Today is the day….

Today is the day… For my next CT scan. I have been remarkably calm probably because I have been so busy I haven’t had time to worry. But now I am about to go out for a few hours I have to wait till 4pm on a Friday afternoon to have the said scan. I have to admit I am no a little jittery. I don’t really know why as I won’t be getting the results until the 11th Feb! This is only due to the fact I am away for a full week. So really there is nothing to be worried about at all today. It’s not as if my life changes today but I guess I know that as a result of today’s scan my life is going to change. Well if I let it. I am ever hopeful and really have a good feeling but I can’t help that niggling feeling in the pit of my tummy that throws doubt up in the air.

I have had the pleasure of sharing info with my TNBC friend and it feels good to know we have each other’s back. That’s what is great about these kinds of networks. But this time it feels like I really have a confidante. We are so similar and our drive to survive is the same. Lots of new information is feeding forth between us and new doctors and trial names are filtering through. It’s great having a new set of eyes on the subject. It’s amazing what one person can find that I never ever heard of!

Maybe I am also a little floopy as we are leaving tomorrow. I always get a bit nervous. I am anxious of making it to the airport on time, will the flight leave ok or will the weather have an adverse effect on the travelling? Will our transfer be ok, will the hotel be alright? It’s so silly but I will never be calm about travel. I guess it’s because I have no control over it.

I am going for reflexology soon. I haven’t had one in nearly two months so I am really looking forward to it but I am anxious that being Friday afternoon will the traffic from there to the hospital be awful and hold me up… Again there is no point anticipating what I cannot control.  I am thinking of every possible route to get me there with very little trouble. Maybe doing a coffee enema this morning hasn’t helped me feel calm. I feel jittery. Initially I felt vibrant dancing around the kitchen but now I am simply just strung out! Argh! Ha ha…

Chill Winston. ….

Right I best have a calming cuppa and then get on my way to an eventful afternoon. Bye!

Today didn’t quite as planned…

Grrr… Today should have been a really good day. I didn’t have anything planned other than driving to have acupuncture in Farnham then pranic healing in Langley.

Being ever conscientious I ensured I had plenty of time in-between appointments to ensure I would get there in time just in case of accidents and tailbacks, especially with this crazy wet weather we have been having. I did perhaps over cook it by leaving two hours in between appointments but I figured I could go and have lunch or sit in my car and catch up on some admin and homework.

I had a lovely acupuncture appointment which then followed by great traffic and plenty of time to kill before my 2.15pm appointment. At 1.30pm I get a text to say that my appointment was to be postponed to 3pm. I have to admit I don’t respond well to stuff like this. I plan my days and I had to be home by 4.30pm. But I figured as I had travelled that far I would wait. I waited until 3.10pm and still no sign of the therapist. Now I hate moaning and I am sure there is a good reason for the delay… but I am just letting off steam. I’m home now and happy but I won’t get those three hours back plus I could have really done with the treatment as I start day 8 of my chemo cycle tomorrow.

I have been getting a lot of response about the GcMAF treatment from a few of my followers and have been avidly reading. It does seem promising in many respects and that it could work potentially very well with DC therapy.

Essentially GcMAF is a protein in our immune system that activates macrophages (white blood cells that eat cancer cells).   But viruses and malignant cells like cancer send out an enzyme called Nagalase that blocks production of your GcMAF.

Prof Harris said yesterday that if GcMAF was that good that it would have been distributed globally much like Herceptin which has made over 5 billion pounds! It clearly isn’t that good. But it does make me wonder is it because it is a simple vaccine immune boosting thing and it is only now that they are coming into favour? He said that I had something very similar to GcMAF when I had chemo a few years ago. They supplied me with injections that I gave myself daily to raise my white blood cell count. He said that GcMAF is essentially what that is. He also mentioned that Goliec which is another GcMAF offering is simply from Olive oil and that it would be best to get it from our nutrition. This made me smile. A doctor telling me about nutrition when they have always shied away from it?!

Anyway on reading through blogs and research it isn’t as simple as that. If you would like a firsthand view on GcMAF then click on this blog here;

http://bisforbananascisforcancer.wordpress.com/2013/12/13/fulda-conference-2-gcmaf-professor-ruggiero/#more-2113

 

Pete saw this online and it really sums up the last year for Triple Negative Breast canSer research in the eyes of a fellow blogger and author of Surviving Triple Negative Breast Cancer;

http://hormonenegative.blogspot.co.uk/2014/01/top-research-of-2013-on-triple-negative.html

Hopefully now Ihave had some green juice, green tea and am making a homemade parsnip soup I will be able to reflect on today and look at the positives. Hey ho!

