triplenegativecancer_home

My 40th birthday celebrations are finally over....

by Claire1. July 2015 15:51

 

I am being really lazy at the moment. I keep thinking I should blog but then one thing gets in the way of another and before I know it another week has passed.

I write journal entries/blogs in my head regularly. It would be lovely to extract my thoughts without the effort of actually having to type! Haha!

My birthday celebrations are finally over. ‘Phew’ says Pete! I can honestly say it was hugely memorable and I want to do it again! (OK maybe not right now as I need to get some routine back into my life!)

Last weekend was the finale, the crème de la crème, the piece de resistance...I was taken to The Scarlett hotel, where I spent and loved my last birthday. The hotel is immense and it felt like going home. Pete and I were joined by special friends, who meant laughter and happiness was on the menu all weekend!

On arriving the weather wasn’t perfect but then everything became perfect. Every time we needed to do something that relied on the weather being sunny and warm, there it was. God really was playing a huge part, and I looked up on many occasion, thanking him profusely.

There was an agenda for the weekend involving hot tubs overlooking the beautiful bay of Mawgan Porth with its crashing waves, then a fantastic meal at Jamie Oliver’s restaurant Fifteen, with the cheekiest little waiter who just made the night even more funny and memorable. Saturday morning started with a real treat and another first for me... Surfing! Gulp... Why? The fear faded away so quickly... the instructor Archie from Kingsurf was great. Again another little cheeky tike who gave as good as he got, and boy did he get it! Haha! I almost surfed standing up, the rest of the time I got bashed by waves and swallowed most of it ending with a very salty mouth! It was incredible and i will never forget it (I want to do it all again!) The afternoon was nicely rounded off with spa treatments for the girls and a game of boules for the boys. We all ate and drank far too much and then left Sunday after an enormous breakfast, with smiles and looks of sadness. Each and every one of us felt relaxed. My cheeks were hurting from laughing. My tummy ached from so much great food. My heart felt buoyant as if being lifted by helium balloons... And then that pang of sadness that it had to end. Now I never get that feeling really as I love going home and as much as I was so pleased to get home after the four hour drive I just wanted to be back there for longer!

But everything has to come to end to make us want more! I really cannot thank everyone so much for what has been a super epic month of fun and birthdays celebrations! Ye-ha....

                                          

                                               

                                      

With all this going on I still had my mind occupied by the fact that I haven’t had a treatment in over month. I have been battling on the phone and email to find out where the results of my RGCC bloods were and when could I have my next appointment at Dr Nesselhuts. It shouldn’t be this hard but sadly it is. I have had a bit of a break through now and my results were received yesterday and dates are being tentatively put in the diary. There lies more problems when Doc is now on holiday and I can’t have anything confirmed until the 13th July. Of course I feeling extra stressed at the knowledge that I haven’t I wouldn’t have had any treatment for two months... This does not fill me confidence. We all know that keeping on top of canSer and batting it back means having to have treatments really regularly.  So with everything being so flaky I have decided to book for TACE. I know it works and if I have before DC therapy and whatever vaccine next the TACE would already have been done and wont effect the cells given in my vaccine.

This is next challenge. I am still amidst the emails trying to confirm a booking with Prof Vogl for TACE. He too will be away when I want treatment so it seems I will be making two trips to Germany at the end of the month. This isn’t so bad. There are pros and cons to doing it all at the same time and to splitting it up over two weeks. I just need confirmation and to get booking flights.

The RGCC blood test results were emailed to me yesterday and it is surprising how different they are to the one I had over a year ago. Some of the chemo’s that were apparently going to work really well for no longer have the same effectiveness as before. But still high up there is Eribulin. Of course this freaked me out a bit as it had been removed from the chemo’s available earlier this year. However on researching it yesterday it seems that it has been bought back for the NHS to use. Now that’s a result....

There is a whole lot of info on the results that I do not understand and I am simply going to have to wait until I see Nesselhut to discuss further, but I have noticed that they tested lots of drugs finishing with the letters MAB. i.e. nivolumab, ipilimumab and so on. These are meant to be the big things that are going to change the face of canSer treatment. Well for me none of them do anything for me. I can’t tell you about nivolumab as this is still being tested and the results given on the 7th July. I’m so intrigued...Please say it has been doing something or else my next scan results could be quite interesting!

That’s the next thing. I have got scan dates for the end of July. I will have them before I go to Germany and get the results at the beginning of August. I am confident about my brain. I feel really good still physically in myself but I have had a small tickly cough start and this puts the fear into Pete and me. We just hope so much it doesn’t mean it has got big in my lymph nodes. No point in worrying, I just wish we could tell our brains that at night.

For me though sleep has been really good when I haven’t been partying! Last night I was a log... I slept for about 9 hours!

I have been lucky enough to know a friend who has had the best news... The canSer that was in his lungs and adrenals are either gone or dormant. His oncologist has said that technically the canSer is dead. Wow! He was given a terminal diagnosis two years ago and now he seems to have conquered it.

He is great at research and has adopted many aspects of the ten point plan that Pete and I created including mindfulness through mediation and treatments, diet, supplements and complementary treatment. I felt over the moon for him but was pretty disappointed that I am not the one with dormant canSer. But he kindly gave me words of advice and pointed me in the right direction to make some small tweaks to my supplements. This information will be updated on my website later in July. For now I need to stay positive and hope that the lack of intensity with conventional and radical treatment over the past month isn’t going to put me on the back foot.

Triple negative breast cancer is a complete bugger. Seeing my blood test results and noticing that it says that the canSer growth is rapid scares me, but then I think well hang on. It’s been rapid for the past five years almost and I am not doing too badly at all. It’s time to kick this into touch though.

I’ve had enough of chasing my tail. It’s time to get ahead....

