Better when I am not thinking about it….

It’s been an up and downy few days. Ever since I got back I have continued to have head aches and whilst I don’t think there is anything serious to worry about I had to mention them to my oncologist.

I also mentioned this cough of mine. Prof Harris doesn’t think there is anything sinister in the cough but as expected says I have to bring my CT scan forward AND have an MRI scan. Boo!

I absolutely hate having MRI scans, mainly because I feel claustrophobic in the noisy tube. I know it’s not rational but then maybe it isn’t the fact that i am having a scan that scares me.

I completely understand why i have to have an MRI, I just don’t relish it.  Best to be sure though.

Saturday was a lovely day. I spent the day in London with my old school friend. We relaxed, had spa treatments and then went for a lovely lunch. Plans are already being made for the next trip…All the while I was there Pete slaved in the kitchen making foods that I can snack on and that are full of antioxidants. Love him.

 

I am struggling at the moment with letting you know how I am feeling. I feel confused. I feel so up and down that I don’t know myself. One moment I am feeling great, the next I feel rubbish, mostly I am feeling rubbish. I hate having nothing to report because I am so self involved and all consumed with myself. I want to be full of energy and loving life. And I do to some extent but when you have niggly little ailments such as headaches, they can really bring you down.

I go to bed with a headache, and then I wake up having visuals, the start of a migraine. I cannot explain it. I have back pain where I feel the headache is resonating from. It could be absolutely anything that’s causing it. Who knows what I am having pumped into my body? All I know is that once I have the scan results if it’s not the worst, then it can only get better.

I am better when I am not thinking about things. I am still struggling taking my meds and supps and I am really finding it hard to focus on the big things. They are more important to me than anything else. I just need to remember that.

Flying visit to Duderstadt….

Side effects have really been getting me down the last week. At least that’s what I hope they are. A constant headache and that bloody nagging cough.

I have completed the il2 round 6 and the new imm101 jab has been gradually getting bigger and had now decided to get oozy.

The weekend was lovely with friends visiting but prior to their arrival I just felt rubbish. I whined and moaned and despite wanting to do some gardening jobs I got myself on the sofa under the Bears orders.

The problem with ailments is never knowing for real what is causing them. As with all canSer patients their minds will run away with them. I have now decided to be logical and really think back as to when all these annoying side effects started. I think they could be an accumulation of things over the last few months. I also thought that the nausea I had been experiencing could be down to them too. I think I feel a bit better with the knowledge that although I feel sore throated and tired that it could all just a sign of things working.

We got up at 4am today to get to the airport for our morning flight to Hannover. It’s been about ten weeks since we saw Dr Nesselhut last and I am ready for this round. I do know that tonight could be another night of fevers. My body has been going through it with all these infections and immune stimulating things going on.

So today I have had zometa, il2, hyperthermia, Newcastle disease virus and air. A well as this I asked for my bloods to be taken for my next visit. I feel fine right now, if a little tired but I am ready for tomorrow’s stint too.

Pete is here with me, as usual and I am so pleased he is. The roads were horrific getting down here with traffic and roadworks. I aim to have an early snuffly night in the ultra comfortable beds at the Zum Lowen plus we have been given a room with a mahoosive bath! Whoop… A big soak in the tub! Falala!

We finish tomorrow at about lunchtime but our flight back isn’t til 9pm…..

Until Wednesday…. Xx

I haven’t been able to walk since the Colour Run!

It actually hurt getting up at 5.30am on Saturday morning. But we had arranged to meet everyone from Pete’s business in Witney where the coach would pick us up at 7am.

It was extremely early to be going to the Colour Run in Birmingham but we wanted to ensure that we would be one of the first ones there so we wouldn’t be held up in the huge numbers of people running.

We were actually the first people there! Haha! Right on the starting line, there we all were. We had such great banter all day and mostly stuck together throughout the race. It is no secret that i am rubbish at running at even a 5k race was too much for me! I walked a few times but I still cracked through it in about 40 minutes. It was such fun having powder paint thrown all over you. We all looked a state but had so much fun. After the race there was a mini festival where we all danced and threw paint over each other. We were like a bunch of big kids.

All the while I thought of Leanne….

Donations have been coming in and we would like to thank everyone that has donated so far… We are creeping up to the £20,000 mark. It has been steadily going up over the past two years and we aim to keep going. It all helps, we hope.

