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A wonderful surprise to start off the week...

by Claire30. June 2014 12:11

Last week was supposed to be a week of chilling out. Under orders from Pete who cleverly suggested that avoiding close contact with lots of clients would be beneficial straight after surgery. I felt initially like I should work as I felt well enough but then I actually felt rubbish all week. Typically. 

I couldn't put my finger on it. I felt incredibly teary, maybe from hormones. I ached where I hit my head and my arm/ vaccination site was causing me issues at night too. I started the interleukin two injections Wednesday, Thursday and Friday and as Prof D informed me I did feel quite fluey at night. This didn't help sleep either. I just felt pretty miserable and off beat. 

I kept myself busy instead of sitting around which wasn't what I was supposed to do but it meant I could get things done and visit people that I don't normally get a chance to. In that respect last week was great.

But then I visited Ray, the old man that we have taken care of for too many years! You might remember me mentioning him. He has moved to a lovely, care home where he will never be lonely, without food or a doctor near by should he need it. Peter has been brilliant in visiting him regularly and unsurprisingly Ray is unhappy with his new home. It would be too much to ask for him to be grateful or happy.

Trying to help Pete last Friday I offered to pop in to see him. Pete was maxed at work and I wanted to do something to help the load at least. Well, I skipped into the lovely residence only to be met by Rays locked door and told to bugger off! How nice. He didn't realise it was me but when he did he seemed really happy to see me. It felt good and I was pleased I had made him smile. But this lasted about ten seconds. He realised he had an audience and proceeded to moan, make up stories and slate me and Pete for about an hour. Now I know old people can be that way but I don't think is any excuse for that behaviour. Reluctantly I told him I had to leave when he was pointing his finger at me telling me people don't like me. What can you do eh? I left feeling violated as I had sat there trying not to comment or defend myself. I was red and flustered and poor Pete felt terrible when I told him.

I got home and had some more tears... It must be hormones! It was ok though because soon I had a big cuddle inbound from the Bear. The weekend was chilled as we visited Pete's sister and then yesterday did some gardening. I felt really happy and could feel the cloud lifting.

We have tried to work out what people like Ray are trying to teach us and why they are still in our life. We have come to the conclusion that you can't please everybody no matter what lengths you go to.Then I saw this article this morning;

http://www.mindbodygreen.com/0-6934/Are-We-Meant-to-Meet-the-People-We-Meet.html

 

Today I am back to work. I have four new clients and I will be working into the evening. I feel better in myself and I am looking forward to working.

I had a great start to the day when I opened my front door to find a bunch of beautiful flowers and a card from client. She said that after wallowing in self pity all weekend she thought of me and that inspired her to pick herself up and get on with things. I am glad I helped give her a kick up the bum. Sometimes it's ok to wallow but moving on and getting on with things is the way forward.

The interleukin 2 injections have left quite itchy raised lumps in the injection sites on my tummy. This is a good sign that the immunity is responding. I so hope that it is being reflected inside. My next ct scan is booked for the end of July, so I will find out then.

Right, off I go to get started on lots of pairs of eyebrows! 

Light and love!

X

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Triple Negative

The scab and goop stuck to my bed... Gross!

by Claire25. June 2014 16:59

Didn't really sleep last night mainly due to worrying about waking up early this morning. Why do we do that to ourselves? I got on the road to Tooting ultra early mainly because I know how long it took Pete to get there last week when he was visiting me.

I arrived by 8am and my appointment wasn't until 10am. I guessed ghee time would fly catching up with Pete on the phone and having a cuppa at the cafe.

I checked into reception at 9.30am. It seemed like quite a small oncology department but was clean and new. I was greeted by a lovely nurse who seemed to know all the patients and was rushing around ensuring that the Prof had everything he needed. I was quite impressed. It's very interesting seeing how different hospitals operate.

I was seen about half hour late but this isn't anything compared to the Churchill in Oxford which has delays of up to two or three hours sometimes.

Prof Dalgleish asked how I was doing and discussed the vaccine site on my arm. It has been a week since I had it done and now it was hugely open and pusy. Last night I must have slept on it when it had a scab and was like a volcano. When I woke this morning all the scab and goop inside was stuck to my bed.. Gross. The volcano lump has gone and now I am left with a gaping hole like before. It's really sore and I aim to keep it dry and untouched.

