Simply sharing...

So my simple story was published today and reinforced the beauty of sharing. There were many reads and lets face it this can only be a good thing. Unlike reading the article about me last year, I was in no way upset, indeed the opposite, I was uplifted.

I wanted to share something that I have been thinking about all morning and excuse that it is rather random. When I was diagnosed initially with the brain mets, everytime I looked at a painting I have

I cant help but think that the dark splodges are my tumours and the rest are all the fun I had. Now maybe too much fun admittedly but I kind of like this idea.

Oh dear I think I may be going mad. But its good.

Unexpected news...

The best things in life are unexpected - because there were no expectations.

 Eli Khamorov

Well I met with my consultant this morning and it was not as I had predicted. I had gone in to discuss me not having the scan, when I put this to her I obviously asked was it the case that radiotherapy had been my final option. The answer was no!. There are in fact a couple of chemotherapies for brain tumours. My Consultant was very honest about the limitations of these. Firstly there is no guarantee they would work. Secondly statistically (remember how much attention I pay to these) chemo would prolong my life by months not years. So interesting stuff.

The down side of course is that chemo is no easy option when you are at your most healthy. My health is far from what it was a few months ago. Therefore I would really have to consider the risks of how ill I could become. I am pragmatic, I would very carefully consider the greater good of my quality of life ( I know now that quality far outweighs quantity). I will keep in mind how harsh my first chemo was and how I vowed I would never go through the same again.

Anyway Tracey and I spent the day between clinic, lunch and picking up prescriptions laughing from the heart. I am in a good place this evening and hoping for a good nights sleep.

Juggling...

It is the mark of an educated mind to be able to entertain a thought without accepting it

Aristotle

I can't sleep tonight. I had Reiki, I had a bath and I took a sleeping tablet. All of this has been working but not tonight. I suspect it is due to 2 things. Number one; I took 4 mg instead of the usual 2 mg of steroid today. I did this thinking that I was managing my condition. I was really not too great this morning as I felt so tired and I was going out with a friend. My GP had told me that I could take anywhere between 2 and 6 mg and I thought it was the right thing. Ok re evaluation time. 2 mg from now on.

The second reason is that I have had a headache most of the day and yes I am worried! I still have not moved into my house and am weeks away from the work being completed and I am scared that my health declines as rapidly as it did in November. I really want quality time in my new home with Olivia and Tracey. I am filled with fear and I must somehow overcome it.

This brings me to my next point. I have my scan looming in a few weeks. I am meeting with my consultant tomorrow morning and I have decided to present to her my thinking around it honestly. Which is that I don't intend to have the scan. Reasoning; if it is good news then there is still no clear outline as to how long they remain shrunk, my consultants words in December were thus: "How long is a piece of string?". Secondly; if it is bad news then what is the point in knowing? They have no solution so why offer me a problem? I only do solutions in my cancer journey in order to stay positive. In my opinion its a no win situation. I will know when things are declining I already have the experience. I Don't want the pitying doctor consultation and then the psychosomatic symptoms which follow. So I will have a full and frank discussion with my consultant tomorrow. In the meantime I must stop my mind from going where it doesn't belong. There is a great expression, when it comes to going into your own mind "it is like a bad neighbourhood, don't go alone and don't stay too long". Ha ha, I'm off to the burbs for a while.

the power of sleep...

An easy life is rarely meaningful and a meaningful life rarely easy.”   

Oliver North  



After another raiki session on Friday and some reflexology from the wonderfully talented Gail Fulton, my body has normalised further. I mainly put this down to sleep. I had 8 wonderful uninterrupted hours last night! The result? I have a new lease of life. What does this mean? It means that today when my good friend came to visit I was open to taking action. Open to doing my bit to prolong my life.

As I have already said I am prepared for the worst but I simply wouldn't be doing myself justice to do absolutely nothing for my condition. So Jude was filling me in on an article in the Telegraph this weekend about a young girl who restored her very poor health by overhauling her diet. She essentially went on to a plant based diet. Now I actually have experience of this as after my lung diagnosis my husband Russell and I went micro biotic and then vegan. I wont lie it wasn't easy and I loathed it. I would go so far as to say it contributed to the break down in our marriage (but wasn't the defining factor I'm sure Russ would agree). I resented going to the supermarket and being able to shop in 2 aisles whilst watching all of these other people pile crap into their basket, food which I wouldn't eat at anytime and yet they didn't have bloody cancer. I was angry at my diagnosis and with hindsight it was too early to be so radical. I needed time to adjust. Anyway I slowly but surely slipped away from the diet ( I must mention Russell has maintained it and feels a massive benefit). However I didn't at any point stop believing in the power of it. If interested in yet again, prevention rather than cure, a study called "The China Study" is well worth a read.

