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Someone is looking out for me! I dodged a bullet....

by Claire8. October 2013 15:49

I had an early appointment booked for today with Dr Nesselhuts clinic. Today was the day that I was to have all my white bloods cells harvested by a process called leukerphresis. I have had this done before, a year ago, but as I have had so many treatments they had run out of my cells to use. I thought I was ok about having it done again. It doesn't cause any side effects really and is pretty harmless however I must have been nervous and anxious about it as I sweated all night long and had odd dreams. When we arrived at the clinic we met with Dr Nesselhut himself who proceeded to discuss having my white blood cells harvested. He said that in the past few weeks he had found that two of his patients who were very advanced with different canSers had also had leukerphresis for the second time. Previously the cell therapy had given them astounding results and like me needed more cells to continue with the treatment. They then had the leukerphresis and have found since then the canSer has exploded and grown much bigger and spread throughout the body. This has lead Dr Nesselhut to change this protocol. He thinks that the lack of white blood cells is actually making the canSer ravage the immune system. He thinks even though the canSer I have isn't as severe as those two cases he certainly doesn't want to risk it growing and spreading especially as it happens in such a short space of time. Therefore I have had about 20 syringes of blood which will be enough for two visits instead. The upside to not having leukerphresis is obviously clear plus it is also makes it cheaper. The down side is that it means I will need to visit for about a week or so every other time.

We both felt very sad for the two patients who had such terrible luck and hope that they respond really well to the next treatment that they have. We also felt incredibly lucky that we'd dodged this bullet and that the Universe had granted us this gift. It's funny because I had obviously been worrying about this procedure. I had mentioned to Peter that I was concerned about having my cells harvested especially when I have been on chemo for so long. It's a known fact that white blood cell counts drop during that kind of treatment.

Dr Nesselhut did say that he has been getting astounding results with the gamma delta treatment and that I am to continue with that treatment as planned. 

We have noticed many Portuguese patients in the last few days. Since the day Dr Nesselhut was featured on Portuguese tv they had over 10,000 telephone calls that day! They clearly cannot cope with that many patients and have confirmed that they have to commit to their current patients. Again I feel very lucky that I have had the opportunity to have this treatment before he became so very popular!

After we left the clinic we felt a little bit aloof. We don't like change usually. Of course this was good change. We bought lunch and got in the car and set off to our favourite place in the mountains. We got our blanket and had an alfresco lunch by the river where we first went over a year ago. Despite it being cold and fresh it still looked beautiful and we both felt very serene. 

We're back now at the hotel and I'm tucked up all warm and snug having a cup of green tea. Reflecting on the day it has dawned on me that there really is no point worrying about things. I worried about having leukerphresis and it actually didn't happen. A lot of wasted energy and feelings for nothing! I definitely feel like someone is watching over me and feel very grateful and blessed.

It is our last night here for a few days. We have another night of movie watching planned and lots of sleep. These early mornings are not for me! But before I go to sleep I will be telling the Universe what I am thankful for and share a lot of gratitude.

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Triple Negative

European tour- days one to four

by Claire7. October 2013 09:52

We've had a brilliant few days. Driving all over Europe never gets tiring. Not for me anyway! Pete doesn't seem to mind either. This weekend was spent walking and taking in Amsterdam. It's not a place I've ever really had a desire to go to but I would highly recommend it! Unsurprisingly the red light district and the cannabis coffee shops aren't why it is so appealing! There is so much to see and do and the coffee shop culture is lovely. Pete did some research and we hunted down many watering holes that had a lot of history from the oldest to the famous frequented by Rembrandt. The only down side to the weekend was the state of our feet! They are very sore despite wearing apparently comfy shoes.

Yesterday we made our way from there to Duderstadt stopping on the way in Munster. Pete lived near Munster as a child so was intrigued to see if he could remember it all. We discovered an authentic German eating house and put a big old smile on Petes face by having a hearty German meal.

This fuelled him up ready for the next leg of our journey to our usual hotel for the next three nights. Knowing Duderstadt as being a very sleepy town we were hugely surprised to find it heaving with people and stalls. Apparently we had missed the Apples and Pears Festival which is an annual event here. We did manage to have a quick scour and take in the atmosphere before ey all packed up as well trying some of the local delicacies and delights!

