triplenegativecancer_home

Began immunotherapy here in the UK, what a novelty?!

by Claire2. May 2014 12:01

Yesterday I went to The London Clinic to start immunotherapy with Professor Dalgliesh. I had finally got a date booked and all I needed to do was turn up. I arrived a little early so took the opportunity to go to Marylebone High Street to have a look around. It’s so trendy and full of cool shops and restaurants. I found a juice bar called Roots and Bulbs and on walking noticed a familiar looking person. She was waiting for her friend and asking the shopkeepers some information on their juicers. She handed over her business card to them and I knew exactly who she was. I follow a few health foodists online and one of them is known as Better Raw. Tanya Alekseeva is a Russian New Zealander who healed herself with raw food. It was great to notice this minor celebrity on the flesh. I said hi and told her I followed her. She seemed shy but really sweet. It made my afternoon!

I spent some time with Prof Dalgliesh and had to sign a consent form before proceeding with the vaccination. The nurse was lovely and explained everything to me in huge detail. I will be having a vaccination in my arm every two weeks for next three weeks, then it goes to monthly and so on. This is all dependent on how things go and if I get any reactions in between. She explained the site of entry would look like a mosquito bite. Initially it went white and raised much like the ones I have in Germany but on arriving home I notice that it looks just like a bite. It isn’t itchy, painful or anything. I am a little concerned my arm will look a sight eventually.

On the consent form Prof D wrote that this trial was to enable an immune response so that further treatment will be more effective.

I had received an email to have ablation- finally! BUT, it is at the end of the month when I have something else booked, that I really cannot change, sadly. I thought its sod’s law! I emailed Kathleen back and said I was sorry being a nightmare but I figure I have to live too don’t I?

She replied and said that she would forward it to the doctor and that they will contact me directly.

Also she mentioned that Dr Grubnic is too busy to take on private clients now so I have been transferred to a doctor at St Georges in London. I don’t mind who does it as long as they take care of me.

I mentioned my ct scan to Prof D; he said that it sounds great and that the large two tumours will be ideal for ablation. He said that he had received a lovely letter from Prof Harris, who says he supports the treatment plan and that he will be happy to organise all ct scans at oxford. That’s nice.

I do have to have blood tests prior to every vaccination so I will have them in oxford and Emma; Prof H’s secretary has agreed to email them to me.

So it all looks sort of good.

I then got a call just half hour ago from Dr Gonsalves for St Georges. He was lovely and explained that whatever we finally agree on I must be aware that I cannot go abroad for about 6-8 weeks after. He said I will certainly get a pneumothorax after the ablation.

I found this on a forum which explains what it is;

“RFA can certainly have complications, most notably pneumothorax, or collapse of the lung, which occurs in about 30% of cases, and 1/3 of those cases require placement of a chest tube.” – http://cancergrace.org/lung/2007/03/06/rfa-for-lung-tumors/ So it’s not at all uncommon.

The NIH has this to say about treatment for pneumothorax:

A small pneumothorax may go away on its own. You may only need oxygen and rest.

The health care provider may use a needle to pull the extra air out from around the lung so it can expand more fully. You may be allowed to go home if you live near the hospital.

If you have a large pneumothorax, a chest tube will be placed between the ribs into the space around the lungs to help drain the air and allow the lung to re-expand.

The chest tube can be left in place for several days. You may need to stay in the hospital. However, you may be able to go home if a small chest tube is used.

Some patients with a collapsed lung need extra oxygen.

Lung surgery may be needed to treat your pneumothorax or to prevent future episodes. The area where the leak occurred may be repaired. Sometimes, a special chemical is placed into the area of the collapsed lung. This chemical causes a scar to form. This procedure is called pleurodesis.http://www.nlm.nih.gov/medlineplus/ency/article/000087.htm

A pneumothorax is a common complication that has no implications about prognosis. It most often either resolves on its own or sometimes requires a chest tube and then resolves

 

Right, that makes it all the more scary. He said that he would ablate the two largest lesions and that the others should go on their own from the immune response being activated.

