Great Expectations…

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Andy and I have just returned from a whistle-stop trip to Bristol and, although it was really nice to get away and spend some time together, it wasn’t all I had hoped it would be. I know the reason for this…

Since my diagnosis I have looked at life very differently, and appreciate everything so much more. When we plan and look forward to a day out or a trip away, I REALLY look forward to it and consequently expect everything to be perfect, which of course, it is not. Therefore I can quite easily become disappointed if things don’t go exactly as I’d hoped. I do, of course, realise that life cannot always be perfect, but that doesn’t help me when things go wrong.  Our trip to Bristol actually went quite well, but there were a few minor disappointments which meant that I became very upset, and this marred our time away. It’s hard to change aspects of your personality that you do not like, but I really have to try harder to be more realistic in my expectations. and accept that there is no such thing as perfect.

Even though our trip wasn’t as good as I thought it would be, it was really nice for Andy and myself to spend some quality time together. We did some shopping, ate some nice food and even had some complimentary glasses of wine when the hotels booking in system crashed. You would think that free wine would make up for an hour delay in getting to our room, but it didn’t. I just kept thinking ‘we only have 24 hours away and sitting here waiting is wasting valuable time’. We kept calm about it and the staff were really nice about it too.

It was a bit like a trip down memory lane, as Andy and I got married in Bristol just over 25 years ago. I really love it there, as it is edgy and exciting and spending time there makes me feel really alive! We went to Stokes Croft and looked at the street art and also to St. Nicholas’ Market, where we enjoyed some tasty vegan food. Living in Devon, it is very difficult to eat out when you are following a vegan diet, but in Bristol you are spoilt for choice. During the evening I thought I would treat myself to a Cosmopolitan and so ordered one from room service – I could so get used to a life of luxury!!

We are planning a family trip to London in two weeks time, and I am going to endeavour  to ‘go with the flow’ a little more, rather than expecting perfection – After all we are only human and sometimes shit happens!

 

Have Wheels….

It is an extra special week, as my Mum is visiting us from the Midlands. This event is eagerly anticipated, as, although we are happy and ‘jogging along’ nicely, the only down side to our lives is the feeling of social isolation. I think this is particularly true for Andy and I, as the children both do lots of activities and so are beginning to make friends in the town.

We go to two home-ed groups and have made some very good friends in those, but these friends all live at least 30 minutes to an hour away. All our friends from Dorset are even further away, and both our families live a three and a half hour journey from here.

I certainly don’t think we are alone in this feeling of isolation, as I think there are many other people in the same position. It is more and more common for people to move away from their home towns, added to which people tend to move more frequently than in the past. We have lived here for 17 months now and although we are on ‘nodding terms’ with local people, we have yet to make any friends. I am aware that these things take time, especially in  such a small community as ours, but it can sometimes feel very lonely.

I am partially to blame for my feeling of isolation, as shortly after moving here I stopped driving. When you live next to Dartmoor and are 30 minutes from the nearest town, supermarket etc, it really is a necessity that both Andy and myself can drive. I felt okay(ish!) driving around Dorset as I was used to the roads, but since moving here it has become a bit of a nightmare for me! If I turn left out of our drive you are on Dartmoor. The drive is beautiful, but I find it rather challenging when faced with galloping sheep, horses and cattle all over the road! If I turn right out of our drive and head for Newton Abbot, Totnes, Torbay, I am faced with narrow roads which suddenly narrow even more, and therefore a lot of reversing into tight spaces is required!

I know this is something that I am going to have to conquer, as once driving again I will be able to visit friends and maybe even get some voluntary work, and consequently not feel so isolated. I have tentatively started this process, and am now able to drive to Tavistock, but I really need to be driving every day so  that I get used to being back in the driving seat.

Another measure I am taking to get me ‘out and about’, is joining a local yoga class. I was a little unsure initially, but having spoken to the lady who runs the class I am now really looking forward to it. I think it’s really important that I have a little bit of ‘me’ time, as I spend so much time with both Andy and the children. I’m hoping this will give me the confidence to join in with more local groups.