Prof explained about the injections I was there to pick up and start administering. He has provided me with three syringes containing interleukin 2. I have had this many a time at Dr Nesselhuts. The syringes contain a tiny amount and I am to inject myself in the tummy every night for three nights. I may experience flu like symptoms but they will pass very quickly like a light switch. I have never experienced flu like symptoms before but you never know? He also told me that the vaccination sites on my arm may be deactivated and become very pusy again. Oh well that's the way it goes.. But he said that is great because it shows my immunity is really active. 

He said he doesn't really know what's going to happen. This is a trial of sorts and he mainly deals with melanoma. So we just have to wait and see. I told him that I have a scan booked for the end of July so it will good to see what is going on since the ablation and all of the immunotherapy. 

The idea is that the il2 stimulates my own natural killer cells. So that will enhance the ablation and the IMM101 vaccinations. 

He told me that he had a melanoma patient who had some lesions ablated and that the imm101 and il2 combined made the other lesions in his body die. I am not sure if he has more than one success but here's hoping so. He says he knows this works well in lung canSer patients too.

I don't mind being a guinea pig. I have been for two years I just had it combined with conventional treatments too. But from what I know so far from my last scan is that having just these treatments the canSer isn't progressing hugely and in fact some of the tumours were actually declining. 

I left with an ice box containing the injections and set off on my way home. There was plenty of traffic because of the Wimbledon tennis tournament. Oh how I would like to be there watching a game.

It took me what felt like ages to get back. I felt pooped when I got in so I grabbed a blanket and sat in the back garden doing some homework. 

This is where I am typing this blog from. It's nice, clouds to break up the heat and a slight breeze.

I am making my second batch of Bravo Probiotic yoghurt or in the process of it. I started it yesterday and it is currently fermenting. I have run out of the last batch and I am getting used to its funky taste. My kitty loves the stuff. She has been licking my bowl clean every day. Pete has even tried it and says he doesn't think it even needs sweetening of any kind. I definitely think it must be doing some good. I like to think my gut health and immunity are loving it.

I'm going to make some guacamole and a large mackerel salad for our tea then I'm not watching any football! I am putting my foot down! Ha ha! Oh who am I kidding.. I can't say no to the Bear.. I'm going to have an early night.

Night all. X

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Triple Negative

Thank you Universe....

by Claire23. June 2014 16:19

 I was discharged from hospital Friday evening! Yay! I was delighted to be going home as I just couldn't relax there. The food just doesn't heal and nourish one and the noise is so great that unless you are completely exhausted no one is ever going to sleep.
But that doesn't matter any more. I got home, unpacked and straight into my pj's. My bed was calling me. But first a green tea.. Ahh..


I slept really well, my first night of many to come I hope!
I have felt absolutely fine but to avoid getting I'll have to be careful therefore I have cancelled all my clients for this week. However this has just freed me to do more chores and other bits and bobs. I never was much good at simply lying around. Although I did achieve that yesterday.


Saturday was really fun. I celebrated my birthday again with some of my closest friends. The weather was scorching and we all lounged around in our back garden drinking and chatting. It was as if I had not even been in hospital at all.

                                             


I am very pleased actually that the entry wounds for the ablation are really tiny. There was no need for stitches and the bruising is minimal and doesn't hurt that much. They can't be seen either as they are within my bra area. I simply cannot believe that I can breathe so easily either. It hasn't affected that and I have no sensations in there at all. That has to be good.
 
Back to Saturday. Pete was ever the host and made tasty food and cocktails for us all whilst we listened and danced to music. You know, nothing stops me from having a little shimmy!

                                                            

 By 10pm the sun was starting to go down. With it being the Summer Solstice and the longest day we wanted to make the most of it but to be honest I was pooped. I slipped off to bed then I think one by one so did everyone else. Pete was the last in.

 
Sunday we all had breakfast, made by Pete yet again, and then our guests left. We had a day of nothing planned. We cleaned the house, stripped beds and got washing on then once all that was done we just chilled out. It was bliss. Sometimes they are my most favourite days.
Pete was overflowing with love and cuddled me all day. For me that is bliss. Bless him. He really is a teddy bear.
 

