The last few weeks have been a bit all over the place. I went to Germany in March as scheduled. In the couple of weeks before the trip I had noticed discomfort in my abdomen. Something was growing and affecting my diaphragm which meant taking a deep breath became hard. Much of the hardness and swelling was just below my sternum and to the left of my abdomen. As liver pain is usually described as being on your right side with pain under your rib I was confused and thought maybe it was my stomach. I had just started the Budwig protocol so that would explain my stomach being a bit out of sorts as it got used to it. My skin continued to be dry and prickly. By the time I got to Germany the swelling and hardness was really obvious. Of course it was my liver - why I considered it could be anything else I simply don’t know. Delusion? It was the first time I had seen Dr Martin not look very positive - and that made me very scared. He gave me an ultrasound which simply confirmed it was my liver. The left lobe in particular which explained the swelling on my left. I had my bloods taken and went back to the hotel with my cousin Tim who was accompanying me and lay in the bed in paroxisms of fear. The physical discomfort meant that it was almost impossible to think of anything else and the shock that it had grown so fast was significant. I cried a lot and could barely move from the bed covers for hours. After everything I had been doing it was so unfair.
The next day we went back to the clinic to get the blood results, which while one of the liver markers had risen significantly the other liver markers were still around the normal mark and my other bloods were looking ok. This news offered a little relief, but not much. I have therefore changed my treatment and this now includes a chemotherapy drug called xelodawhich is taken in pill form. This is where chemotherapy has an advantage over other approaches, it can work faster to reduce tumor bulk if it is life threatening. Still attacking from multiple sides is my approach but this multi method approach now includes a chemotherapy pill.
My oncologist here is now prescribing this and for that treatment I am back within the conventional therapies. I am not happy about this but really do not feel I had any choice. I have now been on xeldoa for 2 weeks(I do 2 weeks on one week off) and am on my week off now. It has all sorts of side effects - for me themain ones have been fatigue, feeling constantly tired and what is called palmar plantar - hand and foot syndrome where small amounts of the medicine leak into the hands and feet making them super dry and sensitive. My old school friends clubbed together to buy me some ugg boots last year when I started chemo and I am now wearing this almost exclusively to protect my feet. This very unfortunate side effect has many implications. Running may not be possible. Gardening - which I had plans to do more of (I am a hopeless gardener but intended to become better) will be very difficult and may not be possible if I do not keep my hands in a reasonable state. Even my knitting (also a slow affair) is more tricky. This is a chemo that some women do well on for quite a while. I had a chemo sensitivity test last year and it identified this chemo as one I should respond to. But I feel so unsure of anything at the moment. I had thrown myself into all the good advice and different approaches and here I am starting chemo. The good news (in a bad good news sort of way) is that the scan I had 3 weeks ago did not show any spread anywhere else. I would like to think that my diet and supplements have helped to make it difficult for the cancer to settle anywhere else.
I still feel my liver, hard and swollen but I can breath normally and it is not quite as large as it was 3 weeks ago so I am hoping that this is because I am responding to the various treatments. I realise that I should be more circumspect about exactly what I am doing so if anyone would like to know more detail please do contact me personally. I am not sure at this point I am a poster girl for alternative treatments except that who knows what would have happened if I had not invested as I have in these.
So often I have read emotional outbursts from people with advanced cancer. Why me? Focusing on what cancer has taken away and I was determined that that would not be me. But I would not be human if I was left unscathed and managed to Pollyanna my way through this journey the whole time. I have an emotional outburst simmering. Hope can take you so far and this setback has extinguished some of that hope. It has kicked me into getting my affairs in order - as they say. Not so much the administrative stuff but the letters to friends and family I would like to write in the event I do not beat this. I woke up during the night in Germany, before getting the blood results, in a panic as I had not written any of these. The speed at which the liver swelled up really shook me. Could it really happen so quickly?
I hope I can get back to a safe position and then have an extended period of stability - but I have only recently started new treatments so I need to wait a bit before I know if this is going to happen. I frequently read conversations on the website Inspire for Advanced Breast Cancer and it seems thatmoments of crisis are part and parcel of the process. There is a limit to how many crisis you can have I presume but I am hoping this is simply a crisis moment which I need to come back from the edge, pull myself together and carry on. Stay calm and carry on.
So now I am considering what my next move should be if and when we get back into a safer holding pattern. I am interested in the clinics in Mexico and am trying to work out if it is worth me planning to visit one of these and if so which one. I am looking into Rigvir (a licensed virololgy registered in Latvia but which has had some good results and almost no side effects). I am considering the full Rick Simpson protocol. I am still on budwig but it is so confusing. Can I take it now I am on a chemotherapy? Purists I am sure would say it goes against the protocol but I have read testimonials of people who have taken it with a chemotherapy and claim it has helped them with side effects. I also cannot stick 100% to the diet that is meant to go with budwig - the most difficult bit is not using oils - including olive oil or eating food cooked with oil. I frequently eat out when I am not at home and it is impossible to adhere to this. Then there is the melatonin I take at night. This is an antioxidant and you are meant to stop all antioxidants when you are on it. But many others swear by the beneficial impact of melatonin. So I am all in a bit of a muddle and not quite sure what mix of approaches I pursue in light of my current situation. But I know I need to have a plan ready for when (note the word when) my liver settles down and I am out of crisis mode.
