Ladies what lunch…

Today was a real treat. For a long time I have been in contact with a lovely lady who contacted me through the blog. She is kind and helpful and up until now just hasn’t found time to meet. We don’t live a million miles from each other so for the first time we met over lunch. A friend of friend came too and it was so refreshing to talk openly about canSer. We are all on the same path, slightly different circumstances and stages and canSers but we are the same. We are driven, we are doing similar treatments and going to lengths many others do but thousands don’t. We have all been to see Doctor Nesselhut, are experiencing different drugs and have all had horrible stories to tell about how awful doctors have spoken to us because we don’t conform to their ideas. But then became amazed at results and the extension of life.

I felt inspired to keep trying. I was given advice on my trip to Switzerland for GcMAF and what to expect. It’s very helpful speaking to someone who has already been.

I have been ensured the Professor at GcMAF is great and could even help with looking at my scans. Well that would be nice!

We were gassing for hours before I knew it three hours had passed. How time flies!

Once back I had to get ready to travel to Switzerland. Kitty knows something is up. She plopped herself on my lap for a cuddle. Bless her. Luckily for me Kitty has a kind ‘aunty’ who takes care of her….

A few turbulent days in Germany but well worth it..

It has been a hard few days. We left at the crack of dawn, well earlier actually, to get our flight to Hannover for our flying visit to Duderstadt for treatment with Dr Nesselhut. It was beautiful weather there and everything seemed great. We had good food and even better great company. On walking into our hotel we immediately met a wonderful Australian couple who were so pleased to speak to some English speaking people! Within minutes we had discovered that they were there for cancer treatment also. It was for their 29 year old daughter who has glioblastoma multiforme or GBM. This is a brain tumour that is aggressive and hard to treat and actually life threatening and shortening. Their daughter wasn’t given many months to years to live but defying all odds she is still well and all clear about three years on. This is down to her drive but also her families undenying love and passion to save her life. The father and mother have dedicated their lives to caring for her. Her father, Tony has done everything in his power and super skills at research to find the best possible treatments for her whilst her mother, Lyn has helped with injections and general caring. What a powerhouse. You can feel their love and boy you don’t want to mess with them!

Jenny, their daughter has had some radical surgery amongst some radical treatments but has come out of it well and currently all clear. That is why they were at Dr Nesselhuts’ and the Hallwang clinic. Their research continues and the treatment is there to find out what is actually causing the canSer.

We felt honoured to meet and spend time with them. They were genuinely very kind and were sharing so much information. Tony thinks that canSer is caused by either a bacterial or virus within the body. It affects the immune system and hides there. So despite treatments to eliminate the tumour it isn’t curing the cause. And that is what they were on a mission to find out. Jenny has had the RGCC test and is finding that a virus is harbouring in her system. This really does resonate with me.

I certainly believe that our bodies created canSer therefore it should be able to get rid of it. Therefore an antidote or treatment to get to grips with those sneaky canSer cells would be logical.

On Sunday night after a lovely evening with my hubby I woke at 2am. I hadn’t been for treatment yet and was feeling very shaky and sweaty. I felt like I was coming down with the flu yet had terrible upset tummy and sickness. Our thoughts were food poisoning but Pete had eaten the same as me. Whatever it was it made me feel awful for a good few days. I was determined to have treatment but knew that having Newcastle disease virus wouldn’t make me feel much better. So for the last few days I have been a bit of a wreck. I haven’t been able to stomach anything other than green tea and water. (And even the green tea I think was causing me issues.)

Yesterday we met with DR Nesselhut Senior. He is simply such a lovely guy. He always seems so positive and explained that the vaccination I was having was quite a risky one. Now they tell me! Apparently research shows that the antibodies they were using in a larger dose caused 20% remission, 40% stable disease and 40% death! Oh joy… Pete and I looked at each other- telepathically thinking we have time to get up and run! He also explained that in that dosage the cost was 100,000 Euros. But then the Doc explained that in such a small dose the cost was clearly far less and the response would be completely different… they hope!