He did say that it would be under general anaesthetic and that the ablation takes 3 minutes but getting the needle in can take a few hours. I would definitely stay in overnight and the next morning have a ct scan. If it looks good I can go home, but if not then I will almost certainly be there for about four days. Gulp.

Blimey! He did say that if air keeps getting in then I may need surgery to repair it... Suddenly this is all sounding very scary!

Anyway he has gone off to look at a date and then will call today or Monday. He said that he would like to meet me before we do it. Cool... I am happy with that plan although he muted the 12th June... the date just gets later and later!

 

I don’t have any side effects of the vaccination today and am busily cracking on with rituals and normal stuff and feel very excited as I am off to London with my man tonight. Then tomorrow is special meeting... A friend I met online. Can’t wait. Whoop!

 P.S I have attached the patient brochure on the immune therapy.

NPP IMM-101 Patient Brochure v5 0-1.pdf (316.75 kb)

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Triple Negative

I think it's good news!

by Claire29. April 2014 17:53

 

Yesterday I had a great day at a colour analysis class. My friends spoilt me at Christmas and bought me the day as a gift. I went along and with three other women learned which colours suit me the best. We had make up put on us and then shown swatches of colour. I am what’s known as a Sultry Winter... Rrrarr... this means the colours that I look the best in are dramatic colours including black. I cannot tell you how happy I was when I got told black was one of ‘my’ colours! I love black. Most of my wardrobe is black. I’ve saved Pete a lot of money! Ha ha!

It was a real treat doing something so different and a once in a lifetime thing.

I decided to email the hospital and asked if they would email the CT scan results to Pete as I simply cannot stand going to the hospital and Pete would find a way of breaking the news to me, kindly. He would find some positives and be really thoughtful as to what he told me...

Surprisingly I got an email first thing morning telling me the Prof had agreed and an email had been sent to Pete with my results attached.

Unfortunately Pete left at 5.30am today to be at an important conference. I certainly didn’t want him to open it there and tried to calm myself by thinking I can wait until tomorrow as Pete wouldn’t be home tonight.

My heart was in my throat and adrenalin was coursing through my veins... I was overreacting, who says it has to be bad news?
I thought to myself it doesn’t matter what the news is because we will keep on doing what we are doing and it’s fine. Why should I suppose its bad news? Calm myself I thought.

I got on with my juicing and then got all comfy having a coffee enema. Is that even possible?!

Then Pete rang...with what I would say is good news!

The scan report said that overall there has been slight disease progression. There has been a mild increase in the tumours in my right lung. The left lung has had no change! Subcarinal node- slight increase and hilar node no change and looks less necrotic and the precarinal node stayed the same. No evidence of metastatic disease anywhere else! They have mentioned an adnexal cyst with follicle abutting. These may be physiological in nature.

I have obviously googled adnexal cyst and it seems that it is something to do with my uterus, fallopian tubes or ovaries. It can be nothing, a cyst, or it can be cancerous. Of course I am hoping for the best. They say it could be physiological in nature. I am guessing that it could be nothing to worry about. Therefore I won’t.

I have also got an ‘atelectactic band’ extending from the right upper lobe lesion to the pleura. Again I have googled it.

Atelectasis - collapse of a part of the lung due to a decrease in the amount of air in the alveoli resulting in volume loss and increased density. It could be seen as all sorts of things and again I won’t worry about this at this stage. It is actually on the same side that the pain I had in my ribs, chest and back recently. I wonder if there are connected? The pain is no longer but sometimes I do feel when I take a very deep breath pain right underneath. It does feel like muscular pain.

There is no sign of any new disease or spread. This is awesome. I had worried that it would spread...Overall I am stoked with the results. Pete is also very pleased- he cannot contain himself... shame we are apart tonight. But it makes even more exciting for tomorrow.

I think I am so pleased, firstly because the canSer hasn’t effectively exploded out of control. I have no new tumours and despite the new little odd things, the tumours that have grown aren’t massive and some of the tumours have actually stopped growing!

Let’s face it, I haven't had any chemo for a few months and have only been eating well, taking my supplements, having coffee enemas, had one visit to Nesselhut and been doing GcMAF. Something is working to a degree.

All that time on chemotherapy especially in the last six months and the growth was potentially quite dramatic. Then stop the chemo and do other things intermittently and there is less growth and even stabilised some of the tumours!?