So here is what I have decided to do. I am going to empower myself in every way and give this diet a go. This girl has a recipe book and you can google "Delicious Ella" for downloads. I have done what I don't do well and I have requested via facebook that people, should they wish, cook me a dish which I can freeze ( I cant cook the basics in my current state). It is very similar to the Budwig diet and essentially this was something that I was planning on exploring anyway. You see for brain tumours outwith radiotherapy and I have had all of that is possible, the only other hope is really diet. I am willing to stand up to this. Why the hell not.

Weary...

Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in, therein to be content.

 

Helen Keller

As a lady of leisure at the hotel I have rather a lot of time on my hands so I have been reading through some of my old blogs. How weird, to travel through all of my different emotions from week to week. Overall though they strengthen my positivity, as I realise how much cancer actually brought to my life, SERIOUSLY!

What I also took from it was that I regularly talked about various other routes to take. It got me thinking and I am probably wrong, that to some it may seem that I have given up as I am not researching and planning. In fact, I do have a couple of things up my sleeve, but the thing is, I am very realistic and I see no point in building false hope for me my daughter or anyone else. I repeat I have not given up hope I am just very at peace with my situation. I think it is hard for others to understand how tired I am. I have pretty much been on chemo for 3 years I have now had a hell of a lot of my brain function destroyed and I have lived a very uncertain life since September 2012, it's a long time. I am tired. I am currently very happy to be alive and I have a decent quality of life but I just thought I would share my truth because as I always say that is what this blog is all about.

Prevention...not cure

An ounce of prevention is worth a pound of cure

Benjamin Franklin


I have been reading up these last few days on alternative medicines. More importantly one in particular Low Dose Naltrexone. Now I am sure that I wrote about this last year but I am going to write about it anyway. Basically this is a drug which is used worldwide to treat so many diseases I couldn't list them. It is used for MS with amazing results. I had come across information on this drug last year and how there were some doctors in the USA who felt that it could be a breakthrough in Triple Negative Breast cancer (my type). Immediately I was on the case. To cut a long story short as this drug is long since patented not all GPs will prescribe mine of course did and I started it last January. The great thing is that should your doctor not prescribe it you can buy it very cheaply and indeed among the limited stockists globally there is actually one here in Glasgow 5 minutes from my house...I call that serendipity.

Anyway I began taking this one tablet every night and as we know my battle with my lung was won. I cannot say with certainty what caused this but it gave me great psychological benefits (this drug generally boosts your immune system so what is to lose?).

Yes I was disappointed to learn of my brain tumours but I have been in touch with one of the doctors at the forefront of this drug and he has said keep going with it, I will.

There are many who believe that many chronic illnesses (Crohns, Lupus to name but 2) and of course cancer could actually be prevented all together were people to incorporate this drug into their daily lives from about the age of thirty. I am inclined to agree. There is a wealth of information on this drug on the web so I would you all to have a look. I am starting my LDN tonight again as I have felt more healthy these last few days which I put down to my first ever Reiki session. Cannot recommend it highly enough but more about that later. Now get researching and prevent my experience perhaps.

Knowing my limitations....

Slow down, you move too fast you
got to make the morning last
kicking down the cobblestones
looking for fun and feelin groovy...

Let the morning time drop all its petals on me
Life I love you all is groovy


Simon and Garfunkel

It ended up being a full on day on Friday. Hmm we were not quite as organised as we thought. The plan was that I would spend a couple of hours just kind of overseeing things and then I would leave for the hotel and have a little manicure by late morning. Well the weather conditions on Friday didn't exactly lend themselves to everything being as smooth as the radio station and there were inevitable holdups with the van runs to the storage warehouse. This and just other things which cropped up meant that at 8.30 that evening I was still in the house. It was the final rush to get out and let the new family in. My God I nearly went into meltdown. I was utterly spent. I could barely walk by the time I got to the hotel and my brain function was probably running on about 10 per cent.

Lesson learned? I have not let go of my will to control as much as I had previously thought. It truly was an eye opener. I put my health through hell for nothing. I laughed as I thought about, there I am blogging about  putting things into perspective and not using energy in the wrong way etc etc and then voila I am doing it all. I t was good to be able to recognise that. To recognise that the ability to slip back into old thinking patterns can be far too easy. Now, don't get me wrong the day was not in any way terrible. We laughed and had fun and all the rest of it. However, I simply overlooked what is crucial...my immediate health.

I am glad of the experience as always I thought I should share.


Thanking all who helped with the move on Friday. Love you.

The power of love and laughter...