I have to admit I haven’t been able to walk properly since the run. Despite exercising daily these muscles are crying out, ‘what have you one?’ Pete thinks it might be time to take up running…Gulp.

The rest of the weekend I felt under par. I had the feeling I was coming down with a cold. You know that sore feeling in the throat and the twitchy feeling in the nose. I must have felt poorly as I left my friends birthday bash early to get home to bed. Even when I woke yesterday Pete said I think you better have an afternoon nap. I looked in the mirror and the state of my under eye bags, i had to agree with hm. He tried to snuffle me up with rugs on the sofa but I just wasn’t having it. I had FOMO; Fear Of Missing Out. Whilst Pete mowed the lawn I wanted to do something too.

I had a lovely weekend and I have to say I feel a lot better. The cold hasn’t taken hold (I’m a poet and I don’t know it! Haha!) and I’m back working today and feeling great.

My vaccination site on my arm erupted quite a bit over the weekend, but at the moment seems to be ok. I am sure it be oozing by tomorrow.

Tomorrow I am back to St George’s for my next round of interleukin 2 injections; round five. I’m not overly looking forward to going through that again but needs must.

Here are some pictures of the Colour Run…

I am so very grateful for the guys taking time out of their weekend to support such great causes and for us. I’m very touched.

 

 

 

Squeezing everything out of life….

I am so sorry for the lack of blog since my last one, which was quite an exciting one! I have been ultra busy since then.

Last Wednesday I went to London to collect more interleukin two injections and also had a quick chat with Professor Dalgliesh. He seemed very excited when I told him that Professor Harris had supported his work and said that he feels I should continue with his treatment. Professor Dalgliesh said he really respected Professor Harris. He wishes that it was the same for the doctors at the Royal Marsden. It seems crazy that all cancer doctors aren’t all supporting each other. This is why we are no further forward with a cure or a vaccine.

I started having the injections that evening and finished Friday evening. As before, I had fevers and very disrupted  sleep. I eased the pain and fever with paracetemol but it seems to have quite a bad effect on my stomach now too. I get stomach aches when having my green juice and supplements in the morning and over the weekend I even felt nauseas for a while. Pete says it seems to affect me worse than chemo did. I felt ill over the weekend, generally under par, emotional and grotty. I even went to bed last night feeling achy and off. I had diarrhoea for most of yesterday too.

I actually forget that I have been having the injections and start wondering what can be making me feel rough. But then I think back to the last round of injections and remember feeling pretty rough for that weekend too. I think maybe it is an accumulation of it. The lumps where I inject in my tummy are still raised and itchy. I hope they go away soon.

Thursday was an exciting day for me too. I hopped on a train to London yet again, this time to meet my friend who arrived from Ireland for a few days and to go to a photo shoot. Breakthrough Breast Cancer had contacted me and asked if I wanted to take part in a magazine feature. Prima Magazine as part of October Breast cancer Awareness Month wanted to tell the stories of five breast canSer survivors, me included. I arrived at a cool studio in East London and was greeted by Jo from the magazine and the photographer. There was lots going on with the other ladies choosing clothes and being made up behind a screen. I have to admit I had thought on the way there, ‘Why did I agree to this?’ As usual my nerves were kicking in and I am not great in front of a camera. My cheeks twitch and I feel a bit like Chandler from Friends in the episode where he has his photo taken with Monica celebrating their engagement. I knew it was going to be fun and it’s so lovely to be asked and to think that people may want to read about me.

I was shown a rail of clothing and met the stylist and her assistant, who said I looked trendy and that she hadn’t bought anything along for someone so trendy. That was really sweet of her. I did find something I wouldn’t normally wear but all the other ladies were wearing bright clothes so I decided to join in. Being made up was very relaxing (I especially liked the eyelash extensions. I looked like a cat from a Disney movie!) and talking to the other ladies was so interesting. We had so much to share about our own stories and they have all overcome so much.  The ages started from 34. Many of the ladies there are part of other campaigns for other charities such as the Look Good, Feel Good campaign and the Breast Cancer Care fashion show later this year at the Grosvenor Hotel. They are all so confident and brave and I thought they all seemed to love life. We discussed juicing and diets along with our experiences with chemotherapy. I was the only one there with secondary canSer I believe. I discussed with the stylist who is also a survivor, the treatments that I am currently undergoing. Everyone I spoke to seemed in awe and didn’t really know anything about the treatments such as immunotherapy.

