Off again…

I haven’t been ignoring you but I have been having fun… again. Even amidst all the drama we have plans and I aim to keep hold of those for as long as I can.

Pete and I had planned to visit friends in Ireland this weekend and the booking had been in place for months. I was worried that things would clash but even if they did i would’ve moved them in order to visit our dear friends.

Pete and I had a long weekend in Cork and were treated like royalty. We laughed, danced, ate (a lot) and drank…Each day was different and on Sunday we drove to the beautiful Inchydoney beach and stayed at the beautiful spa there. Oh it was blissful. Yesterday we flew home and as ever reluctantly said goodbye to our wonderful friends.

Friday morning whilst at the airport over breakfast Pete and I got chatting about what to do next. I had already been in contact with Professor Vogl in Frankfurt regarding having TACE. It had been pencilled in for Wednesday 15th, tomorrow. I wanted Pete to email as he is German and to tell him it wouldn’t be feasible because of timings etc, but having spoken to my friends last week and also because I am acutely aware that I really need to get some treatment started Pete said we must go.

He checked with his work diary and made so many changes and that was it I started booking the Eurotunnel and hotels. Emails exchanged between Pete and Prof Vogl and we have agreed that I will be there tomorrow morning at 7am to see him and have treatment that same day.

Right… it’s all a whirlwind and whilst I have an hour before we leave I decided to update the blog.

I feel really weird right now. I have been contacting many clinics and having many email exchanges and I believe that whilst I can I should. The worry of logistics and money are always there and the upset this is causing Pete really worries me. I wish it was different but I have to try. Things will fall into place.

So this is how it stands. Today we leave and drive to Frankfurt. Tomorrow morning I have TACE then we drive to Belgium for an overnight before driving back to the Eurotunnel to get back to the UK.

Friday I have booked to see Dr Julian Kenyon on the referral of Dr Nesselhut to discuss Photodynamic therapy. We have heard a lot about and my pal Peter Trayhurn had good results in his lungs with this treatment. I think it is definitely worth a consultation. Julian actually said to get an appointment for Friday, on his day off to get this sorted. I called this morning and have booked for 11am in Twyford.

Next Monday I have an appointment at the Churchill hospital to have glomerular filtration rate which is apparently to see the functioning of my kidneys. Eh? I contacted the secretaries at the hospital who told me this in preparation for having the carboplatin chemo on the NHS. OK right. Well I will go for that even if I won’t be starting that imminently. I am booked and have signed the consent for carboplatin and gemcetibine chemo but I may postpone for a few weeks.

At the beginning of November I have DC therapy booked at Doc Nesselhuts and may also squeeze in more TACE with Prof Vogl AND even have insulin potentiation therapy with Dr Seibenhuner. I have emailed Dr Seibenhuners clinic to find out more but as yet haven’t had a reply.

After that I may decide to go for NHS chemo. I think it could be a good way to go for a short while…

Next Wednesday i am booked for the immunotherapy vaccine at the London Clinic and think it could be good to still give that a go.. Another hole in my arm but what the heck. On that same day I am also booked at another clinic in London to have a discussion about having Mebendazole prescribed.

It all sounds mad but maybe this combination could be good.

I am still waiting for a reply from St Barts but just now had an email from the secretary at the Churchill hospital who says she had a contact at the gamma knife department at St Barts who says they will be in contact soon. Not soon enough for my liking… get these buggers out of my head!

I feel actually a lot better in many ways but worse in others. Over the weekend my cough was annoying to say the least but then it turned into an actual infection on Sunday night. I actually feel better coughing up phlegm than I do just having a dry cough.

I feel less sketchy than in my head. I definitely felt like I had cognitive difficulties the week before but now I have clarity and can think of what I want to say. I am a little dazed with the steroids I take but I am managing them well. I will soon change the dose again as suggested by Dr Oliveros.

So that’s where we are. By the end of this week Pete and I will need to catch up on Strictly Come Dancing and The X factor and hopefully normality will resume… sort of. For Pete this is a nightmare. We are creatures of habit and nothing feels right. All we have is each other but with me having symptoms and feeling constantly emotional it is the hardest thing for him to deal.