I think I only fully realise how isolated I feel when family or friends leave after a visit.. It is so lovely spending quality time with them, but when I wave them off I get a sinking feeling in my stomach and become very teary. Having said that, the time I do spend with them is over a weekend or even a week, so it is very much an ‘all or nothing’ scenario.

I am sure, as time passes, and I get used to driving again, that this feeling of isolation will get less and less, but for now I am going to make the most of every minute spent with my lovely Mum!

To Scan or not to scan?

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I am due to have another scan in November, and am at a loss as to know what to do about it. On the one hand, I need to know what is going on with my tumours, but on the other, I really dread the whole process and week (at least!) of worry that follows the scan taking place whilst waiting for the results.

I am confident that I am doing what is best for me and am still religiously following my supplement and healthy eating regimes, but when scan time is coming up I automatically start doubting it and start to think, ‘What if…?’ This begs the question, ‘Should I really be having scans?’

Apart from the stress and worry of scans there is also the issue of huge amounts of (cancer causing) radiation being put into my body. A CT scan which is generally repeated every three months, gives you the equivalent of a whole years radiation from environmental sources.

I have, through my research, found an alternative to CT scans, one which has no radiation involved. This procedure is called Medical Thermal Imaging, and is supposedly very safe. As with so many ‘alternative’ procedures and treatments it comes at a cost – £395 to be exact. Not only this, but there are only a few centres which carry this out, so there is inevitably quite a bit of travelling involved also. If money was not an issue it would be a no-brainer, but there is only so much money in the pot, and trying to balance how much I spend on treatments with how much I spend on doing ‘fun stuff’ is difficult.

Part of me would rather just say, no more scans! The problem with this is that I know of a particular treatment, GcMAF, that can actually cure stage 4 cancers. The Doctors involved in this are so confident of this that they offer you your money back if your tumours do not shrink each week that you are having treatment! You are only allowed to receive this treatment abroad and it costs around £27,000, (so obviously there is the money issue again), but they do not let you have the treatment until you are given three months to live. Blindly carrying on in ignorance of what is happening in my body is all well and good, but if the methods I am using stop working I need to know so that I can try other alternatives.

The whole GcMAF issue is big news at the moment. Those of you who see my Facebook posts will know that a lot of ‘natural’ Doctors are being found murdered and it is thought that this may be a result of big pharma (yet again!) trying to silence them. Some may see this as very ‘conspiracy theorist’, but it certainly makes sense to me. If GcMAF can cure cancer, the whole chemo industry is jeopardised.

GcMAF link

For now, I am trying not to think too much about the scan/no scan question, but as I wait for the inevitable letter to come through the door in the next few weeks, it is something I will have to ponder more and more…

Walk In My Shoes…

Is it ever okay to bully someone? To force your opinion onto someone to such an extent that it makes them doubt themselves and feel scared? I don’t believe it is, and yet this is what happened to me when I started to seriously consider not continuing with chemotherapy.

I was a member of a forum for people with Inflammatory breast cancer for 2 years and found a lot of support and help from other members. The admin of the group has never had chemotherapy because she has never had cancer, and yet when I spoke to her about my feelings regarding stopping chemo she said ‘It will spread really quickly and you’ll die’, and ‘I’d hate for you to go downhill rapidly’. I am usually a strong person, but with something of this magnitude it is hard to ever be completely sure if you are choosing the right path. We had several conversations, both over the telephone and via text. After I had spoken to my oncologist and she had agreed that chemo wasn’t that great, I told this woman, and yet still she tried to tell me both the oncologist and myself were wrong. Fair enough, she blocked me on facebook and that was that.

After some consideration I decided that I would like to rejoin the forum so that I could help inform other members that there was another way should they wish to look into it. I put in my request and was turned down! This woman had obviously decided that she did not wish me to impart my knowledge to others in the group and, even though she does not have cancer, proceeded to block me from the group.

