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. 

Thank you ....................

I did not expect this. Thank you! I really really appreciate your comments ( you know who you are), to hear that you / others have experienced the same as I did last week, makes me feel 100% better. 

I am delighted to have had my appointment confirmed with a new clinic near Marbella to carry out lymph drainage. I don�t really know what to expect, although I have googled it of course. Hopefully with a bit of luck, the lump under my armpit will disappear or at least get smaller.

I am not sure how long a lymph drainage takes or how they do it, but no doubt will find that out this Wednesday. 

On and up!

Meltdown.............

 Last week I had a major ( major to me) breakdown.  I am fine now and looking back on it, I actually find it fascinating. The body and mind are simply fascinating. So what happened? I am actually not sure.

I simply broke down, I cried so much I could not stand, the noises coming from my mouth, even frightened the dogs , who are used to my booming voice. Poor Geoff, he was not prepared for that. Having said that, nor was I.

I noticed the last few days having this overwhelming feeling of not being able to cope. Kyla our daughter is due to go on maternity leave the next couple of weeks, we are short staffed, trying to recruit new people. We are currently training new people. We had the office move and privately sold a couple of apartments in order to buy one new apartment. Christmas was busy, I neglected my healthy diet for a while, or I should say, I ate food and drank alcohol, which I had not been doing for some months, resulting in me feeling more tired. I could not sleep, worrying about work and what will happen when Kyla is off.  Suddenly I was back to where I was prior to having cancer. I was back in the middle of organising life and everything around me.

When you are a control freak, it is so hard to let go.   I had managed to �let go� for the last 7 months and then it all came back. The net result of stressing about everything again, meant that I slipped into a dark hole without actually noticing it.  People always say I am �strong�, well what does that actually mean? I talk louder than others? I struggle to accept failure in everything I do? I have high expectations of myself and others? I feel that I am responsible for me? If I come across a problem I need to solve it? A lot of �I�s. I decided early in life that only you can help yourself and only you can sort your problems, which actually I have been proven wrong of so often. Hard for the people close to me.

Although I think it is more than that. I have always been rebellious. Tell me to go right, chances are I turn left, unless I can been convinced with a sound argument why I should turn right. ( by the way, it is always interesting when Geoff and I drive anywhere together in the car, irrespective of who is driving) An idea springs to mind. �googlebox�, a TV programme where you watch people watching TV. ( I am delighted to say, I saw this once for no more than a couple of minute, but I get the �entertainment factor�) Well if they had this programme based on watching couples inside cars, then Geoff and I would win the global award.

This rebellious streak of mind coppled together with my inbuilt fear of not being in control, fear of failure, resulted in my desire to be successful in business and with it the financial gain I felt I needed to prove I could achieve. Thankfully Geoff has done nothing then support me for over 35 years in this desire. I worked full time since I left school, I raised 3 children ( of course not on my own), I had a career I loved, which took me across Europe to Russia to the States. I loved every minute of it. The stress through was constant. I used to be out of the country from Monday to Friday, with Nannies looking after the children. When I returned Friday night ( providing I did not miss my flight because a meeting overran), work continued. Running the household, organising the children and all the activities that went with it, prepping for the next week to leave either Sunday night or Monday morning for the rest of the week, was stressful. But, I needed to do it, I needed to know that I could stand on my own two feet. God knows why. Why could I not be like so many women I knew, staying at home, having coffee mornings with other mothers, having lunches, children�s birthday parties and waiting for my husband pay check, so I can go shopping. An extreme view, I know, and no doubt any �stay at home� parent is likely to shoot me down and say that �raising children is much harder than working�. I am not disputing this. I am just saying, why could I not be like that. Instead, I was chasing money, promotion, status and the �platinum British Airways Executive card� .

So here is the price I pay, I brought this cancer on myself. I thought I was indestructible. I tackled my cancer diagnosis like I tackled live, I can do this by myself! Well last week, I realised I could not. A couple of days, of the darkest hour, worse than when I was first diagnosed, which is strange, but  I have come out on the other side. Geoff spent hours listening to me and we talked and talked. British Telecom was right �it�s good to talk�, but hard to do.  I realise now, that I was bottling up all my emotions and just dealt with the task ahead as if it was another project. How wrong I was.

But, isn�t life truly amazing. Last week I wanted to die. Imagine even admitting to that. I could see no light, thought I was wasting my time trying to cleverer then the doctors I have met. ( who as we know all want to push me down the chemo trail) I thought my family would eventually be better off without me, so they would not need to stress about me anymore.  How na�ve of me. How stupid and short sighted. Interesting how logic fails when one feels desperate. The mind is so powerful. I can see, how people fall into depression and struggle to get out.  Anyone reading this, no, �happy pills� is not the answer. Talking, self-analysis and then a plan of action works wonders.

