It’s Been A While!

It’s been a long time since I added to my blog. I guess I just got out of the habit, but I miss writing (and ranting!) To be honest, I haven’t had a great deal to rant about recently as I don’t have a lot of contact with the hospital these days and am consequently much happier and optimistic. I have an appointment in a couple of weeks, but basically the oncologist just says ‘How are you keeping?’ and then we talk about holidays and the weather. It’s very weird to be honest. It does sometime cross my mind that I should at least consider having another scan, just to check on everything, but this thought soon passes when I think about the reality of going ahead with it.I quite like feeling sane and I know that I would be anything but if I chose that particular route!

I have to admit that my ‘regime’ has slipped a bit of late. This is especially the case with regard to my diet. I still limit carbs, eat mainly vegan and very little sugar, but the ‘raw’ veganism has gone by the wayside. I am sad about this as I know it’s the healthiest diet, but it was making me so totally miserable, especially in the long Winter months! Now that Spring is on the way I will endeavour to add a few more raw foods to my diet. I m still taking all my supplements and apricot kernals etc., and I have also recently joined the local gym! I have been there every day for the last week and it is certainly making me feel better in myself (and gives me some much needed time away from the family!) Whether I  continue these daily visits I don’t know, but I’m certainly going to try.

As you can tell, we haven’t moved abroad following the Brexit vote, even though we both very much wanted to. It just seemed like such a big move, especially when our families are not getting any younger. It’s still something we often think about though, and I think it will happen one day. We really like it here, but are looking to move back to Dorset. I guess you can’t have everything in life, and although we have made a couple of lovely friends here, we miss all our friends in Dorset. Having said that, I don’t think it will happen any time soon as we are pretty fussy.

Meanwhile, we are getting on with life, taking as many holidays as we can, home educating the children and looking forward to Spring…

 

 

Anger, Depression, Resentment…

…..All feelings I have fought hard to suppress since my diagnosis. I  managed this very well  before the events of the last few days. Through relaxation, meditation and positive thinking my family and myself were happy and getting on with our lives.

On the 24th of this month everything changed. All those negative feelings are back with a vengeance.

Don’t get me wrong, I was aware well ahead of the vote, that I lived in a country that contained many racist, selfish people, but I honestly thought they were in a minority. The one thing that is helping me right now is that it was predominantly the older generation who voted ‘leave’. This, however, is not much of a consolation as I come to realise that they have basically screwed up my children’s future with a quick ‘X’ in a box!

I have always bought up my children to be accepting of all people, and to believe that the ‘world is out there’ for them to explore and be a part of, and I now find myself explaining to them that they are no longer going to be able to live and work freely throughout Europe, that older people don’t seem to care about their future and wish them to live in a divided and selfish society.

People that know me well know that I have suffered with agoraphobia in the past, and, since Friday those old familiar feelings have resurfaced. I find myself wanting to stay at home with my family and not mix with people who have potentially shafted our future and bought back all this stress and negativity…

So, now we find ourselves having to seriously consider moving to another country (while we still can!). I resent feeling that I have to put my family through all this stress and upheaval. I resent the fact that we may have to leave our own country, a country in which all our extended family live, including my 82 year old Mother.

No-one truly knows what lies ahead as a result of Thursday, but I think that even the leave voters can already see some of the negative aspects…living in a divided society, a rise in prices, probable job losses etc..etc…I really hope they think it was worth it, but then most of them won’t be around to see the full ramifications of their actions. It is so so predictable and symptomatic of the ‘I’m alright Jack’ mentality of this country. I mean, they lived in a time where if you worked hard you could buy a property, go on foreign holidays(!) and have a nice comfortable life…a lifestyle which has been denied for our children even before Thursday.

So no, I won’t ‘Keep calm and carry on’…Instead I am having to focus on making plans to move away from the country in which I was born, to uproot my children from their friends and family, to ponder on a life whereby free healthcare and free movement is denied to us…..and most importantly I am having to focus on trying to cope with the unfamiliar feelings of stress and anger and depression and resentment…

Thanks ‘Leave’ voters….Hope you think it was worth it!

