I asked the Universe for a gift…

The last few days have been glorious and as I sit here now I keep looking into the garden thinking just ten more minutes till there is no more sun left…

I have been trying to take things steady since Sunday and have laid off exercising properly. I have done some stretches and a little plank here or there with some squats thrown in for good measure.

I have been busily getting my house in order and preparing for trip… But this time it is a trip for fun not treatment. I’m a little bit excited. The Easter weekend is here and I am spending it with my man. My favourite person…

But even though things have been ticking along steadily there have been things nagging at me.

The pain in my side, I thought was healing. It is only by the time I go to bed that it really plays up. But yesterday I was in agony from about 6pm. It’s so debilitating and if this is a muscular injury, boy, I don’t want it again thank you very much! I don’t take pain relief usually as I would rather feel the pain and let it go naturally but last night I took 1000mg of paracetemol, 600mg of ibuprofen and 20mg of codeine. And even then the pain didn’t go fully. I did sleep though but awoke in pain again. Every deep breath and cough makes it hurt.

I noticed today though that the pain is directly under my mastectomy scar and it does feel tender to touch now, like it is muscle pain. But weird that it is right where the scar tissue is. Pete still thinks stress is a major factor. Its funny where we hold tension and he should know as his back goes almost every time we are due to go away.

But I guess that’s how the body manifests ‘stuff’. It’s trying to tell me something and I know what it is… patience! And that the Universe will guide me once it is good and ready…

Well I have been patient but I wasn’t going to wait for the Universe to present things to me so, in my impatience I decided that I would call Prof Dalgliesh. I had emailed loads and it seemed that I wasn’t getting heard. On calling I was met by Prof D’s secretary. She is very short with me on the phone and said, ‘Oh, you have been accepted’. What?! Yes, they have accepted you for the vaccination trial. Oh right, well thanks for informing me.

She proceeded to give me a few details of when it would start but I asked her to let me know as much as possible as I know nothing about it. She said I may be starting on the 1st may. She did try to get it on the 24th but they are too busy.  She said that even though it’s a trial and should be free because it is administered at eth London Clinic they would be charging me for every visit. She wasn’t sure of costs but would find out. She do you know anything about the trial? No! Oh, haven’t you had a patient brochure sent? Well who was going to send it to me? Anyway that has now arrived.

I asked about ablation. She said flatly that she doesn’t deal with that. Well who does? She said they should be contacting me. How? By email, letter, phone? And who would be contacting me? I again explained that I have no idea what’s going on and someone needs to help.

Once I received the patient brochure I emailed her to thank her for her time and explained that my brain was going to pop with anxiety and stress if someone didn’t help me. I got a reply saying she would email the consultant. I then got a further email to say that the consultant is away until the 22nd April… FFS. Well at least I know.

So good news I think! Well at least we are getting there. i still feel uneasy and lots of loose ends but surely this is good right?

Apparently the vaccinations will be every two weeks, then if I tolerate that well every month and so on. I will post the information regarding the vaccine once I have digested the information.

It’s funny because I am reading Pam Grouts book, E Squared and in it the first exercise is to ask the Universe for a gift within 48 hours. This is to prove that the Field of Potentiality, Source, God or whatever, exists.  I asked yesterday at 12.55pm. OK, so I had to chase the gift but I got it didn’t I? So just over 24hours isn’t bad at all eh?

One more thing… I actually have a bit of a sun tan…. I love the sun!

Back from Dr Nesselhut……

I cannot believe it has been four days since I slept in my own bed and what a great night it was last night. We got home from Germany in double quick time. I have never been through Heathrow so quickly. No queue for passport control and our baggage was already going around the carousel when we walked in, then our bus came within two minutes and once in the car we were home within an hour of landing! Uh? I’m not complaining. It just made for a really great end to a lovely couple of days.

