the excellent treatment I have had I would likely be dead or dying now. Another patient we met in Germany, Frank, has died. It was a shock, we thought he was doing well. He developed complications. Many cancer patients do, the treatment is hard. It is a sad loss, Frank was a bright, warm and friendly guy. It must be a very difficult time for his wife, Lori, and our deep sympathies go out to her. It is a reality check too for those of us still working towards getting well. Again, really reinforces the idea of making the most of what I have now and enjoying life as much as is possible with whatever physical discomforts I may have. Maintaining a positive outlook and a sense of humour becomes a priority.

On that note, I had a wonderful birthday picnic. More people than I expected turned up with some nice surprises. The weather was great and I had chosen a lovely little park right next to the Kurringai National Park just where McCarrs Creek runs into Pittwater (a beautiful bay in the north of Sydney). It was a excellent mixture of family and friends and dogs. I had purposely picked a dog friendly park and we took our smallest dog Pip Squeek. She behaved herself pretty well other than eating little Theo's (my niece's 1 year old) cheese and avocado sandwich which she then proceeded to throw back up. It was a great way to celebrate reaching 58 in a reasonably well state and getting better with a good chance of being better still for the next birthday.

There were also many lovely birthday wishes for me on Facebook which was great. I am really appreciating good wishes from people a lot more these days, I can really lap them up. Also got some really nice cards.

My sister, Paula, arrived from the US so that was wonderful. After a couple of days she went off to visit our parents for a while. Now she is back and showing some friends from the USA around Sydney and the environs. I think they are having a pretty good time and I get to see Paula every day for a while.

I knew I had to have more chemo when I came back to Australia but I had been putting it off as I knew it would make me feel sick again. I actually had about a week or so of feeling almost normal. Walking the dogs for just over a kilometer every day, doing some gardening, staying up and out of bed almost all day with maybe a little lie down in the afternoons. Great change from lying on the bed most of the day. It was nice to get a taste of being well. Made me want more of it. Finally I had some chemo last Thursday and have been pretty sick ever since. Yesterday I started to come good. Had the usual nausea, exhaustion, breathlessness. After a few days I was actually ok as long as I didn't do anything. Having been better than I had been for about 18 months, just before the chemo, I started feeling impatient with being sick and having to go through more treatment. So my aim is to be really well and have finished treatment by the middle of next year. I know I have some treatment coming up in July but I want to be in much better shape and for that to be the last difficult treatment I have. My vision for the future if you like.

Meantime I have also been caught up in household chores and maintenance, tax issues and so on. Starting to get on top of things and hope to have everything pretty well sorted by the end of next week as we are going up to Hawks Nest for 3 weeks with the dogs. It is a lovely seaside spot with a river, a beautiful bay and the ocean all in one area. My parents live in the next village,Tea Gardens, and I am really looking forward to seeing them as I have not seen them for about 8 months. We will be back home on the 27th of December and then off to Germany on the 4th of January.

Had blood taken last Monday for testing in the laboratory in Greece to see how I am going and if any of the cancer sensitivities etc have changed so that a new treatment plan can be formulated. Routine blood test was pretty normal. Slight increase in cancer marker from 25.1 to 31 which was disappointing but still pretty low. White cell count was in normal limits but on the very low end. So that would have gone down again with the chemo. Need to get that checked again. Everything else was normal, the critical ones, liver and kidney function, were fine. Obviously plenty to be grateful for.

The garden is doing reasonably well. Needs some work, which I am looking forward to. Did a bit when I was feeling well and enjoyed it thoroughly. Nothing like watching plants grow and thrive and provide habitat for various little creatures. The Jacaranda has been flowering with its beautiful purple haze. There are about 10 in our street and they have been particularly stunning this year. My favourite little flowering Eucalypt has started flowering early and it's orange flowers are exquisite, the colour just luscious. It is still full of lots more buds so should be very spectacular as they open up.
Surviving and thriving

Linda

An Aside

The Egel

Prickly back facing the world
Soft underbelly
held close to gentle mother earth
Or curled into the centre
unreachable.

Sometimes there is a change
Prickles becoming soft feathers
Leaving the earth
Eyes sharp and clear
Unafraid
Power surging
Reaching higher.

Sometimes
I am both at once
A contradiction.

-Linda de Haen


The word Egel is dutch for hedgehog. When read as an English word I would pronounce it the same as Eagle. I like this concept and sometime ago wrote a poem about my feelings around the differences between these lovely creatures and the analagies that I drew with my feelings at that time that still resonate for me now. The word play on Bald Eagle and bold Eagle also intrigues me.

I find both animals incredibly fascinating. That contrast of the hedgehog curling up and protecting itself from danger and its low to the ground view of the world, dealing with whatever comes up along its path. Then the soaring openness and power of the eagle with it's clarity of vision and view of a bigger picture from the airy heights of its flight, diving down very specifically at what it wants. One is prickly and gentle the other has soft feathers and is fierce. Such contrasts within and between them. Both have great and very different survival skills.

The picture of the Bald Eagle was taken near my sister's place in Arizona at a regular haunt next to the Verde River quite near a highway. I don't know where the hedgehog photos came from, so I can't acknowledge the photographer, but they are adorable.

I was reminded of the poem because of the mixed emotions I am feeling at the moment. That anxiety and fear and wanting to curl up and not deal with the perceived 'threats'. On the other hand I feel strong and fierce and want to soar through life. I am aware that I need to accept both those parts of me and and nurture them. It is fine to be a contradiction and feel contradictions in the same moment. That is my life, for me, at this time.