I am aware, whilst writing this, that I may sound bitter. I am not. (Although I was for a while, I’m only human after all!) I just feel very strongly that unless you have walked in someone else’s shoes you really shouldn’t force your opinion on that person. We each have our own path and I feel that this should be respected by all of those around us. This is not just the case regarding cancer treatments, but in life generally.

Luckily, most people I have come into contact with have respected and understood my choices and have been very supportive. Having said that, ALL the nurses I have spoken to have also been very negative about stopping conventional treatment. When I was having Herceptin (a targeted therapy for HER2 positive cancer), I mentioned that I may not have any more chemo, and again I was met with comments such as ‘But you have children, you can’t refuse chemo’, and ‘How can you even contemplate that?’

I guess that those involved in conventional medicine are always going to believe that theirs is the only way, but I feel very uncomfortable that if you mention any other possibilities you are met with such negativity. In my experience, the nurses on the chemo wards have never even heard of alternative treatments. I once said to my nurse ‘ I’m thinking of trying alternative treatments’, and her reply was ‘Are there any other treatments?’ We are so entrenched into the conventional medical model and I find this so scary.

I do believe things are changing, albeit very slowly. Since giving up chemo and researching other treatments I have found  a lot of people who know the ‘truth’ about cancer, both how to prevent it and treatments to cure it. There is a lot of information out there, and also a lot of research. My worry is that people who are diagnosed with cancer are fast-tracked into the conventional treatments and literally don’t have time to think about the next step they should take. I completely understand this, it’s a very scary time…. I really hope, though, that increasingly people will hear of alternatives and look into them before they go down the conventional route…I certainly wish I had….

Not Back To School!

As most of you are aware, Andy and myself home-educate our two children. We decided to do this even before they were born and, although sometimes difficult, is something we are totally committed to.

The weeks following my diagnosis were difficult anyway, but having the children at home meant that I had to ‘keep everything in’ and act as ‘normally’ as I could. This was a very difficult time and all I wanted to do was shout and scream! In hindsight though, I think it was a good thing that I had to maintain some kind of normality, and it was definitely beneficial for the children to be within the family unit while they learned to cope with ‘Mummy’s cancer’.

On the whole people have been very supportive of our decision to educate the children ourselves. There has also been some negativity and a total lack of understanding from some quarters. The most common phrase I hear is ‘what about socialising?’ I personally do not believe that being forced into a classroom with lots of other children the same age as yourself constitutes socialising! Our children go to two home-ed groups a week, so mix with lots of other children from all walks of life and of different ages. They also go to lots of clubs, such as Cubs, drama, trampolining, and so mix with school children also (who, by the way, think that being home-educated is ‘awesome’!)

People vary in how they home-educate, some follow a curriculum that is similar to a ‘school at home’, while others follow a more autonomous route. We definitely fall into the second category. It really is a truism that children are like sponges and soak up information from the world around them. We do try to do an hour or so a day of Maths and English, but other than that we are fairly flexible. We get plenty of fresh air, go on nature walks, do arts and crafts and the children read a lot. I was very relaxed about when they started to read, as I believe that children should be left to do things in their own time when THEY are ready, rather than when someone else says they should be ready. As it turned out, both Elena and Boots were prolific readers at 5 or 6. This is partly due to an online maths programme called Reading Eggs. This system, and others like it, make learning fun, so they actually chose to spend a lot of time completing it because they enjoyed it so much.

As I previously mentioned, home educating is not always easy, but over all I believe it is worth the small sacrifices you have to make. I do not want the Government to decide what my children should learn and at what age, and I certainly don’t want them being subject to the pressure of continual testing to ascertain if they are at the ‘right stage’. Almost all of the home educated children I have met are confident and happy. I know my own children love being home educated and if they are happy then so are we!