I didn’t run and I am still here currently fine…

We were advised when speaking to Dr Hembry last week that we shold mention ‘antisense’ to Dr Nesselhut. Not really knowing much about it we did. Here is a link to general terms of what it is; http://en.wikipedia.org/wiki/Antisense_therapy

He said that he didn’t believe that breast canSer was caused by a virus but more by a bacterial infection that goes in through the nipple. I guess that makes sense. But we all know that triple negative seems to be tricky and nothing is really the norm when it comes to TNBC.  That said I had my blood taken to have a range of blood tests to see if I have any virus harbouring inside my body. No doubt it will be pricey but it would be interesting to know what is happening inside of me.

We travelled to the airport and made our way home. I long for home when I feel poorly. My bed was calling me and after a (bad) night’s sleep I do actually feel better. I don’t have cramps any more but do feel a bit light headed. I don’t think I will be exercising today but I do want to start eating.

There is much to be done, especially for Pete. He is trying so hard to run his business successfully and raise enough funds for treatments. But it is all worthwhile. As long as I can stay well and have options ahead of me then its great news.

Dr Nesselhut gave us an analogy of the different kinds of input we as ‘incurable’ canSer patients are give from ‘regular’ doctors. A man wants to climb a mountain. At the bottom the guide says, ‘You won’t make it. Don’t risk it’. The man climbs and gets half way to a hut for a drink. The bar man says, ‘You won’t make it to the summit, you will never do it’.

But, what if the guide at the bottom says, ‘You can do this, you can make it to the top.’ Then at the hut, the bar man says, ‘you’re halfway, you can reach the summit, keep going!’

Dr Nesselhut became very animated and was very passionate about it. Bless him. We understood loud and clear what he wants us to do. I won’t give up. I just cope better when I’m not feeling yucky from a stomach upset!

All in all it was a very successful trip and the highlight was meeting our new friends. We hope to see them again someday with hopefully amazing news.

 

                  Out for a lovely walk in Duderstadt.

Bangers to cancer…Controversial or not it’s raising awareness!

I felt compelled to share something with you and perhaps have a little rant…

The other evening one of my lovely clients who follows my Facebook page and blog contacted me with a gorgeous picture of herself shown below and sent me this message;

‘Hiya Claire! I hope your keeping well!! I just thought I would let you know that us Cornish girls are doing bangers to breast cancer (wearing a bra with a sign of how to donate then nominating three other girls to do the same) and mine is for you in mind!! I think you’re so brave and a massive inspiration to me!! I really admire you!! So far the girls have raised just over £2,500!’

 

I posted the image online and thought what a lovely idea and great way of raising funds. As for Michelle I didn’t know her background but it started as a rumour that it was in response to the silly craze that had started known as neck nominate where an individual downs a drink and then nominates friends to do the same. Michelle and her friend Vicky decided that they ‘could carry on this idea of “Neck Nominating” and put it to some good.’ As soon as the newspapers got hold of this they named it ‘Nip Nominate’. Let’s not take away the good will that these girls have tried to emulate.

Since then I have noticed newspaper articles spreading the word and sadly also slating the girls for sexualising breasts and belittling canSer.

Here are two articles from well known newspapers;

http://www.mirror.co.uk/news/nipnominate-boobs-pictures-neknominate-craze-3166346

 

http://www.theguardian.com/commentisfree/2014/feb/21/breast-cancer-nipnominate-pictures-bras-beth-whaanga

Someone raised the article above on my Facebook page and this was my response;

‘The main point from Daisy the Journo being supported by the phrase “If I had a mastectomy”. She hasn’t I have and once again, the focus is on appearance not life and love. Sadly she has missed the point that the physical may be enabling the message to spread but behind that and what really gives canSer suffers strength and for whatever motive that may be, is another lady showing love. Someone doing something to show that they care and if that raises awareness and especially if that support a clinicians research by attracting donations then “As I have had a mastectomy” and more importantly am still loving life and working for my miracle then this support does not “belittle” it warms and motivates me. Maybe Daisy should have asked rather than writing vicariously and maybe she would have known that some of the ladies in those pictures are personal friends of mine putting social networking to good use. Light and love x’

 

There have even been posts of people stating that it is offensive to those who have had breast canSer and mastectomies.

