10. April 2014 15:28
Just a quick blog.
Firstly to say ‘Happy Birthday’ to Jake, I know you are reading and I know your birthday was on Tuesday but thought I would mention it on here for you.... Hope you had a great day!
Yesterday I finally got an email from Prof Dalgliesh. It was short and sweet, much like all the emails from the medical profession.
‘She has discussed with another colleague who feel that if you have no other disease outside the chest then this would be an ideal approach.
They will be getting back with dates asap.
They have seen responses in non treated lung deposits doing this in other patients of mine
so they are well primed.
I was a bit excited and also confused. What does this mean? I asked Pete if it is a good thing and he confirmed it was a great thing! We just need to know whether I should be having vaccinations before ablation and when, where and all that stuff.
So I replied with a few questions and have heard... nothing...
We also need to know if I should cancel chemo which is booked for a few weeks time.
Well at least I got some sort of reply... now do I wait another three weeks?!
My Bear sent me a lovely little excerpt this morning from The Velveteen Rabbit. He is such a softy. Love him.
“Real isn't how you are made,' said the Skin Horse. 'It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.'
'Does it hurt?' asked the Rabbit.
'Sometimes,' said the Skin Horse, for he was always truthful. 'When you are Real you don't mind being hurt.'
'Does it happen all at once, like being wound up,' he asked, 'or bit by bit?'
'It doesn't happen all at once,' said the Skin Horse. 'You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand.”
Light and Love All. X
8. April 2014 16:56
The weekend was probably one of the times I have been most proud of myself and my friends.
As mentioned in my previously blog Pete had offered our ‘ support to three girl friends who are going to be doing the Three peaks challenge, which is climbing Ben Nevis, Scarfell Pike and Snowdon in 24 hours for our chosen charities. In preparation for this they have been doing smaller climbs/walks in training. Pete suggested Pen Y Fan in the Brecon beacons.
We all met at our house on Friday night and in such excitement got chatting and drinking... uh oh... An early night was planned but we got to bed at midnight. We were leaving at 6am the next morning. This would have been fine had we not decided red wine and hot chocolates (mit rum) were a good idea! What did we expect really? We haven’t seen each other in a while and really have no self control! Ha-ha.
This didn’t stop us. Dragging ourselves out of bed and having my great man by our sides, he drove us three hours to Wales. I was dreading it. I am not a natural walker and having never climbed anything steep since Ayres Rock when I was 21 years old. Things didn’t improve my outlook when we arrived it was very cold and damp and the visibility was not good at all!
But onwards and upwards, we began our walk with high spirits. It didn’t take more than five minutes before I was completely puffed out and I had a good old moan all the way up! The girls didn’t appear to be out of breath at all and Pete just continued slow and steady. He just kept saying, ‘One foot in front of the other, that’s all you’ve got to do’.
We made our way up to a plateau where we came across a big group of men who said the conditions were pretty nasty ‘up there’. We carried on and sure enough conditions were nasty. The wind was howling and blowing us over and the rain was hitting us sideways. But we made it to the top!
The walk down was just as hard and now very slippery but I was so much happier having made our way up there. It was a great achievement for me and I think the girls now realise how hard their challenge is going to be. It gave them a chance to feel it in bad conditions and gave them a chance to see how their kits coped. Not very well in some cases... boots had puddles of water in.
Have a look at this video of our day here;
We were so please for our warm, dry car and for thankful Pete driving us home.
We got home, had hot showers, changed our clothes and just chilled the rest of the day grazing on tapas and celebrating with pink champagne. What a weekend!
So what did you with yours to make it memorable?
This week I had decided not to work quite as much as the last. I thought I had kept plenty free and booked myself to go and have lots of therapies. The only thing is I know realise I haven’t left myself any time to get ‘stuff’ done. I have this list of things to get done that have been bugging me. Things you really need to have a clear head and be in the mood for. But by the time I have been returning from my ‘therapy’ session I realise there is barely any time left after doing chores. Oops. Maybe I should have really left some time free.
Yesterday I went for reiki to a lady called Silvana. A lovely lady whose cat seemed to take a shine to me. (Hear that kitty? A cat actually liked me and sat on me!) It was a very relaxing experience and during the session I had a jolt in my tummy which seemed to shoot up my chest. I have never experienced anything like that before. The therapist suggested I try not to give the canSer my energy. I know what she means but I cannot simply not think about it. If I do that then how do I focus on being canSer free? I didn’t experience anything else and slept reasonably well last night. I don’t however feel completely rested when I awake. Strange.
Today, I went for pranic healing. I really like Les, the healer. He is so optimistic and really believes that we are ‘getting there’. He suggested that I put the doctors that make me feel anxious in my Soul Forgiveness Prayer. He thinks letting go of anything negative really would serve me well. I tend to agree with him. I do feel up tight and I feel it is wasting my energy.
I received an email from Prof Dalgliesh this morning. I thought, ‘OO!’ But needn’t have bothered. He emailed to say the radiologist was off last week and hopefully they will look at my scan today. That’s nearly three weeks of waiting....