I am thrilled... I know it’s still growing. I just need to get a hold of it now and stop it in its tracks.
That’s what the ablation and vaccines are meant to do....

 

So back to the ablation. I still have no date booked. No confirmation, nothing. I have emailed Prof Dalgliesh so many times and he has replied yesterday and today saying he will chase. A little more would be helpful.

Yesterday I had a feeling that whilst I was in my class that I would get a call. I picked up my phone whilst on silent and a ‘no caller id’ was calling. I dashed out of the room and it was Kathleen, Prof D’s secretary. She said she had confirmation... of the vaccine. At least it’s a start she sad. I am due to go on Thursday at 2.30pm to the London Clinic. Great... she’s right it is a start...

 

But then she said,’ It’s not us. ‘I know but how do I contact ’them’ myself? No reply. She said once they had a patient who was living in Malta or somewhere who was on the NHS. He had to wait 7 weeks to get in. I told her I am private and paying myself surely it should be quicker? And let’s face it it’s already been about 3 weeks! She said that it takes up quite a big chunk of time in theatre. I know, surely they can look at the diary and book it?!!

I am hanging on here... The vaccines have been accepted based on the ablation. So it needs to happen.  I have to be patient.  Again...

I feel really good. Maybe I shouldn’t be this excited but the fear of new tumours and spread has really worried me and I kind of knew it hadn’t but seeing it in black and white really helps...

I would prefer if the new anomalies would go away but I once had pericardial effusion and the next scan it was gone. Let’s hope that happens this time.

 

I want to thank all the positive thoughts that people shared with me. It worked. I feel like I have a future and I am not completely terrified about dying and not living forever. I know we are all one step closer to death anyway... I just feel like having extra time is brilliant. I can see the next few years could be symptom free...and I know that there are always options...

Anyway who knows what’s working exactly. I just know I ordered more GcMAF. Maybe there really is something in it...

One more client today then an evening in the bath and chilling on the sofa watching old NCIS’s. I miss my Bear.....

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Triple Negative

Disturbing the peace...

by Claire27. April 2014 16:33

 

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...

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Triple Negative

Three months already.. another CT scan..

by Claire24. April 2014 15:57

 

I have been out of communications for about a week. If you were wondering where I had gone well never fear... I was abroad enjoying myself. Pete and I took five days and spent them in New York City Baby!

We had planned to visit there a few years ago but with everything going on had to cancel it and didn’t want to jinx it this time so kept it a little quiet. We also decided not to share much on here or social media because we felt we should try to enjoy each other and the place more. It was a fantastic thing to do and I would highly recommend others do it too. It gives you such a sense of freedom.

New York was sensational. Despite aching legs and feeling tired, we walked miles every day really taking in every inch of the city. We did the touristy things as well as go off the beaten track and thanks to recommendations from friends who have been there and friends of friends who have lived there, we had the time of our lives. I’m a real sucker for TV programmes like Friends and Sex in the City and was thrilled to eat at  the same restaurants and have photos taken at the same fountain.. Sad I know... but simple things please simple people! Ha!

I found plenty of vegetarian and juicing places and had a lovely green juice every morning. There were durg stores selling every single supplement you could find. Amazing!

I totally felt free. The first time in ages I barely thought about canSer and it is was a bit of thud coming back to reality. Yesterday, we felt so tired on our return we had to go to bed for a few hours. To be honest sleep hasn’t been my friend the past few weeks what with the pain in my side and now a chesty cough.

I am so happy though that the pain has lessened in my side (therefore it must be muscular) and although the cough is annoying I don’t feel ill. It’s just sleep has been really problematic and I have been a bit of a zombie since.

I hoped on my return I would have an inbox full of emails from radiologist specialists and dates with vaccination details and so on in them... but sadly no. I am once again chasing and wonder how hard can it be?

I am due to start chemo at my NHS hospital tomorrow. I won’t be going. I am putting it on hold so that I can attend this vaccination trial but I really would feel a 100% happier if I just knew when I had ablation booked. All this waiting around makes me nervous and I try to take on board the teachings from my meditation challenge which says filling your heart with love doesn’t leave room for anything else like fear. Easter has put a bit of kybosh on things I know and people have been taking their well earned holidays including the radiologist consultant. I really hope I know by the end of this week.