For now I’m using all my energy doing my morning rituals, inhalations, medications and more. I keep on top of appointment planning but for now instead of wallowing and worrying I am sunning myself in 30 degrees cooling off in our paddling pool!

As usual my wonderful hubby is being a rock. He continues to crack on working hard, worrying harder and keeping me happy. I honestly couldn’t feel happier with my life, all apart from the annoyance that canSer brings.

Sunshine and butterflies to everyone..... XX

Tags:

Almost at the end of my birthday celebrations.. Just one more weekend.

by Claire25. June 2015 14:01

 

I’m sitting here in what feels like summer heat but no sunshine. To be expected in England. But I don’t mind. I have the last of my birthday celebrations this weekend when I am being taken to Cornwall by my hubby, back to The Scarlet hotel. I am really excited!

To be honest I am all ‘birthdayed’ out and am looking forward to normality... Hmmm if that exists!

I have been trying to get back to a routine and have to admit sleep is returning back to normal.. Ye-ha! I love my bed!

I am a little frustrated as I am still waiting to hear back from the lab in Greece and Dr Nesselhut to book an appointment for my next visit. I am trying to stay positive and not let fear get the better of me. My next scans are confirmed for the end of July. I keep thinking maybe I should go and have a TACE session with Prof Vogl soon just so I am having something that I know works for me. But I am reminded again that one maybe not be very helpful.

When will I ever learn patience? I am not sure that is something a canSer survivor has. If I sat waiting around then I am sure I would not be here.

Yesterday I had training on how to edit my new website. It isn’t quite ready to launch yet but hopefully once I have updated all the information then people will find it really helpful. Lots of work to be done......that and knitting. I have abandoned the knitting recently but babies are going to be born soon and I haven’t made them a blanket! Ha ha!

Keep an eye out for some lovely pictures of this weekend in Cornwall... I’ll post them next week.

Cya!

Tags:

Triple Negative

I made it to forty! Woohoo!

by Claire17. June 2015 15:51
It’s been and gone already! Can you believe I made it to forty? I have to admit I doubted I would actually make this birthday when I was told almost three years ago that I had a limited life expectancy. I put my fortieth birthday as a goal and when the brain tumours arrived at the end of last year I have to admit I had a sinking feeling. But that’s life and all the excitement it gives.. You never know what’s going to happen next and for me things have so far turned out fine. Milking the celebrations we were surrounded by close friends at the weekend and we partied the day and night away at home having a BBQ. Despite the aftermath of cleaning and washing it was worth it all.... absolutely hilarious. Monday was my actual birthday and my Bear took the day off work and we mooched in London. Never forgetting about having a terminal disease I also coordinated visiting the Biolab in London for some bloods to be taken. Since I saw Dr Nesselhut last he has had a meeting with the head guy from RGCC, the company does that all the blood tests for chemosensitvity. Both men decided that they think they may be able to create an antigen to use on me for the specific canSer that I have. This means completely personalised treatment. I don’t really know much else. As expected I have been kept in the dark despite asking over and over by telephone and email what is happening, what do I need to do and when can I have it done? Luckily I did find out that I needed to have blood drawn to be sent to their lab in Greece. So this is why I thought I would get it done on Monday, my birthday. The blood is now winging its way to Greece and I await some sort of confirmation what is going to happen next, however I feel that I will calling for the umpteenth time next week. I am concerned I am not having enough treatment and fear that my next scan results may not be brilliant. I am aware I have had some indulgence recently but life should be lived and I am not about to shy away from a good party when I know I bloody well deserve it! I have dates for my next MRI and CT scans- the end of July... can you believe that will be three months from my gamma knife procedure? Back to my birthday, (well it is all about me!)Pete and I had a lovely day walking in the park, eating tasty food, shopping (naturally!) and then headed home for some cuddles and much needed good night’s sleep. This forty lark isn’t so bad. I don’t feel forty. I hopefully don’t look forty and I certainly don’t feel I am coming to the end. It’s so bizarre how the head rules. I know I can conquer this.... So right now I am at my mum’s in not so sunny Poole, continuing the celebrations further. I miss my Bear but he has to work, so instead us girls; me, mum and my sister will make the most of it. They have something up their sleeves for me over the next few days. How exciting! I have never felt so loved and spoilt from all the lovely gifts and good wishes as I have done this week. I really cannot be happier that I am still here to see this age. And as much as I know my Bear will say, he never had any doubts about it. I did not. I now know I can do anything I just have to believe it. Research and trials are moving fast and we just have to keep going until they can keep us alive indefinitely. I bid you all a ‘speak later ‘until I am settled back at home next week. Life is going to settle down just briefly before the next birthday celebration in a few weekends time...This is one birthday that I will never forget. Thank you one and all... (Bear I’m missing you... Mwah!) A big fortieth Light and Love. Claire XX

Tags:

The pursuit of happiness....

by Claire8. June 2015 15:40

 

I’m in the month of turning forty. I have always been a greedy girl and have stretched my birthday celebrations out for as a long as possible, usually a week, but as this year is a milestone and one that I was doubtful I’d achieve, I have made it extra long. So celebrations started last week on holiday. My birthday isn’t for another week and I will be continuing the celebrations right until the end of this month!

We have just returned from a week holiday with special friends in Ibiza. We bid on an auction prize at our charity ball to stay in a stunning villa overlooking San Antonio bay, Ibiza. Not just any old villa. This villa had an infinity pool, with modern facilities including a projector room and DJ decks so we could have own party. Lucky for us- we also had our very own resident DJ!  Thanks Brendan!

We knew it was going to memorable and my special birthday treat. The friends that came also thoroughly enjoyed it and the week was filled with belly laughter, love, sunsets, more love and stunning views all wrapped up in a week of relaxation in the sun and partying until all hours of the morning. I am as brown as can be and so tired! But as content as a kitten. We met with friends that had organised and donated the prize and couldn’t feel any more gratitude than we did and still do.