Tempers flare and emotions pour… I find it hard not feel guilty and wish that every day could be different. I can’t and I refuse now to try to change that. I have to do this and try. I can still be canSer free and I just want to prove that.

I have taken the big job of contacting all my current clients that are booked in my diary and have told them honestly that i will not be working. My job is to get better and when I get more time at home I will return to exercise and more meditation. I long to feel well and eat better and live cleanly. I am not moaning about the food I have been eating recently. I feel nourished and actually have a huge appetite which I think is great. I put on 3 pounds over the weekend and I don’t care!

I have tried to balance my diet this morning by having a veggie smoothie, an alkalising lemon drink and bravo probiotics yoghurt with fruits. A good start I think!

My bags are packed and my kitty is being cared for by wonderful friend Sarah once again. I don’t know what I would do without her. Hopefully everything will go smoothly over the next few days…It’s going to be an experience that’s for sure…

I’ll keep everyone updated.

Light and Love. XX

Good news re gamma knife and now the next step…

I waited patiently Tuesday with no reply from Dr Oliveros regarding the result of the MDT in London. That was a first for me! By Wednesday I was getting a little worried but for once didn’t feel the need to hound the department.
My patience paid off as I got the call I was waiting for. Dr Oliveros said that Dr Plummer at St Bart’s had agreed to give me the gamma knife treatment under the NHS! Result!

She said that my notes were being sent over to him and I should hear from him within two weeks… Two weeks? Ok not to panic. I kinda thought I would be hearing sooner than that. She said if I hadn’t heard by then to contact her and she will chase up.

We discussed  the steroids I am taking and she said I could reduce right down after five days.. Good. I feel very bizarre on them. Or maybe it’s the concoction of codeine, paracetemol and steroids. The cough is my main annoyance at the moment.

She asked how my appointment went with Prof Harris and she could see that I had consented to chemo.
She seems like a really nice doctor.

What she doesn’t know is that in the meantime another canSer friend has emailed me and told me about nano knife. A private treatment available here in the UK. My friend had given me the contact details and I didn’t hesitate to call. The secretary adviced me to get a copy of my report and send to Professor Leen at the Princess Grace hospital so she could show him before he goes on holiday.

Last night I had a Skype chat with some friends from New Zealand who now live in Frankfurt. They gave me invaluable advice on treatments such as TACE as well as advising me on IPT with a Dr Seibenhuner. It seems quite intense but if I can coordinate everything it could be a really great way to ‘go hard’ combining all treatments including DC therapy with Dr Nesselhut. I feel very lucky but now have to try to coordinate as much as possible in the diary.They advised me that combining such things as radiation with other treatments releases antigens and can work synergistically.

Dr Nesselhut mentioned having PDT- photodynamic therapy and mentioned contacting Julian Kenyon here in the UK. I have done that today. It’s all worth investigating.

So now it’s back to waiting but also deciding our next step. I won’t rule out chemo as I am better off having something that I know could mop up the cells. I just want to consider the side effects such as numbness in my hands.

So that’s the update for now….

I didn’t win the lottery…. No surprise there then!

I didn’t win the lottery….No surprise there then. My luck hasn’t changed. Or has it?

It has been a weekend of tears, and love and support and so many emotions I don’t no where to begin. Pete and I decided that we would have a weekend of not getting out of bed. That lasted all of about 2 minutes. As usual we couldn’t help ourselves especially as the weather ended up being really lovely and I always feel that we should at least get out in the day light whilst the weather permits. We did have plenty of time to relax and although sleep was a bit a hit and miss we both felt relaxed. I had one good night one bad but I was pleased that I got any. I have been walking around in a blur. Now this could be down to the fact I am on a cocktail of steroids and also codeine, in the hope that my headaches will pass as well as the cough. Interestingly the cough is annoying me more.

This morning Pete and I went to the hospital this time to collect my CT scan results. As Pete called it, Part Deux.
I don’t know how I thought it would go but I didn’t have any feelings either way about it. I think that I thought things couldn’t really get any worse. And they haven’t really.

The good news is there are no new ones in my bones or abdomen and that the ones that are in my lymph nodes and lungs are actually a mixed bag.