 

 

 

 

 

Getting On With Life….

Since all the stress surrounding my scans and the hospital, I have been doing just as the title says…getting on with life and no longer dwelling on the ‘what ifs’. I have been in this situation before, of course, but this time is definitely different. In the past I have only got on with my life for seven or eight weeks at a time, in the lead up to yet another dreaded scan. As I am not going to be having a scan in April, I am much more relaxed and living as near to a ‘normal’ life as it’s possible for someone with my personality! I think a lot of people, including myself, would be tempted at this stage, to ‘let things go a bit’ and not be so regimented in my approach to my treatments. I think this would be understandable, as how ‘normal’ is it to meditate for an hour a day, take 30 plus supplements, do 30 minutes of exercising, make up two litres of alkaline water each day, take baking soda/lemon juice mixture twice a day, eat 30 apricot kernals etc, etc….? Some elements of the above are, of course, ‘normal’ to a lot of people, but prior to my diagnosis I didn’t follow anything particularly healthy! I did TRY to get some exercise, and TRY to eat healthily, but I certainly didn’t look at health and food like I do now.

I have decided to actually be more disciplined in my approach to my treatments. It would be easy to let things slide and treat myself to some yummy warming food, but I think that would only make me worry again. It is sometimes so difficult to push myself to do all the things I am supposed to do, and I have always found structure and routine very boring and tiresome. What I have to remind myself of, on a daily basis, is how far I’ve come at this point and what I have achieved thus far. I undoubtedly feel a lot better in myself since I have started eating healthily and exercising regularly. The meditation and yoga have also gone a long way in helping me to cope both emotionally and physically.

Spring is also just around the corner (Hopefully!), so this thought is helping my mood quite a bit! Yesterday we went to Tavistock. I did a little bit of driving (just to keep my hand in), and the sun shone all day. It made such a massive difference to my mood, and to Andy’s too I think. I love the moor, but it can be a bit bleak in the Winter. It was truly beautiful yesterday.

So, upwards and onwards! I feel I haven’t seen my friends enough recently, so now the weather is improving I am going to endeavour to drive more, and arrange to meet up with them on a more regular basis. We are still looking for properties and also trying to be a bit more structured home-ed wise. So…plenty to be getting on with…

 

 

 

A Cuddle from my Oncologist!

Just back from my second trip in two days to the hospital – yesterday for the ultrasound on my neck, and today to discuss the results.

I found yesterday very challenging as the Doctor was very brusque and ‘old school’ in his approach. He bought up chemotherapy and said how it improves survival rates, to which I replied ‘Look it up on google, I think you will find that that is false.’ He wouldn’t let it drop at that, and a heated exchange pursued, something I could honestly do without on these visits, but something I have to enter into, as I cannot just ignore people when what they are saying is questionable at least, or down right wrong in many cases.

He looked at the nodes on my neck and said that, in his opinion, they would have got considerably bigger if they were still cancerous. The measurements showed that one of the nodes had again decreased in size and the other had stayed the same. He also said that they looked ‘normal’. I was so relieved to hear this, but am not so naive to believe that everything is okay now because I know that may or may not be the case.

Today, I discussed it with my oncologist and asked her if the scans could tell whether the cancer was alive or dead. She said that because the nodes are so small there is no way of knowing, but the cancerous cells could well have died. Although I do lots and lots of research, I am not a ‘medical’ person and I realised that I have been looking at things in the wrong way. What I mean by this is that, because they are lymph nodes, they are not going to continue to get smaller and smaller until there is nothing there, because lymph nodes are supposed to be there and can occasionally increase and decrease in size anyway, with or without a cancer diagnosis. What I am trying to say, but finding difficult, is that it’s good news!