Anywho.... The afternoon is sunny and I have been reading a little and had the pleasure of my kitty’s company. Life really isn’t bad when it’s like this, is it?
4. April 2014 15:54
So another week passes and I am still uninformed as to whether I can have ablation privately or if the vacination trial is appropriate for me.
I emailed Prof Harris, my NHS oncologist yesterday who thankfully replied to my questions before going on annual leave for a fortnight. The radiologist there has decided I am not suitable for ablation there because I have nodal involvement. Oh... How annoying. I asked for ablation a while back when I didn’t have nodal involvement and was told no then too. Go figure!
Hurry up Dalgliesh please let me know if ablation is possible! The waiting is awful and I don’t mean to be rude but the bill for their consultation comes quickly yet their promises that they will let me know within a week doesn't
I did find out from Harris that there is a sample of my tumour available should I wish to proceed with the genetic testing. Well at least that’s something. I think I will put that on the back burner for a short while.
I also asked Harris some questions on having the gem/carbo regime. Things like will I lose my hair? Will I need a PICC line? And more. He replied that both regimes, i.e.; Gem/Carbo and Eribulin are both good options but seeing as we have funding for Eribulin right now that we should go with that. Oh... again.
I know it’s minor in the scheme of things, and even though Prof Stebbing has strongly suggested platinum regimes over Eribulin, I kind of think that if my hair is going to fall out due to side effects on one chemo but not on the other then surely opt for the one that doesn’t cause hair loss right now, then when that stops working go for the one that does cause hair loss. There is some logic to my thoughts! But now I feel that I will be whining and asking too much by enforcing what I want to do. I don’t want to be a trouble maker, a difficult patient or anything... However I feel I already am. But it makes me think of the NHS saying, ‘No decision about you, without you’. Now I know I agreed to Eribulin in February. But now I have changed my mind. Yes, I am being vain, and maybe a little influenced by what Stebbing has told me, but can’t I decide what I want? I hate confrontation and I wonder why does everything have to be so hard. I can totally understand why canSer patients give in and just say, F*** it!
That aside the last few days have been rammed with business and I am not sleeping as well as usual. I am eating emotionally and filling my face, albeit with healthy stuff, but continuously. I don’t like the unknown and all I need right now is to know either way what is going to happen. P.S. I hate being ignored.
I have used my time wisely though in between my clients. I have had the pleasure of speaking with a New Zealand born man who is now living with his family in Germany. His wife has canSer and they want the best treatment. He has been giving me info on tests and treatments his wife has been having.
Also I had a reply from a lovely lady who lives in the USA. She is a triple negative survivor for real. She was told she had a limited life expectancy and went to Germany for treatment under the care of Dr Ursula Jacobs. The list of treatments was lengthy and even hard for her to explain in detail but low and behold she is home and five years later in remission. She regularly has testing on her oncogenes to see how active the canSer still is in her blood. Apparently it is currently very low and she is feeling great. Unfortunately Dr Jacobs no longer works with canSer patients but she has emailed me to tell me another doctor who could help possibly.
She did tell me though that Prof Vogl, whom I had booked with to go and see this week, would be a really good option. She said that she has stories of people that went there and had many, many tumours which cleared and they are in remission. It does give me hope. Pete and I had already decided that if this treatment with Dalgliesh doesn’t come about then we are definitely going to see him.
I am finding it hard to sleep at night, I think mainly because I am eating and drinking too late, my mind is buzzing. So I have been using that time to focus on the GcMAF working. This could be a really good time for things to be happening and my order of GcMAF arrived yesterday so I had my next round of shots. I certainly don’t feel ill.
I have been asked with the air pollution issue that we are experiencing currently in the UK, if I am feeling anything on my lungs? Nope. I feel as well as usual.
I have been reading the importance of exercise and the effect it has on the glucose in the body and of course we know how glucose affects canSer. This is why so many very fit and active people last much longer when living with canSer. I don’t think I do enough. Some days I only do twenty to thirty minutes. I know I should do more.
Well tomorrow I will be... my friends are going to be climbing the three peaks for charity soon and needed some training. Pete kindly offered for us to go with them to the Brecon Beacons and walk up Pen y Fan. Check this out; http://www.nationaltrust.org.uk/article-1356405780951/
Should be fine, yet I hate heights and am not really that fit! Oh well it gets me out and about and I am sure it will be fun...four girls and a Bear. Sounds like a really good children's book! Illustrations pop into my mind!
Next week I have a lot planned. Of course if something to do with having treatment pops up then everything gets put on the back burner but for me at the moment I figured I would have more 'me' time. I am having healing/reiki, pranic healing, a yoga class (yes finally!) and acupuncture. Amongst that I hope I find some conclusion on this ablation debacle.
I hope that everyone else has a great weekend full of fun and laughter.
Here's a Friday Funnie for you...
Look out for pictures on Facebook of our eventful day tomorrow...
Light and Love... XXX
2. April 2014 17:11
I took the opportunity yesterday to enjoy the weather as much as possible after detoxifying my house. (It was desperate for a proper dust and hoover amongst other things!) So despite my list of things to do growing I decided to have lunch and then read my new book in the sunshine with the cat on my lap.