 

Guest blog by Bear.. Gamma Delta

I guess by now, you know that if it’s a Bear Blog, then it hasn’t been a good day.

 

We are in Germany for treatment and we had two main objectives today. Firstly to unravel the tapestry of inconsistencies that have accrued over the last 4 months and then to have a successful gamma delta cell treatment.

 

The good news is that we achieved one of those goals. Dr Nesselhut (Jr) was very candid with us and we are now able to understand the reasoning behind decisions in respect of treatment levels. If that all sounds a bit MI5 it’s because it is sensitive and not really for release. The most important confirmation is that Claire has not suffered any degradation in treatment and matters are now being addressed, so onwards and upwards. The bitter sadness was again present though when the explanation of where the donor cells Claire had last time became apparent. Donor dells are only available if they are not “used”. Being a bit think skinned, I then managed to ask “Why wouldn’t they be used?” It’s a canSer clinic Bear – why did I think they weren’t used. Have never felt so sick.

 

Achieving point 2 proved a lot more problematic.

 

Having confirmed that this time the Zometa (chemical used to infuse the cells – that destroyed mine last time due to a fault) was good and I had managed to donate a good amount of cells for Claire we prepared to administer the vaccine. The dendritic vaccine was to be given afterwards directly into the lung intravenously and half under the skin of the arm.

 

Claire was attached to the automated chemo style syringe dispenser and the doctor and nurses said see you in 30 minutes. Almost immediately Claire felt pain in her chest that spread from the front to between her shoulder blades. Being a hard east end girl she told me to “leave it” and let the treatment continue. After about 20ml of solution and about half way through, I noticed other symptoms and realised she was going into shock.

 

The medical staff were awesome. They arrived like a battalion of winged archangels and immediately realised that she was having an extreme allergic reaction that was enduring shock. Her blood pressure was dropping and they feared cardiac arrest.

 

By now Claire was pretty much unaware of what was happening but she was administered an anti histamine, calcium and another drug via oral spray that I could not catch the name of.

 

This seemed to do the trick and her pressure to was restored. However by now she resembled Will Smith in Hitch and had swollen lips, puffy itching and watering eyes and her skin was so red and hot it looked like it may split. Even more oddly the injection spot used for the last DC vaccine had come up on her arm like a golf ball.

 

We all sat back and waited. After about 45 minutes Claire could speak and was (can you believe it) “keen” to crack on with the treatment. As she put it “That’s £5000 of my cells in that syringe and I want them!”

 

Needless to say the Doctor refused this request and sent the remaining vaccine to the lab for a thorough investigation. It is a real mystery as she had donor GD cells last month and it was fine. In true German joke style the doc told Claire, “you are allergic to your husband – yes?” (many a true word said in jest)

 

He also refused to administer the dendritic vaccine into the lung and couldn’t use the arm as this still resembled a lunar landscape, so he injected it into the stomach. How that didn’t make me sick I’ll never know.

 

We then had to wait another 45 minutes to make sure she wouldn’t turn into the Incredible Hulk before a mad dash back to Hanover airport. She is still a very poorly bunny but a night in her own bed and some loving hugs should put her right, while we wait with baited breath for the lab results.

 

How amazing if this turned out to be the sequence of events the actually created a cure? I wait for my little miracle to happen. Bye – Bear

Unpacking and packing again ready for Germany trip…

I’m back home again. I left mum’s this morning to beat the Saturday shopping traffic. I arrived to an empty house and have been pottering until my man arrived home.

I have been unpacking and re packing again. Tomorrow we head off at some ungodly hour to get to Heathrow for a flight to Germany for my next round of dendritic cell therapy and gamma delta therapy… (Hoping the lab work is good this time and Pete’s cells can be used.)

This wouldn’t normally be a problem but as per there is always a spanner trying to get in the works. This morning it has been reported there are huge issues with flights due to a technical issue at Swanwick traffic air control. There have many cancellations. Oh well I guess we will have to wait and see. At 4am tomorrow I will have to check online and go to the airport. If it looks like it is cancelled then we have to hop in the car and drive to Germany. It’s not like we can afford to miss out on the treatment. The vaccinations will be ready and if not used we will still be charged for them.

Usually I would be getting up tight about this but we have been in this position before, last year when flights were cancelled due to ice on the runway. Luckily our flight went anyway.