Arriving at our German home it was such a pleasure when all the staff seemed genuinely pleased to see us. As usual the room is great and we came really prepared with movies on a USB stick. It's great staying in a hotel but sometimes it is nice to have home comforts so of the next three nights we are able to watch a movie all tucked up in bed with a cup of tea.

We had an early start today with an appointment for both of us to have our bloods taken. They have to test my blood before doing leukerphresis tomorrow to ensure I dont have HIV etc. They did the same for Peter but also took 200mls of his blood as he is providing his gamma delta cells to me.

Now that's done we have time today to mooch, do some work, write some emails and meditate.

I stupidly forgot my medication dispenser full of my supplements. They are safely with the hotel in Amsterdam. I am having it posted to here... But what an epic fail!I simply keep forgetting things!

I'm having a lovely time and just hope it stays that way. 

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Packed my trunk...

by Claire3. October 2013 15:57

 

So yesterday was an exciting day that got even more exciting by the evening news. I had a tip off that my ‘piece’ was being televised on the evening news. Argh! I did everything I could to avoid watching myself but Pete filmed it! Ha ha! It is so very odd seeing myself on TV. But everyone seemed to like judging by the text messages and messages on facebook and twitter that I got. Then to top it off I was featured on Lorraine Kelly’s show this morning urging everyone to bin their bra’s for charity! If you blinked you may have missed but I it brightened everyone’s days up! Ha ha!

I have been busily getting ready for our mammoth trip to Germany. As well as this I had a visit from a photographer from The Sun newspaper. Again I felt very awkward standing grinning from ear to ear. I just hope the photos look good!

There are plenty of Breast Cancer Awareness products for sale during this month. One company offering their services is Stella and Dot.

 Stella & Dot are a high fashion yet affordable and accessible jewellery and accessories brand with fantastic quality pieces seen in Vogue, Red and Instyle. They are only available online and through a network of stylists who host pop-up boutiques in homes and events. Every year we support Breakthrough Breast Cancer where they have some select, absolutely lovely pieces that are available to purchase and they give away 100% of the net proceeds to the charity - the boutique is open now!
As well as this, my friend Kate is offering the opportunity for anyone who would like to host a pop-up boutique specifically to support the charity during October, a raffle prize to raise funds PLUS she will give away all of her earnings on the night to the charity too. Sounds like a really good deal to me!
http://www.stelladot.co.uk/shop/en_gb/featured-shops/breast-cancer-awareness

 

If you are interested please don’t hesitate in contacting me and will I give your details to Kate.

I am just finishing off my clients for the day and I am feeling a little excited about my travels as we are having a stop off in some new locations either side of having treatment. I am dreading leaving my kitty but know she will be in good hands. I have done everything I can think of... but I am sure I have forgotten something.

It’ll be an early night tonight in order for a very early morning... Urgh... I don’t do early mornings if I can help it! But I get to go trucking with my man. We get to catch up and laugh all the way through Germany. That I cannot wait for. Yeah!

I’ll do my best at keeping the journal/blog going whilst I am away.... I have everything crossed that I will feel good all the way through it.

I feel like singing Nelly the elephant has packed her trunk! (Weirdo!)

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Breast Cancer Awareness month.. can you help?

by Claire2. October 2013 14:17

 

It’s that time of year again... Its’ October so that means one thing – It’s Breast Cancer Awareness month. You can show your support in many ways. The high street stores all have products they are selling with a percentage going to well known charities. Here is a link to what’s available;

http://www.breastcancercare.org.uk/news/media-centre/breast-cancer-awareness-month-press-pack/whats-high-street

It’s been an interesting few days for me.  I sadly caught Pete’s cold bug... I had that sore feeling in the back of my throat and it started to spread and I had that dreaded feeling of how bad will it get? But I persisted with positive thinking and a few ginger shots. Phew they certainly clear the airways and stimulate the system. I had been told lots of old wives tales, so went to bed with hot lemon, had a n early night, put olbas oil on the burner AND put Vicks on the soles of my feet then out on socks. That’s a weird one right? Well low and behold the very next day I feel as good as new. I don’t even have a sniffly nose or even a hint of a sore throat. That has to be the quickest I have ever got over a cold. Pete is stunned. He is still battling with a chesty cough. Woohoo! I am very happy as I was very worried what with our Germany trip and treatment next week approaching so quickly.