The book is about energy experiments that prove your thoughts are your reality. I decided that I would try it out and see what happened. I have been waiting (patiently) for ‘people’ to contact me.
I often wonder why‘people’ say they will do something within a time frame and then don’t do it. I then think is it me that’s being a pain in the arse for getting arsey with them for not sticking by their words?
Well with this new experiment underway I decided to believe that the universe would give me what I wanted and that I would hear from these ‘people’ within 24 hours.
Low and behold I did. I didn’t necessarily get the result I was hoping for but I did at least hear from them. The experiment worked.
First thing this morning I received a short mail from Prof Stebbing basically saying that he thought it was hard to tell if I can have a biopsy for the genetic test and that I should discuss with my oncologist Prof Harris. I was totally confused. If I wanted to discuss this with Harris surely I would have done that? I couldn’t understand why I couldn’t have it done unless they say it is physically not possible, especially after being told that I could potentially.
He replied asking my mobile number. I gave it to him. He called. He was very obscure and almost intimidating in the way he spoke but I have gotten used to thinking that is just the way he is. As with all intelligent men in this field we are supposed to simply trust them without question. The problem with e is that I have bloody millions of questions! He said that in his professional opinion that I should be looking at having a platinum agent rather than genetic testing. I said I thought that having the biopsy now was the right order to things. I could at least then have the genetic test at a later date all whilst I am having chemo or some other treatment. He said he feels I have paid too much money for treatment and doesn’t want me to do that anymore. He said a biopsy could cost me in the region of £50,000 if it goes wrong. How could it go wrong? I asked. He said that it could have a bleed or infection etc. Plus he said that paying in the region of £7000 for a genetic test is simply too much. Ok so why did they suggest it then? The mind boggles.
He said that I need treatment options right now and not diagnostic options. Ok hear ya..and I’m not against having a platinum agent such as gem/carbo regime (not that I am loving the idea of having my body flooded with chemicals) he said he wasn’t fobbing me off and that if his wife had to choose , this would be it. OK I really hear ya. I am sure he said, ‘Ok darling, bye’ at the end. Ha ha!
So that was a weird start to the day. I always feel rejected when I am told that I cannot have something even if I didn’t really want it! It also makes me wonder are they telling me they don’t want to spend money because I don’t have private healthcare and unlimited funds.
I then get a call from the radiology department asking me to pay £243 for the cost of a radiologist to look at my scan to see if I can actually have a biopsy. Uh? I thought Stebbing had just said that I shouldn’t do that? I guess that they hadn’t communicated. Part of me wanted to pay the money and find out if I can at least have the biopsy. I haven’t rung them back to let them know. Still pondering.
I then called Dalgliesh's PA. I decided this was easier than emailing. She immediately said that she had asked him to call the radiologist to tell me if I can have ablation. No such joy as yet. I then mentioned if they had heard back as to whether I can have the vaccination trial? She said she didn’t anything about it and that I have to wait till I get a reply about the ablation. For goodness sake... seriously. Its two weeks since I saw him. For people that work in oncology where time is clearly important how bloody hard is it?
I have to say how thankful I am for the NHS at this point. At least when it comes to treatments that they approve you can get them very quickly. Anything outside the normal route and guidelines however takes so much longer. I am waiting, seven weeks on to hear from the radiology department at the Churchill as to whether ablation is possible there. That said I am feeling a lot of love towards Prof Harris. He is the man right now that at least replies when I ask him something. It may not be want to hear but at least I get a reply. His PA, Emma, is a diamond too. She has emailed regularly for some time now and she is a god send.
I reckon the Universe has a plan. I don’t know if I was meant to wait all this time for my next round of cancer smashing treatment (even if it is chemo) but maybe that’s what was mean to be. Instead I have been on GcMAF. I had a batch arrive today for me to take for the next few weeks. Fingers and everything crossed it is at least doing something positive in three.... Please, please, please, pretty pleasejQuery15202801579472960667_1396455100883?
You never know how the day will pan out and what kind of news you get. I do like that about life but all these twists and turns play with the heart and the head.
I will keep digging for a reply from Dalgliesh- surely by the end of the week there will be some confirmation?
31. March 2014 19:29
I am having trouble finding time at the moment. I feel hugely overwhelmed with things to do and things I think I should be doing...
Mum stayed with me last week whilst Pete was away but unfortunately she was ill for most of the week.
At the end of the week Pete and I went to London to see yet another well known Prof. This time it was Professor Stebbing.
We sat patiently in the waiting room when Prof Stebbing walked in the front door and said hi to a patient of his. I knew who he was as I had googled him but was a little surprised as he stared at me, almost trying to figure out who I was. It was like he knew me.
We had the pleasure of meeting him and his colleague also from the Imperial College too. He fired a lot of questions at me and a-hemed as if he already knew the answers. Maybe he had googled me?! Ha-ha!
I found him very friendly and sympathetic. I must admit I was hoping for an amazing meeting like my friend had experienced but sadly the appointment was over in half hour when we were asked if we wanted to talk to his colleague about genetic testing.