                                                     

Today is the first day of my week off and I have been quite busy actually. I had lots of emails to send and have contacted Prof Harris giving him an update on my surgery and asked for a ct scan of my chest, abdomen and pelvis for the end of July, just before I am due to catch up with him. That will be three months since my last one.
I emailed Dr Nesselhut to ensure that upon my next visit the EBV virus vaccine is there. That's the whole point of going really. No reply as yet but I am sure I will get one in due course.
I also emailed Dr Gonsalves, who performed the ablation. I had woken up on Thursday night filled with gratitude for what he had done, how wonderful the staff were all despite the horrible situation getting in the hospital. I want him to pass on my regards to all of the staff and to know that it was highly appreciated.

 I emailed Professor Dalgliesh to reiterate where I am meant to see him this week. Apparently it will the oncology outpatients at St George's where he will be providing me with interleukin 2 injections to start doing at home. Exciting.. The next phase


All in all things are pretty organised and I am really looking forward to my week ahead.
Yesterday was made better by our  wonderful friends bringing their new bundle of joy into the world...just lovely. I can't wait to meet him and give mummy a cuddle.
 

With all the gratitude flying around I have been meaning to create a gratitude jar. I bought some pretty coloured paper, cut it into small sizes and have prepared myself for the next year to jot down any grateful thought I have. On my 40th birthday next year I will read them with Pete and realise just what a wonderful life we have. I know this already but I think it could be really heart warming and such a lovely reminder for the great and wonderful things that happen around us.

                                                 

Right now.. I'm off for a cuppa and to try and relax...
It would have been better had I not just cracked my head on a cupboard door. That's the Universe reminding me I'm alive.

Thank you and noted....

 

 XX

 

 

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Triple Negative

Who IS Maria?

by Claire20. June 2014 10:03

I spent most of yesterday feeling dread and sick to the stomach. My mind was running away with me and I couldn't calm myself down. Bear called me from the car and told me that everything was going to be ok that it is unlikely the canSer has spread because I feel so well.

I felt delirious due to lack of sleep so by the time they came to take me to ct by wheelchair I could fall asleep sitting up.

I waited an hour for a ct and one by one the staff that would be assisting came and introduced themselves. Two nurses, about three radiologists, two anaesthetists, the doc who would be performing the procedure plus his supporting staff.. It was like a party. They all got together for a group hug and discussed me whilst I lay there on the bed waiting for the preliminary ct scan. It was very surreal.

The lovely anaesthetist came and said we would start by giving me something to relax... It was the best I felt all day. I felt really happy and so chilled.. Thank goodness. I was petrified before.  Then she said it was time for my 'gin and tonic'. She blasted me with the good stuff and I was given oxygen to breathe deeply.  That's all I could remember until I woke to hearing Dr Gonsalves voice in the recovery room telling me that everything went really well and that I didn't get a pneumothorax! Yay! No chest drain and that means I can go home today!

I felt really woosy for about four or five hours and when transferred to the ward I didn't have any pain and moved myself from the trolley to my own bed myself.

I had ablation done in two places and the entry nicks are placed one on my chest and two on my back.

I was on the ward for about ten minutes when my Bear arrived. Thank goodness. He went hunting and gathering because yet again I had missed dinner. He returned with plenty of food and despite not really wanting it I ate the lot!

The England football match kept me occupied for the evening and despite the disappointing result I was in quite high spirits.

I so wanted to have a good nights sleep but sadly this was not to happen. I got about three hours before the two old ladies next to and across from me starting calling out, banging tables, trying to get out of bed and shouting for Maria.. Who is Maria?

I have to laugh or else I'd cry but the highlight of my night was the lady next to me asked if she was here because she had murdered someone?! She said this was not the first time she had been kidnapped. Pahaha.

I did drop off again but then the nurses decided to wake me up....urgh.

Thankfully I didn't experience any pain during the night and I had a shower to clean the pen marks and blood off me.

On my return the doctor arrived and said I could remove the plasters as the nicks are really tiny and will heal much better being uncovered. 

He enthused as to how well it went. He said the top tumour really got it. They could really ablate that one. The one lower down at the back was very close to the lung wall and he didn't want to blast that one as much because burning the lung wall really hurts and causes more infection. 

I am booked for a ct scan this morning to see how things are in there as they can't really tell whilst doing the procedure. All being well, and it's highly likely then I can go home today! Whoop!

I told him that Pete is at an event in London all day so it would be much later that I will be picked up. He said in that case in between his appointment today he will aim to come up and tell me the results rather than email them to me.

Ordinarily they would do follow up ct scans but as this is being led by Prof Dalgliesh he asked what happens next? I said I have no idea but I guess I will email the prof and go from there.

