A whirlwind!

Days fly by and before I know it five days have passed since my last journal. I do mean to put pen to paper more often but I get so caught up with life and when away from my desk it’s almost impossible to keep up to date.

There’s quite a lot to tell.

Firstly the fun stuff. Friday I had a lovely evening with my fella in a classy restaurant in London and a night in a funky hotel. We decided having little treats like that kept us interested in our favourite city. We ate at Berners Tavern, I would highly recommend it. It is a beautiful restaurant.

Saturday brunch (yes darling, brunch!) was a real treat too. We met a lovely couple whom we have been in contact with these past few months. Having met by telephone originally we decided it was time to meet in the flesh. It was so lovely to catch up and make new friends.

I may have accidentally fallen into some show shops whilst in London so we made a hasty retreat back home and spent the afternoon in the garden. The weather has been gorgeous.

Bank holiday Monday was a lazy day for many but for Pete and I we got up before sunrise and made our way to Heathrow. We had a quick trip to Duderstadt to visit Doc Nesselhut to have blood tests and blood collection for my next dc therapy there.

It was eventful as usual and it is like the United Nations these days! In the waiting room we met fellow warriors and discussed treatments and options. It’s eye opening and also comforting to know we are on the right tracks… we hope.

I had the opportunity to discuss a treatment plan with Thomas Nesselhut. Pete was being ultra organised and got his MD head on and we made a flow chart, naturally, of the forthcoming months and even years we hope.

We asked Dr Nesselhut about ‘antisense’ which we had been told about by Dr Hembry in February. He looked through my file and noticed that I had shown positive for the Epstein Barr Virus, which Prof Dalgliesh says everyone carries, but Doc said it was active in my cells not just present in my serum. This he said we should treat as it is a very inflammatory disease and causes the liver much stress. Right, ok then. Off we went for more blood taking to be sent to Greece for them to create antisense to treat that. Sometimes everything is a bit of a whirlwind but at least you feel like you are doing something. He also decided it would be good to get a full reading of my bloods and see how the t regs and everything are getting on. So off my blood went to Berlin.

Doc Nesselhut told us that the last vaccine I had was Anti PDL1 and P2X7. I don’t know much about it other than it isn’t something you can have regularly. He has said though that I will be having it again once more… I will be researching first!

We told him that that I am hoping for ablation and he thought it was a great idea. We did discuss sending him samples of my tumour that is currently stored but he said it would be best to get samples of the tumours in my lungs if possible. OK, on my list of things to ask Prof.

We anticipate that we should go back for dc therapy in July a few weeks after ablation to mop up the cells that could be floating around after ablation.  Of course we would have to travel by car as I have been informed i cannot fly after ablation due to the air pressure damaging my lungs.

If for some reason the immunotherapy doesn’t work after ablation we have decided the next step would be TACE with Prof Vogl, then if that fails I go down the chemo route of using the most effective ones found in the RGCC test. If by any chance the lymph nodes clear up then I can opt for laser surgery with Prof Rolle in Germany also.

All along side this I am currently using GcMAF and I think I will be adventurous and try to make the bravo probiotics (well Pete can!)

I may also ask Dr Hembry her thoughts on complimentary infusions. And not forgetting supplements and diet, exercise and so on.

In between appointments, I had a call from the UK. It was Dr Gonsalves from St Georges who will be performing the ablation on me. He said that unfortunately the 12th June was not possible and that now I am booked for the 19th June. OK well at least it is booked but oh my, I am waiting longer all the time. This makes me so anxious and I am so aware of how things can get out of control. I just hope I am beating it off (with a stick!)

In a small way it is quite good it isn’t the 12th June because my birthday is the following weekend. So at least I get to celebrate before having ablation, the last of my thirties!

We have agreed that I should visit him in clinic before the end of this month to get all the details (and costs!) He seems such a nice man. I feel very comfortable with him so far. He just reiterated I must not book any flights for two months after the procedure.

So that’s the plan… Do I feel better? NO! Am I ever happy? Well, yes, but fear is an amazing thing and the way it manifests itself. I am of course happy to know things are going in the right direction but I am so nervous of what is happening inside of me right now.  Gut feeling everything is ok….