During our meeting with the Prof he did discuss immunotherapy and his interest in a combination of drugs and immunotherapy and there are some trials, one of which I may be eligible for.
Whilst there, Prof Stebbing said what a great guy my oncologist Prof Harris is but suggested that instead of having Eribulin as my next chemo of choice to opt for Gemcetibine combined with Carboplatin. He dictated a letter to be sent to Prof Harris making this suggestion.
Taken to another room I spoke with his colleague who wowed us with a potential genetic mapping process and how we would be able to discover the mutations in my tumour and see what genes are affected. This would mean treatment could be specifically catered for my individual genetic mapping. This could potentially open up many doors. Apparently it would only take three weeks for this process but first I would need a biopsy. I was under the impression I couldn’t have a biopsy but was informed that I could. So I have left a copy of my ct scan for a radiologist to take a look at and to confirm if this is the case.
Then came the news of how much genetic testing would cost. It would be sent to an American company and the cost would 7500euros. Oh....
So I left feeling like I had more questions than answers. But I always do. I did feel relieved to have met such a nice oncologist but felt disappointed he didn’t have more time. I wanted to pick his brain on everything like Prof Vogls treatment TACE and so on. But then I don’t suppose he would comment much on things they don’t know much about.
So where am I up to?
I have a copy of my ct scan with a radiologist who is going to be telling me whether I can have radiofrequency ablation and a biopsy.
I am waiting to hear back from the ‘board’ to know if I am accepted on an immunotherapy trial with Prof Dalgliesh.
Once I know about the biopsy, this will determine whether I am going to go for SmartGen genetic testing.
All the while I have chemotherapy booked for the end of April. Should I decide to proceed with that, I am now considering Gemcetibine and Carboplatin as recommended by Prof Stebbing. He said that I won’t lose my hair with this combination and can always have Eribulin at a later date.
Zometa and Il2 are still being recommended but at this point in time I am unsure as to where I can get this as Prof Harris it isn’t available on the NHS for triple negative breast cancer.
I am feeling uneasy again. It’s so ironic. I said I didn’t want chemo for a few months and I got my wish. But I am filled with dread as to what my next scan will say.
Pete and I drew a chart yesterday of all the potential treatments available to me. I should be feeling quite happy as I have lots of options available and this could see me through at least another few years all going well. Pete said not to expect the next scan to be good but be assured that the rest of my body has had time to get stronger and be ready to fight again.
I guess I am just worrying and frustrated as I want to know whether or not I have the green light for the next few treatments. Suspense is not good for me.....
But I have to remember I feel well... I look well and I don’t want to miss this time. What I really want is for this all to go away... Ho hum.
The weekend flew by as usual. Yesterday was lovely working in the garden and I was nursing a bit of a hangover. I think I let off a bit too much steam as I drank way too much on Saturday at my friends hen do... but never mind.
We snuggled up in front of the chiminea last night enjoying our extra hour since the clocks changed.
This week has lots to do and I hope that good news is coming...
27. March 2014 16:47
I can’t actually believe it has been a week since I last blogged. I haven't been away in fact I have been home the whole time. But Pete has been away and I guess I have just tried to keep myself as busy as possible. I have been busily making sure I have eaten completely veggie diet and have had fun making my own food from scratch every day. Pete usually does the creating in the kitchen. I present him with ingredients, Ready Steady Cook style and he cracks on with making a wonderful dish. I have to say I have really enjoyed making simple, fresh nutrient dense food.
I have also kept myself busy with work, homework and setting up a new website for the health coaching side of my business. As well as this I have been practising my coaching skills on friends and I am pleasantly surprised with how many are actually interested in my services. What is more surprising is how much I know! I didn’t think I would be able to counsel and advise but it turns out I know more than I think.
The nights are the hardest without the Bear but I have had plenty of company. At the weekend the only night on my own was spent in front of the TV mainly crying at Sport Relief, a very worthwhile cause. Then every evening since then I have been accompanied by friends or my mum.
With Mothers Day just round the corner I was pleased when Mum said she would stay with me for a week. I had lots planned in between working (for mum to do and help me with!) but she has been ill since she arrived. So I have been the dutiful daughter doing my best at looking after her. This is a novelty as I am so used to people looking after me!
Thankfully my Bear arrived home last night and what a relief to finally be back in his safe warm arms.
Not much has happened on the treatment front this week. I am patiently waiting to hear about possible treatment with Prof Dalgliesh. I did have a moment yesterday when having sent a copy of my last ct scan to Prof D’s PA special delivery to arrive by 1pm; she informed she hadn’t recieved it despite the tracking system stating it was signed for. It was found eventually and I have been informed it is now in the hands of a very good radiologist who will let me know if I can have ablation.
I am still taking GcMAF but I am now down to my final vial. I think I will buy more and carry on until I can have treatment. I have had reports from fellow attendees to the GcMAF clinic in Switzerland that things are looking good for them. This is good and I need to stay hopeful.