Sometimes it’s so overwhelming with the generosity of others. We are so touched but so very thankful. I’m such a lucky girl. And I never forget it.

Having a week away does mean I tend to forgo my usual routine of taking tablets and doing my rituals. But I believe it’s good to mix things up and keep the body guessing. Right now though I am wishing I had had more sleep as I am struggling. I don’t know how my friends are coping as they are all back at work. Pete was up at 5am and off to the gym to continue on his quest for wellness too.

I don’t have regrets, well maybe a few, but I am dealing with those on my own and that’s a whole other healing journey. But it was so good not to have to think about canSer every second of the day. I didn’t have time to, amongst all the laughter and jokes. It is so important to be surrounded by the right people. People that support you on so many levels and have respect for each and every one of us.

Since coming home, the love and support from that group hasn’t ceased. We are missing each other terribly and the puns and jokes continue. I looked in the mirror yesterday and despite my skin looking old, dehydrated and creased from too much sun (and almost being forty!) I spotted a new laughter line around my mouth. This made me smile. How much smiling must have I been doing for this to be so apparent in just one week?

I don’t ever really get the holiday blues as I love being home so much and this was no different. On our return my kitty cat was actually quite welcoming, running to the gate and crying out as soon as we reversed on the driveway. Then we scanned the garden to see how much had bloomed in just seven days. I relished in unpacking and watering the plants whilst Pete washed the cars and I begun to do many loads of clothes washing. I put clean sheets on our heavenly bed and knew it was going to be the best night’s sleep EVER!

Yesterday the sun shone and we decided the holiday hadn’t yet ended and we spent the afternoon sunbathing and chilling to music. My gratitude levels have gone through the roof and we had a little dance in the garden as if we were still by the pool at the villa with our friends. It’s not hard to understand why I love my life so much.

As I said the fortieth birthday celebrations continue and the forthcoming weeks I have a lot planned and lots of friends and family to celebrate with. I am feeling a little overwhelmed and right now think I may have over egged it! But I am sure things will settle shortly.

Whilst away I checked emails and waited to receive an email from Dr Nesselhut regarding my next treatment round. I did get an email but as expected I am now trying to drill down and actually book dates and proceed.  This always distracts me but it is essential.

I think I must be worried. I have been having very vivid dreams and they have been featuring new tumours in random places and not being able to treat them. I am very concerned about not making it to my fortieth birthday, which is only a week away. I have had it in my head that I somehow wouldn’t make and everything seems so surreal. I don’t know why, but as I am feeling so well surely this is unlikely. I guess in the back of my mind is, do I have confidence in nivolumab yet? That last scan really bothered me and with all the positive that was in it, I felt it was tainted with new tumours in my right lung. Bloody canSer....

 

So this morning I am back to it; meditation, yoga, not so much exercise sadly, (I didn’t feel like it) heat and air and more... I’d like to say I feel energised but I wonder if I am actually missing my Bear. I feel a bit low and extremely tired which is mad when I slept for more than 9 hours last night!

On the night of our return we decided to watch a movie called ‘Hector and his pursuit of happiness’. If you haven’t seen it I’d highly recommend it. It’s very thought provoking and humorous and had us asking the question what makes you happy? It felt quite apt because we had just returned from a place of beauty surrounded with happiness and laughter and we felt quite scared of the future- of what is around the corner. The biggest thing for me is fear stops me from being happy. As Pete pointed out we are all going to die one day, it's just a matter of when, but I haven’t come to terms with the fear of dying...not really. And that makes me afraid. It stops me from being happy.

Then weirdly enough we awoke on Sunday and watched the news on BBC 1. They had a feature about a guy who written a book on happiness. I mean what are chances of that? We both looked at each other and thought, is the Universe or God trying to tell us something? Teach us?

We have both been laid heavy with worries prior to the holiday and those feelings will inevitably creep back in once life returns to ‘normal’. It really struck a chord with us and now we are on the pursuit of finding out what makes us and others happy. Not a bad subject to study and research...

I am rambling now and I feel a little light headed. There is so much to think about but I don’t want to get embroiled in meaningless thoughts... I have too much fun and happiness to have.

 It's good to be back...

May the gratitude continue.....Light and Love. X

 

Tags:

Triple Negative

Herpes to spark an immune response.....

by Claire29. May 2015 15:08

 

Another week has passed and there’s not much to report. In the news, canSer is still cropping up with research about herpes being able to spark an immune response and they are now using it for certain trials and canSer types. This is very similar to what I have in Germany with the Newcastle disease virus.

Also they are going to be opening a canSer immunology centre at Southampton hospital. We knew they were doing trials there for melanoma and lung canSer etc but now it seems they are actually going to be dedicating some money and resources to actually having an immunology department for treating canSer patients. Things have been changing slowly for canSer treatment, apparently for as long as ten years, then why are we still treating people with chemo alone?

For me, I feel much better now. My arm has gone back to its usual size. It still has a little lump at the site of the injection and is a little itchy but nothing to shout about. I feel generally well and have been exercising and plodding along nicely.

I have been contacted by the Care Oncology Clinic, whom I am prescribed drugs such as mebendazole, atorvastatin and so on. They use drugs that are ordinarily prescribed for other ailments such as metformin for diabetes and have noticed through research that they could be beneficial for canSer, particularly breast canSer. As you may remember I have been taking metformin for nearly two years but added mebendazole and atorvastatin in October. I do not know if they are working but as they do not give me any side effects I feel it is necessary to continue.  I spoke to one of the doctors there this morning and have scheduled a review in July.

I was also contacted by the Daily Mail to have an interview regarding this subject. I will let you know when I am featured in it.