The other reason why I am not getting uptight is because I am actually feeling a bit run down and tired. I find it hard to believe I feel this way after having such lovely days at mum’s but I didn’t sleep at all the whole time. I simply do not sleep when I am not with my Bear. Sad but true.

I awoke to a sore throat this morning and now I have a sniffly nose. As soon as I got home I had a ginger and lemon shot and have downed a huge glass of green juice consisting of cucumber, celery, cavalo nero with green powders, e3 live and flaxseed powder. I am trying to fill my body up with extra goodness. I already have my pyjamas on and have decided I will be resting on the sofa this afternoon with a movie and tonight the TV is going off early and I am going to try and sleep at 8pm.

I am as always a little excited and apprehensive about going for this treatment. I have such high hopes and can only hope it helps me fight and be stronger. All I have been thinking recently is that my body can beat this.

A good friend of mine who I have got to know through having canSer has been keeping in touch recently and has been told that his canSer has reduced by 80%. He has questioned his doctors on seeing his CT scans as to know what they are interpreting. Because he has canSer near his spine and they are unsure what to do next treatment wise he has been granted a special CT scan.

This is what my friend Wayne said; how do they diagnose from such poor images and how much is open to interpretation?

Well now New CT scan technology can provide very detailed HD type views in 3D of all organs and even shows detailed images of arteries etc … yippee 🙂

 

This scanner is the ‘Aquillion ONE CT scanner’ these are not the CT scans used as a general rule in most hospitals but there are not many of them around.

Please read more below;

 

http://www.healthscanlife.com/body_scan_technology.html

 

I have always had issues with CT scans and I am always wondering what they are interpreting and would love to go down this road. It costs £1500 to have privately but they do offer it at the Royal Marsden Hospital. This has got me thinking and I may now ask if I can have one too. I don’t want to miss out! Ha ha!

Right I’m off to watch a bit of rugby and Harry Potter. I have everything crossed that everything goes swimmingly tomorrow.

I didn’t think I’d say this.. but brilliant meeting with the Prof today!

Today Pete and I had to be at the hospital bright and early. We were both a bit nervous. It was an odd feeling as we have already had the CT scan results so neither of us could place what we were nervous about. I know why I get anxious. I dread seeing Prof Harris because I feel that I can’t confide in him and that he will disapprove of the other treatments that I am having. I hate feeling like that. I want an oncologist who is my confidante. That was probably the reason for the anxiety and nervousness. Nevertheless both Pete and I were full of smiles and huge ‘hellos’ when Prof Harris came in to talk to us. He looked very smart today in his favourite leopard print tie. (I can always tell it’s going to be good when I see him in that tie! Ha ha!)

Well let’s say I was bowled over by the meeting we had with him. He discussed the fact the tumours seemed larger but are still very small and I am still in a better position now than this time last year. This surprised me as I expected him to say that they are growing and fill me full of alarm. But no…

He explained the options open to me and explained exactly how things worked on a cellular level and what each treatment would do specifically. He has never gone into such detail with me. It was hugely refreshing. I actually felt  the NHS mantra which says ‘No decision about me, without me’. For once I was able to consider what he was saying and he didn’t cast aspersions. He was open to discussion and we felt very comfortable in explaining to him everything else that is part of my treatment plan including the treatment in Germany. He jotted down notes on exactly what I have been given and even to the extent of supplements. I told him I take metformin and he said they had done a study on it and he approved of its usage.  I felt lifted and really happy. What a difference it makes to be involved in the decision making process. He gave me two options with regards to chemotherapy; one being an oral tablet and the other being intravenous. He was opting more towards the oral version which really surprised me. I said that I had heard that low dosage chemotherapy had been coming up in our research and he said that’s exactly what he thought and why he had suggested the oral tablet.

The chemo options were vinorelbine which is a part of the taxol family. It derives from the plant periwinkle. It works by stopping the cancer cells from separating into two new cells. So it blocks the growth of the cancer. This drug can be given intravenously as well but I am so thrilled to be offered it as a tablet. The regime is different to the current drug I have been on and it does mean having blood tests more often but that’s fine by me.

The other option was carboplatin and gemcetibine. We have heard this is a great combination but something I didn’t ‘want to consider at this stage mainly because it is given intravenously and I don’t really want to lose all of my hair a right now if I can help it.

I can honestly say I have never felt so lifted after being to see Prof Harris. It has kept me on a high all day and now I don’t feel quite as gloomy as I have been over the last few days.