I have as instructed cancelled all appointments for next week in Germany... reluctantly I might add. I like having the safety net of physically doing something. But I must patient... (It’s like a mantra!)
I had a call yesterday from Birmingham hospital. They were in receipt of my vitamin d test and it is their duty of care to contact patients when they are concerned about the results. The concern is my vitamin d result shows at 392.9 nmol/L. Apparently anything over 220 nmol/L is too much. My previous one over a year ago was at 189nmol/L. OK So I guess I need to make changes. They advised me to stop taking my vitamin d supplements and get a full blood test from the doctor.
I was a little surprised. I really didn’t expect supplements to have that much of an effect on the body considering they are such small amounts being consumed. It’s good to know they are doing something.
I have also received a summary plan of things to start taking in response to the RGCC blood test from Dr Hembry. Things such as artemisinin in higher doses, genestein, lycopene and quercetin.
She has also suggested I may be able to have artesunate and polymannan extract administered intravenously. Dr Hembry is currently away but I will find out on her return.
Overall I have been having a great week but I am so surprised as to how busy I am. I don’t have time to breathe. I think staying home next week is a good thing but I have foolishly been booking in new clients and before I know it my diary is rammed. I am not complaining I am just surprised at the quantity of new clients I am getting.
My personal appointments are dwindling though. I have had to cancel reflexology and acupuncture recently and pranic healing don’t have any appointments that suit my times on the next two months. I need to make sure I look after myself and I must put myself first. I would like time to read more and I HAVE to do some artwork or ipad doodles.. I guess that’s artwork!
Being a good daughter and to treat mum for mothers day I hahve today done her a facial and painted her toenails.. she is currently asleep in my treatment room!
I still have plenty of work left to do today but it’s good to be busy. I am looking forward to a soak in the tub though... I feel like I need it!
Tomorrow is an exciting day... (after seeing my friend and having a hair cut) Pete and I are off to London to meet Prof Stebbing. I can’t wait!
Mmm, the yummy smell of cinnamon apple crisps... I am making some right now. I'm off!
20. March 2014 20:52
Today was reasonably eventful. Further to my thoughts of going to Germany to have TACE with Professor Vogl I had the opportunity to speak with another person who has been treated by him. Patricia peat from cancer Options gave my number to one of her patients. A lovely lady called me and we discussed all about her and her treatment. She has received 8 TACE sessions which is highly unusual as three to four sessions is usually the maximum. However, Nina needed that many because the cancer was quite advanced and already within her breast, chest, spine, liver and lungs. Phew and I think I have it bad. It makes me realise how bloody lucky I have been so far.
Like me Nina didn’t want systemic chemotherapy and opted for Professor Vogl. She said he is great and put my mind at rest and I thought, ‘Right I am definitely going to go and have his treatment. ‘
That was until we met with Professor Dalgliesh this afternoon. Prof D has been on our team since I was first told the canSer was incurable. He was the one that referred us to Doctor Nesselhut and introduced us to immunotherapy and the world of vaccinations.
We decided that it was about time we had a meeting to discuss what could be done and also to sound off about our recent experiences at Doc N’s clinic in the last six months.
We expressed our passion for immunotherapy and that even though in the last six months the tumours have continued to grow despite the vaccinations we do believe that it is keeping me well. My blood tests whilst on chemotherapy never show to be that of someone on chemotherapy! That must have something to do with that treatment.
I explained that TACE with Prof Vogl and Doc Nesselhut and further DC therapy was booked for the beginning of April but were wondering if there was anything in the UK we could be part of instead of having travel to the Fatherland. Prof Dalgliesh is of course the head of the Cancer Vaccine Institute and if anyone knows about vaccinations and trials in the UK it is him. He explained that there were no trials for this kind of canSer but, and this is a BIG but (I like big BUTs and I cannot lie... Ha) he did start thinking out loud. We discussed that radiofrequency ablation could be an option and quite effective in my lungs and despite the fact that blasting tumours would mean sending fragments to settle and grow elsewhere combining it with immunotherapy could actually mop the fragments up!
He said that he would ask the board and tell them my situation and show them my scan and hopefully I could start that in the next few weeks.
I asked how it would work. He said that I would need to go every two weeks to begin with then monthly then two monthly and so on. During which time I would have RFA (radiofrequency ablation)
Well Pete and I were all wide eyed and happy at the thought of having treatment in the UK. Whether we pay for it or not it would be load off. The pressure of travelling and being out of work and away from home is a lot to handle but of course essential if it means I can stay well.
Prof Dalgliesh said that I was looking great... Yes I have heard that a lot... Ha ha.. Let's keep it that way!
I did explain to him that I had been having GcMAF and he knew all about it. He didn’t have much to say on the matter. He did however say that Professor Vogl is well esteemed and highly rated as an academic, not like Doctor Nesselhut who is lovely and is ground breaking but is not as academic as Vogl.
The thought of treatment in the UK left me reeling. What if the board turn me and I have cancelled my trip to Germany? I am obviously very aware that apart from GcMAF I am not having any treatment and technically the treatment I have been having in the past few months have not been working. I am worried that the canSer is growing and that it may spread. I am touching wood as we speak and being ever grateful that thus far it has not got further than my lungs and chest lymph nodes.