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Chris Beat Cancer

A particular website which I have referred to many times is ‘Chris Beats Cancer’  http://www.chrisbeatcancer.com/

There are a series of videos on you tube which include how to make a superfood cancer busting salad, https://www.youtube.com/watch?v=BORz-CNszes and lots of advice on how to beat the big C using natural methods. A video of particular interest is of Chris talking to a nurse who worked in a chemo unit for many years but then gave it up when she could see that it was not working in the long term. She lists all the many alternatives available, including vitamin C injections, cannabis oil etc,

https://www.youtube.com/watch?v=ddADeIsXrOw

We are so entrenched in the slash burn,poison philosophy that many people just do not question it when it is put forward as their proposed treatment. I know I didn’t – I blindly followed what the ‘experts’ said I needed to do. The more I look into chemo and its effects the more it astonishes me that so many people are still going down this particular road. Several practitioners of natural treatments have previously worked in cancer wards, and if the people on the front line are saying its limited in its usefulness then surely its something you need to question.

If you are wondering why none of these ‘alternatives’ are mentioned to patients, it is because oncologists are not ALLOWED to advise on anything other than chemo, radiotherapy and surgery. As I have mentioned before, if you ask an oncologist about alternative treatments they trot out the same ‘It hasn’t been researched, there have been no trials’. There are never likely to be any trials either, not when big pharma make so much money from chemotherapy drugs.

The internet is awash with stories of people whose cancer has gone into remission when they have used alternative treatments. I don’t have enough hours in the day to research them, there are so many. Change of diet, exercising, baking soda protocol, essiac tea, the list goes on and on.

One of the first things I found out about was raw apricot kernals to beat cancer. I eat 30 of these a day, because I have read more than one article detailing how a person beat cancer just by doing this alongside  dietary changes. Apricot kernals contain vitamin B17, which has been found to attack cancer cells. Although some treatments can be very expensive, this is one that is relatively cheap.

I feel very strongly that there needs to be a change in the way we talk about and treat cancer. If the NHS were happy to spend £70,000 a year on kadcyla (a chemo drug), then why can’t there be a fund to assist those that choose a different path. After all, if you choose not to have chemo you are saving the NHS literally hundreds of thousands of pounds. But obviously this is never going to happen and we all know the reason for this, if lots of people choose this alternative path then the drug companies, and all those with shares in them, lose money.

What I would really like to do is plaster the walls of the cancer unit with information about alternative treatments, so that people could at least make up their own minds. It would be a lot more beneficial to patients than those ‘Diet Myth’ posters that are there now!

Getting married – Again!

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On July 18th Andy and I renewed our wedding vows in front of our close friends and family. It was something we had thought about long before my diagnosis, but as it was our 25th wedding anniverary this year, we though it would be the perfect time.

Having this to arrange gave me a much needed distraction from hospital visits and in a way contributed to me stopping chemo, as I told my oncologist that I didn’t want to start a new chemotherapy until after the big day.

Having decided to hold the ceremony in our garden, we then had lots of planning ahead, which we really enjoyed. We ordered the marquee, sent out the invitations and then sorted out the reception at a local pub. As the time got nearer, we both became very nervous, and when the day did come around I was a gibbering wreck! (Probably not helped by having a few too many drinks the night before! Me? Never!)

It was a fantastic day, filled with love. The sun shone and friends and family alike all really got on well with each other, and I hope, had a good time.

I have always been a sufferer of the pleasure/pain situation. When I have had a really good  time I always then hit a massive low afterwards. This has heightened recently. I really feel the highs, which is great, but then I really hit the lows (not so great!) I wouldn’t say I was depressed or low after our lovely day, but I certainly felt extremely emotional and consequently cried on and off for several days after! Andy and I then went on ‘honeymoon’ to London for a couple of nights, and although it was strange being there without the children, we had a fantastic time. Andy and myself are even closer than before now, as I think our vows were so much more heartfelt than when we got married 25 years ago because of everything we have been through together…

A Long Road…

Although I am in a good place now, this certainly hasn’t always been the case. Throughout the last 3 years I have been through so many emotions, and they have mainly been negative. From diagnosis and throughout I have suffered badly with depression and suicidal thoughts, All that I could think about was that I was going to die and leave my children and Andy. The emotions I felt were totally overwhelming. On the one hand I desperately wanted to be around to see my children grow up, but on the other, the pain of thinking that I might not be made me want to end it all!