The ones that have been blasted with radiofrequency have actually got smaller and that seems to be looking good.
The ones in my left lung have stayed the same.

Then there are new ones appearing albeit very small in my lung. There is also pericardial effusion around my heart.
The right hilar lymph node is necrotic but they cannot tell if that is because it is growing quickly. In fact all of the ones in my lymph nodes are a bit bigger.

Prof Harris has suggested that I get the gamma knife treatment all sorted and then that should make that better. There is of course no way of knowing if that means they won’t come back but he suspects we can keep on top of it. He does think we should opt for a systemic treatment like chemo but he said is up to me. He suggested getting started on something like carboplatin and gemcetibine and we thought starting the consent forms was the best way to go especially as it will take about three weeks to organise and by then my brain treatment should be sorted.

In the meantime Pete and I already have a plan hatched to go to Frankfurt for TACE by Prof Vogl. Since getting home I have had a stream of emails from my Europeans friends and they have been advising me that timing it with treatments to Dr Nesselhut would be highly synergistic as well combining it with insulin potentiated therapy. I think this could be a really good route to take. We just need to organise that now too.

As expected I am still waiting for results from the MDT that occurred today at St Barts. We told Prof Harris that Dr Oliveros had said we can only have it done if there are three tumours of less. He couldn’t believe it. Prof Harris has changed and I believe it is because he has seen so many changes in the cancer world. He is so much more open and friendly now too.

As much as I don’t relish going on chemo it is definitely something I would do but I will lean for TACE first. I don’t want to spend any more money but I do want to try other things and I do want to give it my all.

I am bit disappointed that I haven’t yet had a call but I trust that Dr Oliveros will call when the time is right.

I suggested to Prof Harris about a trial that is happening at St Bart’s that my friend has told me about. It is using immunotherapy and has been raved about apparently. He thinks I won’t be able to get on it because I have already had immunotherapy but he said it is worth a try.

I think I will continue with the immunotherapy at the London Clinic. I still think that things are going well in that department. The thing is if these brain tumours hadn’t appeared it would still be going in the right direction… sort of…

I have been cancelling clients today and been making a plan for taking more time for myself… The thing is until I get an answer from Dr Oliveros I still feel aloof.

I felt really loved today at hospital. Pete was surprised at what staff in the pharmacy and the nurses who work with Prof Harris were all like with me. The thing is I have been going there a long time. They all bent backwards for me and made my life as easy as possible. I am feeling really loved.

Boo… brain tumours…

So I went to the hospital. Pete came with me and was really sweet and asked if he could come into the MRI room with me. Have I mentioned I hate MRI scans? He looked at me the whole time through the little gap.

I then had a CT scan. The guy was really interested in a story that Pete told him and I don’t know if that was a good thing or not but it took our minds off what we were there for. Then, on our way to the CT scan they said I was to be seen in triage. Oh god. I knew exactly what that meant. That meant they needed to see me to give me bad news….My heart sank and I felt dizzy with sadness.

It was all a bit of blur with my mind racing and then putting on a brave face I was told that there were four tumours in my brain. Oh B*****ks, for want of a better word!

A few things were asked but I was told that I had to go on dexamethasone that night and to continue taking it the next day. Did we have any questions? Um…….? It was all a bit too soon for that.

What we should have asked was ‘did I really need to take the night time tablets as they make me frantic?’The answer should have been yes, or alternately they should have perhaps pointed out that it was necessity to take those tablets.
I woke up with such a terrible headache and found out that I should have taken the tablets because the headaches were so terrible due to the inflammation that the MRI caused. Thanks guys for telling me! But then I guess they expect  normal people to follow their instructions. Have they met me before? Ha-ha.

We came home and Pete was very clear on it all being ok. He said that there is nothing new going on there. It has been like it for six weeks, there is no need to worry now. I know he is right and I know that nothing has changed. We just needed a plan. As always.

The next day I got a call at home and it was Emma, the lovely secretary from the NHS. She said that could I go to see Dr Oliveros at 4.40pm that day. Yes, absolutely. She told me where to go and I let Pete know. We got there at 4.40pm and was told there was a delay but that’s standard I guess when it’s late in the day.