Really?

Who would be offended by this? And why? The girls have started a great viral campaign. No matter what I think or anyone else thinks controversy means it is getting noticed and if that raises awareness and funds for breast cancer charities then who cares, right?

So far the campaign has risen over £4000 on the girl’s just giving page. This is incredible and they want to raise £50,000. That’s simply by girls donating just a few pounds and getting other women and men to do the same. You don’t have to wear only a bra and expose your breasts. It quite clearly states on their page the following;

‘Take a pic, if you’re a bit shy put your BRA on over a T shirt (Male or Female), post it on Facebook and nominate 3 others or more; some have started asking everybody they know on Facebook. Don’t forget to donate.**** Also from now on can you please hold up a card with whatever message you want and no SWEARING please also no under16’s unless the BRA is on over some clothes***  Lets keep it sensible please. Raising money is what this is all about.’

I want to take a moment though to those of you that do find Bangers to Cancer offensive. How is this different to such charity initiatives as the Breakfast TV presenter Lorraine Kelly when she does the Moonwalk and every person wears only their bras? I don’t think that is sexualising the matter. However everyone is entitled to their own opinion.

Whichever way you look at it, it has got us talking about it, arguing about it, having strong feelings about it and most of all, raising awareness and funds for it.

Well done ladies and keep up the good work!

To donate and continue their campaign please go to their Just Giving page and start posting and sharing on Facebook.

http://www.justgiving.com/Bangerstocancer

or

Text: ‘VMAM66 £2’ to ‘70070’ to donate two pounds to Bangers to Cancer

Thanks!

Back to Bristol for blood taking…

A trip to Bristol for my mum and me again today would have been worry free had we not been woken at 4am with the sound of lorries hurling up our road. The noise was nothing we’d ever heard. It sounded like they were crashing through our house. Once awake we found out what had happened. The A34 had been closed both directions at 3am due to a road accident. Bizarrely enough police had stopped to clear a dead badger and a car collided with a lorry and someone had died sadly.

That was a bizarre way to start our day and our plans of getting up leisurely and making our way to Bristol were dashed. All traffic diverts past my house in our little village making it almost impossible to get to the A34 on our journey. We left with plenty of time to make it to Bristol back to the practise where I had been on Wednesday, this time to have blood taken in preparation for the RGCC testing.  I know it seems extreme to drive an hour and half (in good traffic) but that’s what you do when your life depends on it. Let’s face it, that’s nothing to the distances we travel for treatment usually.

I rang Dr Nesselhut this morning and he confirmed that the lab says my cells look good and we are to travel to their clinic for Monday’s appointment. Right, all systems go. I need to confirm flights and get a car booked. Tomorrow morning I will check in online and pack my clothes for our fleeting trip to Germany.

So how do I feel? Great, actually. I always feel better having a plan but I still feel anxious at a drop of a hat. Last night for no apparent reason I felt uneasy and unsettled before I went to sleep. I think beneath the surface I am worrying still. I guess I have to remind myself of the recent scan results. I would love to be completely ignorant and just think to myself how good I feel and that everything is fine. But then I guess it is really. I am definitely ‘fuller’ than usual and I wonder if I will continue to ‘fill’ up the more I deal with stuff. It doesn’t get any easier.  You just learn to deal with it somehow.

My hubby is absolutely wrecked from working so hard this week. Lack of sleep doesn’t help either… He is home now and the weekend begins… Not much sleep for us though as we will be up at 4am to get to the airport Sunday morning. Life goes on and we do what we can… but we try to make it fun along the way. We are having a yummy Indian meal tonight and watching international rugby with mum. It’s our last night together for a month.