Although I have felt generally well I haven’t been getting on well in the evenings. I have now returned to taking all my drugs and supplements and I don’t have any trouble keeping them down in the mornings. I am even making my own fresh green juice again. This is a revelation ever since I went off them at the end of last year. Then in the evenings for some reason I feel quite nauseas and have to vomit not long after taking my evening combination. I have tried taking certain things out and eating before, during or after. Some nights are fine then others not so. It’s ruining my evenings and evening meal, in particular. I will have to keep making changes and see if there is a certain culprit.

I have felt quite tired this week also and have been taking iron supplements in case my bloods need that helping hand. I have felt a bit light headed but nothing like it was before.

Emotionally I feel ok. I try so hard not to think about canSer all the time but it is so hard. I don’t want to take anything for granted and always want to try my hardest at beating this thing. I do wonder what might happen but it’s all such a waste of time wasting my energy on what may be. But for the next week I am going to be thinking of nothing but having fun and relaxation.

Bear and I are off for some sun and fun with friends. It’s the prelude to my ‘big’ birthday in a few weeks and we are very excited! Technically, our holiday starts tonight when Bear gets home from work.....I can’t wait! Light and Love! X

Tags:

Triple Negative

An arm like an Elephants leg and Pacific Sea Snail.... can it get any more weird?

by Claire20. May 2015 20:24

 Time really does fly. I can’t believe it was the 8th May when I last blogged.

This lapse in time could be a good thing of course. It means life has been trundling along nicely, just letting life runs its course. This month has been lovely so far and I have been busy at home and with hospital appointments and so on. It’s all been pretty normal. I like normal.

Today I am having a day on the sofa recovering. We just got back from Germany after having treatment at Dr Nesselhuts clinic. It’s been six weeks since I went last, but it’s not as if I haven’t had something going on in between. Let’s not forget gamma knife surgery! How could I? The holes in my head are better but it’s still tender to lie on them and if I frown too hard my forehead hurts! Ha-ha!

We travelled on a very early flight and as usual didn’t get any sleep that night as we were too worried about not waking up in time!

Day one started with blood tests and an infusion of Nivolumab. I don’t get any side effects from it so that’s good.

Day two was slightly different than normal. This time I asked to have infusions of B17 and DMSO, just like I had had in Frankfurt at Dr Seibunhuners clinic. I had overheard someone the last time I was there having it. Now, I’ve been going to Nesselhuts for years and didn’t even know he offered it! I figured that based on the RGCC blood test I had done a year ago, that anything that the canSer in me didn’t like I should have. Get as much ammo as I can. But first I had about 250ml of blood taken for my next visit for DC therapy. I was told that my bloods were better this time so they could take the blood. Great news....

Then I had hyperthermia on my chest whilst having an infusion of B17 followed by an injection of DMSO in upper right buttock as well as a shot of Newcastle Disease Virus. Then about an hour later we met with Dr Nesselhut who gave me my vaccination in my left arm. It sounds a lot and it probably is.

When I left the clinic I took the print out of my blood test. I am a bit weird I like to keep them to see how well I am doing. This is when I noticed that my bloods weren’t as good as the nurse had told me. She had confused the dates and the ‘good’ results were in fact the last time I was there in April! My bloods this time were terrible. My haemoglobin has reduced to 8.6. The recommended amount is 12-16. Boo, double boo. I got straight onto email to my oncologist, Prof Harris who said it isn’t that low really for someone having treatment and not worry about it. He wants me to have it monitored to see if there is a trend but for now if I am feeling ok, just keep on trucking. Luckily I don’t feel massively out of breath or more tired than normal but I will try to get those bloods to improve! Pete is threatening with feeding me liver... No way Jose! Urgh.... It takes me back to being a kid, when Mum cooked liver and bacon for tea on Saturdays. I hated it then, I can’t see me liking it now!

For the first time in nearly three years we saw Dr Nesselhut on time. Brilliant! He had a lot to talk about as usual and we discussed the fact that things had been going well but I did have a few new tumours in my right lung. He got straight on the phone and spoke to his lab and told then they need to make changes to my vaccination. I reminded him about an email I had received from his clinic stating they were going to give me a tetanus jab at the same time as having my vaccination to spark an immune response. This wasn’t just the usual DC vaccine as Dr Nesslehut felt that after 5 months and slight progression he would look to stimulate my immune system in other ways – so he added KLH. This is Keyhole limpet hemocyanin. This is a metal carrying protein that has a variety of jobs, including carrying other proteins, enzymes and vaccines. In this instance the origin is the relevant bit. The KLH comes from the giant keyhole limpet (so a sort of sea snail), which is found in the northeast Pacific off the coast of California. It is “thought” to be non toxic and has already proven results in producing immune response in bladder canSer. A litre of blood from a keyhole limpet will produce 20 grams of protein, which can be worth as much as $100,000!!

 As usual it stung and I had an immediate reaction of the skin becoming raised and red. This I believe is good. The thing is it hasn’t stopped there. It became quite a raised a lump and right now my arm is like an elephant’s leg!

Am I concerned? Not overly but it is really uncomfortable and itchy and so bloated that the skin feels tight and red. It has also travelled and grown and now my whole arm is distended. This isn’t the first time I have had such a reaction but this is the first time it has been so uncomfortable.

We discussed what should happen next. When should my next appointment be? He is meeting with the top guy from RGCC next week and they are talking about making personalised treatments and vaccines for patients, using antigen testing. They should then be able to tell me what fires the canSer inside me and then hopefully provide a personalised solution. Wow, this could be ground breaking.

So that’s how I have left it. We have no idea of when I am going back or how much something like that could cost. I await with baited breath.  All I know is that I am booked in Nesselhuts diary to be discussed next week and then I should get an email.