To be honest I think it is up to me what happens next. I want more of the tumours ablated! Let's blast the little buggers... Hopefully the immunotherapy jabs will now mop up the rest of the tumours and the immune response will be great.

So that's that... I'm nearly at the end of this little episode and I can't wait to get home.

Although feeling generally well I think I could sleep for a week. Being ever the optimist I have booked my week full of clients. Pete said I'm mad and that right now I need to ensure I don't get any infections. Being in close contact with lots of people isn't wise. You know what? I think he is right -again. I could really do with some down time. It's surprising how stress full all of this is on the body and soul.

I can't wait to go home though because I am seeing my lovely beasties for a belated birthday get together. And before anyone curses me and thinks its a bad idea, I think it will do me the world of good. I need laughs and love for the soul. I don't have to overdo it. I can sit back and take it all in. The banter, the fun and of course the love.

Fingers crossed I get out of here today.

Xx

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Triple Negative

What? My procedure will be cancelled if there aren't any beds available?!

by Claire19. June 2014 08:43

I was asked to call St Georges hospital first thing yesterday morning, the day before my ablation procedure to see when they wanted me to attend in preparation. As I said before I was reluctant to attend the night before if I didn't have to. What I wasn't prepared for was being told on the phone that weren't any beds available and to call back later. I asked what if there aren't any beds later? They said the procedure would be cancelled. WHAT?  Oh my goodness. I felt sick. I said it can't be cancelled I have been waiting for this for months and my life depends on it. That might sound extreme but it's true. 

I was asked to call back an hour and half later and when I did I was transferred to the junior consultant who reassured me and said don't worry I will ensure you get a bed. I told her I was going to have my vaccination injection at the London Clinic that afternoon. She said to go straight from there to St George's in Tooting.

Gulp. I kind of thought they would say that. I knew that if I didn't go I wouldn't get a bed. So I rearranged my travel arrangements slightly and quickly packed a bag for staying overnight at hospital. I caught a taxi to the train station and hopped on a train London bound.

Pete reassured me and said that he would drive down later with my bag, save me carrying it. Perfect.

I felt very floopy and unsettled. The fact that the bed wasn't a certainty made me feel sick. For a short while I thought oh dear god, what am I going to do if it's cancelled? Then I thought... No. I will be having the procedure. They will have to throw me out of hospital. Grrrr.

I got to the London Clinic in quick time and the service there was impeccable. Well you would expect it to be for the charges incurred. The doctor was happy with the state of my current vaccination sites, which have healed up really well in the last week. They decided that I should have half the dose than before and that it will now be done monthly. 

Almost within half hour the site which is about an inch from the other two had already affected them. A hard lump has come up right next to the second site. Very strange but curious. It's currently very hot and itchy.

 

I got to St George's, the Oncology ward and it was complete bedlam. The Churchill in Oxford is busy but this place was, well awful. Mess everywhere. The toilets in a right state and I was told as expected that there was no bed available and that I was to wait. In the mean time they would take bloods.

I sat and waited for a few hours and then asked if I could venture outside and sit in the fresh air. It was so hot and stuffy I felt like I was being infected with everyone else's germs.

Off I went and waited for Pete to arrive. The problem was the traffic was terrible and it took him two and half hours... Poor boy. By that time it was 7pm and I was back in the ward which had now quietened down. I was told by the very flustered junior consultant that they were going to try and free up a bay which was currently being occupied by men, which needed to be cleaned. They decided that it would be better for me to be on that ward in case there were difficulties after the procedure. Ok, I thought that sounds great.

All during that time, I had been contacting Prof D, Dr Gonsalves and anyone else that would listen. I figured I'd get on their cases to ensure they got me a bed! I had a few replies and they all said they were sorry but there was no private wing at St George's and that unfortunately that is how it is at this hospital.

By 7.30pm Pete arrived and we were told to go out for a while. I had a plan. Let's go off site and have a tasty dinner. I had seen a great little bistro on my way to the hospital. We weren't disappointed. We ate more than enough. I figured if I was to be nil by mouth from this morning I may as fill myself up now!

We got back to the hospital ward at 9.30pm and were told that they hadn't moved the men from their ward and that I was to go where there was a bed available- across the hospital in another ward.