I am however secretly excited that I am looking to have another month of non invasive treatment (well except RFA but I can handle that!) Prof D said that if we go ahead with his idea that Prof Vogl would be a great back up. This is it then. The Plan.
Pete seemed really happy and I feel pretty good about it. I have everything crossed that they accept me and I can get started ASAP.
Whilst there we discussed other treatments and the Prof suggested that I ask Professor Harris, my usual oncologist if he can arrange for me to have Zometa infusions and interleukin2 on a regular basis as this would really help.
He also mentioned low dose naltrexone. I am already taking that. And actually received a prescription for the next three months from the UK distributor I mentioned the other day.
So all in all a great result. I now hope that I am not left hang8ing for weeks as, bless the Prof, communicating with him can take time. Something I do have but time is of the essence for me. If I want to stay well and not have any spread then I have to crack on.
I want to add that Nina Joy, who I spoke with this morning, has blown me away. I have been reading her blog and her picture shows a beautifully strong women. Wow, what a gal. She has written a book which has just been published. I am going to buy it. If you are interested in her story then please check out;
The Adventures of a Cancer Maverick by Nina Joy
Her blog is www.ninajoy.com
So once again a lot to think about but it just goes to show that the options are still there. There is still hope too even when the disease has progressed because after speaking with Nina I now realise you can still feel great and symptom free despite having many tumours. It’s living with canSer not dying from it that counts. I intend on doing just that for many years by which time there will be a cure or at least a treatment that will mean I can live until I am old grey with my man by my side.
What a lovely thought.....Night all. X
19. March 2014 18:07
Yesterday I went for my weekly pranic healing session. I know that people think I must be mad but each to their own. I get a lot from it. I suppose it is odd as I don’t have any physical therapy but I am open to believing in anything at this stage. Plus I have a friend who has the treatment and really believes the canSer he has, has reduced due to this healing work.
I take from it what I can. Les, the healer suggested I do a 'Soul Forgiveness' prayer and to truly imagine letting go of any resentments or conflicts that I may be harbouring. When you have canSer there are plenty of those and to be honest even when you haven’t got canSer. We all have our hang ups, but I believed I had put a lot of my ‘stuff’ away... let it go and so on. In the last 18 months I have done plenty of soul searching as I believe negative emotions need to be released so that you can truly release a disease or any illness that manifests itself in one’s body.
Les asked me last week, when I was feeling pretty delicate and emotional if there was anything that could be deep within me that I am not letting go off. And my dad popped into my head.
He had called me a few days earlier and left a voicemail. Quite normal I guess for most reading this. But for me my dad has always been a bit of a sore subject.
Being completely honest and laying all my cards on the table for the public to read (I sometimes have to remind myself that this journal of mine is there for all to see) my dad is a big drinker. He always has been throughout my whole life. Having to admit he is an alcoholic is pretty hard. Especially as he is the greatest man that ever lived. Well all dads are to their daughters when they are growing up. Being from the east end of London he is a grafter and ‘Jack of all trades’. He could build anything and regularly did our house and garden up. A truly amazing hard working individual. But this was regularly marred by his drinking habits and the person he turned into when he drank. As with any drinker they all become loud and obnoxious. I have hated seeing him like this all my life. I think mainly because you never knew what kind of mood he would be in when he got home.
Sadly my mum had enough of ‘that’ person a few years ago and decided that life without him was better for her soul. I don’t blame her.
But that didn’t stop me from wishing he would stop drinking and be the dad that I absolutely adored as a child. The thing is if he rings after 1pm I generally avoid the call. 9 times out of 10 he would have been drinking and I really cannot tolerate that person.
I told Les about how I felt about him. That my dad only tells me he loves me when he is drunk. He was never a very cuddly kind of person and it makes me cry every time he says it. I guess because it feels like he has to be drunk to tell me. That’s really sad. There has been many occasions where we have had full blown arguments whilst he has been drunk. Once when I was at a radiotherapy session, I left him decorating my treatment room. I got home to a very drunk excuse of a man. I had only been gone an hour and half. I was devastated. I went nuts. We didn’t really speak for nearly a year. I felt let down and angry. But I suppose I didn’t really consider how he felt about it all. This is no excuse though...
Les felt that I needed to work on the Soul Forgiveness prayer and picture my dad looking all dressed up and healthy and imagine making up and letting him walk away and having no feelings of anxiety when he left.
I have been doing it for a whole week, really picturing my dad and thought it was going well. I told Les that my dad had rung and left a voicemail again but I hadn’t called back. Old habits die hard I guess. Les suggested I go home and call him immediately and see how I felt.
I didn’t. I forgot actually. But last Friday I looked at my phone at 5pm and thought,’I’m going to call my dad’. I knew he would have been drinking but I didn’t feel worried.
