Learn the art of patience…..

‘Learn the art of patience. Apply discipline to your thoughts when they become anxious over the outcome of a goal. Impatience breeds anxiety, fear, discouragement and failure. Patience creates confidence, decisiveness, and a rational outlook, which eventually leads to success.’

I have been trying so very hard to be patient. But last week I thought I was so very close to getting an appointment for the gamma knife procedure at St Bart’s hospital on the NHS.

As you know from my last blog I was given a date over the phone for this procedure. The next thing I was waiting for was confirmation of the appointment which the secretary had said she would email. The following day by lunchtime I still hadn’t received it so I called. The secretary said she had sent it. This started the whole palava of her realising that she hadn’t received any emails for a few days. Seriously? She hadn’t thought to check why she hadn’t received any emails?!  Then she noticed emails I had sent her had gone into her junk box. Frustrating isn’t the word. To be honest I feel like a nuisance constantly calling and emailing but it makes me realise that I have just cause to!
Then I discover the letter that has been emailed to me is another outpatient’s appointment letter not a confirmation of the gamma knife procedure. I call her back again. She starts rambling saying that she needed to ask someone to call and that it wasn’t as simple as changing the letter. Eh?

In the meantime I had been also emailing a lady at the gamma knife centre. She said I requested the outpatient appointment so that Dr Plowman could look at my MRI images and be discussed at their MDT. I said that they had already done that. She replied and said as far as she knew my last appointment was a complete waste of time. I argued my point and asked why I was then given an appointment by his secretary? The gamma knife lady said his secretary couldn’t have done that as she doesn’t have the ability or authority to do that! Oh my goodness… how hard is it?

I then emailed both parties and was quite frank with them both. I got a call from Dr Plowman’s secretary telling me a consultant was going to call me. That never happened.
Then I got a really nice email from the gamma knife lady who said she was awaiting for Dr Plowman to reply and that all matters were in her hands with a clear and robust plan of action. That was Friday.

I emailed today and she replied to say that she has now passed it onto the gamma knife CNS. (By the way I don’t know what all the abbreviations are- I don’t know why they think it’s appropriate to confuse patients further?!) I have replied and asked why and what’s going on… but had no reply.

It’s actually quite boring. And I don’t want to get upset and impatient but I do believe that I could have organised this with my eyes shut.

There are so many issues here that I cannot even be bothered to detail them now.
I am hopeful still but I also have that sinking feeling. What bothered me the most is when I asked Dr Plowman’s secretary, ‘How do you not know the process of booking in gamma knife patients?’ She answered by saying that Dr Plowman doesn’t do many on the NHS. He does more privately. Great….That is disgusting.
So I am trying to be patient. But I got fed up and decided to email my lovely ladies at the Churchill. I told them the synopsis of this farce and also how great they are as well as the consultants. I may have had a few issues in the beginning but they have always replied promptly, appointments booked and everything has been clear and simple.
As expected my lovely lady at the Churchill replied almost immediately and says she is going to try and find out what is going on.

I guess one of the problems with gamma knife at St Barts is this… The lady at the gamma knife centre doesn’t work for the consultant Dr Plowman and isn’t employed by the NHS. So her systems and procedures are separate from the NHS. So Dr Plowman’s secretary really cannot do much for me.

I say keep it simple! There would be fewer issues and maybe when I go for an appointment my images may be there if it’s being dealt by one person?!

So I’m still waiting…..I’m practicing using my energy by focusing on good things and being ever hopeful… but let’s face it. If I haven’t heard anything by end of day tomorrow I will be finding Dr Plowman’s email and phone number and contacting directly!

Results.. the quick version or the long?

 Today was the day that was looming. Despite being calm and brave I did feel sick to my stomach again getting ready for the hospital. I simply can’t help it. Pete was the same although he probably wouldn’t admit it.
Prof Harris was on form as usual and asked about my henna head and seemed really tickled by it.
He immediately said its good news…. It’s so good that he knows us now.
The suspense kills us!

He said it was a bit complicated to explain but he sort of stammered his way through it. Nothing is ever black and white is it?

What I would love to hear is you have no cancer Mrs Grant.. You are in remission!
But sadly life isn’t quite as cut and dry as that and I am not one of those miracle remissions that you read online… Don’t know why.. That’s triple negative for you.
BUT! There is loads of amazing news.

The lesion in the lower right lobe has reduced from 33 x 27mm to 27 x 15mm.
The lesion in the right upper lung now measures 38 x27mm which was previously 40x39mm.
The small bilateral nodules have also reduced in size.
The left lung looks stable except the lower nodule apparently has increased by 1mm.. Hmm really?
There were areas of lymphangitis carcinomatosa!? And pleural thickening… These have all now been resolved.
The pericardial effusion/ fluid around my heart, has all now gone too! Woo!
The lymph nodes, a huge area of concern for me, has all now halved in size!

Earlier this year they picked up on an ovarian mass and told me it wasn’t cancerous from the way it looks. They now are unsure if it is cancerous or not, however, this has reduced in size too so they do not feel it is necessary to do anything about at this stage.

