Off again…

I haven’t been ignoring you but I have been having fun… again. Even amidst all the drama we have plans and I aim to keep hold of those for as long as I can.

Pete and I had planned to visit friends in Ireland this weekend and the booking had been in place for months. I was worried that things would clash but even if they did i would’ve moved them in order to visit our dear friends.

Pete and I had a long weekend in Cork and were treated like royalty. We laughed, danced, ate (a lot) and drank…Each day was different and on Sunday we drove to the beautiful Inchydoney beach and stayed at the beautiful spa there. Oh it was blissful. Yesterday we flew home and as ever reluctantly said goodbye to our wonderful friends.

Friday morning whilst at the airport over breakfast Pete and I got chatting about what to do next. I had already been in contact with Professor Vogl in Frankfurt regarding having TACE. It had been pencilled in for Wednesday 15th, tomorrow. I wanted Pete to email as he is German and to tell him it wouldn’t be feasible because of timings etc, but having spoken to my friends last week and also because I am acutely aware that I really need to get some treatment started Pete said we must go.

He checked with his work diary and made so many changes and that was it I started booking the Eurotunnel and hotels. Emails exchanged between Pete and Prof Vogl and we have agreed that I will be there tomorrow morning at 7am to see him and have treatment that same day.

Right… it’s all a whirlwind and whilst I have an hour before we leave I decided to update the blog.

I feel really weird right now. I have been contacting many clinics and having many email exchanges and I believe that whilst I can I should. The worry of logistics and money are always there and the upset this is causing Pete really worries me. I wish it was different but I have to try. Things will fall into place.

So this is how it stands. Today we leave and drive to Frankfurt. Tomorrow morning I have TACE then we drive to Belgium for an overnight before driving back to the Eurotunnel to get back to the UK.

 

Friday I have booked to see Dr Julian Kenyon on the referral of Dr Nesselhut to discuss Photodynamic therapy. We have heard a lot about and my pal Peter Trayhurn had good results in his lungs with this treatment. I think it is definitely worth a consultation. Julian actually said to get an appointment for Friday, on his day off to get this sorted. I called this morning and have booked for 11am in Twyford.

Next Monday I have an appointment at the Churchill hospital to have glomerular filtration rate which is apparently to see the functioning of my kidneys. Eh? I contacted the secretaries at the hospital who told me this in preparation for having the carboplatin chemo on the NHS. OK right. Well I will go for that even if I won’t be starting that imminently. I am booked and have signed the consent for carboplatin and gemcetibine chemo but I may postpone for a few weeks.

At the beginning of November I have DC therapy booked at Doc Nesselhuts and may also squeeze in more TACE with Prof Vogl AND even have insulin potentiation therapy with Dr Seibenhuner. I have emailed Dr Seibenhuners clinic to find out more but as yet haven’t had a reply.

After that I may decide to go for NHS chemo. I think it could be a good way to go for a short while…

Next Wednesday i am booked for the immunotherapy vaccine at the London Clinic and think it could be good to still give that a go.. Another hole in my arm but what the heck. On that same day I am also booked at another clinic in London to have a discussion about having Mebendazole prescribed.

It all sounds mad but maybe this combination could be good.

I am still waiting for a reply from St Barts but just now had an email from the secretary at the Churchill hospital who says she had a contact at the gamma knife department at St Barts who says they will be in contact soon. Not soon enough for my liking… get these buggers out of my head!

I feel actually a lot better in many ways but worse in others. Over the weekend my cough was annoying to say the least but then it turned into an actual infection on Sunday night. I actually feel better coughing up phlegm than I do just having a dry cough.

I feel less sketchy than in my head. I definitely felt like I had cognitive difficulties the week before but now I have clarity and can think of what I want to say. I am a little dazed with the steroids I take but I am managing them well. I will soon change the dose again as suggested by Dr Oliveros.

So that’s where we are. By the end of this week Pete and I will need to catch up on Strictly Come Dancing and The X factor and hopefully normality will resume… sort of. For Pete this is a nightmare. We are creatures of habit and nothing feels right. All we have is each other but with me having symptoms and feeling constantly emotional it is the hardest thing for him to deal.

Tempers flare and emotions pour… I find it hard not feel guilty and wish that every day could be different. I can’t and I refuse now to try to change that. I have to do this and try. I can still be canSer free and I just want to prove that.

 

I have taken the big job of contacting all my current clients that are booked in my diary and have told them honestly that i will not be working. My job is to get better and when I get more time at home I will return to exercise and more meditation. I long to feel well and eat better and live cleanly. I am not moaning about the food I have been eating recently. I feel nourished and actually have a huge appetite which I think is great. I put on 3 pounds over the weekend and I don’t care!