We then left feeling satisfied and still in disbelief that we had been seen on time! This made us laugh as we now had seven hours till our flight, but that was ok as we could take our time getting to the airport.

We got to the airport with four hours to kill and ordinarily this wouldn’t matter but I was starting to feel the effects of my ever growing arm and now side effects such as fever and shivering.

To top it off, (Boys you might want to close your eyes right now) I then got my period! I haven’t had one for over five months mainly due to treatment affecting my body, so I am elated my body has returned to normal, but also timing couldn’t have been better! Argh!

Then came the fun part.... our flight was delayed until after midnight! Argh again! We laughed about it at first because on the way in the car I had said, ‘I bet our flight is delayed!’, because we were having such a good day with getting everything on time. God had been listening and Sod’s law came into play. It happened. We have never had a flight delayed at Hannover. Not the best day for flight delays. I progressively felt worse and when we eventually got on the airplane I was shaking, feeling hot but freezing cold. Boo!

Pete was getting ever more tired and had to drive us home when we got back to Blighty. He did such a great job and didn’t moan once. He was so tired and even got up really early this morning to go to work. He left me in bed and told me to stay there. Well, I did for a while but decided to transfer myself to the sofa and now I have been getting on with some jobs and organising myself for the next few days. Never fear... I will be hitting the sofa again straight after typing this.

I have to say I still feel rubbish. I don’t have shivers or fever thankfully. But my arm is driving me mental! It’s stiff and bloated and itchy and can you believe something so minor is causing me so much discomfort? For goodness sake I had a frame screwed to my skull a few weeks ago and I moaned less!

I said to Pete whilst sitting on the floor at the airport, ‘As things have been coming true today when I said them out loud, maybe the response in my arm and body is proof that the treatment is going to be exceptionally good this time. Maybe it’s going to send the canSer packing!’ I put it out there for the Universe and God and Sod’s Law to hear.... now make it come true!

Whilst away I was checking social media and heard the tragic news that a fellow triple negative lady had passed suddenly. Jojo Gingerhead, as she called herself, wrote a really funny blog and being only 32 years old was too young to be going through this horrible journey. I was so shocked and saddened at her death as only a few weeks earlier we had been chatting about treatments and how I could help advise her. At the time she was on chemo and wanted to sit that out before trying to raise funds to go to Germany. I had suggested TACE as a tolerable targeted treatment with immediate response, but it seems it was too late. She was already in a lot of pain and on morphine to ease that pain. Our love, thoughts and condolences go out to Jojo’s family and friends and we want them to know that she still inspires us to keep going and to find a cure.

Getting news like that does spook me. I don’t want to suffer in pain and I don’t want anyone else to either. People leave it too late to really stop the canSer and what we would really like is for every triple negative survivor to seek help and get treatment to prevent it returning or stop it in its tracks. Not to leave it too long when the body is weak and cannot fight it. This got us thinking.

If all triple negative ladies could read about my experiences and the treatments and experiences I have had personally, maybe they could take something away from it and they would live to tell the tale and be alive and kicking for many years to come. We are so close to a targeted treatment for triple negative breast cancer. No one will ever say cure, as they don’t believe it will happen but as Nesselhut always tells me, ‘All I want, is to keep you alive to have a good life’. As much as I want complete remission and feel sad when I have small setbacks, he is right. If I can continue for years to come without symptoms then I have cracked it.

This is why I have decided to update and upgrade my website. I have my hubby and friends (Bless you Adam) on board who are helping me have a logo redesigned and the website to be updated so that I can add all my new experiences and research to it day or night. Thanks to the hundreds of people who helped me with making a decision on the logo yesterday. It is so interesting hearing all your points of view. It really helps.

Once it’s complete and I have updated it I will let you all know! I am very excited. Even if I can help just one person before its too late then I’ve done something good.

I met with a friend recently (over afternoon tea, don’t you know, –said in a posh sounding voice!) who told me of a lady who lives in her area who also has triple negative breast cancer and is trying to raise money so that she can go to Germany and have treatments. This got me worried and excited all at once. I wanted to make sure she was going for the right kind of treatment and also not to one of the clinics with a ridiculous price and limited clinical experience, so felt the need to contact her. Her name is Louise and here is her website and blog: http://www.cancerispants.co.uk/

Actually her daughter, Ella started the web page for her and tells the family’s story. Please go and support her and if you can, help fund her on her way. I will be speaking with her tomorrow and hopefully helping her with more details for her trip. She seems lovely and I am excited at having a new friend.

Right, now me and my bloated arm are going to hit the sofa and whine and moan to myself all evening. Sometimes it’s good to wallow but not for long though! Back to it tomorrow. Onwards and upwards.... Light and Love all. Hugs. X

Tags:

Triple Negative

GcMAF- Unfairly interviewed or a fair synopsis?

by Claire8. May 2015 14:11

 

I forgot to mention in yesterdays blog about the interview and discussion on the The One Show this week regarding GcMAF.

I was shocked as I was making dinner earlier this week when I heard a reporter discussing GcMAF on National TV. I would always hope there is a fair impartial view on such things but sadly in this case there was not.

She slated GcMAF by stating there is no scientific evidence that it works, that their lab has been shut down as some of the vials of GcMAF showed not to be suitable for human consumption.

Then she interviewed a support group who use GcMAF followed by the MD, David Noakes.

It is no secret that I am unsure about GcMAF in some ways mainly their manner in telling one that if you do not administer GcMAF in every single way that they recommend then one will not survive canSer.

I went to have a week’s treatment March last year. I didn’t find it hugely professional but on the other side I think it did help with hindering the growth of my current tumours. I came home and continued using it by injecting it as well as inhaling it for about three months. The reason for stopping was mainly due to starting immunotherapy with Prof Dalgliesh and also having radiofrequency ablation.