They did find the following though;
A broken rib on the right side of my body! Pete was right! I knew I was in agony when I coughed and sneezed a few weeks ago. I felt such a drama queen rolling around the floor in pain and not being able to cough properly. Well now I know I had due cause for it! A bloody broken rib! That explains why sitting and lying down having scans at Prof Vogl’s and Dr Seibenhuners was such a challenge…
The other thing they have detected is a bit confusing;

A new 21mm mixed sclerotic and lytic lesion in the left side of the body of t8 and a similar lesion on t9… So canSer had spread to my bones… Bugger…HOWEVER, Prof says that it actually means that the CanSer started to grow but now it looks like it is repairing and that the bones are hardening.. So it is getting better.
This obviously disturbs me but does make me think back to October time. I was lying in bed many a time and had a feeling of there being a hole in my back. I remember saying that I feel like my energy was pouring out of this hole. The discomfort and pain kept me awake quite a few nights and now I know it was that. I don’t have the pain or discomfort any more… Bizarre but brilliant!

So Prof says carry on as I am and the only new introduction is that he wants me to start a new drug for the bones. It is not to stop canSer but assist the bones is staying strong. It is called denosumab. I am to have it injected and it will be organised by hospital at home. I am happy to inject myself. I will also need to have calcium and vitamin d. Well I have vitamin d already. However I had reduced it since I was tested and told it was seriously high.
The MRI scan results were equally as good. All tumours have reduced by 50% and should continue to reduce in size. I am to continue on the low dose of steroids for now.

As well as this news Prof gave me a chart of my blood results over the last few months.
It shows that my platelet count has increased above a normal level. He says it could be due to the chemo treatment I am having. It increased from about August so this doesn’t correlate with that but maybe with other treatments.
It showed my haemoglobin levels have dropped at the same time. He says there is now a risk of thrombosis and I should be careful when flying.

The other thing he pointed out was the CA -15-3 in my blood. This is actually the amount of cancer cells actively circulating. A normal person’s level is about 30 iu/ml.
At the beginning of July time mine was really high at 60iu/ml. It has gradually decreased to 45iu/ml…. This is so exciting! It’s reducing.. If I can get it low enough canSer may actually stop growing and leave my body!

Pete and I are over the moon, but we have such a long way to go and it does drive me on to really blast it at my next visit in Germany, then hopefully the trial with the pdl1 in London will be the thing that blasts it.
We have been receiving so much info through email and Google alerts about immunotherapy and timings. It seems things work better when administered every two weeks.
We are still gathering information but once we do we will post on here all the details.

I can’t say initially I was jumping with joy because it’s a lot to take in and nothing is ever simple, then Pete came home work and we decided that a celebration was due and cracked open a bottle of champagne. It felt fitting that we should enjoy ourselves and give ourselves a boost for the next chapter, 50% left to go…..

Today we leave for our road trip to Germany… It’s going to be a long few days but worth it. Plus I get to chat to my Bear for hours if I can stay awake! Haha….

Xx

9

Progress for radiotherapy…

I have had some progress. Yesterday I was booked to see Prof Harris for my usual clinic appointment. On Monday, eager as ever I emailed all the doctors secretaries and asked about when I would be seen for radiotherapy. I was told to call the radiotherapy department. You don’t have to ask me twice. I got straight through to the lovely lady who said she had found my paper work and asked how long I had been waiting. I told her a month, true and a little bit untrue. She called me and asked if I could go in the very next day, so yesterday. Yes! It worked out perfectly combining it with Prof Harris; Two birds, one stone.

I told reception on my arrival that I was going to radiotherapy after seeing the Prof. They saw me almost immediately.

Prof was lovely. As usual. He actually said he thought going to Prof Vogl was a great idea. This surprised me a bit as I got the feeling he didn’t approve. We advised him that Prof Vogl had advised me to take capecitabine again on a very lose. He said that I should taking it immediately especially as I am going to be on radiotherapy because it can affect the results. Really? He also said it is pointless taking it when I had responded on it then it stopped working. Blimey…That was lucky then. I have stopped taking it.

He asked about me cough and I told him that I was full of snot (too much information?) and stuff. He said it was difficult to tell if they lymph nodes were improving. I also told him that my side was in agony and he remembered how it was six months ago.

We went straight from there to radiotherapy. The male nurse was nice albeit a little bit of a jobs worth and when he told us the dates for having ten days worth of treatment our hearts sank.The dates overlapped the dates for Germany to see Prof Vogl and Dr Nesselhut. Bugger…

We told the nurse and he insisted on calling Dr Oliveros. We tried to explain that it wouldn’t matter we would move the Germany dates but he said he felt he should tell her anyway! How irritating..The nurse then started saying it might mean we can’t proceed with doing the mask making and ct scan if we have to put it off! Argh!!! Seriously how annoying was this man?