Despite everything I love my life….

Food for thought!

This week I decided I would find some recipes with certain ingredients in mind. There are so many super foods and having a cupboard full of wonder herbs and powders I thought it was about time I actually tried using them. I am not a natural cook and with a little help from my mum we made simple things that I can pick at. This isn’t all for me. I am trying to convert people (maybe someone beginning with P) from eating processed sugars as much as possible. There are so many better alternatives. So we whipped up almond butter and lucuma cacao cups and cinnamon apple crisps. The more I try and cut out sweet things the more I want them. So I figure make them as healthy as possible then I can have a pick here and there. Yesterday we made my mums famous Dorset apple cake but with alternatives to the usual ingredients. We exchanged the flour for a gluten free version, goats butter, almond milk and coconut palm sugar. It may not look amazing but it tasted really good!

 

I now want to make some alternatives for breakfast and will be attempting to make buckwheat granola with goji berries, dried coconut, and other little gems. For dessert I have made cacao coconut and vanilla chia seed pudding. It can be eaten cold or warm and is so filling and full of protein.

My repertoire is expanding and I am becoming slightly more adventurous. The problem is now I have a kitchen full of goodies! Eek!

I’m off to have the RGCC blood test tomorrow and I don’t want to be caught hungry so will be taking goodies in the car to keep mum and I going.  A kind of car picnic… yummy.

Visit with another doctor today…..

We had a family outing to Bristol today. It isn’t as exciting as it sounds, well not in that way. Mum, Pete and I drove to have an appointment with Dr Hembry, a private integrated medical practitioner. (Mum came along for the ride..)I had read a lot about Dr Hembry and had been recommended her by several people. The main reason for going to see her was for RGCC testing I have heard so much about.

On meeting her I instantly liked her and felt at ease. We discussed all the treatments and regime I am currently undergoing and what is in the pipeline. She immediately said that she thought I was on a good regime of supplements and medication and asked who had recommended I take them. We discussed the number of contacts and doctors whom we have been working with for the past few years.

The RGCC testing is also known as chemosensitivity testing. On taking your blood they test circulating tumour cells (CTC’s) in order to enable an individual tailoring of cancer treatment.

Here is a link to the website; http://www.rgcc-uk.com/chemosensitivity-testing/

It involves exposing cultures of CTC’s to each available cancer therapy agent and analysing the cells resistance or sensitivity to the treatment. It also identifies the sensitivity of an individual’s cancer cells to monoclonal antibodies and biological response modifiers as well as natural and complementary agents such as acai berry and sodium bicarbonate for example.

You can see why I feel this is hugely beneficial for me and it’s a no brainer to do this asap. Therefore I am returning to Bristol on Friday to have the blood test. I couldn’t have it today as I am still on 6 days in after having chemotherapy. It is advised to have it more than a week later.

The bloods get sent to Greece where RGCC themselves do the testing.

That was the first thing we discussed. We then discussed options of treatments such as intravenous vitamin C. It is encouraging to see that the BBC news has written quote a balanced article on this subject only in the last few weeks. There is plenty of evidence to show that intravenous vitamin c could have on reducing cancer. The course would be three days a week for five weeks. Of course with all of these things there is quite a cost but at least it’s in the UK.  As well as this Dr Hembry uses Iscador injections, otherwise known as mistletoe. I haven’t gone hugely into detail yet but there is a plan. Get the test results then have a chat with her on the phone and see what treatments would benefit me. We did chat about the possibility of putting chemo off just whilst I have five weeks treatment with her. It wouldn’t harm per say as I could easily pick up chemo after that point. I am still early enough without symptoms to be able to rectify the situation should I need to.

Here is Dr Hembrys’ website: http://www.drhembry.com/

She did discuss Dr Nesselhut and the possibility of a treatment that is more uncommon. When I have some information I will share with you.