When we finished there my friend and I hopped on the tube and met Peter and his colleagues who had been working in London all day for a cheeky little drink before our journey home.

Friday I spent with my friend showing her around Oxfordshire and having a lazy lunch and did a spot of shopping. Back home, I did her a shellac manicure, HD brows and teeth whitening. She was well and truly pampered. I loved making people feel happy. That evening we went out for drinks and a meal. All throughout these days I was trying to ignore the side effects of the injections. To be honest I struggled at times.

The weekend flew by and by yesterday I felt a mess. I wanted to do so much but I really needed to chill out. Pete looked after me as usual by rugging me up on the sofa and Kitty even joined me for Sunday afternoon cuddles. The first time in months.

Throughout this I have been trying to keep up to date with emails and have been contacting Dr Hembry in Bristol. I have enquired about having some infusions. I don’t want to become complacent with the treatment I am having and I believe keeping canSer on its toes is essential. The infusions I requested are; artemesinin, NaBic, B17 and salicinium. This is because my RGCC blood test showed I would be responsive to these. Sadly Dr Hembry can only help with one of them so has given me details of a doctor in London who I have today emailed. He has already replied and said he can help with salicinium and artemesinin. I have to get consent from my gp or consultant before proceeding but in the mean time I will get more information and the costs for it.

Today I am back to my usual rituals and I slept pretty well (I love fresh bed covers!). I did wake for a while, worrying about stupid things, not health related. It’s unlike me but apart from that I feel much better today. My stomach is aching less and I feel much brighter, so much so I could exercise this morning.

There is so much coming up in the next few months I think I am feeling a bit overwhelmed. Silly me. Letting my head take over again. I must take a deep breath and take it all in and enjoy life.

Here are some snaps of the photo shoot. I will be featured in Octobers’ issue of the Prima magazine which is out in September.

 

 

The lovely ladies organising the day….
Styling us…
A quick snap of a four of us….
A sneaky peek of the computer…..
Modelling skills come naturally to us…

There is a battle going on inside of me….

The weekend was another memorable one. Pete was given a car for the weekend… not just any old car but his favourite car. We had the pleasure of driving up to our friends in a Bentley! Pete was like a kid in a sweet shop. It was so nice to see him so very happy.

I had a pretty bad night Friday night and despite wanting to stop annoying myself and anyone around me I just couldn’t help the niggles and pains I was experiencing and I still had one more night of injection side effects to go through.

I decided I wouldn’t have any pain anymore and took plenty of paracetemol. I still didn’t sleep and I woke grumpy again. Part of me was wondering is it the vaccines, is it the il2 injections, or is it the scorpion venom?

I simply can’t put my finger on it. To be honest all weekend I was off. Not my vibrant self and it was getting me down a bit. I hate not being ‘right’. We still had an awesome time with friends and I loved cruising around in a £200,000 car and having a little drive of it myself!

When we got home we cuddled in the garden for a while and Pete was just lovely as always. He made a tasty paella, and made the ambience perfect for our friend who spent the evening with us. It was just bliss. I think having friends around and doing things is good because it takes my mind off ‘things’. It’s when I’m left alone again I’m not myself.

Today I have been really busy but one great thing is I slept really well last night compared to the last week. I had no pain what so ever. This indicates it must be those il2 injections. I think I may reduce the dose next time around.

I still haven’t received any scan results and the secretary has even emailed the radiologists to find out where it is. I emailed the secretary to tell her that I will not be attending my clinic appointment tomorrow in that case. She totally understands. To be honest, today I am past caring what that report has to say. I almost don’t want to know. I am living in denial today.

This morning I was woken by my lovely man who got up early and cleaned everything from last night, bought me hot lemon and my medication. He told me to stay in bed and try to chill out more because I don’t do enough of it! This is the man that works all the time, has the pressures of the whole wide world on his shoulders. He is so super wonderful it makes me cry. I feel guilty for moping around and not being on top form.

I don’t know what is wrong with me. I am not myself. And I don’t like it. I feel a bit in limbo. I am nearing the end of my health counselling course and there are a lot of decisions to be made and work to be done. I simply don’t feel like it right now. I keep wondering if it is hormones because I usually want to do everything! I’m normally planning and doing and never stopping. The not doing at the moment is making me feel worse I think.

I have so much to be happy for and so much to look forward to. Yet I feel like my life’s plans are all squiffy. I am not sure if I am putting things off and thinking I’ll do them when I am better. How much better do I need to be? Let’s face it there is nothing wrong with me really. Only what they tell me.