At that point I did decide to start using the Bravo probiotics which contains GcMAF, which I still use daily now. My main reason is to strengthen the immunity in my gut.

I felt saddened at the interviews. The interviewer wasn’t a scientist or a doctor but she was very aggressive towards everyone she spoke to. We all know there are two sides to every story.

There may not be scientific evidence that has been run by the UK government or NHS as yet, but there are scientific papers that the doctors who work with GcMAF have undertaken and published. They have also been present at many symposiums and they have grown dramatically, even since I went last year.

This doesn’t mean it is a ‘miracle cure’ that they profess it to be but as one lady in the support group mentioned, ‘When you have been told that you have terminal canSer then any option is better than none.

I didn't experience any side effects and felt fine throughout. My gripe with them was how unprofessional they were as company and I felt they were very flaky. The clinic I went to was a stately home and very odd. Others I met there were thrilled with the environment and the people running it. So each to their own.

I took an instant dislike to David Noakes who I first encountered on email. He was obnoxious and very unlikeable. I believed he didn’t want to help people, he wanted to make money. I then met him on my last day at the clinic when he was just as obnoxious and self centred.

Not only that, after I returned I emailed GcMAF (by the way, there was only one email address to contact them on and you never knew who would reply)as they had asked me to basically, write a testimonial, so I took the opportunity to give them an honest synopsis of my week and how I felt. Of course this didn’t go down very well and David Noakes replied telling me in a nutshell, that I had only done 20% of the treatment plan they recommended and that it was my fault if I failed.

I remember my late friend Leanne, who called them to get more information and she happened to speak to David Noakes who guaranteed her a 100% success if she used GcMAF. No one can say that?! This was my biggest problem with them, is that they let someone like him front the company and make spurious claims!

I think there is something good about GcMAF otherwise I wouldn’t have used it nor still use the probiotics. But I do feel very sad that it has been slated on national TV and they weren’t given a chance. However, maybe this is what they needed to shake them up and become more professional.

I have checked online and it seems the US did a clinical trial last year using GcMAF.
I have also checked GcMAF’s website and it is now not possible to purchase the product from them directly.

What are your thoughts and views on GcMAF?

 

 

Tags:

Triple Negative

Am I being a spoilt brat?

by Claire7. May 2015 14:32

 

Mum has gone home this morning... We got so much done whilst she was here; sewing curtains and knitting blankets and gardening and more. Poor mum doesn’t get any rest whilst she is here! I hope she didn’t want one!  It’s nice for her to be home I am sure but I always feel sad when she goes. We wish we lived closer to each other so we could see each other more.

Scan results:
So the all anticipated CT scan results finally came through yesterday by email. As predicted they were not ready on Tuesday at my clinic appointment with the Prof. That was disappointing as I sat there for over two hours. So I pursued my results by email and the Prof‘s secretary was hugely disappointed as she had asked the radiology department to have them ready for me. I am not surprised.

I got them yesterday and wanted Pete to read them first and decipher them in his way but the attachment on the email bore a hole in my head. I couldn’t wait nor help myself. I have to say I was disappointed with what I read.

I expected more reductions and even less tumours. And essentially the scan results are good but in my usual way I see the negative as a big setback.

Basically the positives are;

None of the tumours that were present in February have grown nor have they reduced. They are stable. This is great, essentially.  The mediastinal lymph nodes are still subcentimetre. There is no mention of the hilar node- so maybe that isn’t there? Great!

There are no new ones in my abdomen or liver and no mention of that one that was there in my ovaries. So that has gone too and stayed gone since February.

The spine still has the stable predominantly sclerotic vertebral lesions. No change there then.

The negatives;
There is a cluster if several new progressive right upper lobe coalescent peribronchialor nodules that lie inferior to the largest tumour in my right lung. I am not sure how many several are and if that means cancerous but I am guessing it is.

This really got me peeved. I was so happy with my brain being so successful and really hoped my body would emulate it.  I can’t help but feel disappointed. It’s like whatever I am doing is never quite enough. I am never doing more than enough; I am only doing just enough to get by.

I have sent the results to Dr Nesselhut so he can plan my next treatment whether it is still continuing with nivolumab or not. He is away until Monday so I have to wait until then.

In the meantime I have been messaging the Prof and asking some questions but his secretary is off until Monday also. I have running through my mind how I feel and as time passes and I settle I become more rational but I felt grumpy and upset initially.  Enough isn’t enough for me. I want more. I guess that good as it keeps me fighting but it also messes with my head. I sit thinking what have I done differently? What could I do differently?

Pete thought the results were great and said I have focussed so much on fixing the brain that now it’s time to focus on the body. Maybe I have but I really believed I had nailed it especially as I feel so good lately, (although ever since gamma knife I am feeling a little more tired than normal.)

If I look at my previous scans from last October onwards, I have done so well. I have reduced and resolved tumours. I mean come on.... but I need it to continue in the right direction. I guess I just want some leeway, some respite from having to be so intense and I so wanted to be able to have treatment less and less. This was assuming that nivolumab was the answer. I now feel that I may need to go and have TACE again. I will discuss it once I have spoken to Nesselhut.

My bloods are also low again; haemoglobin, blood count and red blood cells etc. I don’t know why and I certainly don’t feel light headed. Maybe it’s because of the gamma knife. I will increase my iron intake with foods like beans, pulses, spinach etc, but Prof has told me in the past its nothing that diet can change. No harm in trying.

Head update:

My head has been changing daily since the gamma knife procedure. I have had tingling and numbness and now my temple is very tender on the right. The entry wounds are healing brilliantly but I do feel ultra sensitive when I lay down. It doesn’t help that I keep banging my head. I always was a clumsy person! I have felt nauseas and been sick a few times but I think that could be anxiety at times.