By this time we were both in quite good moods, bizarrely enough. The news had sunk in and even though the meds make me feel manic I felt quite calm and I had spent the day on the sofa. However that wasn’t as much fun as I had hoped. Time was slowly passing and I just wanted to get on with something.

Dr Oliveros is lovely. Really happy, very explanatory and an all round nice girl. She explained my options. Firstly; surgery, secondly; gamma knife and thirdly; whole brain radiation. The first one, I can’t have. It can only be for someone with one tumour. The second is potentially an option although because I have four tumours I am outside the remit. Can you bloody believe it? However, Dr Oliveros is going to put an application in for consideration anyway. It would be done by a colleague of hers at St Barts, London. Even though she knows there is a chance it might not happen she still feels that we could just slip through the net.  Thirdly would be whole brain radiation. Now this doesn’t fill me with joy but I have spoken to someone who says it is potentially very good. The down side is cognitive issues as well as hair loss etc. The course would be for ten days and that is it. I would need a mask so I cannot move for about three minutes at a time.

So that makes me feel quite good. The fact that she is trying for what thinks would be a good option then getting me to sign the consent form for whole brain radiation just in case.
There was an option to say if we cannot get the gamma knife done because of it being over the limit of tumours, can we pay for it? Well if we must but come on! I tell you what; we pay for the first one then you pay for the others. Deal?
She did say a few things that worried me. She said that she was surprised I looked so well considering the swelling was so bad. The tumours are tiny, the biggest only being 1.5cm. It is the swelling that is causing the issues. She said also that this is very serious. Do you think we didn’t know that? We were just trying to make light of it whilst sitting there with her.

We came home and I have to say I do feel different. I don’t know if it because I have the knowledge that something is up or if because I am scared or just because….

I still don’t have the results for the CT scan as yet but I am due to see Prof Harris first thing Tuesday morning. That will then tell me what is going on everywhere else.

I went to see my acupuncturist today and we chatted about il2 injections and their purpose. He said that it is quite likely they are doing their job. This is something Pete has also said. He said that the injections were working so well that it is highly likely that is why there is so much swelling. Exactly what Mr G said. He said that the DC cells and the il2 were all having a positive effect (well and negative effect) on this.  Well that is good in a way but also not great for me, in others.

It’s all swings and roundabouts isn’t it?

I feel like I am chasing it around my body. And what about this blood / brain barrier? How did that all over of a sudden stop working?

The doc said we don’t know if there are more in there. I hope, of course, that there aren’t. I am assuming as the tumours are small and they haven’t been there that long.

So where does that leave me now? I guess that means we wait for more results.  In the meantime I will get more info from Prof Harris and then find out from Doctor Oliveros the next step. I have everything crossed that she can organise the gamma knife. It would mean less invasion of my brain!

In the meantime I have informed everyone who are involved.

Dr Nesselhut wants more info.

Prof Dalgliesh seems to think gamma knife is a great option and if they won’t do it for free here to go and see one of the best in the UK.

I have also contacted Prof Vogl, who does TACE (trans arterial chemo emobilisation) This can not only help the tumours in my lungs but all slow/stop the ones in my brain.

Today I have had a call from the London care oncology clinic who has said that I can have an appointment to discuss Mebendazole. Just because one element of treatment isn’t working doesn’t mean I should stop everything. Therefore I have to continue with my plans as before and investigate every avenue.
I feel better knowing what is wrong with me. I feel better having a plan and I also feel better on the whole. I do feel a bit sketchy but that could be the drugs. Bizarrely enough the drugs reduce inflammation as they are corticosteroids. This is again the body using my immune system to help heal me.

The support I have been given is overwhelming. I cannot thank everyone enough for their love, respect and drive that they have given to both Pete and I. I simply couldn’t have done it without Pete and he was scared too. Bears aren’t meant to be scared and he didn’t like it. I feel terrible knowing that everyone has to go through even more of this crappy stuff but I can’t help where it goes. I think I can, but I can’t.  I know mind over matter helps but who knows how this disease really works.