A nurse took us on a ten minute walk and we arrived at the Amyland ward. A ward for geriatrics, people with Alzheimer's and rheumatoid arthritis. My heart sank when we walked in. The hospital is old and the lady opposite was clearly not with it and was crying and asking the nurse where she was over and over again.

 

I unpacked and got settled in and walked Pete to the door at the end of the ward... I so wanted to go home. I was told to try and sleep but that was never going to happen. Not because I was worried but because of the old lady across from me. She called out for Ivy, Edna, Maria and anyone else she could think of. She asked for forgiveness, the need for a poo and so much more. The whole bay was kept awake all night. Seriously I wish they would give her something to sedate her. Bless her. It just made me think, I don't want to get that old! Which is ironic since I am doing my best to stay alive for many decades to come! So weird. I kept thinking what is this trying to teach me? I came up with nothing.

 

At 5.20am I decided I would have a shower and eat something before I was told be nil by mouth. The nurses here are lovely and I have since had an ECG and have a catheter fitted with IV fluids on a drip. The procedure is due this afternoon.

That's the only details I have.

I am seriously missing Prof Harris and the Churchill hospital right now. That hospital rocks compared to this. It's chaos here. I will forgive everything providing the ablation goes to plan.

 I just hope I can go home quickly. I will never heal here. I won't get sleep, I feel like I will catch every bug under the sun, especially when I am greeted by sick and faeces in the toilets on my very first visit to the loo... 

 

Pete has been amazing as always and has insisted he will be here when I wake up. It's such a gruelling car journey. It's not necessarily far it's just horrible on those particular roads.

 

So here I am sitting on my bed, feeling very spaced out due to no sleep and a little bit anxious. I hope it doesn't hurt too much. I want to go home!!

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Triple Negative

Seriously, it was the best birthday ever!

by Claire16. June 2014 14:34

 

I know I say I have had the most love filled awesome time ever, probably almost every Monday after every weekend. And I am blessed with having so many great experiences and times with my hubby and friends and family BUT this weekend was the best of the best... The best one ever! (oh, oh, oh...One Direction song springs to mind!)

It was my official birthday weekend and we spent two nights in Mawgan Porth, Cornwall at an exclusive hotel called The Scarlet Hotel. http://www.scarlethotel.co.uk/

There aren’t enough words to describe the utter beauty, the views, the service, and how we were totally blessed with the weather. England is the best place to be in the world when we have great weather.

Our room overlooked the bay where the surf was crashing on the shore and we watched dogs and their owners, surfer’s bobbing out in the waves and children running and screaming with joy.  We joined them in the screaming and the running and tested the water temperature... Cold but invigorating.

From the moment we arrived we just felt like we must be in heaven. We were full to the brim with happiness and love and gratefulness. We ate at top celebrity chef restaurants and mooched about all day. Everyone was friendly and seemed to be so very happy too....

We slept with our door open at night to hear the waves crashing and it took me a night to realise that that’s just how loud waves are and that there wasn’t a storm.

Every morning we were woken by a knock at the door and greeted with a fresh pot of green tea. Seriously I cannot express just how brilliant it was. Pete and I laughed so much and looked at the scenery in awe. We played like children with our new purchase, a boogie board, and squealed with laughter when the waves caught us and we skimmed to shore (losing shorts and biking bottoms on the way!)

                                               

Leaving yesterday was sad but we still had a lot to see. On our way, we went to another beautiful surfing bay and then to Port Isaac where the well known programme Doc Martin is filmed. This tiny fishing village was buzzing. We sought after Cornish delights then climbed the steep hills to start our journey home.

God really was looking out for us as we came across two accidents on our route which we just missed each time. Thank you, thank you, thank you!

Once home and unpacked and tucked up in our soft comfy clothes we tucked into our tasty delights; Cornish pasty followed by Saffron cake with Cornish clotted cream and a bottle of pink fizz bought for me by my lovely client. A brilliant end to my 39th birthday. I feel my 40th may be hard to beat but I sure know that I am going to be fighting fit to get there in a years’ time... I have a big week ahead of me.

 

                                                              

                                                         

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Let's get through today so the staycation can begin!

by Claire12. June 2014 16:38

 

Today is glorious! I started my day meditating in the garden... Total bliss...

                                             

I had an email yesterday from the payment office at St George’s hospital where I will be having ablation. They want me to pay before I arrive. I called this morning and paid the £1191 for the procedure including one night’s stay. It’s a bit like booking a hotel! Then it just dawned on me that they have asked me to call the morning before I am due in to see if I should go in the night before. The cost of an extra night is £468! I am thinking that I may need to stay after the procedure if I get a pneumothorax, but paying for the night before?! Hmmmmm.