It seems that the hope of the treatment that Prof Harris administers is to get the cancer to reduce or become stable giving me years ahead. This is why he said there are many options yet to go. Unfortunately they are all chemo but who knows what may happen in between.

We did ask about having a PET/ CT scan but he said that all cells would take up the glucose and we wouldn’t be able to differentiate between them. That’s a shame…

He said that the German treatment even if it isn’t working may well be making me feel really well and that is a bonus. He also said it has been scientifically proven that staying positive elongates the life and gives a much better outcome. So we heard from a scientist being hopeful and staying positive is good for our health! Love it!

Off I skipped from hospital to have a session of pranic healing. I really like seeing the therapist. He is so calming and gives me so much hope. He seems to feel that this disease will recede as I get stronger. He already feels that removing the rings has made a big difference and will continue to. Whatever you may think of it, the treatment always gives me physical reactions. I had a fluttering in my side and Les said that he had been working on my liver as it felt full of toxins. I also had a mad thumping feeling in my back and it was just where he was working. He explained that the ring fingers are a direct route to my heart and lungs and where I had been wearing the rings with diamonds on was harnessing a grounding sensation and making the canSer stay. It all sounds mental but I am convinced by it!

If that wasn’t lovely enough I then drove to have an acupuncture session. It has been six months since I saw Michael. It was brilliant to catch up and even more relaxing to have a treatment with him. He reduced heat in me which is usually manifested by chemo and anxiety.

So I am now home and feeling pretty happy with myself. I feel back on track and raring to give it my all.

Having that meeting today with Prof Harris is just what I needed. I needed to know I have a team that works with me and is open minded to everything I am doing. I never thought I would get it from an NHS doctor but I am thrilled I did.

I have felt grateful all day. No one day is ever the same and no one ever knows what may happen. That’s the beauty of life I guess. I live for these days.

I just want to add that yesterday I was very touched when a friend has offered to give me all of the commission she earns from work to me, to use either for treatments or to donate to my charities. WOW! I am so overwhelmed and have to admit I had a little tear. People’s generosity astounds me. There is so much good in the world when you are open to give and receive love.

I’m feeling the love everybody!

Some days things just don’t go as planned.. then the next it does!

The last couple of days have been suitably busy with hospital appointments and clients as well as my own treats that I really look forward to.

I had my 6 week clinic appointment on Tuesday at hospital. I had a few issues getting there on time (My car decided it didn’t want to open!) but the traffic was kind to me. It must have been one of those days as I arrived to be told there was two hour wait! My heart sank. Using my time wisely I collected my prescription and had blood tests. For once I came prepared and relished in the thought of reading my Zest magazine from cover to cover. I haven’t had time recently at home so this was a great excuse to take time for myself. I did eventually see Prof Harris who apologised for the delay. It seems he had many new cancer patients that day and they require more time, understandably.

He was very nice to me and did a thorough examination and we also discussed what happens when we get the next scan results. He thinks it is unlikely to have changed much. If that is the case then he wants to continue with capecitibine. If there has been a dramatic increase then he thinks we need to discuss another type of treatment and also discussed me going on a trial. I obviously don’t want to think about that option. I am happy on capecitibine and hope to God that that it is really good news. What disturbs me slightly is that if there is a dramatic increase that he wants to trial drugs on me. Surely this is a bigger risk of it not working… I won’t expel much thought on this and will just wait and see what happens… There is no point worrying about something that may not happen.

Yesterday I had a lovely afternoon having my nails done. I so look forward to my little treats and it seems sometimes they come all at once. Today for instance I am going for reflexology. Yay! I lurve my reflexology treatment.

It’s funny how different days can be. I got up early today and have flown through my morning rituals and also done a coffee enema and neti pot. I feel clear headed and very excited about things…

I had blood test results yesterday in order for me t be able to start my 17th cycle of chemo. The nurse told me that my blood count was very good and that my bilirubin levels were on the high side. Apparently the top level is 17 and I am 20 but still fine to carry on with treatment. Always interested in knowing what things are I researched what bilirubin is. This is what I found;

Capecitabine can cause higher levels of bilirubin in your blood. Bilirubin is a chemical that is released into your blood, which results from the breakdown of red blood cells. Bilirubin is used by the liver, to make bile. Your doctors will be monitoring your levels of bilirubin in your regular blood tests before each chemotherapy session.  Higher than normal levels of bilirubin in the blood suggest that either larger amounts than usual are being produced through unusually high levels of blood breakdown called haemolysis, or that the normal drainage of bile containing bilirubin is being prevented.
It doesn’t worry me because the nurse told me that my levels were much higher on the last blood test I had. It’s weird that things can be going on in the body and I am totally unaware of it.