Survive and thrive

Linda

Being me, being home

The art of being wise is knowing what to overlook.
- William James


It is easier to be wise for others than for ourselves.
- Francois de la Rochefoucauld



We have been home for just over a week and there are mixed feelings, events and emotions. Medically it is business as usual, some ups and downs and the inevitable waiting for results, progress and revised plans. The house has needed various items attended to and then there is the 7 months of backlog of paperwork. The physical is pretty closely related to the medical with generally better energy but some setbacks with symptoms and tiredness. There has been a renewed realisation of my weakened state. Mentally and emotionally there seems to be a fair bit of fragility.

First my visit with Dr Fluhrer. I had printed, in my chemo brain memory bank, that the appointment was at 1.30pm. So I got up at about 5.30am did some yoga, meditated for 30 minutes, had a shower and walked the dogs before breakfast. At 9 am I thought I had better check the time and the appointment was at 9.45 am. Ooooops. Major rush out the door not properly prepared with written list of questions. Managed at least to take my list of current medications and supplements and the copy of the PET scan. Stressed and flustered I got there right on time. One of the things I like about Dr Fluhrer is that he is very pleasant and gets straight to the point. He also answers questions really well, the problem for me is remembering to ask the questions. Anyway the short version is that I go off all tablets, except Arimidex, for 10 to 14 days to give my stomach a rest and hopefully ease the gastritis. Meantime run general blood screen and include test for Helicobacter, Candida (in case they are the cause of the gastritis) and the tumour markers. Hopefully will have results by end of the week. Meantime he will email Dr Jacob in Germany and confer regarding rerunning blood test for Greek lab. This is basically the same test I had in April prior to my treatment in Germany starting. It is a very comprehensive test. My understanding is limited on the complexities of the test but basically it looks at the cancer cells - their genetic aberrations and their sensitivity to various chemotherapy, immunotherapy and supplemental treatments. This has most certainly changed since the treatment started and the tumour cells may now be resistant to some of the treatments that they were previously sensitive to. Blood may be taken next Monday for analysis in Greece. It will then be a few weeks before we get the results on which a new treatment plan will be based probably for the next 6 months although there will always be adjustments to the plan as necessary depending on my responses. More waiting for now.

House, and pets, has been pretty well looked after by the house sitters but there is still the inevitable build up of minor repairs and maintenance. The aquarium was not intended to be left for so long so I had only left instructions for shorter term maintenance. It is to the house sitters credit that any plants and fish remained alive at all. Major overhaul performed. Then I was just going to get some little Neon Tetras to put a bit of colour back in the tank but I don't know how I thought I would be able to visit the aquarium shop and not get sucked in to some lovely other fish. So, three discus and 4 gouramis (as well as the neons) later.... the aquarium looks much better and I felt 'fluffed up' (a Petrea King expression for the necessary positive input for the chronically ill - actually for everyone - we all need it from time to time).

The mail, 7 months worth. Some I didn't even open, just filed them in the waste paper basket. Others were a bit of a freak out. House insurance overdue, car registration and insurance completely out of date. Very lucky nothing nasty happened. So now I have opened all mail and dealt with the really urgent stuff. The rest will just have to be done a bit at a time.

Couldn't really get into the garden shed to get to the pool pump so did an instant cleanup of the shed. Many of the indoor plants had died so cleaned out the pots. The garden needs a major prune. I tried to prune a smallish daisy bush out the front. Normally I can just pull them out of the ground but I was too weak. So I started to prune it back. Got about half way and had to give up totally out of breath. That was a serious reality check into what a weak and muscle wasted body I now have. Very disheartening experience. Moving right along to the gardener - he will do the pruning. The power of delegation, there is strength in that! There are some beautiful flowers in the garden and Yvonne bought me a gorgeous pink Hydrangea.

My wardrobe. How fortunate that I had kept some 'thin' clothes in case I lost weight. Out with the 'fat' clothes and resurrection of the 'thin' ones. Hallelujah! With the clothes Paula gave me, some new ones I bought and what I saved I have a pretty full wardrobe. I was going to get some new swimmers. Paula gave me a nice pair of hers but thought I could do with another one for the beach holiday in December. Ha! Don't need to buy a thing. Nothing like a pair of scissors to get rid of some big busted cups and end up with a more svelte pair of swimmers.

Emotionally - a bit scary. Have been much more anxious since I have been home, not sure why but maybe to do with the fact that this is where I got cancer. That is, I relate home to getting cancer not getting rid of cancer, memories of the diagnosis rather than the treatment. However hard the treatment has been the diagnosis was extremely stressful. There seemed to be little hope at that time, especially after talking to oncologists. The treatment has been very hard but it is much more positive and hopefull. The other problems is the feeling of overwhelm with all the paperwork, house and pet maintenance, shopping (even when done on the internet). Just the day to day stuff really but it feels like a lot. Need to be patient with myself and not try to do too much at once. It is more difficult too as Glen is HSC marking, for a week or so, full time. I have become very dependent on her care and it is difficult to adjust. It is also a reminder of what will happen next year when she goes back to full time work at the end of January.

Physically I have had some bouts of gastritis which always seems to knock me about for a bit. Last one was at 2 am this morning. Pain and nausea - yuk. I am very cranky today so am actually glad Glen is not here. I have been more tired again yesterday and today, maybe I have done too much over the last week. Just go through periods of getting fed up with my limitations and push myself to do stuff, not always the best move. I am able to do more than I did when I left 7 months ago, so that is a positive. Unfortunately I am still finding it very difficult to deal with my physical limitations, just very frustrated with it at the moment.

In view of the above I have rung my therapist for an appointment. Waiting to hear back. That is one thing I have learned, even before I got cancer, if it starts to feel like too much - get help. I have learned to use the resources available, a very valuable lesson that has been.

I am sure I will come out of this trough, I always manage to bounce back, I am like a super ball. Remembering that at a deep level is sometimes difficult but I will survive and I will thrive!

Linda