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