Today I had a CT scan. It’s been three months already. To say I am dreading the results is an understatement but I have such positive responses from my facebook page. Over a hundred people all wishing me positive thoughts and sending them my way. And I think I feel it too. CT scans are a doddle but today was a more fun experience with a goofy Australian guy jacking me up with the CT contrast... small things that make things seem better eh?

I don’t know when I will get results. I am booked to see Prof Harris on the 13th May but think I may be away again. And surely waiting all that time for results is so unfair! I am also tempted not to go and get my results. I hate it. I don’t really hate anything but I do hate waiting in the waiting room for results. I would rather they sent them to Pete. He can digest the info and find the good in them.

So lots of things potentially going on. I have to admit I am quite tempted to go and have chemo. It’s the only thing that is solid right now. Everything else is flaky. I so want ablation. I want the little buggers blasted..

I keep thinking it has been two months of no treatment. But then I remember I am still having GcMAF after having had a week intense treatment as well as DC therapy from Nesselhut. I hope, with every part of me crossed that I can report back to everyone with a good result... and also a bloody date for ablation!! Please please please don’t the let the canSer have spread out of the lung area. I need this ablation.

The vaccination trial is called IMM-101: Heat killed mycobacterium obuense. I am not quite sure what it is but once I read more on it and Pete explains it to me I will post in detail for you. But let’s just say its immunotherapy and they have been trialling it on advanced pancreatic patients. I should be starting that next week sometime.

Pete is still very keen for me to have more Dc therapy with Nesselhut and I have been contacting them to go back and have a top up. Pete has been dreaming about it and really feels that I need to keep my body fighting fit and this is the way to do that... OK I hear ya loud and clear...

I’ll leave you with some shots of me in NYC...

 

                                           

                                            

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I asked the Universe for a gift...

by Claire16. April 2014 18:38

 

The last few days have been glorious and as I sit here now I keep looking into the garden thinking just ten more minutes till there is no more sun left...

I have been trying to take things steady since Sunday and have laid off exercising properly. I have done some stretches and a little plank here or there with some squats thrown in for good measure.

I have been busily getting my house in order and preparing for trip... But this time it is a trip for fun not treatment. I’m a little bit excited. The Easter weekend is here and I am spending it with my man. My favourite person...

But even though things have been ticking along steadily there have been things nagging at me.

The pain in my side, I thought was healing. It is only by the time I go to bed that it really plays up. But yesterday I was in agony from about 6pm. It’s so debilitating and if this is a muscular injury, boy, I don’t want it again thank you very much! I don’t take pain relief usually as I would rather feel the pain and let it go naturally but last night I took 1000mg of paracetemol, 600mg of ibuprofen and 20mg of codeine. And even then the pain didn’t go fully. I did sleep though but awoke in pain again. Every deep breath and cough makes it hurt.

I noticed today though that the pain is directly under my mastectomy scar and it does feel tender to touch now, like it is muscle pain. But weird that it is right where the scar tissue is. Pete still thinks stress is a major factor. Its funny where we hold tension and he should know as his back goes almost every time we are due to go away.

But I guess that’s how the body manifests ‘stuff’. It’s trying to tell me something and I know what it is... patience! And that the Universe will guide me once it is good and ready...

Well I have been patient but I wasn’t going to wait for the Universe to present things to me so, in my impatience I decided that I would call Prof Dalgliesh. I had emailed loads and it seemed that I wasn’t getting heard. On calling I was met by Prof D’s secretary. She is very short with me on the phone and said, 'Oh, you have been accepted’. What?! Yes, they have accepted you for the vaccination trial. Oh right, well thanks for informing me.

She proceeded to give me a few details of when it would start but I asked her to let me know as much as possible as I know nothing about it. She said I may be starting on the 1st may. She did try to get it on the 24th but they are too busy.  She said that even though it’s a trial and should be free because it is administered at eth London Clinic they would be charging me for every visit. She wasn’t sure of costs but would find out. She do you know anything about the trial? No! Oh, haven’t you had a patient brochure sent? Well who was going to send it to me? Anyway that has now arrived.