So I called. My dad was thrilled to hear me and was overly excited. He had been drinking and was swearing like a trooper and laughing loudly but I didn’t feel any anxiety. I felt happy to hear him. He told me how his winter had been and asked how treatment was going and told me a few secrets. Bless him. Then he said the nicest things about Peter. That Pete is the best thing that has ever happened to me. (I already knew that but how nice to hear it from your dad!) He said that he couldn’t have wished for a better man to take care of his daughter. We talked for about an hour and arranged for him to visit sometime this summer. (To be honest I told him to bring his tools, I so need some work doing on the house!) He kept saying how pleased he was that I had called and that I had brightened up his day.
I have to say I felt great. I felt at peace. I understand that he must be a troubled soul and how lonely he must feel sometimes. I can’t stop him from being a drinker but I can help myself feel better about him.
I told Les yesterday all about it and he was thrilled for me. I am to continue doing the Soul Forgiveness prayer and maybe other people will pop up that I need to forgive or maybe they need to forgive me. Whichever way you look at it is a great way to make peace with yourself and allow yourself to be free.
I have felt brighter ever since I spoke to my dad. I urge everyone to give a go.
Here is the prayer.
I the soul ask for total forgiveness from any person, any being on all levels for any Pain, suffering and any sorrow that I may have caused you in this life or the past.
I also forgive any person any being on all levels for any pain, suffering and any sorrow that you may have caused me in this life or the Past.
We are all souls, we are all evolving I release you please release me, go in peace,
SO BE IT! SO BE IT! SO BE IT!
Whilst saying the prayer imagine the person dressed nicely and happy and let them turn and walk away and go into the distance. Keep practising until you feel nothing when that person or situation is mentioned.
Light and love... I hope your soul becomes calm and happy.
17. March 2014 17:30
The weekend was unexpectedly great. I knew we had a fun time ahead as our friends were coming to visit but sometimes it’s great to having any expectations and it turning out lovely.
It always surprises me that you never know what tomorrow may bring. The weather was gorgeous and we had plenty of time revelling in our back garden. Friends arrived and cooked us a tasty Chinese meal, then sang round the chiminea until about midnight. (Sorry neighbours!) It was so relaxing and probably one of the most memorable evenings in ages.
I had no particular plans for Sunday. Once our friends left all I thought was that it would be really nice to relax reading in the sun, hang out washing in the fresh air and take it all in. Pete had other plans and off we went to a big DIY store apparently to look at prices. We came home with a power jet wash and got to assembling it and then ‘trying’ it out. Oh my god... it is so satisfying watching each every patio slab and decking plank change from grotty black to bright natural sand and brown colour! Once I started there was no stopping me and by the end of the day I had completed the job. This had been on my list of to-dos for ages and I didn’t really ever expect to achieve especially I had no idea we would buy some decent kit to complete the job.
I felt a natural high and I can’t stop looking outside at the wonderful results... How funny that something so mundane to most seems so exciting to me!
But it all comes down to not knowing what each day brings and keeping an open mind and going with the flow.
I spoke to my friend yesterday who has been to see Professor Stebbing, a triple negative specialist in London. I have been recommended to him over a year ago but never went to see him. I recently felt the urge to get an appointment but hadn’t had any reply. As usual I thought this was just how it is as all other doctors don’t usually reply at any great pace or I get ignored completely.
Spurred on by my friend I made the decision to email him on a Sunday never expecting to get a reply. I did and his PA emailed me too. I have finally got an appointment. Yay!
I felt quite excited by it as I have been told he is very committed and caring. He believes that secondary cancer will be classed as chronic disease within two years. Well I best stay alive another two years at least then!
A delivery of books arrived at the weekend also and I started reading about having a charmed life. It’s a bit like, once you start looking for the positives and the little miracles, they start coming all the time. I guess that kind of happened this weekend in more ways than one. The more you look for them there they are. It has really perked me up and I feel like I am living much more in the present. I am back to feeling like I have drive and less afraid.
However, I still feel a bit unsure about what to do with regards to treatment but in the meantime I am pursuing GcMAF homecare. I have successfully injected myself and today I have used the nebuliser. (Actually feel a little light headed)
But I will proceed with booking for Germany. Saturday morning, the first day of the week that Pete gets a lie in we both strangely wake at 4am. We both got chatting and I felt it was a good time to discuss my worries about what to do treatment wise. We both agree that doing immunotherapy with Doc Nesselhut and then TACE with Prof Vogl is necessary... my reservations are whether I should simply stay here in the UK and have chemo on the NHS. Pete says that we should keep that as a back up and get going with Germany. So I have provisionally booked hotels but not flights yet. I am booked to see Prof Dalgliesh this week and I wonder if he might be able to shed some light, steer me in the right direction or something!
My friend counselled me at the weekend by saying that I should follow my gut. My gut isn’t totally sure at this stage. I think this one will take time to organise but I only have a few weeks. Eek!
All I know is right now at this moment in time I feel good and I have to hang onto these times. I must not take for granted feeling well and symptom free.