I have been cramming in clients before I go away. This next trip to Germany is going to our longest in a year. I am looking forward to it but also dreading being away for so long. There is so much that has to be organised.

Amidst all of this there has been quite a stir with Breast Cancer Awareness month. Today I have had Emma Vardy, a reporter from BBC South Today interviewing me and asking all about me and my story. I have no idea what I said. I hope I haven’t waffled and that I made some relevant points! I don’t think I will be able to watch myself. I’m not sure when it goes out, sometime this week I have been told.

I also spoke to a reporter from The Sun’s healthy pages. The reporter had spoken to Professor Dalgliesh and got the low down on immunotherapy. So I should be featuring in that in the next few weeks too.

And if that wasn’t enough excitement I also saw on Lorraine Kelly’s show that there is a campaign to bin your bra in conjunction with the House of Fraser, Elle UK and the charity Against Breast Cancer. I had to do a 10 second piece to camera as to why I am binning my bras. Let’s face it I have plenty since I had a mastectomy.... If you would like to get involved with it here is the link. It’s a great way to get rid of all those old bras you no longer need;

http://www.itv.com/lorraine/health/bin-your-bra/

So that’s my fifteen minutes of fame but I sincerely hope it spurs everyone to get involved to really check themselves, not to be afraid and to live life to the fullest. Don’t laugh at me when you spot me in the media!

If you would like to support Breast Cancer Awareness month please do let friends, family and colleagues about the charity ‘wish’ bracelets that I personally hand make. All proceeds goes to Breakthrough Breast Cancer and The Cancer Vaccine Institute.

Here is the link to donate and order your bracelets;
http://www.triplenegative.co.uk/triplenegative-make-a-difference.aspx

 

 

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What will you do when all this is over?

by Claire30. September 2013 10:53

 

The weekend has been lovely spending much needed time at home with my man. Sadly my Bear has been feeling pretty rough now for a few days and all I could do to make him feel better is tuck him up on the sofa with the cat and lots of ginger shots and hot lemons.

I took the opportunity to do some retail therapy with my best friend Liz and we shopped for more fresh produce for a meal that Pete said he wanted to cook us (despite being ill)

It’s funny how much money gets spent on food these days. In days and years gone by my money would have spent on going out and alcohol. It feels much nicer knowing I am spending it on fresh organic produce now though.

I received a new book in the post this weekend too, Mind over medicine by Dr Lissa Rankin. I love books that have lots of scientific evidence in them and when the author has completely changed their perception of healing. It motivates me more to really believe that anything can happen. She mentions in it how the words of the doctors telling you that the disease is terminal or incurable is so harmful and actually causes illness. I completely agree with that. I find it very hard to shift those words from my mind. I have been told it therefore it should be true? No definitely not. Doctors cannot explain what they call spontaneous remission yet it does exist. I’m looking forward to reading the book fully.

Yesterday my friend Alex ran the Nottingham half marathon and achieved her personal best of one hour 36 minutes! Wow what an achievement and she has raised so much for our charities!

The total of my fund raising now stands at £9605. It’s creeping up but I am hoping that we can achieve £15,000 now as our new target.

I had a reiki treatment on Friday by my friend Sarah. I love being a ‘body’ and ‘helping’ out when someone needs to practise their treatments. It’s such a treat. But whilst treating me Sarah felt that something kept coming up that she wanted to mention to me. She kept hearing the question, what are you going to do when all this is over?’ She asked me outright...It is true that some people relish being ill and love all the attention. She didn’t feel that of me but she does know the effort I go into writing my blog and having the website and facebook. It could hold me back and limit my healing if I didn’t have any forward plans. I knew immediately what she meant but I do know what I will do when I am well again. Peter and I would love to see the world and take some time off. That would be for about four month’s maybe. Then I would like to consider having a baby. For my work I would like to continue being a therapist but I would like to have a direct impact on others and do some voluntary work. I thought maybe I could do free treatments on patients that are going through or who have just completed cancer treatment. Offering comfort and knowing how they feel could be something that other therapist just don’t have. I understand how it feels to be bald and what the lethargy feels like. Obviously raising more funds to help others would still be high on my list but I do have hope and I do feel that the end of this can be seen.