I asked about ablation. She said flatly that she doesn’t deal with that. Well who does? She said they should be contacting me. How? By email, letter, phone? And who would be contacting me? I again explained that I have no idea what’s going on and someone needs to help.

Once I received the patient brochure I emailed her to thank her for her time and explained that my brain was going to pop with anxiety and stress if someone didn’t help me. I got a reply saying she would email the consultant. I then got a further email to say that the consultant is away until the 22nd April... FFS. Well at least I know.

 So good news I think! Well at least we are getting there. i still feel uneasy and lots of loose ends but surely this is good right?

Apparently the vaccinations will be every two weeks, then if I tolerate that well every month and so on. I will post the information regarding the vaccine once I have digested the information.

It’s funny because I am reading Pam Grouts book, E Squared and in it the first exercise is to ask the Universe for a gift within 48 hours. This is to prove that the Field of Potentiality, Source, God or whatever, exists.  I asked yesterday at 12.55pm. OK, so I had to chase the gift but I got it didn’t I? So just over 24hours isn’t bad at all eh?

One more thing... I actually have a bit of a sun tan.... I love the sun!

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Triple Negative

Phew what a weekend...

by Claire14. April 2014 13:25

 

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!

 

 

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Triple Negative

When you are REAL you don't mind being hurt....

by Claire10. April 2014 15:28

 

Just a quick blog.


Firstly to say ‘Happy Birthday’ to Jake, I know you are reading and I know your birthday was on Tuesday but thought I would mention it on here for you.... Hope you had a great day!

                                                    

 

Yesterday I finally got an email from Prof Dalgliesh. It was short and sweet, much like all the emails from the medical profession.

It said;

‘She has discussed with another colleague who feel that if you have no other disease outside the chest then this would be an ideal approach.
They will be getting back with dates asap.
They have seen responses in non treated lung deposits doing this in other patients of mine
so they are well primed.
Best
Gus’

 

I was a bit excited and also confused. What does this mean? I asked Pete if it is a good thing and he confirmed it was a great thing! We just need to know whether I should be having vaccinations before ablation and when, where and all that stuff.

So I replied with a few questions and have heard... nothing...

We also need to know if I should cancel chemo which is booked for a few weeks time.

Well at least I got some sort of reply... now do I wait another three weeks?!

 

My Bear sent me a lovely little excerpt this morning from The Velveteen Rabbit. He is such a softy. Love him.

 

“Real isn't how you are made,' said the Skin Horse. 'It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.'

'Does it hurt?' asked the Rabbit.

'Sometimes,' said the Skin Horse, for he was always truthful. 'When you are Real you don't mind being hurt.'

'Does it happen all at once, like being wound up,' he asked, 'or bit by bit?'

'It doesn't happen all at once,' said the Skin Horse. 'You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand.”

 

                                                

 

 

Light and Love All. X

 

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The higher you build your barriers.... Ooway ooway...

by Claire8. April 2014 16:56

 

The weekend was probably one of the times I have been most proud of myself and my friends.

As mentioned in my previously blog Pete had offered our ‘ support to three girl friends who are going to be doing the Three peaks challenge, which is climbing Ben Nevis, Scarfell Pike and Snowdon in 24 hours for our chosen charities. In preparation for this they have been doing smaller climbs/walks in training. Pete suggested Pen Y Fan in the Brecon beacons.

We all met at our house on Friday night and in such excitement got chatting and drinking... uh oh... An early night was planned but we got to bed at midnight. We were leaving at 6am the next morning. This would have been fine had we not decided red wine and hot chocolates (mit rum) were a good idea! What did we expect really? We haven’t seen each other in a while and really have no self control! Ha-ha.

This didn’t stop us. Dragging ourselves out of bed and having my great man by our sides, he drove us three hours to Wales. I was dreading it. I am not a natural walker and having never climbed anything steep since Ayres Rock when I was 21 years old. Things didn’t improve my outlook when we arrived it was very cold and damp and the visibility was not good at all!