After our brief visit to Duderstadt we headed off to a place that Pete hasn’t been to since he was small child with his parents. It was lovely and idyllic and we ate fish for tea…

Home now and running around like a loon trying to get everything done. I don’t know what I would do without Pete. He is amazing and really sorts everything out… Bless him.

 

Disturbing the peace…

I spent quite a few hours on Thursday night trying to get to sleep. It wasn’t jet lag keeping me awake but thinking that if only I could have some good news on Friday. The good news for me would be confirmation of ablation and vaccination trail being booked.

I really tried to put as much energy into thinking the Universe would grant me some positive results.

Friday I even took it a bit further in trying to let the Universe give me good news by calling Dr Grubnic, the specialist radiologist, at St George’s hospital who I am waiting to contact me. It’s the only details I kind find for her. I even called and spoke to her secretary, who I would like to add is another very miserable individual. They don’t know how lucky they are and also who they are dealing with. Where is their compassion? Well that’s another issue… but for now I was met with a dead end. Dr Grubnic’s secretary simply said if it’s a private matter then I will just have to wait for her to contact me. I emailed her hopefully getting my message through and I also emailed her secretary hoping that he would perhaps help me by passing on the message to her. Well so far nothing.

I have emailed, called and left messages with Prof Dalgliesh and his secretary and still nothing…

Blimey if  customers who paid for a service were being made to wait like this I am sure they would be going mad at the lack of support and communications. Oh wait I am paying for it! I have felt really uptight about it. I know it is taking my peace away and I know it will happen but I can’t keep waiting.

I am meant to start vaccinations Thursday coming; surely I should have had confirmation by now? I know it’s not me being difficult and expecting too much.

It’s disturbing my happiness and actually that combined with the thought of my ct scan results you can imagine my insides are a mess. But I am the only one that deals with this. I don’t have to feel this way. It’s if I let it happen.

Thankfully I have heard from Doc Nesselhut, in fact I think their communication issue has been sorted now. I am  booked for bloods and DC therapy. I have booked hotel, flights and car hire. So that’s’ one thing ticked off.

Yesterday I used up my last GcMAF vial by inhaling it with the use of the nebuliser. It is kind of good timing if everything does fall into place with ablation and vaccines.

I have decided that in a few days I will start using naltrexone again and up my dosage to 4.5ml per day.

This weekend has been lovely… as per… I had the best sleep last night and feel completely rested. I have been to the garden centre and done normal housey things… now we are watching all important rugby on TV. It’s the normal things that make me happy. I hope it continues this way…

Phew what a weekend…

Phew a few hectic days…

Friday I had a brilliant acupuncture session with a new therapist recommended by a friend. He did auricular therapy on my ears too which was highly enlightening! It was interesting when he worked on my right side there was a definite resistance but when he placed a row of needles along a corresponding meridian the area was supple and relaxed. Amazing.

I felt great and very chilled after.

BUT then Friday night I awoke with immense pain on the right side of my chest and under my shoulder blade. It got a little worse when I breathed in deeply. I was highly stressed and at 2am awoke Pete who went into calming mode. He said it all sounded muscular and could feel very sensitive. We had tea and put the heat lamp on it. I went back to bed for a few hours before our weekend was upon us.

I was feeling particularly sensitive generally I think. That day I had news that my friend’s canSer had progressed further and it really upset me. I think more so because I haven’t had any conventional treatment and have no idea if GcMAF is working. I didn’t realise I was such a sensitive flower but your mind plays games with you.

Prof Dalgliesh had emailed Friday to say that hopefully by Monday he would know whether I can go on the vaccination trial and that he is still waiting to hear about the ablation date because a theatre needs to be booked for two hours with two surgeons.

I felt really bad about waking Pete up on Friday night as we were both so looking forward to having a lovely lie in since Pete gets up at 5am every morning for the gym before going to work.

During the day on Saturday I took plenty of pain relief to see me through. I felt fine and we had friends visit, so went for a lovely super food salad lunch. In fact it was a day of amazing food as we went to a fine dining Indian restaurant in the evening.