This week is busy as we are off on Friday to Germany for my next round of treatment over there. There are lots to do before then. So I must crack on!

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Cannabinoids.. a canSer cure?

by Claire26. September 2013 17:20

 

Today I have been to a Macmillan Cancer Support coffee morning. It is the biggest coffee morning charity raising event with hundreds if not thousands of people taking part all raising money. I supplied some gluten free cakes... OK not sugar free but at least they were a little healthy! The thing with Macmillan is that you never know when you may need them right from diagnosis right through to end of life care. A truly worthwhile charity.

In the post I received a lovely thank you card from my friend who stayed last weekend. In it she enclosed an interesting article from the Sunday newspaper regarding a lady who has decided to stop having conventional treatment and now lives day to day healthily avoiding sugar and dairy and not being afraid of dying. She wasn’t given long to live yet she is still here and vibrant. She said that she takes a cannabinoid tincture that she gets from the USA. This is really interesting as I had been given some in-depth information about cannabinoids benefits from a friend in the medical industry. The challenge was, a year ago, where to get it from. I have decided to research this further as it seems it may have the ability to stop tumours growing. Obviously when cannabinoids are mentioned you automatically think getting stoned.

Here is an extract from a website that explains how cannabinoids work;

If you’re looking for the latest advances in medical cannabis, then you need to know about CBD rich strains. CBD is short for cannabidiol. It is one of the many cannabinoids that make up the medicine's active healing properties. In order to qualify as "CBD Rich", the product must have more than 4% CBD. Research has identified CBD as the main ingredient responsible for inhibiting the growth of cancer cells. In addition, CBD shrinks tumours and inflammation. CBD is also good for reducing pain and helps with insomnia. It has significant analgesic, antioxidant, and anti-inflammatory properties and helps reduction in anxiety and stress.

All strains that are CBD rich have a lower THC content. THC is the ingredient that makes one feel "high" or "Stoned". CBD acts to mitigate the "High" of the THC. For this reason, most recreational strains have been bred to reduce the CBD content. As science delves deeper into the therapeutic properties of cannabis, CBD is proving to be the most significant player in the art of healing.

I am really intrigued by this and although I don’t expect there to one miracle- cure- all medicine it goes within my belief of the ten point plan of combining different elements to get the best possible life.

I have also been reading lots of forums and have come across some really interesting survivors stories one of which has been helped by Julian Kenyon from the Dove Clinic in Twyford.

Here is a good article and advice on diet by Julian Kenyon. Now coming from a doctor it does help reinforce what I have already been doing;

http://cancerconfidential.wordpress.com/diet-and-supplements/the-latest-advice-on-diet-from-the-dove-clinic/

I am really interested in having a nutritional test to see if I am lacking anything. I am looking to improve and want to really know what is going on inside me. Don’t we all?!

I am now getting ever more interested in meeting Dr Kenyon.....

 

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It's always good to have more options....

by Claire25. September 2013 17:11

 

Today has been another lovely day. Another filled with great TV, The Great British bake off being one of them. It makes me laugh that under no circumstances can I eat the bakes but I do love to watch them create! Another lengthy night’s sleep and the reluctance to live my wonderful bed but it has been another good day. My days do not have to be filled with experiences for them to be good. I simply like to potter. Prepare meals, organise bits and bobs, clean the house and sort through photographs as well as clients tucked in between.

I have been replying to a few forums offering my advice and experience to other triple negative survivors and have come across a doctor whom I have heard a lot of recently. His name is Prof Dr Vogl. Another German doctor who has a clinic in Hallwang near Frankfurt. He specialises in radiology in particular transarterial chemoperfusion or TPCE. I know sounds ‘out there’ right?