But onwards and upwards, we began our walk with high spirits. It didn’t take more than five minutes before I was completely puffed out and I had a good old moan all the way up! The girls didn’t appear to be out of breath at all and Pete just continued slow and steady. He just kept saying, ‘One foot in front of the other, that’s all you’ve got to do’.

We made our way up to a plateau where we came across a big group of men who said the conditions were pretty nasty ‘up there’. We carried on and sure enough conditions were nasty. The wind was howling and blowing us over and the rain was hitting us sideways. But we made it to the top!

                                                      
                                          

 

The walk down was just as hard and now very slippery but I was so much happier having made our way up there. It was a great achievement for me and I think the girls now realise how hard their challenge is going to be. It gave them a chance to feel it in bad conditions and gave them a chance to see how their kits coped. Not very well in some cases... boots had puddles of water in.

Have a look at this video of our day here;
http://www.magisto.com/album/video/ID99W1oHBVF5fHAPYnZLAno?uidb64=Mjk5MTQ2MzQ&utm_medium=viral-share-movie&utm_source=channel-email&utm_campaign=sent-from-web&channel=email&utm_content=web-email-share-as-invite&test=share-as-invite&album-type=public

 

We were so please for our warm, dry car and for thankful Pete driving us home.

We got home, had hot showers, changed our clothes and just chilled the rest of the day grazing on tapas and celebrating with pink champagne.  What a weekend!

So what did you with yours to make it memorable?  

                                           

 

This week I had decided not to work quite as much as the last. I thought I had kept plenty free and booked myself to go and have lots of therapies. The only thing is I know realise I haven’t left myself any time to get ‘stuff’ done. I have this list of things to get done that have been bugging me. Things you really need to have a clear head and be in the mood for. But by the time I have been returning from my ‘therapy’ session I realise there is barely any time left after doing chores. Oops. Maybe I should have really left some time free.

Yesterday I went for reiki to a lady called Silvana. A lovely lady whose cat seemed to take a shine to me. (Hear that kitty? A cat actually liked me and sat on me!) It was a very relaxing experience and during the session I had a jolt in my tummy which seemed to shoot up my chest. I have never experienced anything like that before. The therapist suggested I try not to give the canSer my energy. I know what she means but I cannot simply not think about it. If I do that then how do I focus on being canSer free?  I didn’t experience anything else and slept reasonably well last night. I don’t however feel completely rested when I awake. Strange.

Today, I went for pranic healing. I really like Les, the healer. He is so optimistic and really believes that we are ‘getting there’. He suggested that I put the doctors that make me feel anxious in my Soul Forgiveness Prayer. He thinks letting go of anything negative really would serve me well. I tend to agree with him. I do feel up tight and I feel it is wasting my energy.

I received an email from Prof Dalgliesh this morning. I thought, ‘OO!’ But needn’t have bothered. He emailed to say the radiologist was off last week and hopefully they will look at my scan today. That’s nearly three weeks of waiting....

Anywho.... The afternoon is sunny and I have been reading a little and had the pleasure of my kitty’s company. Life really isn’t bad when it’s like this, is it?

 

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Triple Negative

I don't want to be a difficult patient but I think I already am!

by Claire4. April 2014 15:54

 

So another week passes and I am still uninformed as to whether I can have ablation privately or if the vacination trial is appropriate for me.

I emailed Prof Harris, my NHS oncologist yesterday who thankfully replied to my questions before going on annual leave for a fortnight. The radiologist there has decided I am not suitable for ablation there because I have nodal involvement. Oh... How annoying. I asked for ablation a while back when I didn’t have nodal involvement and was told no then too. Go figure!

Hurry up Dalgliesh please let me know if ablation is possible! The waiting is awful and I don’t mean to be rude but the bill for their consultation comes quickly yet their promises that they will let me know within a week doesn't

I did find out from Harris that there is a sample of my tumour available should I wish to proceed with the genetic testing. Well at least that’s something. I think I will put that on the back burner for a short while.

I also asked Harris some questions on having the gem/carbo regime. Things like will I lose my hair? Will I need a PICC line? And more. He replied that both regimes, i.e.; Gem/Carbo and Eribulin are both good options but seeing as we have funding for Eribulin right now that we should go with that. Oh... again.