So things are looking up. Pete and I feel really positive. As with all consultations they cost money but we definitely got our monies worth. We spent a good two hours with Dr Hembry and there was never any feeling of rushing us. All in all a good day.

Back home and we have decided to bake an apple cake! I know, sugar, but we have made healthy alternatives using natural sugars, almond milk, wholegrain flour and goats butter. I can’t wait to try it… Just a little piece!

There has to be more ‘up’ days than ‘down’ days….

It was Valentines Day on Friday and cupid doesn’t have to do much around here for the love to be flowing. Pete and I decided not to go to town on gifts and meals etc, so after a very busy day for Pete and a highly emotional week for me, we were happy just to have a cuddle watching a comedy on the sofa. But in true Bear style, he bought me a bunch of red roses and prepared a lovely rose bath complete with red rose petals. Bless him. He never wants anything in return but loves to spoil me rotten. I then slept like a log. Thankfully I don’t lose sleep when stressed, probably due to the big Bear arm that keeps me safe during the midnight hours.

The weekend was great, dressing up and going out with friends, eating delicious vegetarian Thai food and having so many laughs. Sunday my mum arrived and we prepared bacon butties for a lounge full of men watching football. Good times…

But last week I have to say I was having a hard time. Thursday I had a meltdown. I have been trying to organise going to Germany for more treatments. In a number of emails it was transpiring that I couldn’t have an appointment for the next few weeks which is when I figured it would be best to travel. I would have a good blood count as chemo would have ended and I wanted to get a treatment in before I go for GcMAF (which I have been told is very complimentary to immunotherapy). I was given dates to have leukapheresis (full blood taking) again. I couldn’t understand it as I had enough blood taken when I went for treatment in November. I was then informed they had started using my blood as they believed I would be there today! I was so confused as to how they would think that when I hadn’t given my scan results until Tuesday afternoon?!  Then nothing. Communications went cold and I was left dangling. I was so stressed and upset?! So many questions unanswered and desperate to get something booked I decided I simply couldn’t deal with it anymore and felt at my wits end. I offloaded to Pete who sent a very well worded email and we finally got a reply that evening and things started to become a little clearer. I know I am hard work and high maintenance but I felt like everything was conspiring against me.

This had a knock on effect for me and I couldn’t pick myself up. I had a bad day to say the least. I felt wrecked and my thoughts were dragging me down. I kept thinking that options were running out and  what had I changed in the last six months that has meant the canSer is still growing? I might have even gone as far back as thinking, ‘why me?’ (You know it’s really bad when that thought creeps in)

I had a coaching call for my health coaching course to the U.S Thursday evening and I had a heart to heart with my coach. Ever honest I told her I was feeling low and how it isn’t like me. She was so supportive and made me feel much better but she could hear the stress in my voice to the point where I was trying to catch my breath. Sometimes I wonder if putting it all in my blog scares people and if it’s a little too much information but my coach suggested that it could be good for me. So here I am telling the world how I feel.

You see, I have bad days too and getting less than good news really does have a knock on effect. Yesterday despite the weather being amazing, having a lovely time with my man and having the pleasure of mum arriving for the week I felt discomknocerated. (Great word right? Pete taught me it.) I felt unsettled. I couldn’t put my finger on it and I am having trouble releasing worrying thoughts.

I am trying to use my thoughts to focus on the canSer going and getting smaller but I also feel not giving it too much thought is a really positive thing. I don’t want to get embroiled in worrying and looking for a resolve. I want to live my life. But if I am being really honest then I should say that I keep having really morbid thoughts and flashes of what will be if I die. Now I know we will all die but I mean I really do feel that my survival is being threatened and I am now really worried that I may not make it to my 40th birthday! I know crazy right?! I have never doubted myself and I believe my existence will definitely be for more than five years. But this has really worried me. I really felt so settled before. My plan was solid, I was on top of the canSer and as long as I could keep it under wraps, control it, that I would be here for many years. As I keep saying I feel great. If I can continue to feel that way then there is nothing to worry about. But I am worried. I am so concerned as to how quickly health can change. I know from speaking to people, I have seen it and I also receive emails from people I have only just been in contact with who sadly have passed away so suddenly. Mortality is such a weird thing. I don’t want to spend my time worrying about this.