I started my health coach course yesterday. It involved watching and listening to many presentations on my iphone and one being by Alicia Silverstone, the actress. She discussed her awakening to diet and lifestyle changes. She follows a macrobiotic diet. I am always interested into different diets. They intrigue me but one thing always follows suit…That having a mainly fresh vegetable and wholegrain diet is healthy for you and reduces the risk of so many diseases and eases symptoms of them too.  I’m not sure about following that diet but it was very interesting.

If you would like to know more click the link:

http://www.webmd.com/diet/features/macrobiotic-diet

Time to get go for reflexology… and relax…..

Today I tried out… pranic healing

I have had a day of me stuff today. I know it seems that every day is a ‘me’ day but I really got cracking with therapies for myself. I started the usual way although I was awake at 4.30am.

Sleep isn’t great for Pete lately and it goes to show how hard it is for loved ones living with canSer survivor. They worry about money, the future and losing the love of their lives. I feel terrible knowing how much it affects those that are close to me, most of all Pete. I only wish I could tell him that it’s all going to be ok. The treatment is Germany in expensive and money doesn’t grow on trees. There is always a fear that one day we won’t be able to afford to go and then that leaves us limited as to what we can do. It really is life and death.

Back to my day. Once Pete went to work at 5.30am! I thought as I didn’t have clients that I would try to sleep. Typical, the day I don’t have to get up I can’t go back to sleep. I did however laze with the cat sat firmly on my chest.

After my rituals and morning juice I decided to do a coffee enema to give myself a boost and a sense of clarity. I don’t get a head rush anymore after having one. I just feel really cleansed. Following that I used the neti pot to clear my sinuses and get a sparkle in my eyes. I felt really good.

The weather was atrocious last night but thankfully by midday today the sun had come out and it’s been glorious. It was a good sign as I had a drive to a new therapist today. I was recommended by a friend of a friend to try out pranic healing. I hadn’t heard of this before but was intrigued as the therapy involved working on the chakras and getting them balanced. That is all I knew about it.

On arriving at the address I thought to myself it looked unlike a therapist clinic but I have seen worse and to be honest I am not surprised by anything anymore. On meeting Les, the pranic healer I immediately warmed to him. He was very calming. He proceeded to explain how pranic healing worked. It is based on all the chakras and the energy of a person. Not just the common chakras we know but all of them including the front, back and in the hands and fingers too. Using a laser crystal wand he would work on my chakras by eliminating negative energy but also give good energy and try to heal areas. He showed me a book that explained the chakras and what they look like for someone with cancer. All of the lower chakras are enlarged and out of balance and the heart and third eye chakra are tiny. The aim is to reverse this. Once reversed the body will be healed. Pranic healing is not only for the physical being but emotional and mental health. The treatment doesn’t have any hands on so can be very odd to anyone that is pessimistic and a non believer. I stood in his room whilst he ‘worked’ on my energy and I have to admit I did have some odd sensations. I had a tugging on my lower back and a pressure on my chest below my throat, which did subside.

Les asked me about my jewellery. He said that crystals magnify negative energy in the imbalanced chakras and that included diamonds. As I am wearing diamonds he urged me to remove them whilst trying to heal. I explained to him that I have crystals everywhere at home especially around my mediation station.  He said to wrap them in silk and put them away until I am better. He isn’t allowed to state he can heal people but he has treated many people with canSer. I believe.

Not only does he treat people but he is the only UK teacher. He has an interesting past as isn’t your usual type of therapist coming from an engineering background.

We didn’t have a lengthy consultation so I only briefly told him that I had canSer and where it had spread to. Whilst treating me he said that he felt my energy was stronger and more out of balance in one area of my lungs- the top right hand side. I was surprised he said this as this is where there are supposedly two tumours. I was starting to think this guy really knows his stuff.

I guess he must be good as he is so difficult to book. I have a few more appointments but hope to ensure that I get more in the forthcoming months. As for me I am going to be taking my jewellery off and hiding all my crystals for now. Let’s see if I can heal quicker?!

Tonight he said that I may have some sensations in my lungs as he had been working on the tumours. He also said not to shower or bath. I guess my Epsom salt bath will need to wait until tomorrow.

I am really pleased I made the effort to go today. I had been pondering as to whether it would be beneficial to me but the way I feel now about it. It was the right decision to make.

