On the hard shoulder...........

This is how Geoff summarised by situation.  My head is so full, I need to get some order into my thoughts. So why the �hard shoulder�? I have left the main stream traffic all heading into the same direction and am taking stock. Traffic is passing and most don�t notice me on the side����� Before I explain, quite funny, most really don�t notice me. I have walked past people who know me and quite a few don�t recognise me. I guess when I was still wearing my wigs, I did not look that different as the hair lengths and colour were similar to what I once looked like. There are definite advantages. I tend to keep away from the town where we live, I know too many people and don�t want their pity ( expressed by a few) and don�t want to make the �more uncomfortable�  people cross the pavement when they see me ( also experienced that one). So all in all, quite handy to now look like someone different.  I digress.

Since talking to my friend Gerti from Germany last November, I thoughts that lymph drainage is what I needed. I have a lump , the size of a golf ball / small egg, under my operated arm pit. After much research, I contacted  the �body work clinic� in Estepona www.thebodyworksclinic.com. They offered this service and I made an appointment. I had explained my back ground prior to making the appointment. When I arrived there, Estelle, the lady who runs / owns the clinic , only wanted to use the electric machine for the lymph drainage. Having read that breast cancer patients should not have any �interference� on the side where the operation was, including taking blood pressure, blood test, the IV ( Herceptin), I told her that I did not want the machine on my left side. She proceeded to treat my back and right arm, but did not touch the left side, not even manually. It turns out that she only offers lymph drainage using the machine, which I was not informed about prior to making the appointment, even though I specifically asked. Maybe a misunderstanding, I thought.  After I paid, ( not a small amount) and asked for the invoice, she told me that she had to state �Physiotherapy treatment�. I advised her that I wanted an invoice for the work she had actually carried out, but she refused, telling me insurance company would not accept this. Whilst it is very kind of her to worry about whether or not my insurance company would refund me this cost, I wanted to have the correct invoice for the service she carried out. To date, one week , 5 phone calls and 4 emails later, I have not received it. I wonder why���.

Similarly, when I needed the heart scan a few weeks ago, I made an appointment with Dr. Benrd Reisbeck a qualified Cardiologist.  www.reisbeck-medical.com . When I arrived, I was met by his wife Dr. Manuela Reisbeck, who carried out the heart scan. She informed me that she wanted me to do a �stress test� due to my ridiculously low pulse (40), and then told me that she could not do it, as the test is always carried out by two doctors. But, her husband was not there at the time. This meant I had made a round trip of over 200 km, to see a non qualified person, non-qualified in cardiology. They failed to call me beforehand to let me know that the cardiologist was not there and his wife took over. The trouble is the wife, whilst very friendly, was / dare say �is� not qualified. Again I was charged a small fortune and sent on my way. Since then I asked for a second appointment, to carry out the stress test, but have had no reply. ( this is 5 weeks ago)

Sick people, are profitable people. I have no doubt that this is not a �Spanish issue� but a worldwide one.I could go on, about other doctors I have seen, and whilst this does not help me regarding my health, I am realising a few truth here, which quite frankly are worrying and simply sad.
When you think about it, a doctor who poses as a cardiologist, with no qualifications, but does not mention it to me. I found this out via their website after I failed to see the cardiologist. A physiotherapist, who claims to be qualified in carrying out lymph drainage, but when asked for an invoice to support this treatment, refuses. I won�t go on, there are others. Basically the conclusion I am coming to is that only money matters in the private sector. I am getting disillusioned in finding someone, who firstly �cares� ( this seems to be an impossible mission) and secondly who is qualified in the activity they state they offer.
So what is the answer. Maybe a system similar to that in Germany, where the system is half private half state and patients pay a proportion of the costs?
The NHS does not seem so bad from where I am sitting right now. If you can ignore the long waiting lists and the fact that English is not necessarily the main language in the hospitals. But does the NHS produce doctors and nurses who care? Because they have no real financial gain and carry out the job they enjoy doing? I don�t know.
I need to get off the hard shoulder, off the motorway and find my own route, which is proving to be difficult, due to what I have tried to describe. 