That night I awoke again in immense pain but kept myself calm and tried to stop my mind worrying. At one point I coughed and it felt like a sense of relief. But getting up I felt terrible. Pete said I should call the doctors and get some piece of mind but he still felt it was muscular as I wasn’t having any trouble breathing.

The GP I saw was brilliant and I had my first ever ECG! She felt I should have an x-ray as she couldn’t be sure if I didn’t have a pulmonary embolism.  What?!

We had a quick brekkie with our friends and then spent the rest of the day in Emergency Assessment Unit. After many questions, blood taking and then finally an x-ray it showed that all the pleural spaces are clear, no infection, no collapse and in fact it doesn’t appear that there are any new tumours. In fact it looked like there was almost nothing in my left lung. The right lung you could visibly see tumours in the top and bottom lobe.  Of course a ct scan is better for this but as I have one booked on the 24th April I convinced them to let me go home. They are none the wiser what’s wrong with me but they know what I don’t have. I am relieved as I am going to taking a flight this week and now I know I can relax.

The sun had been shining all day and I felt terrible that poor old Pete had been cooped up with me in doors. Luckily we got back for a few hours of sun and chilling in our blissful garden then got cracking with some work. We mowed and strimmed the lawn washed our cars and made some delicious fresh stew. But we were wrecked. We both had an Epsom salts bath, soaking for twenty minutes then we had to go to bed.

8.30pm and I was sound asleep. I didn’t wake with any pain, although I had taken a 1000mg of pain relief. And this morning it feels much better. To the point where I felt I could do some stretching, yoga and even some cheeky little squats with weights.

I have put on quite some pounds recently, which is good everyone keeps telling me. More of me to fight the disease.

I have felt fine for most of today and have a really busy day working with clients but I now feel drained and my energy is quite shaky. I have a sore throat and feel like I am coming down with something. I know it’s from stress, all bought on by myself. I have been worrying myself senseless.

The next few days I am not working as much and I plan on doing minor chores and getting ready for a trip away. But most of all taking it a bit easy.

I am always surprised with life throws at you and you can never tell what tomorrow may bring.

I kind of think that it was a good thing having this pain in my side and the visit to hospital. I know my lungs are functioning just fine and I feel even more determined that ablation is the correct route for my treatment plan.

On Saturday we had some good news via letter. Prof Harris, my onc, wrote to say he had received a letter from Prof Stebbing who has suggested I have gem/carbo regime and that I would be eligible for two of this trials. Prof Harris wrote that he thought this was a great idea and that we would save Eribulin for the future if needed. Bonus! Prof Harris had turned me down when I asked but now has changed his mind!

So if I do go down the chemo route then at least I am having what I wanted and hopefully no hair loss. I know it’s minor but small things make huge differences.

I just want to send my love to a dear friend who is starting a new regime today… she will feel rubbish apparently but it’s going to work this time!

What to do next?….Live a charmed life….

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

 

Another new experience- hyperbaric oxygen therapy.. and breathe!

Today I did something new. I experienced hyperbaric oxygen as suggested by Patricia Peat. I visited the MS therapy centre near my home and was greeted by some lovely men and women who all suffer with MS. I was a bit nervous as expected. It was a bit strange to say the least. My mask didn’t fit exactly and I didn’t really know what to expect but now I am home and have time to reflect I can say it was actually a painless experience. I sat in a pressurised chamber for an hour whilst breathing oxygen through a mask. I have to admit I did have a few moments of panic but that is me and wanting to control everything. It’s happened ever since I had an MRI scan. When I am told I can’t move or do something for an extended length of time I get all panicky and want to get out there and then but I calmed myself down. I took books with me to read and took the opportunity to catch up for an hour. The problem was I needed the toilet hallway through. Ha ha! I crossed my legs and wished the hour away.

The only sensation I experienced was similar to being in an aeroplane when you take off and land. Your ears pop and you simply have to equalise them. I have rebooked but initially I thought it wasn’t for me.

Despite the view from Prof Harris that it could actually encourage canSer cells to grow because they like the oxygen I have some research from this year that suggests that hyperbaric oxygen is great at combating canSer. Here is a link to the research;

http://www.sciencedaily.com/releases/2012/05/120503194219.htm

 

What is hyperbaric oxygen?