My oncologist apologised for the mix up with the CT scan and was very understanding. We both agreed that stopping scans was a good idea, but she said I am welcome to have anymore should I develop any symptoms that I am worried about, and she also said I can have further ultrasound scans on my neck should I wish to. We had a long chat and on the way out she gave me a cuddle! At the end of the day we are never going to agree with each other, but I am fortunate that I have a reasonable and open doctor who, whilst not exactly agreeing with me, respects my opinion and decisions.

So, the future….spend less energy on my diagnosis, continue with all my supplements, diet etc. and really get on with enjoying life…

Pleasure/Pain hits again!

After such a stressful couple of weeks, and whilst I was feeling really low, I applied for free tickets for Wicked in the West End. Unbelievably, on Wednesday last week I received an email to say that I had been issued with 4 free tickets to go and see the show! Both Elena and Boots adore the show, and as we were going to be in Glastonbury at the weekend, we arranged to go to see our families for a couple of days after Glastonbury and to then get the train down to London on Monday.

We have all had an amazing few days. I can’t describe how wonderful it is seeing the children’s faces when they watch the show, or when they get to see our families. I absolutely adore visiting London, I feel so alive and there really is no time to think about anything morose or depressing. We went to Camden on Tuesday, which was amazing. It is so brilliant for me in London. It is so easy to find vegan food, even raw vegan food, so I can enjoy myself, forget about my problems and still be healthy! The only down side to it is the cost of hotels. We managed to get a hotel for £79, which I don’t think is too bad for four of us, and we also managed to eat quite cheaply. It only cost us £20 on the train, so the whole time only cost us around £100. I couldn’t believe it when I got the Wicked tickets, they were some of the best seats in the house and worth £400! I have to put up with a lot of crap around my diagnosis, so at least I can get something beneficial out of it all. The charity which gave me the tickets is called ‘Ellies Friends’, and they give away freebies to people with a cancer diagnosis. It is through them that Andy and I went to see Alan Carr Chatty Man. Going to see shows doesn’t take away the stress of our lives, but for the time we are there it actually makes us forget all the shit.

 

So, back only a matter of hours and I  am feeling down again. However, unlike in the past, I am not going to give in to the feeling. I am determined I am going to take back some power and make the necessary changes I need to make in my life. I need to be busy and independent. I also need to live nearer to civilisation, so although I know it will be stressful, I am going to arrange to view lots of houses in lots of different areas and make a move soon. Of course, stress will be involved, as well as upheaval for us and the children, but I think teaching the children that change is a good thing will be beneficial to them. I also know that they will be much happier if they are not in the car all the time, and if they get to see our families on a much more regular basis.

 

I am due to go for the ultrasound on my neck on Tuesday, following the great big mess-up of my scan. Instead of getting stressed about the result I am going to take it with a pinch of salt, and just use the result as a baseline for future ultrasounds. I have decided to put CT scans on hold for the foreseeable future, as I honestly believe that the stress they cause to my family and myself is counter-productive. Instead, I am going to just get on with my life and am no longer going to allow this disease to take over my whole life.

Well that’s the plan anyway!

 

Aaarghhh!

Well, after a truly awful few days I have news to report from my scan. After many phone calls to the hospital my oncologist called me and told me that there was ‘no change’. I asked her if the tumours had reduced in size and she said, ‘No, exactly the same.’ At first I was very relieved that they had not grown, but this soon turned to dismay and then full blown depression that they had not continued to shrink. I am confident in the way I am treating my cancer and truly believed that the tumours would have continued to have got smaller.

Now, in my experience, oncologists sometimes neglect to tell you the whole story so I felt it important that I look at the scan report myself. To this end, I asked to pick up a copy of the report , which we did yesterday. I can only say that what I saw was unbelievable. Basically, it looked like they hadn’t even scanned where the tumours are! Both Andy and myself were very confused and in a daze at this point, so I waited until I got home and telephoned my oncologist. I have literally just got off the phone and I am completely incensed! She informed me that they had not scanned my neck. I said ‘but you told me there had been no change, and as a consequence of this I have been in bed for the last few days and have pulled out of being in a documentary on LDN’. She couldn’t possible say that there had been no change when my neck wasn’t scanned in the first place!