I have had over 3000 people look at my status on face book. That’s crazy and so lovely knowing that people really care. If I could thank you personally, I would.

So that’s that, the next chapter of this book. I have to keep going. There is no other option. It seems harsh to everyone involved and a real kick in the teeth but as I always say, ‘no one said it was going to be easy’. Damn right….. Anyway I have bought a lottery ticket tonight maybe my luck will turn!

Headaches…..

Today is the dreaded MRI and CT scan. Why dreaded? Well it’s obvious really…

I won’t know the results for a few weeks but right now all I can think is, ‘Please, make this bloody headache go away!’

I am not so concerned about the cough, although maybe I should but I never expected to come back from my holidays feeling worse than when I went away.

All I keep thinking is that it could be anything. Headaches are caused by so many factors and this one keeps changing from the side of the head to on top of the head and so on.

I’d really like to know how to nip it in the bud….

The next two weeks are going to be long but onwards and upwards and if I can shake off this drowning feeling then all will be well.

X

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.

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 : HUFFINGTON POST

Followed by her husbands reply; Well, it’s not quite the end…

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

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

It keeps life exciting, eh?

I honestly don’t know where the time goes. I was thinking the day before we left the villa that I was going to leave a lovely parting message and my thoughts on the three weeks that had passed.

But before I knew it we were on the road travelling hundreds of miles to get back home. It is now Thursday and we returned on Sunday. I have been thrown back into work (my doing-I booked up straight away) and the domesticities of life.

Despite having a washing machine there I still had many loads of washing and have now cracked the pile of ironing.
Then I was off to London yesterday to firstly visit St George’s hospital to collect il2 injections then hopped on the tube to the London Clinic to receive the IMM101 jab.

It is the last of the il2 injections and part of me isn’t sad about it. I performed the injection as instructed and this time took lots of paracetemol to avoid any side effects. It worked to a degree… Although in the middle of the night I felt hot and very uncomfortable. I decided to take more paracetemol but it didn’t really help. I had an unusual sensation on my arm further down from the jab that I’d had that day. I had a little rub of it and it was an old vaccination site from when I visited Dr Nesselhut. Not thinking at the time I ignored it but now I am conscious I recall my heart rate being elevated and I was having slight trouble breathing… Um, alarm bells!? I think I might have been having an allergic reaction to either or both of the injections I’d had that day. It was very similar to how I felt at Dr Nesselhuts that time I became allergic to the gamma delta cells, but on a lesser scale. Thankfully.

I remember my kitty jumping on me at what I thought was about 3am. I thought, ‘How did she get in here?’, and then looking to the other side of the bed saw that Pete was already up. I was so confused.

I feel pretty drained right now and like I am fighting something. Working today is helping take my mind off of it. I have another injection to do tonight of the il2 and just need to get a cup of ‘man up’ and stop moaning.

I feel all I do at the moment is moan about how under par I feel. I have to admit I haven’t felt 100% in ages. What with nausea and stomach aches, flu like symptoms and this blood cough which is driving me mad!

It’s hard not to think anything of the cough. It is still there and makes me feel rotten. Only because it catches me out. And it’s a non-cough. It’ not producing anything and it really doesn’t feel like an infection. Well I hope. I have been chatting to a virtual friend who says she has been experiencing aches and pains. It is so hard living with canSer and not think the worst of every niggle, cough and ache.

What else has happened this week?

I have been in touch with the London Care Oncology Clinic this week trying to firm up an appointment to see someone so I can have mebendazole prescribed. I have to get a referral letter from Prof Dalgliesh who is on holiday at the moment.

I have also been in contact with a doctor in Wimbledon who offers intravenous treatments such as sodium bicarbonate and salicinum. I had to send a letter of consent from my oncologist, which I have done. I have asked a few more questions before I book an appointment but I don’t seem to be getting a reply.

I sent Prof Vogl another message as he always seems so keen for me to go there and crack on with his TACE treatment. I asked if I should wait until my next scan. Typically he says that I should get there ASAP… Hmmmmm
Monday, Pete and I fly to Germany for my next round of treatments. It has been about 10 weeks since I was last there so I am quite keen on getting some sort of boost. I also need more scorpion venom and Nesselhut is the man I buy it from.