I know it’s minor in the scheme of things, and even though Prof Stebbing has strongly suggested platinum regimes over Eribulin, I kind of think that if my hair is going to fall out due to side effects on one chemo but not on the other then surely opt for the one that doesn’t cause hair loss right now, then when that stops working go for the one that does cause hair loss. There is some logic to my thoughts! But now I feel that I will be whining and asking too much by enforcing what I want to do. I don’t want to be a trouble maker, a difficult patient or anything... However I feel I already am. But it makes me think of the NHS saying, ‘No decision about you, without you’. Now I know I agreed to Eribulin in February. But now I have changed my mind. Yes, I am being vain, and maybe a little influenced by what Stebbing has told me, but can’t I decide what I want? I hate confrontation and I wonder why does everything have to be so hard. I can totally understand why canSer patients give in and just say, F*** it!

That aside the last few days have been rammed with business and I am not sleeping as well as usual. I am eating emotionally and filling my face, albeit with healthy stuff, but continuously. I don’t like the unknown and all I need right now is to know either way what is going to happen. P.S. I hate being ignored.

I have used my time wisely though in between my clients. I have had the pleasure of speaking with a New Zealand born man who is now living with his family in Germany. His wife has canSer and they want the best treatment. He has been giving me info on tests and treatments his wife has been having.

Also I had a reply from a lovely lady who lives in the USA. She is a triple negative survivor for real. She was told she had a limited life expectancy and went to Germany for treatment under the care of Dr Ursula Jacobs. The list of treatments was lengthy and even hard for her to explain in detail but low and behold she is home and five years later in remission. She regularly has testing on her oncogenes to see how active the canSer still is in her blood. Apparently it is currently very low and she is feeling great.  Unfortunately Dr Jacobs no longer works with canSer patients but she has emailed me to tell me another doctor who could help possibly.

She did tell me though that Prof Vogl, whom I had booked with to go and see this week, would be a really good option. She said that she has stories of people that went there and had many, many tumours which cleared and they are in remission. It does give me hope. Pete and I had already decided that if this treatment with Dalgliesh doesn’t come about then we are definitely going to see him.

I am finding it hard to sleep at night, I think mainly because I am eating and drinking too late, my mind is buzzing. So I have been using that time to focus on the GcMAF working. This could be a really good time for things to be happening and my order of GcMAF arrived yesterday so I had my next round of shots. I certainly don’t feel ill.

 

I have been asked with the air pollution issue that we are experiencing currently in the UK, if I am feeling anything on my lungs? Nope. I feel as well as usual.

 

I have been reading the importance of exercise and the effect it has on the glucose in the body and of course we know how glucose affects canSer. This is why so many very fit and active people last much longer when living with canSer. I don’t think I do enough. Some days I only do twenty to thirty minutes. I know I should do more.

Well tomorrow I will be... my friends are going to be climbing the three peaks for charity soon and needed some training. Pete kindly offered for us to go with them to the Brecon Beacons and walk up Pen y Fan. Check this out; http://www.nationaltrust.org.uk/article-1356405780951/

Should be fine, yet I hate heights and am not really that fit! Oh well it gets me out and about and I am sure it will be fun...four girls and a Bear. Sounds like a really good children's book! Illustrations pop into my mind!

 

Next week I have a lot planned. Of course if something to do with having treatment pops up then everything gets put on the back burner but for me at the moment I figured I would have more 'me' time. I am having healing/reiki, pranic healing, a yoga class (yes finally!) and acupuncture. Amongst that I hope I find some conclusion on this ablation debacle.

 

I hope that everyone else has a great weekend full of fun and laughter.
Here's a Friday Funnie for you...

                                  


Look out for pictures on Facebook of our eventful day tomorrow...

Ciao!

Light and Love... XXX

 

 

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Triple Negative

Pretty please?

by Claire2. April 2014 17:11

 

I took the opportunity yesterday to enjoy the weather as much as possible after detoxifying my house. (It was desperate for a proper dust and hoover amongst other things!) So despite my list of things to do growing I decided to have lunch and then read my new book in the sunshine with the cat on my lap.