I have found it hard to write this blog. I so wanted to be the one who was an example of overcoming the odds. My character has always been optimistic, happy, excited about life and I feel so dragged down. It is as if I have lost me, what made me me. Louise without excitement for life is a shadow of me. And the prospect of being on the ladder of conventional treatments is abhorrent. At least xeloda is a pill chemo so I am not tied to the hospital - but if I need another chemo in the future I think only intravenous versions are what are left - and that makes me want to crumple.
I liked that I was facing this disease down. Admitting that I am struggling is very hard. I am hating that I feel tired on the chemo as this impactswhat I can do to distract myself. I have been working on a salvage mission to pull myself back onto the front foot. I went on such a lovely family holiday with my parents, sisters and brother and the 15 children we have between us. Since then I have been to visit my brother and I am now going to spend a couple of days in Oxford with Rupert who is there for work. Bucket lists were always something I thought to avoid as it suggested acceptance that the end was nigh but I am revisiting this and have decided I had better get busy and fill my time with fun and distracting things to do. Spend more time with friends. Go to museums. I am determined to do some gardening, sore hands or not. I also want Rupert and I to book a few weekends away.
I also need to fit in writing my goodbye letters. I would like to never need these but I think what the recent dip has shown me is that cancer is a clever bastard and I am not really that special. It will get me in the end. Probably. And it is that probably that I still hang some hope on. Might the new treatments from scientific discoveries come fast enough to just keep me goingand I be one of a new generation of people for which it is a chronic long term condition or perhaps I will have success with the Rick Simpson protocol, Rigvir or time at a Mexican clinic. I had been so hopeful about budwig. This does take months to show benefit but given I have started chemo and am finding it hard to stick to it 100% I am not sure I will get that benefit and really need to talk to someone who knows more about it. Many of the alternative cancer approaches are so viciously anti chemo and seem to say, if you have had chemo then these approaches might not work. I have though seen stories of heavily treated people having success with cannabis oil for example and it is these that I now focus on.
Ned, who is a deep thinker and likes to talk joined me in bed the other day for a talk. He was calculating how old I would be when he is my age. Moments of torture.
I continue to go through my old diaries and papers. I loved inspirational quotes which I collected as a teenager and young adult - I am going to share some of these - the first is particularly pertinent.
The sun is coming out and this will I know breath new life and new hope into me. If only the temperature would rise as I simply cannot manage the cold anymore. I am still wearing thermal vests! Next time I blog I hope the feisty unaccepting Louise will be back. This is a minor blip. As Ella would say ‘did you think this would be easy?’.
The Clock of Life
The clock of life is wound but once.
And no man has the power
To tell just when the hands will stop, at late or early hour.
Now is the only time that you own.
Live, love, toil with a will.
Place no faith in tomorrow.
For the clock may then be still.
Robert H Smith
How selfhood begins with the walking away
And love is proved in the letting go
Cecil Day Lewis
Tread softly for you tread on my dreams
I would not have been given the power to dream
Had I not been given the time to make those dreams come true
For we which now behold these present days
Have eyes to wonder but lack the tongues to praise
To meet hate with retaliatory hate would do nothing but intensify the existence of evil in the universe. Hate begets hate, violence begets violence, toughness begets a greater toughness. We must meet the forces of hate with the power of love; we must meet physical force with soul force. Our aim must never be to defeat or humiliate the white man but to win his friendship and understanding.
Martin Luther King
…whose mother is history,
rival of time, storehouse of great deeds,
witness of the past, example and lesson to the present,
warning to the future.
Don Quixote, Cervantes
Whilst the quest for greater equality has much vocal support, the resistance to that question appears intrinsic to the modern world for affluence is not readily given up, excessive profits are not meekly abandoned and power is not voluntarily relinquished.
Envy isa worm that grows and consumes the entrails of the envious. Inca saying
The pleasures of Friendship
The pleasures of friendship are exquiste
How pleasant to go to a friend on a visit!
I go to my friend, we walk on the grass,
And the hours and minutes like minutes pass
Since my wobble I have scrambled my way back to feeling more determined and positive. I remain conflicted however. The future I would like involves living and creating the circumstances that give my body and mind the best chance of doing this for a long long time. Preparing in case this does not happen, involves getting certain things in order. When I focus on this I wonder if I am somehow giving in to what most would consider the inevitable in my situation. But acting as if I have a never ending future is deeply unsettling. What if I were to dramatically decline and no longer had the strength or time to finish those things I would like to complete before I go? But does a focus on preparing for the end somehow hasten it. The power of the mind is incredible and there is much evidence of physical responses to the power of the mind. Patients who feistily confront a diagnosis and are determined to out do it live longer on average than those who passively accept a prognosis according to research. Is getting my affairs in order passively accepting in some way? Outwardly I am being feisty in my drive to outwit the cancer while contradicting this non acceptance of my prognosis by preparing things just in case. Surely my body will know I am not completely convinced I can outwit it and might this prevent the healing I need? All these things going round and round in my head then unsettle my brain which counteract the many actions I am taking to heal.