Today has been manic! In a good way. I am booked with clients but the phone hasn’t stopped beeping and ringing. I am having so many new leads and I can’t think why? Usually the Universe deals me what I can handle and I am guessing that maybe this is a sign that things are going to be good for the future. To be honest I have been a bit bemused by it. I am reluctant to book people in the next few weeks after my procedure as I wouldn’t want to mess them around and have to cancel. Still this is all good and I certainly need the money to pay for extra nights in a hospital! Bizarre....

I was sent a few really interesting links today that I want to share. The first is on artemesinin, better known as an anti malaria drug and a natural herb called wormwood. It is very successful in stopping canSer. I have been taking this since Dr Hembry recommended it to me in February.

Here is the article;  

http://themindunleashed.org/2013/12/little-known-chinese-herb-kills-98-cancer-cells-16-hours.html

Soon I will blog exactly what I take daily and why and also other daily rituals I do to keep well. I want other canSer survivors to benefit and be and stay well.

The other article has just been sent to me by another good friend. It seems really promising for all who have curable canSer. A pill which boosts the body’s natural defences could help fight off all cancers and stop them ever returning, scientists believe.

 So read on!

http://www.telegraph.co.uk/science/science-news/10893387/Cancer-pill-fights-disease-and-gives-lifelong-protection.html

 

I am little bit excited to finish work today because it’s my birthday this weekend and tomorrow my gorgeous hubby and I are going for a little ‘staycation’ in Cornwall. The weather is forecast to be sunny and warm and I am going to indulge in some treatments for myself and I just want to see the beauty of what England and the south west coast has to offer...Eek!

Technically as of tonight my birthday weekend starts here! Yay! Anyone that knows me knows I like to have a Mardi Gras of birthday celebrations. I’m not greedy I just like being spoilt! Ha ha...Just a few more clients then I can pack.

Ciao for now! X

 

 

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Making Bravo Probiotic...have I done it right?

by Claire11. June 2014 14:55

 

I recently received the order I placed for GcMAF Bravo probiotic kit. I have been storing it in the fridge as instructed until two days ago when I followed the simple instruction book and went through the process of making and fermenting the probiotics. It is currently sitting in a bowl in the kitchen. I decided to use whole goat’s milk, which on the instructions it said i could do if I didn’t want to use cow’s milk. I have been gently prodding the bowl on the outside and as we approach 48 hours, which in the booklet, it says it should be set and ready to go into the fridge. I fear that it still has far too much movement... Oh no... Have I done something wrong? I couldn’t have, it was so simple. Not even I could get it wrong. Well once we arrive at 48 hours I will be dividing it into 100 ml bowls and storing in the fridge. I have everything crossed its right...

                               

                                       Bravo Probiotic Easy Starter Kit

                          
                  Fermenting the milk with the ingredients from the kit... waiting 48 hours.

 I’ll let you know how it turns out.

I’m quite excited to start eating it. I really think gut health is of huge importance and I am keen to ensure I can get as much help as possible in making my immune system stronger and hopefully correcting it to help kill the canSer.

I though this week was going to be a little less busy. In my mind I had planned on reading and drawing and so on but then I checked my diary and realised I had booked it out with clients! Ha ha! I don’t mind. I love my work and I could do with the money. (Not for spending on me... honest J)

I have today been emailing Prof Dalgliesh and asking if it’s ok to have my next IMM101 vaccination since the injection sites are far less inflamed and seem to be finally healing. My worry is that should I wait until after going into hospital for the ablation procedure?

I got a reply and was told as long as they are not oozing then going before is fine. If they are oozing then Prof Dalgliesh will check them out whilst I am at St George’s next week and decide from there.

OK, well I will call the London Clinic and book myself to go next Wednesday. The day before... I think.

Like I said my arm is finally not giving me any trouble. The injection sites look smaller and are definitely not oozing at night. My concern is that they will be triggered off again when I have another shot. And the last thing I need is for them to get infected in hospital. I have concerns about coming home with more than I went in there with! I guess it’s a judgment call I will have to make. It has been a month since my last one and I feel that I should keep the immunity doing something seeing as I am not having any other treatment.