My depression obviously had a massive impact on Andy and although I tried to hide my negativity and hopelessness from my children, they too picked up on it. I think, as a result, they became very scared. We were a ‘normal’ family one day and the next everything had changed. The shock is the first thing you have to handle, and I admit that the children probably heard conversations they really shouldn’t have. We have always tried to protect them as much as possible and think of their feelings first and foremost, but that hasn’t always been easy, especially because they are home educated and so are always around. Luckily, although our families live three hours away, they came to help and also look after the children so that Andy could be with me when I had my treatment. Friends also rallied round, and for this we are eternally grateful. The depth of support and understanding we have received throughout has been such a great comfort to us all, and without it we would have been lost. Having said this, some people handled the news better than others and I was very hurt at some people’s reactions. Having done a lot of research and spoken to others in a similar situation, this is normal, some people just can’t handle it. Maybe it reminds them of their own mortality or they simply don’t know what to say.

We made sure throughout that the children maintained as ‘normal’ a life as possible, so we continued to take them to their home-ed groups and to see friends and, after the initial shock, had nice days out again. We kept them informed of what was happening, but in a way that wouldn’t scare them. I honestly think this is the best way, as not knowing anything is even more scary.

Moving to Devon has been very beneficial to us, as both Andy and myself felt that we needed to be away from the hustle and bustle of a busy town and a housing estate, and to be in the country. I had always dreamed of living near Dartmoor, but didn’t think it would be possible, but we kind of just ‘happened’ on the house we are in now, so I guess it was meant to be. We all really enjoy walks on the moor and the sense of freedom I get from them is just amazing. The downside of our move is that we are now a two hour drive from our old friends, which can sometimes be very hard, but we try to get to see them as often as possible. We are also slowly making really good new friends which is wonderful. I have learnt that even if you don’t see people for a very long time, they can still give you so much support just by a quick text or a facebook message and I can’t tell you how much this has helped….

High on Life!

There has recently been a massive change in my personality, one that everyone around me has noticed. I think this is partly due to my taking a drug more normally prescribed for addiction

It was through my consultation with Patricia Peat that I heard about LDN, Low Dose Naltrexone. This is an opiate blocking drug normally given to heroin addicts when they are trying to get clean. However, it has been found that when used in a very low dose (4.5ml), it has had some astounding results, not just for cancer but for many other conditions such as MS, Parkinsons Disease, Lupus, arthritis…

http://www.ldnresearchtrust.org/

From almost the minute I started taking it I felt so much happier. This is because it floods your body with endorphins. I believe it is LDN that has contributed to the shrinkage in my tumours, so it is basically a win/win situation! The only problem is in getting a GP to prescribe it, as it is not licensed for anything other than addiction. I was very lucky in that my GP treats me like an intelligent human being and she actually wants to help me in whatever way she can, so she was happy to prescribe it on a private prescription. You have to send the prescription to a chemist in Scotland and the cost of this whole thing is £18.50 per month. Imagine my astonishment then, when the prescription was sent in error to my local chemist who ordered it in at a cost of £350 to the NHS. What is that all about?

I have also started meditating for an hour a day, which has also contributed to my well being greatly. I read a book called ‘You are the Placebo’ and then downloaded the meditation cd that goes with it. I can highly recommend this to anyone. It has had such an affect that Andy knows if I’ve done it or not by my mood that day! It has helped me to think more positively instead of just dwelling on the worse case scenario all the time. The man who wrote the book believes that you can change your biology by using your mind, and after further research I honestly believe this to be true.

For the first time in nearly three years I am really enjoying life to the full and actually look forward to each new day. Having a cancer diagnosis makes you appreciate everything so much more anyway, but this has been heightened recently. I always appreciated nature and beauty before diagnosis, but now it’s on a whole new level!

Anyway, I had better go now, as the sun is shining here and I want to go and make the most of it!