After 4 weeks on my new mix of treatments including xeloda my liver bloods look as if they are coming down. I can still feel my liver but it is not as swollen as it was and I am feeling more normal again. The first 3 weeks of treatment were horrible and I felt exhausted and wobbly. But now I am coping better and apart from my hands and feet which have started to slowly disintegrate with the xeloda. My ugg boots turned out to aggravate not improve the situation as my feet moved around in the boots causing friction sores which I am now trying to resolve. This involved hobbling to the nearest shoe shop and buying some delicious fluorescent pink trainers. These at least keep my feet in the same place and I can now walk again with some discomfort.I do not feel tired like I did a couple of weeks ago and I wonder if part of my exhaustion was getting used to the new treatments and the emotional shock of having my liver deteriorate so suddenly.
I recently met a fellow advanced cancer patient who contacted me via cancerispants and we shared strategies and ideas and he helped reinvigorate my efforts. I have ditched the budwig which I simply hated. It took ages to make. It tasted pretty disgusting and if I travelled anywhere I had to carry with me all the ingredients and equipment (hand blender, coffee grinder, kefir or cottage cheese). I did feel very positive about it but in practice it simply depressed me. Twice a day having to find the time to make and then eat this disgusting gloop. Then there were all the various dos and don’ts which I could not keep up with. The main one was no antioxidants which had meant I had stopped anumber of my supplements. Maybe one day I will revisit it but for the moment I am relieved to be off it. I have restarted a supporting plan involving high dose vit c, exercise and other ways of getting oxygen into my body. My diet remains the same but I have allowed myself a few things I had totally excluded. I was simply not enjoying my food and this was making me miserable - and being miserable is not the way to heal the body. So it is mainly plant based still, with at least a pint of juice a day, no sugar etc, but I have had some goats cheese and butter and the rare portion of chips (shock, horror). So delicious. I never realised how much I liked chips until I totally excluded them from my diet. I have restarted attempts to meditate. I downloaded an app called Headspace which I have started with and feel pretty good about. I may just crack it.
Despite my long term goal of a long life cannot rid myself of a feeling of time ticking away. I am mobile and able to be relatively independent. I can travel. But the shock of the last month has exacerbated the sense of an hour glass - although I don’t know when it will run out. At least for the moment I can do things and therefore I must as I cannot afford to wait in case that time runs out. I have a great friend in Edinburgh who, for various reasons I have not seen for years. I keep up with her on facebook but have not managed to see her. If I do not soon will I ever. I have been identifying those things I really want to do.
Mainly I want to type up my old diaries. I have started this. It is a slow process, but so fun. It is like meeting my younger self again. In 1991 I was studying Geography at Cambridge University. I went to Mexico to undertake research for my third year dissertation the subject of which was Family Planning and the Role of the Catholic Church. I have been a Catholic for Free Choice for all my grown life and my interest in reproductive health stemmed in good part from the contradiction, as I saw it, in the Catholic Churches teachings on birth control and contraception (remember that in 1991 there were no antiretrovirals and HIV was a death sentence as was an unplanned pregnancy for many). In Mexico at that time there were a number of church run family planning centres which taught ‘natural’ birth control which, to be honest, can be very effective indeed assuming you are in a loving and trusting relationship, you have a good diet, control over your body etc etc. Even then human error contributes to many unplanned pregnancies. I was fascinated to find out more about how the Church engaged with this issue in practice in a country which at that time had the largest city in the world and in it a population of which almost 50% were under 20. I will share a small excerpt from my then diary..I am talking about what experience I had to build on.
What I have in my favour is that I am female (!) and I was at a Catholic girls school from the age of 9. In the sixth form, (and not before) we had an hour session on all types of birth control methods and 2-3 sessions on Natural Birth Control. We were given ‘fertility thermometers’ and graphs and encouraged to get to know our own cycle. Each morning before getting out of bed we should take our temperature andmark it on the graph, from which we would eventually be able to identify when ovulation took placed. By Sixth Form I had certainly had more education than millions world wide and I still forgot to take my temperature. I would jump out of bed to get to a lesson, clean my teeth then remember I should have taken my temperature, so I would jump back into bed, lie there for 5 minutes in the hopes my temperature would return to what it had been when I woke up, then I’d mark it down. My Fertility Graph over the 28 days was quite unrecognisable.
My point was that this approach was simply impractical for millions of women and not a strategy for reproductive choice.
I am early on in the diary but am so grateful that I wrote them. Memories that I simply would have lost. Reading them is like meeting an old friend again. I am sometimes embarrassed by what I write and found myself, while typing it up wanting to doctor what I had then written. My mature self embarrassed by my younger self. But I have set myself some clear boundaries - I must type it up as is, warts and all.