Today I am feeling all a bit uneasy. I just think some days are like that and I start doubting myself. I feel better when I am immersed into things. I have a client arriving any minute for a facial so that will be lovely for me too, lots of frankincense oil to calm me down... Ahhh. I feel better already....

 

 X

                                             

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Another good woman....

by Claire9. June 2014 16:46
This weekend has been a little unexpected. Saturday morning we got up yet again at 
the crack of dawn to get
on our way to a conference in Exeter. Ordinarily I wouldn't book to
go to canSer conferences but this event had
Prof Vogl doing a presentation and seeing
as I very nearly went to see him and his treatment TACE is still an
option for the future
we thought it would be a great opportunity to get the nitty gritty and meet the man
himself.
The cost of the conference for one day was a hefty £62.50 each. I didn't want to
see any other presentations.


We arrived early being diligent as usual and we mooched around the scant stalls
that were there selling
supplements, juices and more. To be honest I thought there
would be a lot more there.


Actually to point out when I booked the event it was being held in Bristol but at the last
minute it was
changed to Exeter apparently because someone made a complaint about
it in Bristol. Something to do with
not approving of complementary therapies for canSer?
This was clearly annoying because I am not sure I would have booked in the first place
had it been in Exeter.
Anyway, I went to a volunteer and asked when can we be seated to
see Prof Vogl's presentation to be told he wasn't
there! What? His son had been ill and
he couldn't attend. I asked how long they knew that he wasn't coming?
A few days! What?
And they didn't tell anyone? No, they had a video presentation to show instead.

Not good enough. Both our hearts sank and we felt gutted to be honest. The fact we
could have been doing
something else, the wasted time and money. The volunteer said
there are lots of other good presenters today..
Like who? She didn't know...

We asked to speak to the event organiser. Pete's mind was whirring and I could tell
something was really wrong.
He wanted to leave and let me speak to the organiser
as he felt he might lose his temper but I made him hang on.
He was so very calm
with Kat, the organiser. She was hugely apologetic and we didn't blame Prof Vogl or her
for
him not being there but they should have informed us. Pete calmly explained that
for people with canSer time
is of the utmost importance and having huge disappointments
and let downs are no good for stress levels.
He said that is time we will never get back.
He got his point across amazingly. Then he left to go to back to the car.

Kat said we could have a refund and said she would get us the video presentation.
I have emailed her today but
no reply as yet.

I felt guilty as it was me that convinced Peter we should go. He was lovely but we both
felt let down.
You can never tell what is going to happen, can you?
(We also missed England play New Zealand at rugby.. That too was annoying)

Still Saturday afternoon turned out to be a corker of a day and we pottered in the garden
 getting more jobs
done and soaking up the sun.

We woke Sunday wrapped up in each others cuddles and I had a plan to make the
most of the weather and
do a job that had been on my list for almost a year.. Creosote
the cabin. Bounding to get my work clothes on,
Pete stood in front of me and said
I should cuddle him.... Why?
Now I don't usually ask why, as I love cuddles,
but I could tell something was wrong.
He had just looked at his phone and read a message that had been sent to him at about
6am from my friends
husband. It said , 'Leanne left us this morning.'
Uh... I feel sick even thinking about it. I hadn't heard from Leanne since
she was admitted to hospital a week ago,
she had been messaging Pete as she didn't
want to worry me telling him that the chemo had done its worst and
stripped her body
to the point of no longer being able to have any more. They had also found she had
pneumonia
in her other lung. As always we sent messages of positivity to get well and look
after herself and right throughout
my holiday I was worried about her, sending her messages
hoping she was reading them and hoping even more
she would reply. I feared the worst and
sent her hubby a message on Wednesday. He said they were taking her
home on Friday.
We are so saddened. Sunday was a blur. I got dressed and proceeded to carry on with the painting.
Both of us
worked in silence and every now and then we would say something that we were
thinking about her. I honestly
feel a hole. Leanne was younger than me. She didn't want to die
and really believed she could fight it.


We can't comprehend how hard it must be for her family and husband. We only knew her briefly
and we feel a
huge loss. She was my canSer buddy. We'd message every day on text, Facebook
or email. We'd chat on the
phone and sound it out. Meeting her in London recently was just like
we had known each other for years and
her hubby said we were like sisters. We had plans
for the future. I thought we were both going to conquer this
disease and prognosis together.
I really believed if anyone could do it, Leanne could. Our stories are so similar....
Until now.