Obviously, she tried to wriggle out of it and fob me off and then said, ‘because you are not having ‘treatment’ we don’t really have to give you scans anyway.’ Basically she was saying that because I am choosing not to have their nasty mustard gas pumped into my body that the hospital has no duty of care. I told her that if this is the case I was going to make an official complaint, at which point she told me that she could organise an ultrasound on my neck which would determine the size of the tumours. I cannot begin to tell you how angry I am at this news. If they can tell what is happening by carrying out a simple and SAFE procedure which will give me the results almost immediately, then why wasn’t this option offered to me in the first place? I think she only offered me this option because she knew I was going to take the matter further.

So, now I have to go through waiting for results again, when I am only just beginning to recover from the last few dark days.

There are so many issues surrounding this whole fiasco, not least, IF I were having chemotherapy they would have continued to scan my neck each time so that they could justify spending hundreds of thousands of pounds on it. As soon as money is no longer involved they don’t particularly care what is going on, and stop scanning the tumours!

Yet another of my bugbears is that Doctors do not listen to what their patients are telling them. I have told her on more than one occasion that I will never have chemotherapy again, and yet she told me ‘I know you said you wouldn’t have anymore chemo, but…’

I did enter into a conversation with her regarding ‘alternative cures’ which she tells me she has never heard of, but she is obviously going to continue to say that chemo is best as that is what is so lucrative for her. There have been so many studies carried out that have found that DOING NOTHING results in cancer patients living four extra years than if they had recieved chemo. These are not ‘quack’ studies, they have been cited in the Lancet, the doctors own professional magazine.

Anyway, I am aware I have rambled quite a bit here, but I am still so angry about the whole thing. I rounded off the conversation with my oncologist by telling her that she works for me, not the other way round, and that I should be respected for my treatment decisions and that there should be complete honesty between the two of us. She did make a half-hearted attempt at an apology, but it was pretty weak to be honest.

I fully respect anyone’s decision as to whether they have chemo or not, but I honestly believe that if you don’t take responsibility for your own health and demand openness and honesty from healthcare ‘professionals’ then it will very much be to your detriment.

Rant over….

 

 

 

 

 

The Agony of waiting…

I had my scan on Friday. It was totally horrific for me, just being back in the hospital made me feel so panicky and depressed. I asked to have the cannula put in on the ward, as last time the CT nurses couldn’t find a vein and I ended up black and blue! Trouble is, this meant having to go to the chemo ward. I can honestly say that I don’t know how I managed to go there for treatment every three weeks. As soon as I entered the ward all the memories of how I used to feel came flooding back. I was hoping someone would recognise me and ask me when I would be returning for more chemo, just so I could tell them about what I was doing and how bad chemo is. Unfortunately nobody did recognise me so I didn’t get the chance!  As it was, it took them three attempts to get the needle into a vein, and then it was up to Medical Imaging for my CT. Once there, I had to change into a gown and sit with lots of other depressed looking people also sitting in gowns. Words can’t describe how I feel when I am sitting there…scared, vulnerable, no, they just don’t sum it up. Anyway, after a twenty minute wait I got called in, and, to be fair, the nurse was really lovely. It did, however, take some persuading to get her to remove my cannula after the scan as she said, ‘Don’t you need to go back to the chemo ward now?’. At last! I got my chance to tell someone at the hospital that I had given up conventional treatment and was following my own path.

Now, of course, is the excruciating wait for results. Again, words can’t accurately describe the feelings that I am experiencing right now and for the next week or so. ‘Terrified’ doesn’t even begin to sum it up! I hate feeling like this, as most of the time I am feeling positive, living in the moment and truly believing I am getting better. The very moment a scan comes into play all that goes out of the window and I begin to question myself and think negatively. It’s one thing hoping for the best, but, at the same time I believe you should also prepare for the worst, just in case.