So there isn’t anything that should be stopping me doing anything! I need a plan of action for every element of my life; a re-evaluation. That’s it. I need to step back and make a decision on what it is I want to change and how I want things to be.

I want to incorporate the health counselling into my daily business and advise those who need my help such as other canSer survivors who are just beginning, half way through or who have come out the other end and want to stay well. I can advise on every element of my ten point plan and that includes exercise, nutrition and supplements, alternative treatments, meditation and consultants. I am living proof of the information I can provide.  OK, I too have down days but that only makes me more real.  Even I need advice and therapy too, but I think by making a plan I will get myself to a happier more vibrant me again.

It’s amazing how such little niggly things can really throw you off course. Not only the pain at night but the acidic feeling in my tummy has been upsetting me. Pete pointed out that there is a battle going on inside of me. Of course I am going to feel it sometimes! He is so logical…But that’s why everybody needs somebody.  And I intend on being that ‘somebody’ for many people hopefully, who will require my services.

Here are a few shots of our weekend that made me smile;

Another good woman….

This weekend has been a little unexpected. Saturday morning we got up yet again at 
the crack of dawn to get on our way to a conference in Exeter. Ordinarily I wouldn't book to 
go to canSer conferences but this event had Prof Vogl doing a presentation and seeing 
as I very nearly went to see him and his treatment TACE is still an option for the future 
we thought it would be a great opportunity to get the nitty gritty and meet the man 
himself. The cost of the conference for one day was a hefty £62.50 each. I didn't want to 
see any other presentations. 

We arrived early being diligent as usual and we mooched around the scant stalls 
that were there selling supplements, juices and more. To be honest I thought there 
would be a lot more there.

Actually to point out when I booked the event it was being held in Bristol but at the last 
minute it was changed to Exeter apparently because someone made a complaint about 
it in Bristol. Something to do with not approving of complementary therapies for canSer? 
This was clearly annoying because I am not sure I would have booked in the first place 
had it been in Exeter. Anyway, I went to a volunteer and asked when can we be seated to 
see Prof Vogl's presentation to be told he wasn't there! What? His son had been ill and 
he couldn't attend. I asked how long they knew that he wasn't coming? A few days! What? 
And they didn't tell anyone? No, they had a video presentation to show instead.
Not good enough. Both our hearts sank and we felt gutted to be honest. The fact we 
could have been doing something else, the wasted time and money. The volunteer said 
there are lots of other good presenters today.. Like who? She didn't know... 

We asked to speak to the event organiser. Pete's mind was whirring and I could tell 
something was really wrong. He wanted to leave and let me speak to the organiser 
as he felt he might lose his temper but I made him hang on. He was so very calm 
with Kat, the organiser. She was hugely apologetic and we didn't blame Prof Vogl or her
for him not being there but they should have informed us. Pete calmly explained that 
for people with canSer time is of the utmost importance and having huge disappointments 
and let downs are no good for stress levels. He said that is time we will never get back. 
He got his point across amazingly. Then he left to go to back to the car. 
Kat said we could have a refund and said she would get us the video presentation. 
I have emailed her today but no reply as yet.
 
I felt guilty as it was me that convinced Peter we should go. He was lovely but we both 
felt let down. You can never tell what is going to happen, can you?
(We also missed England play New Zealand at rugby.. That too was annoying)
 
Still Saturday afternoon turned out to be a corker of a day and we pottered in the garden
 getting more jobs done and soaking up the sun.
 
We woke Sunday wrapped up in each others cuddles and I had a plan to make the 
most of the weather and do a job that had been on my list for almost a year.. Creosote 
the cabin. Bounding to get my work clothes on, Pete stood in front of me and said 
I should cuddle him.... Why? 
Now I don't usually ask why, as I love cuddles, but I could tell something was wrong.
He had just looked at his phone and read a message that had been sent to him at about
6am from my friends husband. It said , 'Leanne left us this morning.'
Uh... I feel sick even thinking about it. I hadn't heard from Leanne since 
she was admitted to hospital a week ago, she had been messaging Pete as she didn't 
want to worry me telling him that the chemo had done its worst and stripped her body 
to the point of no longer being able to have any more. They had also found she had 
pneumonia in her other lung. As always we sent messages of positivity to get well and look
after herself and right throughout my holiday I was worried about her, sending her messages 
hoping she was reading them and hoping even more she would reply. I feared the worst and 
sent her hubby a message on Wednesday. He said they were taking her home on Friday. 
We are so saddened. Sunday was a blur. I got dressed and proceeded to carry on with the painting. 
Both of us worked in silence and every now and then we would say something that we were 
thinking about her. I honestly feel a hole. Leanne was younger than me. She didn't want to die 
and really believed she could fight it. 