Anyway, I have picked myself up, dried the ( what now seem silly) tears and have given myself a kick up the backside.  I feel fine now. Going to feed my chickens now!

A great start to the new year...........

Cannabis ingredient to be classed as medicine in UK

Sarah Hajibagheri, News Reporter

Products that contain a cannabis-based ingredient called cannabidiol, or CBD, are to be classed as medicines by the UK medicines regulator from this year.

The Medicines & Healthcare products Regulatory Agency (MHRA) said it had looked at CBD because a number of manufacturing companies had been making "overt medicinal claims" about products.

Gerald Heddel, director of inspection and enforcement at the agency, told Sky News: "The change really came about with us offering an opinion that CBD is in fact a medicine, and that opinion was based on the fact that we noted that people were making some quite stark claims about serious diseases that could be treated with CBD."

He said that a review of the evidence showed that "it was clear that people are using this product with the understandable belief that it will actually help".

Cannabis has two key ingredients - THC and CBD. The THC gets you stoned, and it can also make you anxious and psychotic.

But, isolated, CBD has the opposite effect, often calming people down - which is why some people are using it in small doses as medicine.

Most people in the UK get their supplies online in an unregulated and potentially unsafe market, but the decision by the MHRA means manufacturers will now need to demonstrate their CBD products meet safety, quality and effectiveness standards.

:: Britons want cannabis legalised for medical purposes - Sky Data poll

While some users are pleased that CBDs are finally being recognised as medicine, others worry about their supply.

Louise Bostock's daughter Jayla has brain damage. Aged five, she cannot walk or talk and is unlikely to live beyond her childhood.

Ms Bostock turned to CBD to ease her daughter's symptoms after reading about studies in the US, where fits in children were cut by 50%.

She told Sky News Jayla no longer needs to be taken to hospital every three or four weeks because of seizures.

As CBDs are currently normally only prescribed to adults with multiple sclerosis, authorities stepped in, which Ms Bostock feels was due to a lack of understanding about CBDs.

She said: "They try and criminalise it if you even mention cannabis, but when you are dealing with people who are going to die, how can anyone not give it to these people who have no hope?"

But there are concerns that the move could send mixed messages about the safety and legality of cannabis.

Dr Hamed Khan, medical lecturer at St George's University Hospital, stressed the ruling "is only about CBDs, which is something very specific, and not cannabis and marijuana as a whole".

Cannabis is not recognised in the UK as having any therapeutic value, and anyone using it could be charged with possession.

Campaigners for its legalisation say classifying CBDs as a medicine opens up the medicinal marijuana debate.

It is heartening to see the increased media coverage regarding Cannabis oil and its healing properties. 

The end of one year, the start of the next.................

I have been sitting in front of my key board for a while now, now sure where to start. Usually words come quite easy to me, but today, I am finding it a challenge.  Unfortunately there are too many people I know, who are likely to have similar thoughts to me. � To move onto the next year!�

Only a few hours to go and this awful year is over. Amazing how much hope we put onto a �New Year� , a new start , a fresh beginning , for so many people. But, how do we know that the next year is any different? Life , if we are lucky enough to experience it, just goes on, doesn�t it?

The majority of people are so engrossed in their own busy lives, and I wonder how many actually reflect on the �past year� and analyse if they could have done anything to live a better live during that year.
I have never been one for �new years resolutions�. When I was in my twenties and I guess thirties, my focus on a new year, tended to be very superficial. �Lose weight� seems to have dominated my life and from what I recall was my only ever new year�s resolution, that and getting fit. Comical really, as without trying I lost 16 pounds  this year, something I wished for most of my life. The year I came across cancer. I am not using the words, � I am fighting cancer�, as I am not fighting it.

This year, the year Kyla our eldest got engaged, got married, got pregnant. The year, Dan had his reversal operation and had the all clear from cancer. The year, we gained a son in law. We never expected to �love� a son in law, but here it is. We love him and he has become part of our family, like I never expected.

The year, Rhea moved together with Ben. The year she got a great promotion. The year, Jack bought his first property in London. All these wonderful events, we so enjoyed being part of. It is a shame it was overshadowed by my cancer journey.  

But, things happen for a reason. There is a reason why I  ended up with cancer. I don�t know what the reason was, but I do know the effect it had on myself and the rest of my family. It is a journey, as I keep saying. A journey, where not only I but my entire family have adapted to and we are all now �running with it�.  It feels quite calming.  A surreal year. Looking back I feel calm and in control.  I will continue to �do my thing�,  exploring every avenue on  alternative treatment.  My plan is to have a PET scan next August, when I finished Herceptin, providing I don�t die from heart failure first.  This brings me to an interesting observation .