So, I am doing my best to keep occupied, not over think things and get on with day-to-day life. As the end of the week approaches though, I know that I will be in a real state waiting for the phone to ring…willing it to, and at the same time dreading it. I think I have made the right decision to hear the results over the phone, but it does mean that every time the phone rings my stomach lurches and I start sweating!

At the end of the day, getting worked up about it isn’t going to change a thing, but sometimes that is easier said than done…especially when I look at my beautiful family…

Back To Reality!

Hi! It’s been a while since I last posted, mainly because I have been too busy enjoying myself! In the past month Andy and myself have been down to London to watch the recording of the Alan Carr Chatty Man Christmas Special (It was great!), spent 10 days in the Midlands with our families over Christmas, spent a night in Birmingham, and have just returned from 4 nights in Cornwall!! Being so busy has really helped keep my mind occupied and has certainly helped with the awful weather we are having to endure! However, it’s now back to reality with a bump!! Next week I have a CT scan booked and, after careful consideration I have decided to go ahead with it. Is it any surprise then, that all I want to do now is book another holiday!

I have always hated returning from holidays, even if I am really happy with where I am living. I have always found reality quite difficult, even though my reality is a good deal better than a lot of other peoples. I am very grateful for my wonderful family, that we have a lovely home to live in and enough money to be able to enjoy ourselves, but I can’t help getting a sinking feeling when I step through the front door after a lovely time away.

Our recent stay in Cornwall was one of the best breaks we have ever had. We stayed in a detached lodge which was very luxurious (we couldn’t get the kids out of the jacuzzi bath!), and although the park did not have many amenities, it had a warm swimming pool which the kids went in every day. We have previously been to the park and whilst we were there previously Boots taught himself to swim! That was partly the reason we went back, as we know how much the children love the pool. Again, they were swimming away happily each day. We managed to get them out of the pool,( and bath) to get a day in Newquay. It is not my favourite town, especially in Winter, but the sun actually came out on the day we went there and so we managed to get a walk on the beach.

So, back to reality and a few difficult and worrying weeks ahead, waiting for my scan results to come back. I am trying not to get in too much of a state, as there really is no point, but most of the time I can put my diagnosis to the back of my mind. A scan automatically puts it right at the forefront. I have been taking my supplements and LDN, and have stuck to my diet (well, most of the time!), and so I am feeling hopeful. I also have other things I can put into place should the result not be what I am hoping for, so I know that I need to stay relaxed and not let my mind get carried away. I am going to practice mindfulness more and make sure that I do my meditation every day, and also try to get out and about (weather permitting!)

I am aware that it is also a difficult time of year generally, mid Winter and torrential rain every day! I, like many others, also get quite a bad case of the post-Christmas blues. It is the Winter time that I find the most difficult, and hate wishing my life away waiting for Spring. At least I have Elena and Boots to keep me busy. If it wasn’t for them, I don’t know how I would be coping. Our holiday was extra special as we didn’t take a laptop, so we spent quality time with them without them constantly asking for computer time! It is because of this that we have decided to limit their computer time even more now that we are back to make sure we do things as a family on a daily basis. It may take a while for them to accept this, but I know they will adjust and appreciate playing more games with us and hopefully going out for more walks.

Right, I suppose I had better go and un-pack, have a little cry, then get on with life! Wish me luck….!

 

 

 

Bloody F*****g Hospitals…!!

Yes, that’s how I am feeling today after my brief trip to the hospital yesterday! I was doing just fine until I stepped over the threshold of that awful place! It was only an appointment for a ‘chat’ about how I was doing, but it has left me feeling bloody suicidal (and that is not something I mention lightly!) My oncologist was ‘nice’ enough, but it was they way she said things and the way she looked at me and basically her whole tone. I said I would like to have my port removed as I have no intention of ever having any more chemo, even if things progress. Her reaction? ‘We will have that conversation WHEN and if that time comes’.