So as usual a lot on….. But it keeps life exciting eh?

Four days left…

I’ve had a lovely morning so far… I’ve done my morning rituals best I can whilst being away from home. Coffee enema, nebuliser, taken all meds and supps and more.

I am feeling pretty good. I am still avoiding green juices however the last few days I had an epiphany. In the place of juice I had been having bicarbonate of soda, lemon and olive oil water. Then one evening in St Tropez I felt overcome with nausea. Not very classy running to the toilets and throwing up!

Then I realised I bought a bottle of apple cider vinegar with me and had barely used it. Knowing the amazing benefits of Apple cider vinegar I have been having that with my meds and supps instead. So far so good. I don’t feel nauseas and I don’t have stomach upset… Maybe that’s what I needed. Apple cider vinegar is very alkalising and calming on the digestion.

I have continued however to have migraines. Now the neurotic part of me thinks, Oh God, could this be something more sinister. Then I think of all the triggers that could be setting them off and the list is extensive, caffeine, red wine, heat, sunshine, eye tiredness, stiff neck, lack of sleep, dairy products and more.. I can tick off all of those as possible factors to my head aches. So telling the neurotic me to back down then once I get home and realign my life then we shall see.

I made another batch of GcMAF yoghurt yesterday. Because of the heat here it’s process is complete much sooner than at home. This morning it looked like set yoghurt and smelt amazing. I am really loving this stuff. It’s in the fridge now and I will test it later with some berries.

Yesterday Pete and I decided to try something I had always wanted to do.. Paddle boarding. I was really nervous.. Lets face it I’m nervous about anything new. I wasn’t given any tips or assistance by the French guy renting out the boards and was pushed on my knees off into the sea.. Argh! It wasn’t great because he said be careful not to fall onto the rocks below! With that fact and the very wavy sea I was a bag of nerves. I whined and moaned as I tried to control the paddle board with my oar. Being panicky I failed to listen to Pete’s instructions and whilst drifting into a moored boat decided I would go back to shore. Poor old Pete was trying to help but I just didn’t get it. I watched a while from the shore then Pete came and got me. I had another go and this time I actually got up onto my feet and… Paddle boarded! Yay! However I wouldn’t say I was entirely happy. I really wanted to be able to jump off and on the board but because of the rocks was petrified…. Not ideal. I need a lake with no waves, tides or current. I need a shallow pool to jump off into….Where will I find that? I’m pleased I tried but now really want to master it.

This morning I had a message from a friend who has asked me to speak on a night her friend is hosting. She will be launching a calendar ‘inspirational women’ and wondered if I would like to say a few words. I will be announced as one of the inspiration speakers.. The calendar has been promoted on the Lorraine Kelly TV programme and Anne Diamond’s radio show. Gulp….. I know I should but I am such a wreck at speaking in front of anyone! I have been assured that it isn’t a big affair and my friend said I have a story to share…..

Thoughts have started to go back to home. I am already thinking about packing and the journey ahead of us. I have to say I am going to miss this place…it has been the longest three weeks of my life! It feels like so much has happened. When mum left on Tuesday it felt so quiet here. She was such a great support. I know I couldn’t have driven that beast of a car without her. She helped me clean, do washing and organise lots. (Yes I did cleaning and washing because I had friends arriving- a girl has to have standards you know!) it’s the first time I have spent two weeks away with her. It was lovely.

I am so pleased we invited many of our friends and family to stay. It would’ve been too big with just us here. It’s been so lovely having such happiness, laughter and joy surrounding us. There have been times when I felt frustrated and a bit lost but then spending all your time with people can be suffocating.. But how quickly that changes when they are gone.

So what now? I am going to really enjoy the next four days with my man. Next week is all planned and I aim to transition smoothly into my rituals back home. I hope to feel back to normal soon. I have a life coaching session booked for me to get focused and find my mojo again and in three weeks I will be a fully qualified health coach. Boy that year has flown by! My main aim is that I want to help other people have a better life…

I am looking forward to the autumn and the rest of the year ahead.

How is it looking for you?

Xx