HBOT delivers 100% pure oxygen to you through increased atmospheric pressure in an enclosed chamber. When oxygen is delivered at higher than normal pressure, your body is able to absorb more O2 into your blood cells, blood plasma, cerebral-spinal fluid, and other bodily fluids.

Once in the chamber, your body responds by reducing inflammation. And with reduced inflammation, blood flow increases to oxygen-deprived areas.

Besides reducing inflammation, HBOT also:

  • Saturates your body with oxygen (including the plasma and white cells), increasing your oxygen level by 20-30%
  • Increases your ability to fight infection
  • Creates new capillaries and increases blood flow
  • Clears and deactivates toxins and metabolic waste
  • Stimulates your body to create new blood cells
  • Increases your stem cell production 800% (after 40 treatments)
  • Accelerates your rate of healing

 

What is hyperbaric oxygen therapy used for?

HBOT treatment can help in a number of different situations where body tissues have suffered from a decrease in oxygen levels. These include:

  • decompression illness (‘the bends’)
  • severe carbon monoxide poisoning
  • smoke inhalation
  • chronic wounds and some infections
  • wound healing after reconstructive surgery
  • radiation necrosis (body tissue dying off after radiotherapy treatment)
  • acute blood loss where a blood transfusion is not possible (for example, for Jehovah’s Witnesses)
  • sports injuries
  • diabetic foot ulcers

    What does HBOT do for cancer?

Hyperbaric oxygen tackles two major characteristics of cancer that make it dangerous and likely to spread.

  1. Cancer thrives in a low O2 environment, and hates higher oxygenation. It is well documented that a body low in O2 prevents optimal uptake desired from other treatments, both chemotherapy and natural supplements.
  2. Cancer thrives in an acidic environment, so the more alkaline your system, the more resistance you provide to your cancer cells.

One of the major benefits of hyperbaric oxygen is to reverse the common condition of hypoxia (sometimes called hypoxemia) — or, inadequate oxygenation of the blood — that’s so common among cancer patients.

Breast Cancer

A 2007 animal study found that hyperbaric oxygen helped prevent or reduce breast cancer metastasis to the lung.3

3 Haroon ATMY, Patel M, Al-Mehdi AB. [2007]. Lung Metastatic Load Limitation with Hyperbaric Oxygen. Undersea Hyperbaric Medicine, 34:2, 83-90.

And in general…

HBOT saturates your blood plasma with oxygen, reaching the areas of damage/injury more efficiently than red blood cells. It provides all your cells and tissues with oxygen — your body’s much needed healing agent.

Hyperbaric oxygen increases the number and actual size of blood vessels in your damaged tissues and wounds, allowing you to heal faster.

Cells involved in the healing process are highly dependent on oxygen to heal… and that’s exactly what HOBT supplies, by way of blood that’s hyper-saturated with oxygen.

HBOT has often been used to help cancer patients after a round of radiation therapy. Radiation damages both cancerous cells and healthy ones, and the burst of oxygen helps heal the damaged cells.

A growing number of conventional doctors acknowledge that HBOT is a beneficial adjunct to chemotherapy, as they believe the pressure pushes the drugs deeper into your system… although there are still doctors who insist you shouldn’t do chemo and HBOT at the same time.

 

You may be thinking that it is another cost but it is actually very cheap. As the centre I go to is a charity they only charge £15 for the hour and they are lovely bunch of people. I feel they are going to be my new group of friends! All a bit elderly (some deaf and wearing their clothes in a funny order but nevertheless adorable) I am going to take them some cakes next week.

In order for me to start having HBOT I had to complete forms and send them to my doctor for him to approve first. This for me was actually quite easy as my doctor called me and asked how I was. He is very cool and signed it off for me immediately.