The long and short of it is this; It is where under local anaesthetic catheters are passed into the tumour, in my case, my lungs and a large dose of chemotherapy can be applied directly into the tumours. It is apparently far more effective than giving the whole body chemotherapy because you can a0 use a much higher dose as it is localised and b0 it doesn’t leave bad side effects and c0 can be done as an outpatient. Also he can stop the flow of blood to the tumours therefore making them die. Of course this isn’t a cure for canSer but can obviously elongate a patient’s life. I thought to myself it was worth investigating and found an email address to the Prof. So I emailed him. And within an hour I had a reply with him explaining that he could offer me the treatment depending on my CT scans. Well, well, well... this does give me options. I am intrigued and following my next Germany visit if my CT scan doesn’t look as I had hoped then I think I will send him a copy and see what his thoughts are.

So another option... it; s always good to have more options... Germany seems to be rocking great treatment.

I saw this inspiring article online earlier today that I thought I would share with you...
15 wildly successful people who overcame huge obstacles to there. Kris Carr is one of them J
http://www.huffingtonpost.com/2013/09/25/successful-people-obstacles_n_3964459.html

 

 

 

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In the Mood....

by Claire24. September 2013 14:52

 I had the weirdest night last night. We went to bed nice and early in order to catch up on much needed sleep. Well that’s Pete who needed it really but you know me always need more! But I couldn’t sleep and didn’t until about 2am.

Whilst lying there the moon poured in through the clouds and I thanked the Universe for everything as normal. I then began visualising. I imagined the lymph nodes being polished and scrubbed to keep them clear. I thought of blue force fields around all other parts of my body so that do not get infected and I imagined me using a really cool Dyson hoover with a really strong pipe nozzle to suck up each and every entire tumour. It’s the first time I have actually seen the whole thing be sucked up and fully removed. Whilst all this was going on I had such warmth in different areas of my chest and back. So much so it was throbbing. First of all I thought it was me perhaps making it happen. But when I got up to go to the bathroom it was really thudding. I couldn’t help but think that maybe I was being healed by someone else, maybe John of God still? I felt really positive about it. I hope that when it the CT scan comes round my feelings are right.

I was reading an article in my therapist magazine yesterday and they have a feature on a lady called Patricia Peat who was an oncology nurse before starting her own business in helping canSer patients with treatment and advice. She helps advice on all aspects of treatments from orthodox to complementary. Some of the information she provided for the article was very in depth therefore I have decided to email her and see if she has any nuggets of advice or treatments that may help me. I am guessing she must know the cutting edge treatments and who provides them. This could be really helpful for not only me but for the other ladies that have been contacting me.

I saw a notification on Google from someone trying to find out what treatments are available to stage four triple negative cancer patients. The message seemed so strained that I couldn’t not help. So I have registered with the forum and given my details and offered my assistance where possible. If I am doing so well surely I can help someone else.

Today has been lovely so far. I dragged myself out of body nice and early to go to an acupuncture appointment. I try to keep all appointments to the afternoon however today was different. I was advised by my acupuncturist that today I had to have it as a morning appointment due to the five elements. This time of year is the Earth element and on this day at 10.30am. By working specific points related to the Earth element balances and nourishes that particular element. Mary called it a 'harari' or seasonal treatment. I felt incredibly sleepy whilst having the treatment and I am pleased I haven’t had any clients booked for today so that I can take it easy and let it do it’s thang!

You'll be please dot know I have got over my grumpyness from yesterday. I have adjusted my mood and now feel totally at ease with starting the nutrition course at the end of October. Sealed

So to use my time wisely and plan for the future I have made some changes to my mood board as prompted by Polly Noble. I have altered some things and there is still room for more to be added... As you can see the focus is on healthy mind and body as well as some goals for the future. What do you have on your mood board?

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Be awesome today....

by Claire23. September 2013 17:30

 

I got up today with big intentions to crack on and get really tucked into the nutrition course I am going to be studying online. It started a bit too soon for me as I was away on holiday and a new module opens each week so I have already been falling behind. So today I thought I would dedicate an afternoon to it and catch up. Unfortunately in my haste and panic last week I emailed the course administrator to discuss the possibility of postponing the start of the course till October so that I wouldn’t miss too much as I am away in October for about two weeks and wasn’t sure f ii would be able to get anything done whilst away. Bearing in mind I simply asked to see what their thoughts were. Unfortunately they have already gone and moved me onto the October course and as I sat down today to get cracking on the course content I found I couldn’t log on. Boo! I have felt frustrated all day. I think I have made a boo boo. I should have stopped worrying and just got on with the course... Now I have to wait until the end of October to get started. Ever since I have booked myself on the course I have been having doubts. I get a bit like that when I am nervous. I think I am anxious of the expense spent on the course and I am feeling pressure as I really want to succeed and put it to good use but I doubt my ability and my drive and motivation.