We waited and decided whatever the outcome we wouldn’t be going home without the mask being made.
The nurse walked in and said that Dr Oliveros had decided giving me twice the dose over a period of five days would be just as good. What? Wow! This was even better than I expected. I didn’t want to go hospital for ten days anyway being trapped under the mask.. This was a right bonus!

Whoop! So, on we got with making the mask. This is where the male nurse actually ended up being lovely. He didn’t mean to stress us out and actually was such a kind a gentle man (Pete thinks a bit creepy! Haha). He explained what he was going to do and how the mask would feel; hot then cold and I would be in it for about 8 minutes. I was very concerned with feeling like I wanted to move and also wanting to cough. He put on calming spa like music and then stroked the contours of my face and spoke really calmly. Now as a beauty therapist this was brilliant. It was highly relaxing and I really appreciated his concern and care. What a lovely guy. He kept reassuring me and saying I was doing really well.

And that was it! The mask was made. I then had to go and have a ct scan with the mask on. This time the mask was a bit tighter and I was worried again that I would feel the urge to cough. But I held it together. Thankfully.

doctor
Overall it was a really good day. I have dates starting from tomorrow for radiotherapy and then I can go to Germany for treatment.

I have been advised about the side effects of radiotherapy; such as hair loss and dry skin, headaches and tiredness. Prof Harris said I would stay on steroids for a short while then the radiotherapy should work over a six week period. I will be scanned in December.

I am not sure how quickly hair falls out with radiotherapy but I guess I will find out soon enough! If at all…
So tomorrow it starts… I feel quite high spirited. I am feeling pretty well.

Let’s keep that going…

X

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….

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!

It’s all about the money…

I have been having such a lovely week. Slowly clawing my life back together again, I think.
I have exercised these past few days and boy do I feel it. I mean, I am doing light exercise; 20 minutes of yoga and then some boxercise. I am aching all over! I didn’t realise how unfit I had become! But it’s good. I need to get stronger and fighting fit.

I still look pretty scary. When at home I don’t wear make up and with my very pale head which is lovely and shiny since Pete shaved it for me, I have huge bags under my eyes… Thankfully I am still decreasing in the puffiness. I am now only taking half a steroid daily which amounts to 1mg.

I had an email yesterday from Prof Harris’s secretary telling me he will book CT scans for me prior me seeing him in December. Actually I had a really nice surprise. I am quite demanding and do really keep on chasing things when I want something. The secretaries do get bombarded with all my emails and requests. Yesterday this particular secretary said that she thought I was really sassy and inspirational… How nice?! I replied and said, ‘Not really. I am simply trying to stay alive and have the best life possible.’  It bought a smile to my face though.

The trial secretary at St Barts has emailed me to say that she has had contact with Oxford and hopefully my tumour sample is being sent down today. It then need to go to US to be tested. Boy, these things take forever….All this to find out if I am eligible.

I’ve been having a little dance today around the kitchen. Pete is an avid listener of music and at the office he plays all genres depending on his mood. He has started sending me playlists to play every day whilst at home. I love it! I have been having a good old shimmy. It’s funny as I was feeling a little rough then the music came on and my booty shook and the sickly feeling went away.Tongue outI’d highly recommend it!

When we got back from Germany last week, I was met with a letter on my doormat from a debt collection agency. They had been instructed by St George’s Hospital in London?! Apparently an invoice had been sent to me on the 24th June for the ablation that I had and I hadn’t paid. I have until the end of the week to pay. I immediately felt stressed. I know what these debt collectors are like. Dogs with bones!

There are two things that are wrong with this situation. Firstly I have never received an invoice from St George’s and secondly, I paid the invoice over a week before the ablation which was on the 19th June. I felt aggrieved that they hadn’t called me asking for payment and they had simply passed my details over to a debt agency. I now have a black mark on my credit rating. Not only that we all know that stress is major factor when it comes to canSer.  Pete said not to worry but I do. It did play on my mind for one night and then I got on the phone the very next morning.
The debt agency couldn’t even be bothered to answer the phone so I called the hospital. They looked at the records and it sounded like pennies dropping. Yes, they could see I had already paid and then they looked for the invoice that I had apparently had sent to me. Ah, they couldn’t see it actually going out. They hadn’t allocated my payment. I did express my concern to the fact that they hadn’t even called me before instructing the debt agency. All the lady could say was don’t worry I will get it sorted and make sure the debt agency are contacted and this is resolved. She promised to call me back. Well she didn’t. I called back the next day and she said she had been busy…. Really… I very much doubt she will get it dealt with and I certain I will be hearing from the debt agency again. I actually look forward to them taking me to court.

With canSer it’s all about the money…. It’s a disgrace.

Whilst in Germany I bought some new supplements from Dr Nesselhut. Boswellia serrata- otherwise known as African Frankincense. Its main benefit is reducing swelling in oedema in the brain and it also has anti carcinogenic properties.