Anyone locally who wants to give HBOT a go here are the details for the centre;

http://www.omstc.org/about/

On a more sombre note, yesterday Pete woke to an email with some very sad news. A couple, whom we had befriended after I appeared in the newspaper, had been contacting us as we exchanged information and advice. The young woman, wife and mother had two very young children and sadly were diagnosed only in February this year with TNBC. By July it had spread to her lungs. She was undergoing chemo and approaching other options with gusto. Sadly she had heart failure that night as the progression of canSer had been very strong in her lymph nodes. We are both hugely saddened at this news and wish her family our deepest condolences at this terrible time.

Scary how things can change….. I stay optimist though that my journey and path is clearing every day and I continue to strive to become stronger and just hope that if I haven’t found a formula yet to kick canSers butt that I will one day very soon (please, thank you!)

Back to Germany for new treatment regime…Gamma delta cells

I’m writing this blog from my hotel room in Duderstadt in Germany. We stayed at Heathrow Saturday night and boarded an early flight yesterday to Hannover. From there we drove to our current location ready for treatment. As the weather has been pretty dreary we decided to settle down for an early night besides we both felt exhausted from being up since about 4am. I had 12 hours sleep last night!!! And even then I feel I could have stayed in my wonderful slumberland for longer.

I have to admit I felt a bit nervous about treatment today. I had been informed that they would be introducing a new addition to my treatment regime in order to really get this canSer in remission- we hope.

As explained before they have introduced Zometa into the regime in order to stimulate the Gamma delta cells inside me. Gamma delta cells are a different type of dendritic cell which have a distinct T cell receptor. It’s hope that this increases their ability in the immune response. We have seen startling evidence of this in the MRI scan of a woman with advanced lung canSer who only had 20% lung capacity remaining who after three months showed no evidence of disease.

Zometa was infused intravenously into my arm at only 2% and it is hoped there would be no side effects as it is such a low dose. As well as this I had an injection subcutaneously of interleukin 2 which helps the gamma delta cells to be stimulated also. This was all in addition to my usual treatment of Newcastle disease virus injection and heat and air treatment. It has been three hours and I feel absolutely fine.

We did discuss whilst there my next visit, including the need for me to have more cells extracted and the fact that Peter would need to be a donor of gamma delta cells. Luckily all he needs to provide is 200ml of blood which will get sent away to be treated and prepared to then be injected into me. Mind boggling eh?

On every visit we notice more visitors from different nationalities. We are so intrigued to know if they are all here to see Dr Nesselhut. The clinic certainly seems busier than normal. Is this a sign that his treatments are working? If nothing else he certainly gives canSer survivors hope and some life extension.

I was asked how many more times do I have to come here for treatments. The simple answer is forever. I am not sure how often it will be whether it will be more infrequent over the next few years or if indeed my condition worsens and I have to come more often but Peter put it perfectly. He said if its forever that’s fine as forever together is almost long enough. Love him. X

What’s going on in my head?

Yesterday I drove early up to the hospital to have my bloods taken in preparation for starting chemo today. With the weather being so nice I drove in my convertible with the top down. It’s only in termperatures like we have been having when you can truly enjoy a convertible.  Having short hair helps as it doesnt get messed up!

It was the quickest visit to hospital ever. The blood test area is governed by a ticketed numbering system. On walking in I got my ticket and before I even sat down my number was called! Yay! Having bloods doesn’t get any easier and I was left with quite a bruised arm. The phlebotomist said sorry so he knew he had done something wrong this time.

I called the oncology ward this morning and after being asked many questions bout my bowels, hands, feet and infections I was given the go ahead to start chemo.

It’s hot, hot, hot today again and I must admit I am looking a bit red faced. I normally have a cheeky hour before clients reading my book before I start to work but today is toooo much!

I’ve been getting more emails from people on facebook who have been in the same situation as me or have relatives recently diagnosed. I hope I can still offer help and encouragement. I have been feeling doubt and fear in my mind the last few days to a week.