But sometimes I just have to say it. It sucks. I am thirty eight years old and I want to be a little bit ignorant and revel in the ignorance that I should be alive for another fifty years! And I guess who’s to say I won’t be. We are all going to die. I just guess that I feel like I am being presented with death all too soon. I suppose sometimes I feel a bit jealous that other people don’t have this to think about. I just want to live! And there we go back to being me again. There is nothing stopping me from living. In fact if I don’t want to wish for the worst then living is exactly what I need to do.

It’s like having therapy, putting it in words on here. My positive nature always shines through and sense prevails. I know what I need to do and I know I have so many more options. I needn’t worry about what may or may not happen. I wonder if I am already assuming the next lot of treatment I am booked to have, will not work. Part of me thinks that, maybe. Just a little. I like to think that I am just planning ahead for every eventuality. Others could see it as being negative.

So that’s that. I am plodding on and trying my best. I hope that I am not just going through the motions. Every supplement, juice, exercise, stretch, positive thought and plan, I hope is having an effect at elongating my life. I have never ever listened to the doctors when they told me it was incurable. But sometimes it hits me like a train. I am afraid of getting ill and dying. There I said it. Sometimes I like to have a good old cry. But then I am a girl. And we cry real good. At nothing mostly. An advert on TV or a cute you tube video. But I cry because I want this thing to stop. I have had enough of this living nightmare and I don’t want to put my loved ones through this anymore.

But I can’t make it stop. No more than I can make time stop. I can only do what I can do. That is, look after myself, love as much as possible and keep trying because there is no other option. I am not about to lie down and give up. As long as I have the energy and breath in my body I will live my life as happy and as full as possible. I urge everyone to do the same. Never give up and remember there has to be more ‘up’ days than ‘down’ ones. It puts everything into perspective.

The moon looked beautiful last night. I can’t wait to see it again tonight. There, the little things mean so much more when you put it in perspective. Be grateful, be happy and love as much as you can. That’s a good motto to live by I think?

Right now that’s off my chest I can move forward…. Thanks for listening. X

 

Beauty despite cancer…

I have been speaking with many other TNBC survivors and have been feeling comforted to know that I am not alone. I feel empowered to stay positive and keep smiling.

My friend suggested I write a letter to the Universe thanking it three times for something. I have thanked the Universe for keeping me well and healthy and being cured of canSer. I know it’s a big ask but I am hoping the Universe will hear me.

Back to researching and working. I gratefully received some beauty products from Jennifer Young who has a beauty range for healthy people and a range specifically for cancer survivors. Those that are going through chemo and beyond. Our skin suffer, become s sensitive and hair is lost. Sometimes things return to normal but sometimes the sensitivity continues. It is imperative to people like us to look and feel good during such a low time.

The skin care products that Jennifer kindly sent me were a full facial range. I have been using them since Sunday and I already have noticed how soft my skin feels. The smell is divine and I would almost consider never changing back to anything else! I really like both serums for the eyes and face, as well as the cleansing balm. It’s very unusual that a balm is used for cleansing. I love it.

If you would like to check them out go to; www.beautydespitecancer.co.uk

Not only is the website full of great products which you really must have, (if you are anything like me- a product junkie – then you ‘have’ to have everything!) it is has great information shared by other canSer survivors and a blog. There is a team of people sharing their knowledge and expertise on beauty, well-being and fashion as well as writers from the fields of business, finance and insurance.

Wigs and hairpieces are also sold on the site. Plus there is a 0800 number that you can call; Appearance Advice and Enquiries telephone: 0800 999 8518

I would highly recommend you spend some time reading and if you don’t have canSer then there is a section where you can buy gifts! Hint hint!