We can't comprehend how hard it must be for her family and husband. We only knew her briefly 
and we feel a huge loss. She was my canSer buddy. We'd message every day on text, Facebook
or email. We'd chat on the phone and sound it out. Meeting her in London recently was just like 
we had known each other for years and her hubby said we were like sisters. We had plans 
for the future. I thought we were both going to conquer this disease and prognosis together.
I really believed if anyone could do it, Leanne could. Our stories are so similar.... Until now. 

I can't help but be honest and tell you that I start thinking 'Oh god... How long till it's me?'
I've noticed from the past few deaths as to how quick it all happens. Within a few days it's over. 
Only a week before planning on future treatment to literally dying. I don't want to die reluctantly. 
Does that makes sense? I don't want to be afraid and I don't want to fight dying. 
I want to be a peace with it. I hope Leanne felt peace. I already miss her....
 
I meditated this morning and Leanne was there. I feel she is one of my angels.
 
I don't have any intention of giving up and I will not be reading about other canSer 
survivors saddening stories any more. (I just read one this morning not by looking for it, 
it just came up on my feed, and that scared me enough not to read any more.) 
I can live my life as I am. I believe I am doing the right thing and I will battle on until it's 
my time.. But I still believe I will be a miracle...

 

Met with another Prof..

I am having trouble finding time at the moment. I feel hugely overwhelmed with things to do and things I think I should be doing…

Mum stayed with me last week whilst Pete was away but unfortunately she was ill for most of the week.

At the end of the week Pete and I went to London to see yet another well known Prof. This time it was Professor Stebbing.

We sat patiently in the waiting room when Prof Stebbing walked in the front door and said hi to a patient of his. I knew who he was as I had googled him but was a little surprised as he stared at me, almost trying to figure out who I was. It was like he knew me.

We had the pleasure of meeting him and his colleague also from the Imperial College too. He fired a lot of questions at me and a-hemed as if he already knew the answers. Maybe he had googled me?! Ha-ha!

I found him very friendly and sympathetic. I must admit I was hoping for an amazing meeting like my friend had experienced but sadly the appointment was over in half hour when we were asked if we wanted to talk to his colleague about genetic testing.

During our meeting with the Prof he did discuss immunotherapy and his interest in a combination of drugs and immunotherapy and there are some trials, one of which I may be eligible for.

Whilst there, Prof Stebbing said what a great guy my oncologist Prof Harris is but suggested that instead of having Eribulin as my next chemo of choice to opt for Gemcetibine combined with Carboplatin. He dictated a letter to be sent to Prof Harris making this suggestion.

Taken to another room I spoke with his colleague who wowed us with a potential genetic mapping process and how we would be able to discover the mutations in my tumour and see what genes are affected. This would mean treatment could be specifically catered for my individual genetic mapping. This could potentially open up many doors. Apparently it would only take three weeks for this process but first I would need a biopsy. I was under the impression I couldn’t have a biopsy but was informed that I could. So I have left a copy of my ct scan for a radiologist to take a look at and to confirm if this is the case.

Then came the news of how much genetic testing would cost. It would be sent to an American company and the cost would 7500euros.  Oh….

So I left feeling like I had more questions than answers. But I always do. I did feel relieved to have met such a nice oncologist but felt disappointed he didn’t have more time. I wanted to pick his brain on everything like Prof Vogls treatment TACE and so on. But then I don’t suppose he would comment much on things they don’t know much about.

So where am I up to?

I have a copy of my ct scan with a radiologist who is going to be telling me whether I can have radiofrequency ablation and a biopsy.

I am waiting to hear back from the ‘board’ to know if I am accepted on an immunotherapy trial with Prof Dalgliesh.

Once I know about the biopsy, this will determine whether I am going to go for SmartGen genetic testing.

All the while I have chemotherapy booked for the end of April. Should I decide to proceed with that, I am now considering Gemcetibine and Carboplatin as recommended by Prof Stebbing. He said that I won’t lose my hair with this combination and can always have Eribulin at a later date.