The book is about energy experiments that prove your thoughts are your reality. I decided that I would try it out and see what happened. I have been waiting (patiently) for ‘people’ to contact me.

I often wonder why‘people’ say they will do something within a time frame and then don’t do it. I then think is it me that’s being a pain in the arse for getting arsey with them for not sticking by their words?

Well with this new experiment underway I decided to believe that the universe would give me what I wanted and that I would hear from these ‘people’ within 24 hours.

Low and behold I did. I didn’t necessarily get the result I was hoping for but I did at least hear from them. The experiment worked.

First thing this morning I received a short mail from Prof Stebbing basically saying that he thought it was hard to tell if I can have a biopsy for the genetic test and that I should discuss with my oncologist Prof Harris. I was totally confused. If I wanted to discuss this with Harris surely I would have done that? I couldn’t understand why I couldn’t have it done unless they say it is physically not possible, especially after being told that I could potentially.

He replied asking my mobile number. I gave it to him. He called. He was very obscure and almost intimidating in the way he spoke but I have gotten used to thinking that is just the way he is. As with all intelligent men in this field we are supposed to simply trust them without question. The problem with e is that I have bloody millions of questions! He said that in his professional opinion that I should be looking at having a platinum agent rather than genetic testing. I said I thought that having the biopsy now was the right order to things. I could at least then have the genetic test at a later date all whilst I am having chemo or some other treatment. He said he feels I have paid too much money for treatment and doesn’t want me to do that anymore. He said a biopsy could cost me in the region of £50,000 if it goes wrong. How could it go wrong? I asked. He said that it could have a bleed or infection etc. Plus he said that paying in the region of £7000 for a genetic test is simply too much. Ok so why did they suggest it then? The mind boggles.

He said that I need treatment options right now and not diagnostic options. Ok hear ya..and I’m not against having a platinum agent such as gem/carbo regime (not that I am loving the idea of having my body flooded with chemicals) he said he wasn’t fobbing me off and that if his wife had  to choose , this would be it. OK I really hear ya. I am sure he said, ‘Ok darling, bye’ at the end. Ha ha!

So that was a weird start to the day. I always feel rejected when I am told that I cannot have something even if I didn’t really want it! It also makes me wonder are they telling me they don’t want to spend money because I don’t have private healthcare and unlimited funds.

I then get a call from the radiology department asking me to pay £243 for the cost of a radiologist to look at my scan to see if I can actually have a biopsy. Uh? I thought Stebbing had just said that I shouldn’t do that? I guess that they hadn’t communicated. Part of me wanted to pay the money and find out if I can at least have the biopsy. I haven’t rung them back to let them know. Still pondering.

I then called Dalgliesh's PA. I decided this was easier than emailing. She immediately said that she had asked him to call the radiologist to tell me if I can have ablation. No such joy as yet. I then mentioned if they had heard back as to whether I can have the vaccination trial? She said she didn’t anything about it and that I have to wait till I get a reply about the ablation. For goodness sake... seriously. Its two weeks since I saw him. For people that work in oncology where time is clearly important how bloody hard is it?

I have to say how thankful I am for the NHS at this point. At least when it comes to treatments that they approve you can get them very quickly. Anything outside the normal route and guidelines however takes so much longer. I am waiting, seven weeks on to hear from the radiology department at the Churchill as to whether ablation is possible there. That said I am feeling a lot of love towards Prof Harris. He is the man right now that at least replies when I ask him something. It may not be want to hear but at least I get a reply. His PA, Emma, is a diamond too. She has emailed regularly for some time now and she is a god send.

I reckon the Universe has a plan. I don’t know if I was meant to wait all this time for my next round of cancer smashing treatment (even if it is chemo) but maybe that’s what was mean to be. Instead I have been on GcMAF. I had a batch arrive today for me to take for the next few weeks. Fingers and everything crossed it is at least doing something positive in three.... Please, please, please, pretty pleasejQuery15202801579472960667_1396455100883?

You never know how the day will pan out and what kind of news you get. I do like that about life but all these twists and turns play with the heart and the head.

I will keep digging for a reply from Dalgliesh- surely by the end of the week there will be some confirmation?

 

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Triple Negative

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