The first thing she asked me was if I had had any issues with pain, and when I said no she looked almost disappointed! Andy reckons this is because she can’t get her head around me still feeling well when I am not having chemo. He may be right. She asked me about scans and I decided I would get Christmas and my birthday out of the way before I have to contend with that little treat. ‘Do you want me to tell you the results over the phone, good or BAD?’ she replied. As you can tell, I am just hearing the NEGATIVE words she is saying, but that is what happens when you are in my situation.

The whole bloody experience has sent me plummeting, feeling negative, depressed, worrying and every other negative emotion you can think of. I am questioning stuff I never usually question and can’t make any decisions about anything, however small.

Andy said to me last night whilst having to listen to all my shit, ‘I don;t think you should go back to the hospital again’, and do you know what? I think he’s right! The only problem with that is that if I don’t know what’s happening I won’t know when I need to ‘step things up a gear’. The only option I can think of is to go private (which is totally against all my principles), except apparently I would still have to go to THAT place to have it done. I’ve also considered medical Thermal Imaging, but that won’t be comparable with my CT scans. When I mentioned it to my oncologist she said ‘they haven’t been tested as being reliable’. Oh, surprise surprise, something the hospital isn’t doing obviously isn’t reliable…never heard that little nugget before!

I’ll go back to bed now, have a cry, scream into my pillow and then hopefully wake up tomorrow with it all feeling like a distant memory..Well I can hope can’t I?

Heartless Scammers……..Medical marajuana

big cannabis marijuana plant detail

As most people are now aware, cannabis oil has been shown to be very effective in the fight against cancer, which is great, except it’s not is it? It is illegal, even for medical use. This leaves people who have cancer, or whose children have cancer, at the mercy of scammers, promising they can provide you with the real thing, when actually a lot of the time it is nothing of the sort.

There are two very important issues here. Firstly, how anyone can stoop so low to take advantage of chronically ill people, and secondly, why good people looking for a cure are made to be put in this situation. I have first hand recent experience of a scammer,  and just a cursory look on google and it becomes obvious that  this is widespread. People with terminally ill children are shelling out thousands of pounds in the desperate hope that they are buying the proper oil, when most of the time it is sub-standard or fake. I believe, however, that the far more important aspect of this debate is why people are forced into illegal activities to get hold of the medicine that may well cure them.

There are many examples of people curing themselves of stage 4 cancer with cannabis oil, and I have also heard of many medical professionals who also see the huge benefits of cannabis oil.

One example of a patient curing brain cancer with cannabis oil…

https://patients4medicalmarijuana.wordpress.com/2013/04/21/24-yr-old-rejects-chemo-curing-brain-cancer-with-cannabis-oil/

Cannabis use for medical reasons is either de-criminalised or legal in many countries and some American states, so isn’t it about time that this happened in the UK? You would think so.

https://en.wikipedia.org/wiki/Legality_of_cannabis_by_country

Whatever your opinion is on the use of recreational drugs, the fact is that cannabis oil has cured many people, including children, so next time you hear someone say that medical marijuana shouldn’t be legal, maybe tell them the implications of such an opinion.

My stance is that cannabis should be legal for personal use, irrespective if it is used for medical reasons. Alcohol is a legal drug which quite often can lead to aggression, illness, crime and death. It is certainly responsible for the break up of many families also. In contrast, there has never been a reported death as a result of using cannabis. The Government is saying that you can have a very harmful drug legally, but you cannot have one which causes no harm, and can alleviate pain and cure chronic disease!! I even read a statistic that claims that people who smoke cannabis live an average of six years longer than those who don’t..

A point I often hear, especially from the older generation, is that cannabis is a gateway drug to harder drugs. I don’t believe this to be the case. Most people I have met over the course of my life have smoked cannabis at some time and yet I don’t know a single heroin addict. Plus, if cannabis is thought to be a gateway drug, then why not alcohol?

The whole situation makes me so angry. The situation at the moment means that if I grew cannabis and gave it to people who have cancer, or whose children have cancer, I would be deemed to be a drug dealer, a threat to society, and would be sent to prison. Absolute bloody madness!!