The last few weeks, I have been feeling washed out, tired and without much energy, struggling for breath as soon as I walk more than 100 meters.  So here is the interesting bit, I saw a different oncologist last week when I had Herceptin. She asked me how much I weighed, which is now 70 KG, and noted that I started my treatment when I was 78 KG. Although she did not say anything else, I started to think about this afterwards. Before my first Chemo session I was weighed as part of the �how much do we pump into the veins� exercise. I am now wondering if the current dose is too high. If I am receiving the same amount of Herceptin into my body , that I received when I weighed more, could this be the reason I feel so awful and weak? Is the amount of fluid pumped into me, calculated by my weight? I lost 10% of my overall weight. Should Herceptin be reduced therefore? Why was my weight so important at the beginning?  And if weight plays an important factor when calculating how much they pump into me, why did nobody  notice that I lost some weight? I will ask �my� oncologist when I see him again the 18 January.

The last 10 days, feels like a whirl wind. A warm,fun, tiring, busy whirl wind. The last three days, Geoff has been busy dropping the kids and adoptive kids (Michael and Rebecca) off again. Michael flew back to China, Jack and Rhea back to the UK and Rebecca to Paris. Flights were delayed and others cancelled, the strike in the UK did not make travelling much easier, but everyone has made it here for Christmas and back again. A lovely time was had by all and I am not proud to say, that I gave in to chocolate and champagne and what's more important, but I did not beat myself up about it, and loved every bit of it. 

When I was first diagnosed with Breast Cancer, back in May 2016, apart from my world falling apart, I also wanted to keep my family and friends updated. I was overwhelmed with the flowers, chocolates, cards and �getting well wishes� I received, and figured that by writing a blog, everyone who was interested, could catch up and read about my my �journey�.

I have never been a person to �follow protocol�, it is not in my nature and I knew last July , after my one and only Chemo session that my journey would not be that of many other cancer patients. In this blog, I have recorded my �journey� and how and why I made the decisions regarding my treatment. I have learned so much and am still learning every day. My office is filled with new books regarding  cancer, cancer diets, �mind / body / spirit� , Cannabis, �well being� etc.
Having opted out of the traditional �chemo trail�, I am very aware that only I can monitor my progress and only I am responsible to get myself well again.  This is both frightening and exciting.

I am recording any new research or information I come across and at this stage have no idea where this will take me.

I am writing this today the 29 December, after my daughter Rhea told me that it would be good to write a short paragraph. Having had over 12000 page views, I am flattered that people are interested in my �journey� ( I can�t think of a better word) and hope that it provides informative reading.

Anke

Busy............

I am trying to have an open mind. 

I heard about Shiatsu and have been told that it might be helpful if I was to try it, which I did. I saw an Austrian lady, based locally and having no idea what to expect, I �went with it�. She talked to me about �Chakra�s�, the different �energy centres� in the body etc.  There was a lot to take in and looking back , I wish I had taken notes.  Because I didn�t, I read up about Shiatsu afterwards ( I know this is the wrong way round, but hey), and pondered over the �in a practice a practitioner uses touch, comfortable pressure and manipulative techniques�.�

( http://www.shiatsusociety.org/treatments/about-shiatsu). Well I can honestly say, that my �session� hurt like hell. It felt like she was digging her finger with all her weight into different parts of my body and then held up the pressure for much longer than I would have preferred.

As she was �balancing my chakras�, which involved her holding her hands a few inches away from my body. As she was in that position, she kept hunching over as if being punched in the stomach, making deep breathing noises at the time. I have to say that unsettled me somewhat. She looked in pain and for some reason I felt responsible for causing her that �pain�. In fact I found it disturbing and could not relax, if that is was I was supposed to do.  What did not help my experience is that I was freezing in her house. Goose pumps all over including on my kneecaps. How can anyone relax when they are shivering they are so cold? ( many Spanish houses don�t have heating and no carpets, which gives many Spanish houses a damp, cold feel, even though the outside temperature is reasonable � 15 degree)

It was recommended that I return this week then continue every other week for a session.

I think I will try another place in Malaga who also offer Shiatsu and see how that compares to my experience. If this was �normal� then at least I know and can then decide it I want to do it again. If it wasn�t and the next one is a �deeply relaxing experience�, then I know where I will go.

With Christmas around the corner, I have been busy getting organised and can feel that I am tired. I am so looking forward to having all kids ( including our adoptive kids, Rebecca and Michael) come over for Christmas and this year will be a �first one�, my girls and Rebecca are cooking Christmas lunch. That is a treat!