Zometa and Il2 are still being recommended but at this point in time I am unsure as to where I can get this as Prof Harris it isn’t available on the NHS for triple negative breast cancer.

I am feeling uneasy again. It’s so ironic. I said I didn’t want chemo for a few months and I got my wish. But I am filled with dread as to what my next scan will say.

Pete and I drew a chart yesterday of all the potential treatments available to me. I should be feeling quite happy as I have lots of options available and this could see me through at least another few years all going well. Pete said not to expect the next scan to be good but be assured that the rest of my body has had time to get stronger and be ready to fight again.

I guess I am just worrying and frustrated as I want to know whether or not I have the green light for the next few treatments. Suspense is not good for me…..

But I have to remember I feel well… I look well and I don’t want to miss this time. What I really want is for this all to go away… Ho hum.

 

The weekend flew by as usual. Yesterday was lovely working in the garden and I was nursing a bit of a hangover. I think I let off a bit too much steam as I drank way too much on Saturday at my friends hen do… but never mind.

We snuggled up in front of the chiminea last night enjoying our extra hour since the clocks changed.

This week has lots to do and I hope that good news is coming…

 

You never know what tomorrow may bring…

The weekend was unexpectedly great. I knew we had a fun time ahead as our friends were coming to visit but sometimes it’s great to having any expectations and it turning out lovely.

It always surprises me that you never know what tomorrow may bring. The weather was gorgeous and we had plenty of time revelling in our back garden. Friends arrived and cooked us a tasty Chinese meal, then sang round the chiminea until about midnight. (Sorry neighbours!) It was so relaxing and probably one of the most memorable evenings in ages.

 

 

I had no particular plans for Sunday. Once our friends left all I thought was that it would be really nice to relax reading in the sun, hang out washing in the fresh air and take it all in. Pete had other plans and off we went to a big DIY store apparently to look at prices. We came home with a power jet wash and got to assembling it and then ‘trying’ it out. Oh my god… it is so satisfying watching each every patio slab and decking plank change from grotty black to bright natural sand and brown colour! Once I started there was no stopping me and by the end of the day I had completed the job. This had been on my list of to-dos for ages and I didn’t really ever expect to achieve especially I had no idea we would buy some decent kit to complete the job.

I felt a natural high and I can’t stop looking outside at the wonderful results… How funny that something so mundane to most seems so exciting to me!

But it all comes down to not knowing what each day brings and keeping an open mind and going with the flow.

I spoke to my friend yesterday who has been to see Professor Stebbing, a triple negative specialist in London. I have been recommended to him over a year ago but never went to see him. I recently felt the urge to get an appointment but hadn’t had any reply. As usual I thought this was just how it is as all other doctors don’t usually reply at any great pace or I get ignored completely.

Spurred on by my friend I made the decision to email him on a Sunday never expecting to get a reply. I did and his PA emailed me too. I have finally got an appointment. Yay!

I felt quite excited by it as I have been told he is very committed and caring. He believes that secondary cancer will be classed as chronic disease within two years. Well I best stay alive another two years at least then!

A delivery of books arrived at the weekend also and I started reading about having a charmed life. It’s a bit like, once you start looking for the positives and the little miracles, they start coming all the time. I guess that kind of happened this weekend in more ways than one. The more you look for them there they are. It has really perked me up and I feel like I am living much more in the present. I am back to feeling like I have drive and less afraid.

However, I still feel a bit unsure about what to do with regards to treatment but in the meantime I am pursuing GcMAF homecare. I have successfully injected myself and today I have used the nebuliser. (Actually feel a little light headed)

But I will proceed with booking for Germany. Saturday morning, the first day of the week that Pete gets a lie in we both strangely wake at 4am. We both got chatting and I felt it was a good time to discuss my worries about what to do treatment wise. We both agree that doing immunotherapy with Doc Nesselhut and then TACE with Prof Vogl is necessary… my reservations are whether I should simply stay here in the UK and have chemo on the NHS. Pete says that we should keep that as a back up and get going with Germany. So I have provisionally booked hotels but not flights yet. I am booked to see Prof Dalgliesh this week and I wonder if he might be able to shed some light, steer me in the right direction or something!

My friend counselled me at the weekend by saying that I should follow my gut. My gut isn’t totally sure at this stage. I think this one will take time to organise but I only have a few weeks. Eek!