Moving on, so today I had the pleasure of my 8^th �poisoning session� also known as Herceptin. I took the opportunity of asking my oncologist a couple of questions. I asked him, why I was weighed before I started the first session back last July. His answer was what I expected, �to calculate the amount� which is pumped into me. My second question was, what would happen if a patient lost 10 kg? The answer: � We would reduce the amount�. I didn�t ask the obvious next question : �You see me every three weeks for a consultation and you have not noticed that I have lost 10 kg?� Clearly he had not. Whilst I don�t expect the majority of people I know to notice, I would have thought, that this is something the oncologist should keep an eye on? Clearly not. So today, he weighed me and confirmed that yes, what a surprise I had lost 10 kg and he would reduce the dosage. What can I say? I need to do the thinking, clearly.
I also enquired about the lump under my arm, to which he was surprised that it was still there and suggested a scan and biopsy. I have agreed to the scan but not the biopsy.  Why not? Simple, I am concerned that whatever is inside that lump, that a biopsy will make it leak or spread. http://www.healthguideinfo.com/breast-health/p74634/        ;       http://www.healingdaily.com/conditions/biopsy.htm         ;     http://www.healthguideinfo.com/surgical-cancer-procedures/p75018/

1.     Like other cells in the body, cancer cells also have small blood vessels called capillaries which drain into veins and thus are connected to the blood stream. They are also bathed in tissue fluid which is connected to the lymphatic system. Inserting a needle into the tumor for biopsy involves the risk of dislodging a tumor cell into a blood vessel or into the tissue fluid.

2.     Tumour cells which enter into the blood vessels can travel to distant sites whereas those which enter into the tissue fluid go to lymph nodes. Some tumor cells may also be dragged along the route of the needle and hence lead to local implantation. This is known as implantation metastasis. This carries the risk that a tumor which previously could have been cured by resection may spread and thus palliative treatment may only be possible. This also means that the patient has to take combinations of chemotherapy with its dangerous and unpleasant side effects.

It is still not known clearly whether fine needle or core needle biopsy involves a higher risk of metastasis. It has been concluded from studies that a needle biopsy may increase the spread of the cancer by 50% as compared to excisional biopsies

When a person is given a terrible diagnosis regarding their health, any diagnosis, it does not have to be cancer, although that one floats to the top in my mind,  it tends to stun people. It stunned me initially.  It stuns you so much, that you follow �doctors orders�, in my case �initially�. I understand that. I understand that the majority of sick people will do what the doctor recommends. They are on the �outside lane�. Then there are those, who follow doctors� orders but also look what they can do themselves in addition,  to improve their health. Let�s call them, the �middle and inside laners�.

All three lanes are cruising along for as long as the doctors tell them to. And then there are people like me. I know now that I am not an exception, it is quite remarkable how many people join me on the �hard shoulder�, each trying to find their way, but knowing that the other lanes won�t take them to where they want to go.  This is the group of people, the private clinics must simply love. Desperate to find solutions, willing to pay just about anything in order to find them. �Cash cow� springs to mind.  There is little to no compassion and  I feel that I am seen as a �walking wallet�.       

The state system here in Spain, tends to have mixed reviews. I have since learned that a �pression mammogram� is not the normal way of carrying out a mammogram, which I had the great displeasure of experiencing in the local hospital. (I mentioned this before, similar to men putting their nearest and dearest on a table and someone coming down on it with a sledge hammer). Jan was told by the state hospital that his son ( who is starting to walk again) might have had to have legs amputated.

                                   

So here we are, I will see what the scan reveals. Personally I doubt that this is cancer. My money is on �congealed blood , fluid� after my infection last summer. The interesting point though is that my GP, the surgeon and the oncologist all knew that I had the infection, not one of them asked to check it weeks or months later or kept an eye on it. Did they forget? The lump simply stayed. Should they have followed this up? At least with a question? I have no idea if this is normal or not. I thought it was, but the oncologist today, seemed to question if this was a new tumor. My gut tells me it is not.

I mentioned �compassion� or lack of earlier. Lola the nurse in the chemo ward, is one of the nicest people I have met. It is �freezing� here (for me at least, currently 6 degrees, not my idea of fun) and the last couple of times when I had the blood test and Herceptin, it really hurt. I burnt like hell actually. Lola explained to me why and it made sense.  During the summer months our veins are larger then they are during the winter, making it harder to �get in�. The nurses have cold hand, so as they feel for a vein in order to know where to insert, (as they keep looking for new entry points, they don't use the same position twice), that also makes the veins contract. So unless, I bring my own heater and supply the nurses with wholly gloves ( can�t see that one working), I have to accept that whilst it is cold, it will hurt like hell. Interesting, and annoying. I have also decided that when they run out of suitable 'entry points' on my arm ( they are slowly moving up), I will not agree to a 'plate under my skin', I will finish with Herceptin. I am due another 9 sessions, let's see if they manage to find a vein until the last session in August.