Jennifer Young also has another range of products for ‘healthy’ people. They are great as you can customise your skin care for your specific needs. I think it is a genius idea and the products look great! Here is more about Jennifer Young; http://www.jenniferyoung.co.uk/why-jennifer-young

I am so interested in these products that I am considering purchasing both ranges to use with my beauty clients. It would be lovely to offer those whom need special treatment something that is made with them in mind.

I will be trying out the fake tan soon too. I’ll let you know how that goes once I’ve tried it. I have just seen today that a mascara has been launched too. How weird life is.. I was just thinking I needed a new mascara.

The Universe spoke to me.

So there’s good news and there’s not so good news….

There’s good news and there’s not so good news. I can’t say there is bad news because that just isn’t right.

Today has been challenging. I left home at 8.30am because I wanted to be ultra sure I got to the hospital on time and could get my bloods done before my appointment for scan results. I cannot believe it took me an hour and half to go a normal twenty minute journey. That was fine as I got there just in time for my appointment. But then had to wait over an hour to be seen. And sadly not by Prof Harris as he was away. (We were both so looking forward to seeing the Profs ‘happy’ tie  )I knew as soon as they told me that I was to be seen by another senior oncologist that the news was not going to be great.

To be honest that was the worst of it. Waiting. The knowing. The dread. The look on both of our faces. That’s the worst feeling. Once inside the room and sitting with the oncologist then anticipation is over.

The news wasn’t what I expected. I had a really good feeling that this time was going to be ‘my’ time. That something brilliant had happened. Everything inside me tells me I am well. I feel not only physically brilliant but mentally and emotionally. The scan results as usual are confusing and do not correlate to the previous scan. It’s like trying to decipher code. But on looking at the actual scans on screen I can see some changes. But not much.

So that’s a positive. The long and short of it is… I have had, what’s known, as disease progression in the tumours in my lungs. They appear to have increased by about 20% in the right lung and lymph node. The left lung doesn’t look like there has been much activity but they ‘assume’ that they too have increased. (Would it be so hard for a bloody radiologist just put details of everything they see? And can they please not confuse upper and lower lobes?!) We are still talking small sizes no bigger than 2.3cm. But that is still an increase and I have to say I was hugely disappointed.

BUT then I was hugely relieved.

I have not had any disease spread to any other organ or bones. Phew! That makes me so happy! So I am still containing it but the onc reckons that the chemo, Vinorelbine is not doing anything. There is an argument there that it could be doing something and that in fact the tumours grew a lot in the time I wasn’t taking any chemo and have gotten small since but the onc’s gut feeling is that it isn’t working.

So onwards to the next treatment option. It has been suggested I start Eribulin. Nicky, the oncologist was excited by Eribulin and has seen good success and it could help me survive a lot longer. It sounds like she has to request funding for it and is only given after a patient is on their third line of chemo. The down side is that I would lose my hair again and probably feel rotten and it’s given intravenously.  But that’s what they said about the last year of chemo. I don’t relish being bald again but hey ho… It’s just hair and men lose theirs all the time! The other option is Carboplatin and Gemcetibine. This we have heard of. And it has been quite successful for many.

Pete and I sat there so overwhelmed with what to do next. It’s so hard making decisions when you simply do not feel ill and when every cell in my body is saying, ‘don’t have any more treatment’. But the other part of me is saying, ‘give me it all! I don’t want to get any worse’. It is so hard making decisions about life and death.  We decided to let the onc know tomorrow once we have thought about it but we think we have already made a decision.  I am going to finish this cycle of chemo I am already on. Then I have a few weeks till I go to Switzerland to have GcMAF. In between now and then we hope to hop to Germany and have some more DC therapy. I have contacted Doc Nesselhut and await his response.