14. March 2014 15:56
Today I feel more inspired. I keep reading and hearing that you are what you think and the law of attraction. I know I am focusing on what to do next, when to do it and if I am doing the right thing all mixed up with emotions of fear. It’s scary, you know, knowing that there is something inside you that is growing, spreading and will kill you given half the chance and all the while you feel perfectly well. I find it hard not to panic and think of the next thing to do. I would like to think that’s me being prepared and being one step ahead of the canSer but in other peoples eyes it can look like I don’t believe the treatment I have had is working and isn’t going to work; such as GcMAF. I am not assuming it didn’t work or isn’t going to work. I just think that it’s going to take What to don nmore than that to stop it. So I guess that is me being negative. The reason is that it’s not just a case of reducing the canSer but actually stopping it in its tracks.
My friend had great news this week that from simply using GcMAF and living a very conscious life involving a ketogenic diet, exercise, infrared sauna, supplements and so on, that the canSer has gone from her lungs and the liver meets have stopped growing. She had faith in what she was doing and didn’t run around looking at other options. She let the time pass and trusted in herself.
A HUGE part of me wants to do that. But I thought I was doing everything right before my scan in January then it really pulled the rug from beneath to be told there had been disease progression and the tumours were that much larger and in my lymph nodes again.
So here I am being told by Dr Hembry to do something like visit Professor Vogl.
I have heard a lot about him and read intensely on the work he does. He offers TACE (transarterial percutaneous chemoembolisation), TPCE ( transpulmonary chemoembolisation), TACP ( transarterial chemoperfusion). More information here; http://radiologie-uni-frankfurt.de/content/e4864/e27/e35/index_eng.html
Basically from what I can gather through speaking to people that have had it, it’s a way of getting chemotherapy into the tumours directly therefore not flooding the body systemically with chemicals. It can be used in conjunction with other treatments such as thermal ablation, microwave, LITT and radiotherapy.
I have been informed that I can have an appointment to have this done in the next couple of weeks.
I already have appointments to see Doc Nesselhut for my next round of immunotherapy at the same time and possibly to treat the EBV virus but I was thinking that maybe this could be more important to really get to grips with shrinking the tumours. It wouldn’t be one treatment either. It would be up to four visits. Last night I was sure that this is what I should do. I know I haven’t had anything to stop the canSer since the chemo I have been having has had no or little effect. And knowing that the canSer is very active I feel like I should do something.
But then it comes back to, am I letting this take control of me? Should I be thinking canSer doesn’t define me and therefore slow down a bit and just live and trust the Universe and myself, let GcMAF work for a while and then see. If I have chemotherapy then the GcMAF really won’t work.
I am concerned as I have a CT scan booked at the end of April and would be due to start chemotherapy again. If I wait till then am I really taking a huge risk of the disease getting out of control?
Another thing is that Prof Vogls' treatments will cost (clearly) and I could have free treatment on the NHS providing me with chemotherapy. I am shying away from chemotherapy on the NHS because it means it will attack my whole body, I’ll lose my hair (again) and so on... You know the rest.
I would really love someone else's opinion on this. I hope to see Prof Dalgliesh next week. But anyone can give me their thoughts!? I’m open to suggestions. This is something I really need to consider. Whilst studying this week’s module on the health counselling course I listened to a great lecture by Victoria Moran who talks about creating a charmed life. It was brilliant and funny and she focuses on what you attract into your life. It couldn’t have been more apt really. I completely understand that if you are negative then negative things happen and vice versa. It has inspired me to do more of what I want in my life and try to attract the right things for me. I so want to be happy and carefree. I know, possibly, this won’t happen but I can try.
On a completely separate matter I have been taking naltrexone for over a year and have had it provided in Germany at a cost (again) and found out that it is possible to get here in the UK. What a revelation! I contacted the LDN Research Trust, who asked my details. I sent them proof of my illness and then a doctor called me. He took payment for only £35; this included the consultation and three month supply. This is vastly cheaper than what I have been paying. Now I am waiting for a prescription to arrive and on I go. They advise how to take and when. It’s as simple as that. It’s so nice to finally do something without a hassle. If you are interested here is the website for more information; http://www.ldnresearchtrust.org/
I had a reply from Doc Nesselhut with regards to the immunostat test that worried me as it said the immune system was deactivated. His reply was along the lines of;
‘In this case deactivation of the humoral immunity (TH2) is irrelevant. Deactivation of the suppressor immunity (TH3) is favourable. And deactivation of cell mediated immunity (TH1) is to be expected in cancer patients. Thus, cell mediated immunity is what we aim to enhance with dendritic cell therapy.’
So that’s that then... none the wiser but it sounds ok to me.... I think?!*
I have finished working for the week, have cleaned the fridge (on request of the MD) and think maybe I should try and listen to Mark Newey’s hypnotherapy CD he created for me.
I had a chat with Laura Bond yesterday and she has really been helping me get clarity on a few things in my life (Not making decisions on treatments sadly). She suggested reading a book called, ‘E Squared: Nine Do-It-Yourself Energy Experiments That Prove Your Thoughts Create Your Reality’ by Pam Grout.
So I mentioned to my hubby that I fancied reading it as well as Victoria Moran’s ‘Living a Charmed Life’. He only goes and buys them for me...Yay!
Happy Friday everyone. X