The C Word:

I watched the programme Monday night with my mum and Pete. I wasn’t looking forward to it but know that Sheridan Smith is an amazing actress and would do a great job of it. I have the book already but have never read it. I have to say it was very powerful but I felt quite angry throughout it. I felt they focussed so much on hair loss and looks. I know this is so important for many women but they didn’t really go down the secondary cancer route. I felt frustrated that many people will still believe it’s all over once  it spreads but I hope to show everyone that I can beat it or at least stay alive until they find that treatment that will keep it stable for many years. I haven’t done too badly so far as its now approaching three years of having secondary triple negative breast cancer. It was hugely emotional and I felt unsettled after as I so don’t want to be a statistic and be another young woman dying of breast cancer.

News of Rio Ferdinand’s wife dying has also been hard to stomach this week and all it does is make me worry, I think. I know how fragile life is anyway but I hope things don’t turn for the worse. I feel so sad for Rio and his family and it feels like every where I look some young amazing woman is being taken from her family. (Watching the Restoration Man last night also had another young mum die of cancer) I can’t be ignorant and pretend it doesn’t happen but it makes it so hard to think am I going to be next? Or how long do I have?

I don’t think any of that has been helped when I went for a smear test yesterday (close your eyes boys, you might not like reading these intimate details!) Ouch, ouch, ouch!!!!! That’s exactly what I said to the nurse. It bloody hurt like hell this time round. I’m being a pansy after last week’s procedure but OUCH!

 

I spoke to a doctor at the Care Oncology Clinic earlier today and told him my results. He said that I should feel really positive and sometimes things like the new nodules could just be inflammation and not to read too much into them. He has re ordered Mebendazole for me and I will see them soon to discuss the drugs they put me on back on October; Metformin, Mebendazole and Atorvastatin.

 

Now I have put all this down on ‘paper’ I feel better. I feel a bit silly that I am moaning when I have got it so good and actually things are great for me. I just want them to BETTER! I want Pete to have some respite too. This is so hard on him every month. The cost, the upheaval, the decision making on what we should do next. I wish the bloody NHS would make nivolumab and ipilimumab accessible to the masses. Hurry up research! I ‘m being a spoilt brat now, but I want to think about something else.

It doesn’t stop Pete and me from having fun and loving each other though and that’s what we have to do. All there is... is LOVE.

I’m off for some iron rich food and to try and dodge the rain whilst hanging out washing. It’s the simple things that keep me going.

 

Light and Love.

C X

 

 

Tags:

Triple Negative

I'm a brave little soldier, my Mum told me so.....

by Claire30. April 2015 14:30

 How do I start?

Tuesday I went to St Barts and was given the low down on the gamma knife treatment that I was having the following day, Wednesday. I was given in full details of what to expect. I think it is to ensure you prepare for the worst. All it did for me was make me cry and want to run for the hills!

The extremes of how bad things were going to feel, such as injections, the head frame and so on. Seeing the machine and where my head would be screwed to the bed did nothing but fill me with fear. Fear of what? They weren’t going to hurt me.. Well this is typical ‘me’. Fear of not being able to move for up to two hours! Argh!

I did my usual of coming home and off loading onto Pete and spent the whole evening in bits. We were going to be getting up at 4am because they wanted to start treatment at hospital at 7.30am. Ok we don’t live that far away but if we aren’t sleeping and we are worried about getting there on time then it’s best just to get on with it. Well we both woke up at about 2am... standard worrying time.

Pete had prepared a bag of things I would need for the day plus some food and drink and a sick bag in the car... I am not sure if he thought I would need it for the journey home because the aftercare advice mentioned nausea and vomiting. Well it didn’t get used on the way home. It got used on the way there. So much anxiety meant that last night’s dinner came up (weird that it hadn’t digested after ten hours but that’s another discussion) I was fine after I had relieved myself of all the wretching.

On arriving at St Barts we met the lovely clinical nurse Liz, who had been taking care of me from the start. I think in a very clever tactic they got me straight in at 7.30am. I was first, between me and one other lady. I walked into a room with five other people all waiting for me and a chair. Gulp. I sat down and was introduced. I have no idea of their names... I was too busy having a quiet nervous breakdown. One lady put the head frame on my head and stood and held it there whilst a doctor went round and gave me four injections of local anaesthetic of where the ‘pins’ were going to enter my head to keep the frame still and secure.

I was warned the injections would feel like bee stings. Yes they hurt but only for a few seconds. I didn’t expect them to bleed but I was being dabbed all the while. Then came the screw drivers! Yes screw drivers.. Pins, my foot.. They screwed the head frame on and what I felt was pressure as they got tighter. Liz, the nurse held my hand and stroked me the whole time. Apparently that was the worst bit over I was asked continually if I was ok. I think it was because I physically shaking and my jaw was chattering. Not a good look. ..Then they took me straight in for the MRI scan to get really clear images so that they could plan the gamma knife treatment. I was given 3 batches of contrast dye. This is so they could see absolutely everything, so if there was any other tumour trying to make its way they would notice it.  Luckily, they advised me there was only one tiny tumour in the left frontal lobe. No extra surprises... that’s what I like.

I hate MRI’s at the best of times but this time I had a head frame on as well some plastic attachments. It was only for twenty minutes and all I kept thinking is this is going to be a doddle compared to the gamma knife. Never will MRI’s be scary. So that’s one positive so far.

So far so good. Of the things I had been advised already I had completed two of the major events and all was fine and dandy. I didn’t experience any pain in my head from the frame as I was well and truly numbed.

                                                

Then we were transferred to the gamma knife centre where I sat for about four hours waiting for Dr Plowman to come down and see the plan his staff had worked out for me. That was ok as I had Pete with me and I was given plenty of tea and yummy snacks. Time flies by really when you are in a daze and everything seems so surreal. Having so much adrenalin running around the body and also feeling so tired from lack of sleep can also make one feel bizarre.