Today, I have been making more of my charity wish bracelets in preparation for the charity ball on Friday evening….It’s getting ever closer and I am really excited to be getting dressed up and having a party with all my almost all my friends! I cannot wait! I am unsure what to do with my head at this stage. Wigs are so annoying and I fidget… Going to have my nails done tomorrow…..Eek!

Four days of intense treatment……

The last few days have been intense to say the least. We always knew it was going to be the hardest yet and it has been in many ways. We left home at 4am on Monday morning for our flight to Frankfurt. It’s mental how any people are up and on the roads at that time of day!

I had sort of planned everything as best I could but still didn’t really know what was going to happen. We got our hire car and headed to the hotel. Thankfully our room was ready… Cool everything was going better than expected.
I had an appointment booked at 1.30pm with Dr Seibenhuner which can I say translates to Dr Seven Chickens!

Pahahah! Love it… You gotta laugh when you can.

We were pleasantly surprised when we arrived at his clinic that it actually resembles a clinic; very clean, professional and well normal.

We met with the doctor, who was a really nice guy.

I showed my RGCC blood test results so that he could see what things should work against the canSer I have. We spoke about IPT, insulin potentiated therapy which is promoted as a “kinder, gentler” approach to chemotherapy, with “little to none of the negative side effects of chemotherapy.” It purports to use about a tenth of the usual dose of cancer treatment medicine. The effect of the chemotherapy is claimed to be magnified or potentiated by the use of insulin, which lowers the blood sugar. People who offer this treatment claim that insulin “opens up” the receptors on cancer cells so that more chemotherapy can get in.  The patient reports to an IPT clinic after having had nothing to eat or drink other than water for 6 to 8 hours. Intravenous (IV) fluids are started, and the patient is given a dose of insulin based on his or her body weight. For people with cancer, low doses of chemotherapy drugs are given a few minutes later so that they reach the bloodstream after the insulin has started to lower the patient’s blood sugar. This is called the “therapeutic moment” by some IPT providers.

At this point, the patient usually has some symptoms of low blood sugar (hypoglycemia). These can be quite severe, especially the first time, because people can respond to a standard dose of insulin quite differently. The IV is switched to a high-sugar solution to raise the blood sugar. After the symptoms of low blood sugar begin to improve, the patient may be given food to raise the blood sugar further. During this process, the blood sugar may be checked by finger stick.

We then discussed possible drugs/ infusions to use with the IPT. Based on my RGCC blood results we discussed B17, which is present in apricot kernels and illegal to use in the UK, artemisinin, which I take orally daily, DMSO, which has been recommended to me recently to enhance everything I take in the system, plus a few other things such as potassium and magnesium. As well as this I was to have local hyperthermia on my brain and my chest. I can’t think if there was anything else. My eyes were wide and I was in a bit of a state anyway. Dr Seibenhuner said let’s get started… There and then. Wow…. This was amazing…

Of course cost was running through my mind. Pete dealt with that side of things and was surprised as to how much it was. It was no way near as much as what we were used to paying… So that was a bonus.
Straight away they jacked me up to infusions, insulin injections and the hyperthermia machine. I was scared that my blood sugars would go so low I would go into shock. I was apprehensive about how all the infusions would make me feel. They assured me I should feel fine. They took blood samples and said they were to be sent away for testing to see if my cells did something?! To be honest I have no idea I just know I have results to come back. Hope they are good.

Two hours went and I laid there and got hotter and hotter. I didn’t feel any more shaky than I already was. My blood pressure was monitored regularly. I don’t suffer high or low blood pressure but that day my blood pressure was ski high. They also tested my blood sugar a million times. My finger tips are totally punctured. The interesting part was it started at 115 and they hoped it would drop to half that. But during the whole two hours it would only go as low as 89. I was worried that wasn’t low enough and that it hadn’t worked. I was assured that the reduction was fine. We asked why my blood sugars were so high. They think it could be stress… No really?!!! My body was vibrating from everything… The other thing is I stank. They hadn’t told me that one of the infusions stinks… Honestly I stank of rotting flowers and cabbages for days. I couldn’t smell it. Pete said that every time he walked in to the room all he could smell was me.. Brilliant. I am a smelly nelly. Boo!
So that was a success..

Day two- Professor Vogl and TACE

Having had this once I was nervous again. We arrived and I was taken straight into have an MRI. Pete went on his way for the afternoon. He had work to do but sadly money is the main objective to all these clinics. Despite having paid in advance and online the administrators hadn’t bothered to check and demanded Pete prove he had paid. Poor Pete spent hours getting his bank manager to show proof and make phone calls and more.. Unbelievable. Are CanSer patients that unreliable?

All the while I am oblivious to this administrational nightmare.

Prof Vogl sauntered into the operation theatre where I was laid like a piece of meat waiting for him. I was hooked up to the ct scanner and my other images showed up too. Prof said that there was good news. The tumours in my right lung have reduced by about 20 per cent. Wow… Really? He said the lymph nodes not so much.