During our appointment the onc did mention that maybe, just maybe I could have the larger tumours ablated. We have discussed this with Prof Dalgliesh before but he hasn’t got back to me. So we agreed for her to try and get the go ahead through the NHS. Nicky did say not to get our hopes up. Why would I? It is the NHS after all. The reason for not doing it would be that I have other lungs mets and that it would be pointless. I am sure the radiographer would feel differently if it were his life or someone he loves.  Any who….

I had a little wobble, a few tears afterwards, but then had a big Bear cuddle and came home. Pete went back to work and life goes on. I feel remarkably well. I am bit confused as to what I am doing differently that is causing the canSer to grow. I feel maybe that the treatment in Germany needs to be intensified and more often. There are other things I could be doing but then there is so much out there to choose. It’s so hard to know what to do next and I wish someone would just tell me! But what works for one may not for another.

All I know is that nothing is different for knowing this information. Really not a great deal has changed. When the tumours were that large before I had pericardial effusion. There is no mention of that. So the lymph nodes are currently working OK.

So not all bad. See the positive in every situation. We also got to meet a lovely TNBC supporter whilst waiting. A canSer patient who looked really well and came and talked to us. It’s so great knowing that people follow us and our story and that they feel it helps.

I wish I had the best news for everyone and could tell them that there is one particular fail safe treatment. But I can’t. Not yet at least. We are working on it!

So what’s next? I have to consider other treatments such as intravenous vitamin C, chemo-perfusion, mistletoe, RGCC testing, Halean 951 and more. Not sure where to start. Best get researching some more….

 

Completely immersed in living….

Well… I’m back! It’s been more than a week since I have blogged and I can say I have missed it but I also didn’t have time to miss it. (Does that make sense?) I have been completely absorbed in Pete, my friends and the awesomeness of skiing and the views. Every single day I counted my blessings, couldn’t believe my luck with everything I was witnessing and experiencing and generally feeling very chuffed with myself.  That’s what holidays are for right? Completely immersing oneself into their surroundings and being present. That’s what I was… completely present. No worrying about home, work, kitty or anything.

But… as usual I m always so happy to be home. Maybe for the first time I have a little amount of holiday blues. However I couldn’t have skied any more. My poor little legs couldn’t hack it!

Getting home was an ‘interesting’ experience to say the least. What with all the storms and high winds we have been having the takeoff and landing tested my faith. I closed my eyes and prayed to whoever would listen that we would make it home in one piece. I kindly ask that I do not experience that again please?!

Now I am home I have a lot to catch up on. Washing firstly… there is a mountain of it and coursework. I missed a week of the health coaching course. I am ploughing through it today though in-between housework and clients.

Yesterday Pete and I spent a lot of the day eating healthy food and watching the Winter Olympics. We lacked a lot of foods that I love abroad, mainly as I simply wanted to indulge. (The cold weather makes me want to eats carbs!) The first Olympic medal for Great Britain was achieved yesterday and I felt so happy and overwhelmed. I love seeing people achieve great things.

Now we are home there is much to be done and much to look forward to. I try to live in the moment and not look too far forward but it does keep me focussed.

I am happy to have returned to my rituals and immediately did a coffee enema yesterday. I have to say whilst away I took the chemo drugs as usual. I felt very anxious about it but thankfully I really didn’t experience any side effects.

The only down side to the trip away was the lack of sleep. I am convinced it is a combination of food, drink and the mountain energy. Of course being back in my bed for two nights already, has meant I am feeling nicely rested.

So what’s next? There has been plenty of alerts on triple negative research all of which I post on facebook as and when it arrives. And tomorrow the scan results are in. I am trying not to think about it as I naturally get myself worked up and fear the worst. But I am trying to take my own advice and not think about what may not be and just keep thinking about how I feel today. I can’t change it I just have to deal with it. It is a pretty cruel situation to be in every 3 months though. The tension mounts and I feel like exhaling deeply over and over. Poor old’ Pete has to go through it too and it would be just amazing if all this hard work from both of us could pay off.  I feel great so if that’s anything to go by then we should be fine.

Till tomorrow… X

I’ll leave you with a little picture of me on top of the world.