I can't help but be honest and tell you that I start thinking 'Oh god... How long till it's me?'
I've noticed from the past few deaths as to how quick it all happens. Within a few days it's over.
Only a week before planning on future treatment to literally dying. I don't want to die reluctantly.
Does that makes sense?
I don't want to be afraid and I don't want to fight dying.
I want to be a peace with it. I hope Leanne felt peace.
I already miss her....

I meditated this morning and Leanne was there. I feel she is one of my angels.

I don't have any intention of giving up and I will not be reading about other canSer
survivors saddening stories any
more. (I just read one this morning not by looking for it,
it just came up on my feed, and that scared me enough
not to read any more.)
I can live my life as I am. I believe I am doing the right thing and I will battle on until it's

my time.. But I still believe I will be a miracle...

                   

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Triple Negative

An update on my treatment...

by Claire5. June 2014 18:13

 

So here’s an update with what’s been happening with regards to treatment.

I had a vaccination a few weeks ago and was due to go back to the London Clinic yesterday. I felt with the state of the current to vaccination sites that I would be overdoing it by having yet another one so called the clinic first thing in the morning. A doctor called me back and asked what size they were and if they were weeping. I described them both and said that they had been really oozing for the last few weeks and that the old one had reactivated. She said that it was a good thing, to keep them infection free and try not to cover them. She said if I thought they were infected to get them swabbed and checked by the GP. I told her I have a Bear taking care of them... Laughing I am to call back in a fortnight to see if they are better and if I am ready for my next round.

Whilst i was a way I had an email from Doctor Gonsalves at St Georges hospital and he gave me the low down on the procedure that I am booked for on the 19th June. I am to call the ward the day before to see if they have a bed for me and they will tell me if I should be going in the night before. Then I was advised the usual stuff before having a general anaesthetic; no eating etc... And that I am to have bloods taken that day too.

I finished taking GcMAF some time ago and now I am back using Naltrexone to the full amount of about 4.5ml per day. I am using the liquid form provided to me by the LDN Research trust.  However even though I no longer use the injections or nebuliser for GcMAF I have since bought the easy kit for the GcMAF yoghurt otherwise known as Bravo probiotic.

http://www.bravoprobiotic.com/index.php/what-is-bravo-probiotic

 

I am yet to get started but so far it looks pretty good. I haven’t bought an kits up until now because they looked a bit of a faff and I knew I would have to get myself properly geared up for it.  Then my good friend Rona; http://bisforbananascisforcancer.wordpress.com/  posted on her blog about the easy kit and it being on special offer. Well always looking for an easier route and a bit of deal I bought it. It arrived today and is in two tidy zip bags with clear and concise instructions. I am looking forward to making it with my trusty assistant. Or is it the other way round?! Pete can make it whilst I watch and take notes... haha.

The thing with the yoghurt is, even though I don’t eat dairy, I feel having good gut health and probiotics is essential for keeping well and fighting disease. Not only that, of course the other great thing is that it contains GcMAF therefore hopefully sending the macrophages in there to fight canSer but it does contain 40 strains of probiotics which is higher than the tablet forms sold in your local health store.

OK, it’s not cheap then nothing is when you have canSer. It seems everyone is out to bleed us dry.

 

Here is a link if you would like to purchase them;

http://www.bravoprobiotic.com/index.php/shopping

Supplement wise i am still plugging away at what I think is helping me. I am still concerned about my natural killer cells being low and I am ordering more reishi to stock on. I am also considering getting a stronger strain of cordyceps to include with the Coriolus I take.

I am unsure how my vitamin D levels are since they were rated as being far too high. I think I will do another test later this month to see if they have come down to a healthier level.

The reason for stopping GcMAF is that I firstly had run out of my current supply. It was expensive and I also wanted to see how these vaccinations will work out. I was also keen to keep my body guessing and get right stuck back in with Naltrexone. Naltrexone is approved by Prof Dalgliesh as a great anti-inflammatory so I thought now was a good time before going into hospital to really get my levels up.

I just hope that when I have the procedure in hospital by CT scan that everything inside looks ok. I thankfully still feel tip top and have no symptoms.

I can’t think of anything else that I have been, should be doing or am considering. Research keeps dripping in on Google alerts and I am ever hopeful for something to radically change the game. It can’t come quick enough for me and my friends.

 

 

 

 

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Triple Negative

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