“It does not matter how long you are spending on the earth, how much money you have gathered or how much attention you have received. It is the amount of positive vibration you have radiated in life that matters,”

Amit Ray 

 I have had an amazing day. I  was surrounded by people whom I love and in turn love me. It was packing day and it was without doubt the most stress free pre move pack I have ever had. It was filled with laughter and I think that my disposition rubs off on others. I simply cannot allow to be uptight about something as trivial as a house move, I am fighting for my life. This definitely helps others gain perspective.

This then allows me to be surrounded by positivity. It really is a win win situation. It was also a very productive day in other ways. I felt strong enough to make some big decisions about my future (or lack of it) in terms of various finances. I had some difficult conversations to have with the likes of pension people etc and I had been avoiding it. I faced it full on today and once again it empowered me. I managed to put yet more practical things in place for the outcome which I will avoid as long as possible. However these things have to be done, and I did them. I most definitely feel more at ease tonight as of course knowing that I am leaving behind security for those I love makes me feel so much better.

I didn't have such great days yesterday and Tuesday and my physical condition was quite poor. My wonderful G.P came out for  a quick home visit ( he did not have any obligation to it was his choice). Anyway we agreed that in order to keep my neurological condition as ok as possible for the foreseeable future then it is best that I stay on steroids. So I am back on a very small dose and I think that they are helpful and as soon as I think anything different I will re evaluate. It's yet again taking it one day at a time. Also, unlike the vast majority of the NHS, I have a trust in my G.P. He has earned it.

So the premise of this post is this. Tonight I am in a good place. I am looking forward to leaving for the hotel when the real chaos begins and I have a busy day planned. Which includes all sorts of pampering, organised by yet more people who continue to show me their love for me. Who continue to allow me to see the great in people. Positivity really is the best thing we can show in this life no matter what it may throw at you. Please everyone take note.

The difference a day makes....

 “Some people grumble that roses have thorns; I am grateful that thorns have roses.”
― Alphonse Karr, A Tour Round My Garden




I am very happy to be able to report that my health has improved greatly. Since signing myself out of hospital things changed massively, but I still was very far from being me. However, I am delighted to say that in these last few days I have come yet further. I have been weaning down from the steroids and I had my last one yesterday. I managed this weekend to get a lot of sleep. I literally was getting an average of about 2 hours every 24 hours. I have always believed in the power of sleep. I am now getting,  nowhere near the normal, but a hell of a lot more. I am convinced that it has helped greatly. I have also due to reduced steroids stopped craving junk and am back to fresh food. This can only help.

My actual ability to communicate is incredibly strong and whilst this had been counterbalanced by a very weak body which really could do very little,  I definitely feel like my physical abilities are returning. This is all great. I just an hour ago had my wheelchair delivered and its fab. I would not have thought just weeks ago that my vanity would allow me to go out in a wheelchair, but I was wrong. I do not want to be housebound I want to live, I want to enjoy going out and if that means in a wheelchair then that's totally fine.

So I move out of this house this week and in true LG fashion I have been let down by the mortgage people. Therefore I am moving to my amazing friends hotel for a couple of weeks and then at the end of the month we will all be in the new house. I am excited as I said the other day I have many cushions to buy. Well they are bought and my love of aesthetics knows no bounds so I say my life is great right now. One day at a time.

a gentle reminder

I am not going to be writing todaytwith anything new or ground breaking just some things that are on my mind. As I have already posted I spent a truly horrific time over the holidays in the hospital more specifically a cancer hospital and a reputable one. I have now made my wishes crystal clear that I will not be hospitalised again before I die. I have put in place exactly what I want so I shall take the experience as a good learning curve.

Over these last few weeks I have had a lot of time to reflect upon my cancer journey and rethinking it horrifies me all over again. I feel as though I have come full circle. In November/December 2011 I was hospitalised dangerously ill as a direct result of medication (chemotherapy) which due to lack of resources is administered in a very haphazard ways and essentially my dosage was not right. This put my life in danger and I am utterly convinced that I don't stand alone in this. As I have already documented I then went through a system so flawed that my outcome was to be a terminal diagnosis.

So fast forward to December 2014 and I am back in a hospital dangerously ill, again not due to the actual cancer but instead due to a fault in drug administration. I had the ability to speak up and I am now home and all is well (RELATIVELY SPEAKING of course). However I just feel compelled to put this message out again. Its done.

Now for an update. I have had  9 of 10 of my brain zap. I go for my last one today and then I will be scanned in 8 weeks. 8 long glorious weeks of just taking one day at a time and enjoying my life and my new house. I have no idea of what the scan will show but based on statistics for my type of cancer it will not be that positive. This is fine. I am not being pessimistic but my own personal expectation is to have passed by April this year, and I am by no means going down self fulfilling prophecy routes. Just being realistic. I have been very practical and have 2 death plans backed up by the right professionals. Olivia is aware of everything and will be with me.

Update complete. Now back to living, I have many cushions to buy.