What will you do when all this is over?

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

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

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

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

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

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

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

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

In the Mood….

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

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

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

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

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

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

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

Deflated and unsure…

Pete and I went to bed early last night. So early we had about 11 hours sleep! Boom! I love the Zum Lowen’s beds. Dragging myself out of the warm and comfy slumber this morning I scooted to the clinic to have my bloods drawn ready for up and coming visits. I was due to return at 11am for the next hour long treatment but as they had time I had it all done at once.

I had a chat with the nurse whilst lying there. She was telling me how much easier things are now.e asked if I remembered last summer with all the Portuguese patients. Do I? Boy yes. It was so busy and many mistakes were being made.

I asked why it wasn’t as busy now. She said it had calmed down since people had started abiding by their appointments. She said that for a shirt while people would stand there at the counter demanding an appointment. They had travelled from Portugal without having an appointment and cry until the doctor saw them. It’s amazing what desperation does to one. The staff would start at 8am and finish at 8pm. I guess that’s busy over there.

Thankfully peace had been restored.

An hour or so later we met with Dr Nesselhut who was lovely as usual and this time had a doctor from Amsterdam sitting in with us.

We explained again the scan results and he seemed concerned by the necrotic ones that were active in my lymph nodes. He said that he would like/expect no changes so if the next scan still showed a lot of change then we need to let him know so that he can change our protocol. Pete mentioned the fact that I’d had head/neck ache for sometime and Nesselhut insisted on getting it checked out by way of bone scan. He said it is probably nothing but better to be sure… Not what I wanted to hear.

Pete also mentioned my cough and explained Prof Harris’s thoughts on it. Nesselhut was less concerned but suggested codeine at night… Not sure why.

A lot of conversation was banded about things that could be done and what was inbound. He talked a lot about anti pdl1, pd1 and more. We said we thought I had already had that. He said in the vaccination, yes, but not injected directly into me. He said the quantity required would result in the cost of £100,000! He suggests it works better because when administered in the vaccine we are just training the dc cells, whereas administering it into the body, it attacks the protein cloaking the canSer and therefore has a much better response. They have high hopes for this.

Pete not knowing the price asked when we could start that treatment. Nesselhut said not yet then told him the price….. Jaws dropped. Let’s hope I don’t need that then!

Whilst chatting about triple negative Nesselhut said that they had amazing results for those who had not waited till they metastasised for dc treatment.

He says the success rate for those who have the treatment is 100% over 5 years. If only I knew about his work before the canSer had metastasised.

For someone like me he said there was a 30-40% success rate over 5 years… Well I guess that’s me in that 30-40% then!

This is great news for any TNBCers out there. It isn’t the worst thing ever to have that diagnosis and despite needing funds if you can obtain them, then go for it. It’ll save your life.

 

I had my vaccination intradermally and intravenously. My arm is currently as big as a balloon. The biggest reaction yet. I feel fine. I am longing to be at home but then who doesn’t when you are sat at an airport.

 

Thoughts have worried me this afternoon. I guess if I am being ever alert then I know in my gut that I should get my headaches checked out. If I am being less cautious then I want to wait.  I have neck ache. It feels like I need a bloody good massage. The thought of having an MRI scan fills me with dread.

 

Whilst having a green tea this morning I suddenly felt sick and had to rush to the loo where sadly I vomited. What caused that? Don’t know….

 

Last night I spent a little while trawling through FB, as you do. I saw a post on The Huffington Post. I’m not one to follow blogs, bizarrely enough on other canSer survivors, but this one caught my eye. I read it to Pete and we both cried. Not wanting to ruin it for you, the outcome isn’t all happiness and joy but the power of the internet has meant her post has gone viral and her husband has written to thank everyone now that she is gone. I’m reading far too many posts of late of women dying before they are 40, not just of breast cancer but bowel cancer and more.

Here’s a link to Charlotte Kitleys’ final blog that she wrote before she died;
http://www.huffingtonpost.co.uk/charlotte-kitley/bowel-cancer-charlotte-kitley_b_5836238.html

Followed by her husbands reply; Well, it’s not quite the end…
http://www.huffingtonpost.co.uk/richard-kitley/well-its-not-quite-the-end_b_5855370.html

 

I don’t think Charlottes’ post was all doom and gloom but full of love, hope and happiness. I will take her advice and run with it.. I advise you to do the same.

 

Night all. Hopefully I’ll be home soon tucked up in my favourite place with my favourite person plus the little furry one.

 

Xx