I have tried to balance my diet this morning by having a veggie smoothie, an alkalising lemon drink and bravo probiotics yoghurt with fruits. A good start I think!

My bags are packed and my kitty is being cared for by wonderful friend Sarah once again. I don’t know what I would do without her. Hopefully everything will go smoothly over the next few days…It’s going to be an experience that’s for sure…

I’ll keep everyone updated.

Light and Love. XX

Worrying about what may or may not happen….

The last few days at home have been great. Back to work and the usual routine as well as working too.

But throughout it all I still have the dreaded scan results lurking in the background. I always get like this before hand. It looms and lingers like a bad smell. I am so confident leading up to this point and then all the self doubt comes in. I am now worrying that I could have been better with my diet and drinking habits. I have been a little more relaxed recently, what with seeing friends and being in social situations I have been having more sweets and breads than I normally would along with drinking alcohol. I actually would say that I have been a bit lazy with my diet. In the back of my mind I keep thinking the 80/20 rule but I know that sugars should be avoided at all costs and alcohol has to be limited.  Damn you alcohol! I love drinking. I love socialising and the two for me go together.

I went on the Drinkaware website (www.drinkaware.co.uk)last night and thought I would start recording how much I have to drink. This week wasn’t the best one to start on as I have spent the last few days in Rome. When I am away I always have ‘fun’ and that for me includes a drink. So not only does it tell you if you have had more than the daily allowance but it also tells you the calories. It is a very useful site. I think I am going to keep charting my intake as it really does make you aware. I think I will consider more how often I drink. That makes this evening a little harder as I am meeting friends in a bar then going for dinner tonight.

I hate the fact that alcohol exists sometimes. I’m not sure if I drink too much realistically as I drink some weeks and not others. On the whole I am not to drink during the school nights. The whole thing about canSer and alcohol really bothers me. I have said it before and I will continue to say it until I get definite answers from professional. They say that it is fine to drink with triple negative but then on the other side of the coin they say every now and then etc… I look at all my friends and none of them are concerned about how much they drink. Some drink more some drink less but on the whole I reckon we are about the same.  Well from now on I think charting my drinking habits will really make me more conscious of my habits. I want to eat and drink better. I want to live, not die. That’s all there is for it.

For the first time this morning I got worried about dying again. I know it’s because the reality is that on Tuesday everything could change again. My life could be turned upside down. I have been feeling really great and really happy but who knows what it is going on inside me? I won’t settle for less. I want the cure; I want to live canSer free. And if I can’t be canSer free then I want to live a healthy symptom free life. This is possible… Sometimes it’s so overwhelming constantly having to be ‘good’. I want to be ‘good’ so in a way it keeps me on the straight and narrow. I don’t want to be where I was a year ago. I was in the depths of despair and really didn’t understand life. I want to keep on striving and being happy. But today for some reason desire having reflexology to look forward to this afternoon I feel a little bit lost. I bet I am tired. It’s always tiredness. I have exercised this morning. I find that I can sometimes get a slump about now. I simply find it hard to believe that I am tired. I don’t go to work like Pete does. He work such long hours then goes and looks after ray and then comes home all bouncy and loving. He will then do the mowing and any other little Bear jobs and continues with this every day! He is tired. He has every right to be but me. I don’t do much other house jobs and a bit of therapy and of course my morning rituals. I wonder sometimes if I am better when I have a lot to do. Having time on my hands can sometimes make me lost. Well enough of that… time to wake up and get with the program.

I think I need to focus on something new. I think meditation needs working on and that can help with healing. I am going to read my book then perhaps find some more techniques and further explore mediation. Yes. That’s it.

 

I have decided no matter what my results are I am going to start taking clients properly in advance. I contacted all my clients and have told them that I am ready. I have since had many emails and phone calls and May and June are booking up nicely. J

Right time to snap out of my dwelling on what may or may not happen. We all know it’s a waste of energy and time. The only time to focus on is now and that’s what really matters. Do the best you can do at the time given to you. I most certainly will… off to do chores and then relax for an hour!

Back from my reflexology… and oh how relaxing! I fell asleep. Claire, my therapist, said that my feet showed that I am tired (this was before I fell asleep! Ha ha!) She did a lot of lymphatic drainage and says she still can’t feel anything in my lung area. If there is anything there then it is very small.

I feel much better and more human now. Ahhhhhhh…….