I had a chat with Pete this morning. I don’t want to worry him but sometimes I need to sound it out. I get that sudden feeling of, Oh my god… The enormity of the situation and the fear that it could be forever more that I will have to fight this disease. I get scared that it may well win. When I say it out loud it feels silly as I’m in such a good position right now. I don’t want to miss these good healthy times and create something that may never happen. Pete as always sounds it out for me. He said that I am doing everything right and things couldn’t be better than they were a year ago. It’s ok to have moments and some negative thoughts but not to let them take over. It’s also a good time to keep the body guessing, make some changes and really ramp it up a bit. I know he is right. I don’t know why I have been fretting but it crept up on me and starting eating away at my happy thoughts. I really don’t want to think about it. It doesn’t serve any purpose and doesn’t help in the long run. I just get afraid that I will one day find it has spread then if it ever takes over I could be in a hospice on my last few breaths. I don’t want that- clearly. I just feel that it is all so scary. I am fighting for my life. Technically. Every day is a challenge and having no idea what is going on inside me really. I need to tap into my intuition and start listening to the real me and not my worrying head. Meditation really helps and when I think of all I am doing I realise how much control I have over my life, without having control… if that makes sense!

Yes well.. Like I say saying it out loud seems ridiculous. I know what I must do and how I should be thinking but I wonder sometimes if I want to create drama as there is something missing. I haven’t had any major urge to know what the future holds for a while now which is a breakthrough for me. I’ve been enjoying life. I guess that I sometimes feel sad because everyone else assumes they have ‘the rest of their lives’ to do things and this saying means many, many years to come. I know none of us know how long we have but it’s hard being told that you have an incurable disease and that it is life limiting and to eradicate that wording.

Peter and I heard the other day that one of his friends wife, who we used to see at the hospital, was suffering from leukemia after having quite a turbulent time, has been told, after having blood tests, that there is no sign of disease… Miracles do happen! I want that. I want to be told when I go for my next scan that there is ‘no evidence of disease’. I’m not sure if I will ever believe it but I really have to shake this lingering disease off. It doesn’t serve me in any way. I don’t need it. It’s amazing how the doctor’s words get stuck in my head. If only they would say it could be cured and then the day I am told there is no sign of it that I would believe it. I just need to get that gumption in my tummy to say to every cell in my body ‘I will be cured, I am canSer free’. I do need to re centre myself and really get to grips with my inner self. I must believe that I am safe and I am well.  I want to be free…..

Right I need to remember the saying; Abandon Stinkin’ Thinkin’!

Finding it hard getting into the flow of things…..

Yesterday I was bought back to reality with a bump by going to the hospital for my clinic appointment. This is to see how I have been doing on the new chemo drugs I hvae started on in December. I wondered whether after my experience with Professor Harris and the email I sent makig an unofficial complaint whether I would actually see him again. For the record I still haven’t had a reply to that email although I do know that he has drafted a reply. His secretary has informed me that it is now being checked over by senior staff! Over a onth has passed but hey ho.. I don’t feel like dragging it up and harbouring neggy feelings. I felt pretty calm about it all. I would normally getted quite worked up as I don’t really like confrontation (despite me being somewhat fiery!) and playing things through my mind often makes things worse than they will be. However I suprised and a tad relieved to meet a new doctor. Dr Chitnis was lovely. She communicated well and despite me saying I felt well she asked if she could ask specific questions and noted them down. She seemed ‘normal’. 🙂 We have agreed that a scan will be done hopefully in two weeks to see if this chemo is working at all and then if it isn’t they will add another chemo, Taxol or Carboplatin which is administered intravenously. Dr Chitnis said I am too young not to have it.

I am not going to moan but the same thing happened at the pharmacy waiting for my drugs. They didn’t have the presribtion despite the script being prepared on the 1st January. The pharmacy staff say that it happens all the time. Well surely then something needs to change? I sat for over an hour waiting for it but I did eventually get them so..

As the day wore on I felt very tired and had to admit that jet lag was making me feel so pooped. By the time Pete got home we were bushed and tucked up in bed by 9.30pm!

I thought a lot about ‘therapy’ today. I love my job when I do it and when we were away having massage it rekindled my love for it and made me want to really get stuck in with massage again. I liked the way the thai people work so closely and intimately with the clients. They rest the limb on them and maintain contact the whole time. It gives for a really soothing experience and one that I am going to adopt once I get back into work fully. Sadly massage and treatments alike have been put on the back burner till I really feel I can exchange energy.