He got started with the procedure and the worst part really is the anaesthetic injection and the little knick into my groin artery. There is one particular male nurse who preps me and is present the whole time and he always gives me a rub on the shoulder to soothe my pain. I watched on the screen as the tube goes through my heart in my lung area. The feeling in my heart is so bizarre. He did say my heart had reduced since last time too, so that means the fluid has reduced. I told him my cough has gone and told him about my other treatments that I had, but to be honest he doesn’t seem to care.

That’s the only thing. Every clinic and doctor gives such different standards of service. Once the procedure finished I had to lie there for three hours to recover. I don’t know what they give, although I hope I will sleep and I never do, but when I finally got up my pupils were massively dilated. Brilliant, more drugs to make feel detached.

I sat then for about an hour to have another ct scan to make sure I wasn’t bleeding to death and then I went to see the Prof. He showed me images from my first visit and that day and I could see the reduction in my right lung. I couldn’t see the lymph nodes. He said the ones in my left lung are so small not to worry about them.

Pete and I were concerned as to how this treatment would be going. How many times do we need to go and how is it going to get rid of completely? In my addled state I was unsure what the benefit of that treatment was over chemo. Obviously, normal chemo kills all cells. TACE targets the specific areas and the side effects are minimal. I have to be honest I saw the chemo shoot through my lungs on the ct screen and then I am walking around feeling fine. I can handle that over systemic chemo.

Prof said in his limited fashion that we should continue making the right lung and lymph smaller and then he thinks we should ablate them with RFA or Laser treatment that he offers. Ok right. I think if I have any questions I will have to email. It’s like getting blood out of a stone.

We hot footed it out there with mixed feelings. I should be over the moon that there has been such success in only one month! But in my drugged up body and the concern for just getting to the next destination all happiness is taken away. You can’t really feel happy when you are being given news by a cold blooded heart less doctor. There is no emotion in some Germans!

By now it’s late afternoon on Tuesday. We jumped in our trusty hire steed and made a three hour journey to what I call my German home, Duderstadt.

There has been no daylight since we got here. That has made it worse. I feel like I am walking around in the dark and it’s not very uplifting or inspiring. My body feels different every day. I’m reducing the steroids but my face is bloated now and I have puffy eyes. My scalp and forehead are itchy and my hair has started falling out from the radiotherapy, God darn it! I really hoped it wouldn’t but I am gutted. I know it’s not the end of the world but with a fat face I don’t look good. I have aged with worry and have more wrinkles than before. I rocked the bald look years ago when I looked healthy. I do not look healthy. My mind is a mess as is my body. I’m a wreck!

We arrived at our usual hotel, the Zum Lowen and were welcomed to the first room we ever stayed in. Bliss! The beds are out of this world.. The bed covers, I have to have, are silky smooth and despite knowing I might not sleep very well, because I haven’t lately, I didn’t care. I knew lying in this heavenly bed would be just what Pete and I needed. I wasn’t disappointed..

Day three- I got up yesterday with plenty of time before my first appointment at Dr Nesselhuts. I was having hyperthermia and more infusions. I decided to catch up on meditation and emails. Pete had lots of work to do so I made sure I kept quiet. I had a great morning. Off I went for my treatments. Putting needles in my veins is really getting to me now. I have great veins but my good one is starting to look a mess.

I came back to the hotel and chilled even more. I felt all blurry.. My puffiness is getting right on my nerves. Pete and I try to be as normal as possible but really I just feel shaky the whole time. I’m worried it’s my blood sugars or is the drugs or is it all of it?

Another great night in the heavenly bed. But I still wake up thinking half way through the night. I can’t switch off my head but I’m not sure what I am really thinking about. I woke with aching ribs and a mild headache. The first headache in a while. I put the rib aches down to TACE. I remember feeling a bit achey last time from that chemo. The headache I hoped would be nothing. I haven’t taken any pain relief and I feel just fine at present.

Day four- I’m up packed and ready to check out. I have another session of infusions and hyperthermia then to see Dr Nesslehut. I’ve booked the earliest appointment possible as we have to get back to Frankfurt for our flight. Bloody pressure! I know I could make it easier by staying an extra day but we have to get back. Pete has important work and that’s how we make the money to pay for these crazy adventures.

I feel ok. I’m shaky again and a little less puffy- yay! But I still feel like I am living in a parallel world. When I lay in the ward after TACE it was like being in a movie where a captive is taken and is being tested upon. Foreign language banding about and being prodded, poked and given, well it could be anything?! It does take the feeling of control away somewhat.

Pete just goes with the flow.

I saw Dr Nesselhut and we discussed future treatment options. He discussed ipilimumab, a drug that one of my friends had recommended. I didn’t even need to bring it up as Dr Nesselhut did.

Ipilimumab belongs to a group of cancer drugs known as monoclonal antibodies. Monoclonal antibodies are sometimes called targeted therapies because they work by ‘targeting’ specific proteins (receptors) on the surface of cells. Ipilimumab is a bit different because it works by attaching itself to normal immune cells. This changes the way these cells work and helps the immune system destroy cancer cells. Apparently it can be deathly and is very expensive, but if I go for it combined with CD80 then it could really do the trick.