All I know is right now at this moment in time I feel good and I have to hang onto these times. I must not take for granted feeling well and symptom free.

 

Burns Night fiascos and a new week ahead…

The end to last week was highly memorable. We had friends over to celebrate Burns’ Night. I did lots of preparation in the afternoon and then Pete made magic by creating a perfect meal and lots of fun entertainment. Everyone made an effort by dressing up and we all had a brilliant time. Maybe too much fun on knowing that everyone felt pretty delicate the next morning!

 

The weekend then followed on by being a very chilled out one with our good friend staying with us. We ate healthily and spent quality time just being together. Even though it wasn’t packed full of activities I still didn’t want it to end. I never do.

I love being with Pete so much it always feels a bit sad at the end of the weekend. But I look forward to doing my own rituals and getting back to being really focussed. Mondays are the hardest I think and with this increasingly changeable weather it’s hard for feel bright when it’s so dank outside.

Nevertheless I have still been having fluffy feelings of how much I love my life and I can’t wait cuddle to Pete again.

I have today been practising taking consultations for the health coaching course I am on and as well as that studying for a test that we have this week. On following lots of other students online I have been introduced to many things. One thing I noticed today was a brand of products that are made in the UK and are completely customisable for your own individual needs and of course are completely organic and nasty free. I want to extend my own passion for health and nature into my business and today I found what could be the perfect range of products for me. I have contacted them and await some samples to try out. Once I know what they are like I will reveal all to you!

I still haven’t booked to go to Switzerland for GcMAf treatment. It seems I am still waiting to see what dates the clinic is available in March. I am not worrying too much but just know it could all be a bit of a rush when I do finally know what’s going on inside of me. I have everything crossed..

For ladies that need some motivation here’s a little lift for you….

Every girl loves a little green box….

This weekend was a real treat. After having taken all my crystals away and hidden them and also removed the crystals from my body including my engagement and wedding ring we decided that I couldn’t very well wander around without anything on. I felt naked without them. So we decided to take a trip to London together. A little Sunday mooch around the shops but had one in particular in mind! Tiffany’s… every girl’s favourite store.

I didn’t want to spend much money as I am very aware of expenditure on everything like treatment and supplements and so on. But I did find something suitable and the hubby said I had to have it. I am so pleased he did.  I love the hearts on it. I think it’s so right for me and reminds me of all the love heart pictures everyone sent my last year. I like to think of it as my light and love ring. I’m a lucky girl….

Last night was quite turbulent in more ways than one. A storm hit the south coast last night then made its way to us by about 3am. It was noisy and a little bit scary. I had visions of the chimney falling down. I’m not sure if it was the noise and distraction but I had hot sweats all night long. I felt yucky. It’s the only way to describe it.  I am not sure why I am having these as I am not currently taking chemo as it’s my week off it. I hope tonight is better….

Today I have been busy with clients but that’s never a complaint as I love my work. Before my first client I had a Skype meeting with a lady called Patricia Peat from Cancer Options. After many years as an oncology nurse Patricia saw the need for people to have access to good quality information about all approaches to treatment so they could take charge of their cancer decisions. Cancer Options is a private cancer consultancy where you can obtain information and advice on all different cancer types and cancer therapies.

The reason I wanted to talk with her is to get a ‘professionals’ view on what she would suggest I should have. Pete and I throughout this whole thing have found treatments and made our own decisions. Ok they are working but sometimes it would be nice to know if there is anything we are missing and also what is cutting edge. Someone like Patricia speaks publicly and knows of many doctors and integrative approaches to cancer. I was specifically interested if she knew much about triple negative breast cancer. As it was our meeting didn’t last long what with technical issues her end but she seemed lovely. We will be talking again but in the meantime she is going to email me her thoughts and treatment options. I had already divulged my whole medical history and what I am currently doing. She actually seemed impressed and wasn’t sure she could suggest much else. But I have questions for her on things like mistletoe therapy and haelan 951. She did seem to have knowledge of triple negative so I think I will pursue that line of questioning next time we speak. So far though I am pleased that I have found her. I look forward to hearing more advice from her in due course.

 

Last night we made a delicious vegan meal. It was our take on chilli con carne. We used organic soya to replace the meat. I don’t usually have soya because of the implications with it but this was a one off. We also replaced the rice with   cauliflower that had been whizzed in the food processor. It was amazing and such a great alternative. Pete says he preferred it to the real thing! Feast your eyes on this….