I decided instead to crack on with other things that have been on my to do list such as updating my mood board. The more I think about what I want to achieve out of life the more I get frustrated. I don’t think I have a clear set of goals. The thought of canSer hanging over my head makes me feel restricted. I won’t let it stop me from my daily life and my aspirations but I am a simple girl with simple needs. All I want is for Peter and I to be happy, earn a good living and be in love. I want the nice things like see the world and have time out and to continue my work as a therapist. I'd like to expand my repertoire every now and then but I am now not sure what I really want?!

I want to inspire people. I want to help people. I want to be a person who is calm and above all happy with myself. I want to be healthy and canSer free. To do these things I think I am on the right track with my daily routine of exercise, meditation and yoga. I know I need to up the ante with my diet and really become ultra focussed. But when things become second nature I forget that they are good for me and that I am actually making a huge effort and being a ‘good’ girl!

I also did a coffee enema today, the first one in over a month. As expected I am buzzing from the caffeine. I do feel clearer though. It’s great to have a clear out but one must have probiotics after.

I have also been de-cluttering my study drawer. It’s definitely the time of year for a huge change. I feel colder and the lack of daylight has an impact on the way I feel. I know I have been abroad only recently but one of the main things on my mood board is foreign holidays and destinations. I want to see the world. I would love to have a few months away with Pete but then I forget that it would be impossible for me to do that as I have to have my bloods taken every three weeks for chemo to start again. CanSer sucks. Although, I can’t feel sad. I watched This Morning today and a lady was on there that has canSer and has her nose and roof of her mouth removed. At that very point I thought to myself how very lucky I am. There are always people much worse off than ourselves. I am so grateful for the way I feel and the fact I am actually very well considering my diagnosis.

Time to put things back into perspective and stop moaning. OK today didn’t go as planned but I did get lots of good things ticked off my list. I am just a bit cross at myself for having doubts and now will have to start my course at a later date. It’s the old saying of, 'be careful for you wish for’....

 

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A perfect end to a perfect week...

by Claire22. September 2013 16:05

 

Well what a fun filled week and weekend I have had. No sooner had mum gone home my best friend from school arrive. As expected we chatted like hyenas for many hours as well as filling our faces in between. We nattered about our lives since we saw each other which was about twenty years worth! It’s mad what people remember and as Clare and I used to live together when we were doing our GCSE’s there were some very funny memories! It’s amazing how much you can talk without taking a breath! Haha!

This week with family and friends has been so good for the soul. I feel enriched and happy and now on balance ready for anything. The week ahead looks busy but I feel settled.

At night before I sleep I have been saying thank you to the Universe even if it’s for one little thing during that day. It puts everything in perspective and makes me feel complete. I actually feel less like have canSer today than I ever have. I am treated as if I am well by everyone and I talk about the future and what my retirement years will bring. This is a shift in me. I have always looked to the future but for once I am not letting my health stand in the way. The possibilities are endless and I, as well as thousands of others, are simply waiting for a cure...

I have been bowled over by the generosity of my new friends too. I have received huge donations from people I only met briefly on holiday. I must have made an impression on them!

It’s only one week today that my friend Alex runs the Robin Hood half marathon in aid of my chosen charities. Here is a link to the race details; http://www.robinhoodhalfmarathon.co.uk/race-info/half-marathon.htm. I couldn’t even contemplate running that far so I am thrilled and touched that she is making such a huge sacrifice to do this to raise more funds!

If you would like to donate to support her and Breast Cancer Breakthrough and The Cancer Vaccine Institute then please click the link:

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=makingtriplenegativeapositive

Well the sun is out and it’s 23 degrees. My Bear is on his way back from a boys weekend and I feel he may be a little delicate... so I am getting everything ready for him to crash when he walks through the door then a cup of green tea in the back garden... A perfect end to a perfect week.

 

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