I can’t remember the facts on CD80 but it is something to do with T regs. Honestly you need a degree in science. Ok so there is a plan for the future. We skipped out of there and drove like the wind back to Frankfurt dodging awful car accident after another. I don’t know how we did it but we got to the airport with hours to spare til our flight. Being cheeky we asked the check in desk if we could get on a earlier flight… Yes!

Boom we got back to Heathrow and then home a few hours earlier than expected and it made all the difference. We were in bed by ten and had unpacked and prepared for work today.

It’s amazing to be back even if I am walking around with niggles, aches, pains and a hazy head. Once I have done some admin I will meditate and really take some time this afternoon to just BE…

Pete squeezed me as hard as he could throughout the noisy rainy night and we woke up thinking our bed is just as good as the heavenly bed at the Zum Lowen. There’s no place like home. X

Radiotherapy done and dusted and trial in progress…..

Treatment number four went fine although I had over an hour delay. We didn’t get home until 7pm… oh well that’s it goes…Still no headaches and only a slight tingling sensation.. Is this normal? How can I be getting away with no headaches?

Yesterday I got up at stupid o clock and got on a very early train London bound to visit St Barts hospital again.
This time it was to sign a consent form for a trial. I was a bit anxious because I had to be back in the afternoon for my very last radiotherapy session. The thing with public transport is that you never know what may happen. I read online the day before that my friend took  five hours to get to London!!

That was why I was being extra cautious and getting to London ultra early before my ten o clock appointment. Everything went swimmingly. There were plenty of seats, the underground wasn’t heaving and I found my way by foot just fine. I had plenty of time so hopped into a lovely cafe and had sausage and egg with a green tea for brekkie. All the while I was texting and emailing the consultant who had arranged the appointment to say I could be seen earlier. Well if you don’t ask…

I didn’t get a reply so I went to the clinic reception half hour earlier and low and behold they had no record of me. Why was I not surprised? All the women on the desk looked at me all confused so I got up the emails on my phone. I then proceeded to email frantically and did get a response. In a short while one of the trial organisers came and introduced herself and said it wouldn’t be long. What a relief.

I then met Dr Peter Schmid who is heading up this trial. We discussed the fact that I wanted Peter there and that my brain is a bit mush like so I may not be on top form. Dr Schmid said it was fine but essentially he got my medical background off me. I really must write out my timeline! It would save so much time and recollection. The trial requires testing my tumour sample that was removed way back when to determine if it expresses the protein relevant, therefore making me eligible or not. Apparently only 1 in 3 are eligible. Bugger. Sometimes even if the tumour results come back negative they take them on anyway because there is evidence that the trial, PDL1, stimulates the immune system and can therefore still have an effect on the cancer. I am  not sure what they will decide with me.  So that’s what I went all the way there at a cost of over £70 for. Worth it I guess. (Travelling peak time is a nightmare!)

I signed a document giving consent for them to contact the Churchill hospital and obtain a sample of my old tumour so that then they can send it to the US and have it tested. The reason for the urgency is that these things can take a few weeks. It clearly will… Then if that comes back positive and we are all systems go, Dr Schmid would like me to start the trial before the end of the year. I like this. I like moving forward and getting on with things. To be honest I really must.

I mentioned to Dr Schmid about having TACE and he said that it wouldn’t work for the lungs. Really? He expressed the positivity for TACE for the liver but not lungs. Oh well we will see wont we?

I mentioned the symptoms that I had been having and that my headaches are not really there only a tiny bit of tingling. He said that ideally I would need to have stable tumours and no headaches to proceed with the trial. Well let’s hope by then my brain is all sorted. I should be having an MRI by then and will know if the radiotherapy has worked.

Also I should be off the steroids by then completely. I contacted Dr Oliveros and she advised that as of now I can reduce the steroids down from 8mg to 4mg per morning for five days then 4mg to 2mg for the next five days then down to 1mg by breaking the tablet up until I see Prof Harris on the 9th December. Brilliant. I am quite excited about this. I can’t decide if the ups and downs, the high energy moments followed by the sketchy shakiness is the tablets or just me? Is it a side effect or is it me ever since the brain tumours?

Anyway back to Dr Schmid. He seemed really nice and very caring. He is concerned for me and said that he feels I should get on either carboplatin and gemcetibine or eribulin as asap if I am not going to eligible for his PDL1 trial. Of course that is my next option. After TACE.

Whilst I was there I got a few messages from two ladies. One lady is currently on the trial and gave me their details. It was lovely to chat with her and I sent her regards to the doctors. Then I also got a message from another wonderful lady who had got her friend with TNBC onto the trial and should have started last month. She sadly passed away before she could start the trial. She said how  lovely Peter Schmid and Louise Lim, the consultant were. I passed on her regards to them both. They seemed touched.