I have today been compiling photos of our Thai experience,all the while my kitty has been sat behind me on my office chair. Sweet. It reminded me that when we were sunbathing, a little black kitten kept sitting underneath my sunbed. It happened on a few occasions and we chuckled at the fact the little one had replaced my kitty who follows me around like a lost…. kitty! The importance of the cat in sunbathing! Ha ha!

Yesterday I noticed a post on Zest magazines facebook asking people to email their life mantras into them. So it got me thinking and I sent this;

‘Incurable isn’t a declaration it’s a dare’
Life isn’t what we thought it would be- it’s better. Make the most of every living moment, don’t put things off till tomorrow as now is the most important moment. Trust and listen to your heart. And most importantly love- Be loving, lovable and loved.

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Today we woke really early again but did try to drift back to sleep. We love our bed so much there is no way I would get out too early. I was all excited about spring cleaning! I know very sad. But I thought of all the things we have in cupbaords and thought a  good ol’ clear out is in order. I did my morning rituals, which were not flowing. I am finding it hard getting back into the swing of things and then my mood really slumped. It could be the chemo or tiredness but I lost my mojo for a bit. I became discomknocerated (great word right!?) I started exercising today and have got Davina McCalls new dvd. Grrrr… not enjoying it but has to be done. Tomorrow will be better. I love Davina. She is so funny so not only do I get a work out I get a good laugh too. Anyways needless to say the clearing out hasn’t begun and my zestyness is nowhere to be seen…

Then I got a call from Pete. Christy, the lovely lady that spoke to me about dendritic cell therapy back in July had been suffering with ovarian canSer and was given a year to live over a year ago! She used to give me advice and  I’d text her to off load my frustrations and her replies have always been so positive. She also suffered with multiple sclerosis. In the last 8 months she has felt better than ever and the good news was the dendritic cell therapy was working as the ovarian tumour hasn’t grown although a small one in lymph had. She recently had pneumonia but still seemed very happy and was on meds. Sadly she died on Monday. I don’t know the full story and I don’t know if it was the pneumonia or canSer or what, but I feel numb. I never met her, yet she spared so much time for me, guiding me and supporting me. My thoughts go out to her husband and daughters and I hope she is at peace.

I have to be honest I am a little panicked. If it was canSer that did it then am I on the wrong tracks with dendritic cell therapy? My gut feeling is no. I know that I have incorporated so many other factors to combat this disease but it got me thinking. Christy really believed the day she heard about DC therapy was like fate. That’s how I feel. Yet the outcome wasn’t one that she wanted. What if I am kidding myself into believing that I can be cured of canSer? But then what other option do I have? If I don’t try then noone will ever know what works. One day it will work then the path of canSer treatment will change forever. How many people have cured themselves but haven’t told anyone or the doctors haven’t asked and they just put it down to luck? Because they didn’t administer the treatment and the patient goes into remission forever (now for me that is being cured) the doctors don’t think it’s worth looking into. I’m rambling but this is how my head is.

Christy used to say it was the mental anguish that really got her at night. For me it’s the confusion. I don’t know how I am meant to feel and I don’t know what is going to happen yet I am meant to and want to live my life to the max but as normal as possible. The thought of getting ill scares me and to be quite frank seems so very unlikely as I feel so great now but it’s that thing of you never know what tomorrow brings! Part of me wishes I could be brain washed and that I could live my life not knowing. I would worry about normal stuff then- what to wear on Saturday night, what colour to paint my kitchen, where to go on holiday next… but then I think again and think how so very lucky I am to know that life is precious. I just want this all to be over and to live canSer free but that is never going to happen because even when I do recover fully I still will think about it every day and help others. Part of me longs not to have to have hospital appointments but I know that will always have to go to the hospital and that really it is a silly thing to moan about. If only life could be different. Life is so yin and yang, up and down. I find so many positives in everything that occurs and my outlook on life yet I sometimes long to be the girl that had no cares in the world. I must be tired. I only ever feel wobbly when I am tired. Plus I am missing my Bear.

I’m going to have a green tea and focus on something else. I wish for happiness to Christy and her soul and thank her for being such a wonderful selfless person. God bless. XX