Eventually I saw the jolly doctor who I really like, mainly because he calls me, ‘young lady’. Haha.

Pete spent the day cracking jokes.. I am not sure if the staff found them funny  or if they heard them all before but I thought it was hilarious. He didn’t think Liz the nurse liked him because when I was taken into the MRI room when I was having the contrast injected he stood outside the door taking my photo and doing little dances and smiling. She told him to sit down a number of times. Haha. Then he accidentally started playing rap music in the waiting area! Haha... Oh I am laughing right now.

Here’s a few jokes to wet your whistle;

‘She’s not in the right ‘frame’ of mind’

‘She won’t be bolting anywhere!’

Tehehehe....

Once the doc left I was taken into the gamma knife room and laid on the table where they screwed my head to it so I really couldn’t move. They said I was allowed to scratch my face and cough but to be really careful because if I touched the machine it would take several hours for it to be corrected and ready to use. Great. Being told stuff like that just makes it worse! I was not going to cough or scratch my face no matter what! The good thing about the gamma knife machine is that it is larger than the MRI. It isn’t right in your face so I felt less claustrophic and they don’t put you in it very far either. Luckily for me also the treatment time was reduced to about 45 minutes as Ii only had the one tumour and it was easy to get to. I was delighted with this news. They also asked me if I wanted to play my own CD. I listened to chilled out Ibiza tunes and worked out how long each track should be so kind of knew when I was going to be finished. It totally chilled me out and I actually dozed off for a short while. That part of the treatment was the easiest. I didn’t feel a thing. I didn’t get stiff or achy luckily and I was so happy that it was all over. As soon as they got me up they removed the head frame. This was really weird. The screw drivers came out again and the noise as they undid them was horrendous! Little oozing holes dripped, which is to be expected and it felt really odd as the pressure increased not decreased as they released the frame.

This is when the pain starts. I rested for a few hours and they gave me pain relief, whilst the head sorted itself out.

                                                  

I was discharged not long after having lunch and then came home with my Bear. My head is sore where the entry wounds are and I have been advised not to get my head wet for a few days. I have two little plasters on my forehead( which makes me think I have little horns growing!) and they left the ones at the back of my head open. They are all oozing ‘stuff’ and blood. The back one has bled the most and it’s a tad uncomfortable to sleep on them.

I have been warned I could get black eyes and may have tingly from nerve damage on the head along with a whole host of other side effects that radiation can cause. Anything goes really. For now I am trying not to express myself too much as raising my eyebrows really hurts! Haha! I’m expressionless....

I am so proud of myself. I didn’t cry once whilst there. I wanted to run away that morning but I am so pleased it was no way near as bad as the nurse had prepared me for. It must be hard giving advice to patients when you have never felt it yourself.

Apart from the dramas in the beginning this whole experience has been amazing. From what I can gather not many people get it done on the NHS. I am thrilled to have had it done and they have advised me that if I get any more tumours I can have it done over and over again unlike whole brain radiotherapy. They seem to think metastases go completely when having gamma knife. Other kinds of tumours can return.
I reckon this brain has got it sorted, but what a thrill to have met such lovely staff. (Pete was chuffed to bits to meet an actual bonafide neurosurgeon yesterday- he was doing my treatment for me!)

Mum messaged me the night before and told me I am a ‘brave little soldier’.... I believe I was.

Today I am under strict instructions from Pete not to do anything and just relax, because even though I can’t see any wounds or scars it doesn’t mean I am not healing after having had surgery. I have tried but I feel pretty good apart from a bit of a sore head. I have been out for a short walk, done the hoovering, and floor steaming, a bit of washing, hanging it on the line and written this.. Oh and have been having a little window shop online too. Ooops.  I’ll lay of the exercise for today and do a bit of reading and knitting...

I cannot believe the support I have received from my friends, family and followers. Thank you so much, it really helps. I even received some beautiful flowers by post this morning... I am being spoiled.

Light and Love. X

Tags:

Triple Negative

Booked... for Wednesday!

by Claire27. April 2015 17:10

 

I had a call on Friday afternoon from Nichola at the Gamma Knife centre. She explained in huge detail what had happened at the MDT last Monday. She described how they saw my images and all of the doctors present were ‘astonished’ at my results. Only two months earlier there were four lesions present but now there is only one tiny one present in the frontal lobe, which qualified me for gamma knife treatment. She said most of the doctors, all except Dr Plowman, were not ‘fans’ of whole brain radiotherapy. Apparently it takes up to six months for whole brain radiotherapy to really have full effect. Nichola said she could understand that must be very frustrating. Anyway they would like to do the gamma knife treatment this Wednesday! Argh! Sometimes it is a case of be careful of what you wish for, because as much as I know this is really important and I want nothing more than to be free of brain tumours, the fear of having the treatment is daunting. As usual I am probably over thinking it, but knowing I have to have a head brace that punctures my skin in my head to be fixed in place fills me with horror. I do have local anaesthetic before they fit the head brace. Then there is of course the MRI machine and being strapped in the there with a head brace for about half hour or more. Gulp... I’m being a pansy. I know it will be fine.

Tomorrow I have to attend a pre assessment appointment when I can ask any questions and get the ‘heads up’ on all the info before my procedure on Wednesday. It’s an early start on Wednesday. We leave home for around 5am and start having the treatment at 7am. So it’s a busy week ahead as I also have a CT scan booked on Friday at my usual hospital. Then next week if radiology are kind to me, I will get my scan results at my clinic appointment.

This weekend passed in a flash and Pete and I had such a busy jam packed time. Doing what? Gardening and house chores. Sounds grim? Not for us. I love the feeling of achieving something and our courtyard is beginning to look a little bit Tuscan. That’s our aim...We just need the weather to match!

 

Tags:

Triple Negative