I signed the document and skipped out, back to London Paddington. I was back home by 1.30pm. By now I was absolutely pooped and almost fell asleep on the train. I mooched for a few hours then my lovely sister in law drove over an hour to collect me to take me to the Churchill hospital as Pete had some very important jobs on and couldn’t take me.

We left ultra early and spent a good hour chatting in the cafe at the hospital. I went into radiotherapy early and was seen early! Yay! My last treatment went quickly, although I am sure the radio beam was longer than before. There is such a weird smell and the metal taste from my fillings is weird. But other than that harmless.. well you know what I mean!

We left and drove straight into the rush hour traffic and also the road works around Oxford. This meant my sister in law and I chewed the fat for over an hour! Honestly we must have steamed up the car! Haha! It didn’t feel like and hour and we certainly didn’t get stressed. I was so grateful for her taking me.

I bought the mask that they used on me home. I kind of thought that if I needed more radiotherapy that it would be helpful to keep it, but they said they would make a whole new one in case my face had changed from weight etc… Oh ok.

So that’s the end of that chapter. I am geared up for four days in Germany next week for some hyperthermia and infusions and to see Prof Vogl of course.

I was absolutely wrecked last night and slept like a log after having such an awesome dinner made by my Master chef Bear; seabass, celeriac mash and green vegetables. We are trying to take on board the ketogenic diet but during the day was a bit hard as I had some carbs like bread. I am trying. Honest!

In fact I am trying so hard that I made some flaxseed crackers and flax and coconut bread from the recipe book by Patricia Daly. The crackers are ok. They are not thin and crispy. I must try them again. But the flax and coconut bread is moist. It’s bit thin and not very flavourful but with a topping or dip will be brilliant. Pete gave it the thumbs up! This is great news. This means we can have bread of sorts in the house! And it’s not carbohydrate at all!
Today I feel good again. I feel bright as a button when I wake up and I get on with so much. I have a few bits to do around the house today but I feel like a Duracell bunny. By the afternoon I tend to flag a bit. I definitely feel more alert and can manage and organise things to be done. Then it goes a bit awry.

I realised when I got up the other day that the flights I had booked needed to be checked for going to Germany. Bugger! I had booked them all wrong.. I got on the phone to BA and they were amazing. In fact they saved me money…Phew what a relief. But it just goes to show that my Bear needs to keep a check on me in this brain addled state.

Now I am just intrigued to know what will happen next with my head. I am being careful with washing and creams. I feel a bit itchy I think and I am wondering if my skin and scalp have been affected. I also wonder if in a few weeks if my hair will fall out. (just in time for the ball! Haha)

I no longer have a cough or cold! Yay! I mentioned this to Dr Schmid whilst I was there and he said it is likely the coughing has stopped because of the steroids reducing the swelling. Hmmmmm. I am not convinced. I was told by Prof Vogl that it would take two weeks from the TACE and the cough would stop. I am going with that theory. Let’s hope so. But what I do know it is a relief not to be hawking up all the time. I still have an incredibly sore rib but as I am not coughing so much anymore I can handle it..

All in all things are going in the right direction I believe….

For more information on the trial look up clinical trials : http://clinicaltrials.gov/show/NCT01375842

Light and Love.

Mention cold and cough

Treatment number three done….

I’m already back from radiotherapy number three.

Yes, times flies. I started last Thursday. Pete has been taking me to the appointments and to be expected I was really nervous for my first one. Things didn’t go quite to plan when we got the hospital either. As we pulled into a parking space, driving our 4 x 4 vehicle mounting a curb we heard a loud hissing noise. Nooooooo. A flat tyre. Pete said he would get it sorted whilst i went and checked in. Sadly for him it wasn’t quite that simple what with all these new fandangle cars. He couldn’t simply 0put on the spare he had to reset the on board computer and so on… I felt so bad for hm. He really wanted to come in with me to calm me down and there he was having to call out the RAC to get them to sort us out. It didn’t matter to me. I was called in and on when the mask. The bit I was dreading was the fear of wanting to cough and being under the mask for so long. It took about 10-15 minutes and I could feel my heart rate increasing. It was hard to know when the radiotherapy was actually happening too. But it was painless and I got through it. Simple.

The next day I was even more nervous. Mainly through the anticipation of it all. I have been desperately trying to get rid of the cough and cold. To top it off my ribs that had been hurting from over coughing and that morning doing a normal cough I heard a great big pop in my ribs. I was in agony. Oh bugger not more pain.

There was an hour delay on this particular day and I was getting myself in a tiz waz. I don’t know why. It’s silly really. And it was silly because this time they admitted they have problems with the machine the day before and it shouldn’t have taken as long. It only took about 5 minutes today. Wow, I can handle that.

So Pete and I left 2 hours earlier this morning to ensure we arrived on time. Morning traffic is a nightmare and it took us about an hour to get there. Not bad really. They actually saw me early and I was in and out in flash. Hence why I am now back home typing this.

The weekend was a mixed bag. I have been advised I should feel worse before I feel better. So far I have continued taking the same amount of steroids. I haven’t had any problems with headaches. Weird. Saturday however was an odd day.

I took my morning tablets a combination of medication and supplements. We went to the supermarket then I had a huge urge to vomit. It wouldn’t pass and I had to be sick in Tesco’s’ car park. Classy. I must have looked like I had a hangover from the night before. If only.

We came home and Pete was cooking us a lovely brunch and I was really hungry, yet had to be sick again. I always think it’s something I have ingested and immediately think the drugs/supplements, but then Pete suggested it is the radiotherapy side effects. I had quite a lot of sickness episodes when we were on holiday in France, before I knew I had the brain tumours.

I ate, felt great but then my condition declined as the day wore on. I felt shaky, drained, I had gone a funny colour and decided that I should feel sorry for myself on the sofa. I couldn’t sleep but felt rotten.

Yesterday was a different story. I slept really well. We got up and had breakfast and did the usual morning stuff. I didn’t feel sick at all. We went out and I had a lovely morning seeing my step son and doing a spot of shopping. Such a difference a day makes. One thing I do constantly feel is sketchy and frantic and it makes me shake. It does improve as the day wears on but I think that has to be the drugs.

Last Friday I had a call from a consultant at St Barts. I have been referred for a trial there regarding PDL1. A friend of mine had mentioned it and I decided to push to see if I am eligible. I didn’t expect them to be quite so fast moving at this stage. I told the consultant that Pete and I could visit to talk about it later in November when we had some free time and after Germany. She called and said that they needed to test my tumour sample, which the Churchill hospital still has from four years from my original surgery. But in order to do that I need to sign a consent form. I did try to blag it and say that I could do it by email. No way, Jose. That didn’t cut it. So she has asked to me go to down to Professor Schmids clinic on Wednesday morning. I had explained that i have radiotherapy in oxford and its very time restrictive getting here, there and everywhere. But she insisted and said I wouldn’t have to discuss anything, I could go back with Pete another time but let’s get the ball rolling with the tumour sample to see if I am actually eligible for the trial as these things take a few weeks. I totally agree with her but the logistics of everything seem crazy! So I’m booked for Wednesday at 10am in London. I have to get back to oxford for my late afternoon appointment for my very last radiotherapy session. I’m sure I will do it. Well I just have to. I have to find out if this trial is any good. It could actually mean not having to go to Nesselhut in the future. I will provide more on this trial when I have it.

As per usual it’s all go. Life is never easy. So what am I going to do with the rest of my day and time?
I have a lot to organise still. My friends are hosting the charity ball at the end of this month for my chosen charities; Breakthrough Breast Cancer and The Cancer Vaccine Institute and even though are doing most of the work we still have spaces left and things need to be completed for the auction.

If you like to attend, the ball is being held on Friday 21st November at Caswell House, Oxfordshire. The theme is Venetian Masquerade Ball. The costs of the tickets are £100 per person and so much of it is going straight to the charities. The suppliers have been amazingly generous. It will be night of glitz and glamour. If you are interested in finding out more and booking tickets please contact me on; glowtherapy@live.co.uk

charity

Other than that I still have to focus on getting well and that includes doing my normal inhalations and nebuliser and more. I haven’t quite got back into exercise and know the importance of that. I just have to find the motivation. I also need to get back into meditation. Today Deepak Chopra starts another 21 day challenge on the Energy of Attraction. If you would like to join here is the link : https://www.facebook.com/ChopraMeditation

Life stills very manic to me and I am not quite the girl I was. I have lots to look forward to though socially and treatment wise and just have to get used to living a bit out of my comfort zone for a while.I do feel positive yet I am a little confused if I am doing the right thing. I can’t decide if the drugs and supplements are right for me. Until I stop taking steroids I don’t think I can answer those questions.

I have adopted the ketogenic diet now. I feel at ease with it. It went against the grain because of all the meat included but I do feel I need to make sure I don’t lose weight. I worked out my BMR and the number of carbs, protein and fats I am to consume. It’s a bit of a science but I have to try. If you would like any information Patricia Daly is brilliant and there is also an ebook I work from with 2 weeks worth of meal plans available.
http://patriciadaly.com/blog/ketogenic-diet-for-cancer-ketogenic-diet/

I have been thinking, ‘What was I doing differently when the tumours almost disappeared last year?

I know I was on dc therapy monthly and I had been using Capecitabine, but what other things I was taking that are different to now. How did it work then but then stopped?  It has to be something I did. I can make it go away again.
Luckily for me the cough is now going. That means the cold is going too. I haven’t coughed through the night for a few nights. This means the lymph nodes must be improving. Prof Vogl said it would take two weeks from my first treatment with him for this to happen. Weirdly it was two weeks to the day that I stopped coughing. I wonder if the cough would have subsided sooner had I not had a cough and cold. This is a really positive sign. It gives me so much hope and now I can’t wait to find out from my next CT scan what is going on in there.

Treatment number four tomorrow afternoon…..

Now what is it I have to do?…..Space cadet. X