It’s always a bit odd being in Duderstadt during the days of treatment. The treatment itself only takes a few hours so there is so much time left to do what we please and let’s just say Duderstadt isn’t rammed with things to do and see. We always make the best of it and on this occasion we stayed in a lovely hotel in the centre of town which has only recently opened. I love hotels. I think if I could I would be a hotel and restaurant critic. I’m all about the little things. Well the hotel this time was trendy, funky and rammed full of extra value added bits and bobs. The best by far is their spa. Yes! A spa. Working within the beauty and relalxation therapies industry it isn’t often that I get to actually do some relaxing. Well as the weather was still very wintery we decided we would indulge ourselves. I spent time in the pool, saunas, steam room, the Himalayan salt oasis and even rubbed myself down with ice then had a whole heap of showers. Ones that were like a tropical storm which flashed with lightening and masses of cold then foggy spray! But going back to the Himalayan salt oasis. It wasn’t that hot, only about 30 degrees and behind the salt bricks  were lights that changed the mood in the room. Also known as ‘salt caves’ they are beneficial for curing chronic airway and nasal diseases. The healing properties that these salt caves provide have been effective enough to cure asthmatic patients and even those who suffer from other lung related diseases like pneumonia. In fact whilst in there not only were we drifting away to the chilled music and subtly hues but I did actually feel clearer. How perfect for me considering the canSer in my lungs! (See the picture attached) We finished our few hours of bliss with fruit and herbal teas. A perfect day and I couldn’t wait to do it again the next day after my treatment. Well I like to get my monies worth, plus it was minus 7 outside. Brrrr.

My vaccination was given to me by Dr Nesselhut senior and he was as lovely as usual. I love his little stories. Well actually they can go on a bit and as we were stretched for time it was one of those times when I wished he would give me the injection! I like to get as much info from him as possible and I am always amazed at his stories. This time he told us that he had treated a boy from Portugal who went into remission and far as they are concerned cured him of canSer. Firstly I’d like to add that immunotherapy in Portugal can be paid for by their health insurance! Wow this is so cool. How forward thinking. Anyway Dr Nesselhut was in London doing a speech as requested by Prof Dalgliesh and there was a Portuguese film crew there. They asked to film him in an interview because it turns out the little boy’s parents are well known Portuguese actors. He has done a whole interview about the treatment he provided and how in that particular case how he treated the boy. Dr Nesselhut really is amazing.

 

I am on day 14 of the Deepak Chopra meditation challenge and today the intention is to take steps each day toward perfect health. Well I think we would all agree that is really all I do! Ok I have days when I am bit naughty (if that’s what you want to call it) when I have cake and coffee. OK Germany is a bit of tease. It seems Sundays are huge on this tradition. One that I think we should adopt here!

I talk about sleep a lot. This is because as anyone would know, when you are under many changes and stress, sleep is the first thing to suffer and it has such a huge impact on how one feels. Staying in the Zum Lowen hotel this weekend had the best duvets, mattresses, and pillows –ok that makes a bed! But you know what I mean. It was nearly as good as the Heavenly bed I stayed in Berlin years ago. Seriously a Heavenly bed. Out of this world.  So in total I have had four great nights sleep of over ten hours a night. I thought as you got older one slept less. Well I must be regressing because I feel like a teenager who could sleep all day! This is not me complaining. I love it. My day goes better, I think better, I feel happier and I am sure my health is better for all the sleep and regeneration I get.

I have to admit my thoughts have been really buoyant for so long. I don’t have a terrible need to know what is going to happen anymore and I feel more relaxed that things may be ok. Well let’s correct that, I have a strong feeling that things will be ok. I don’t want to jinx it but that’s how I feel and it means I enjoy life more.

I have been getting ever more messages of support from friends and people how have found me on here and I am still getting more donations slowing coming in online. I am astounded. I am up to £4900 including gift aid so far! Whoop!

My friends have set a date for the Ladies Night Garden Party featuring raffle, products and services sold on the night. I reckon it will be a blast and they will make loads of money. It all helps go a long way!

I’ve yet again made more bracelets today and have a link going live on my website so that people can buy them online too. Take a look on the home page.

Pete has been getting Google alerts with news and research for triple negative. One day I will spend some time trying to sift through thrm all. It does seem not only with triple negative but other canSers too, that are getting ever closer to actual successes for individuals. I’m going to be success. I simply cannot imagine it being any other way. Not anymore. I feel so different to how I did even four months ago. Pete and I were discussing over the weekend that we feel canSer has actually had such a positive impact on our life. Who would have thought that? And how many other people feel that way? I really truly believe it has been the best thing to shake me up and wake me out of my ‘coma’ of what my life was before. Everything makes sense and I don’t feel like I am tumbling anymore. No one teaches you what life should be like because you are meant to find out for yourself and actually every stage of life we go through is ever changing. So who can teach you this? But the more I learn, read, listen and watch I realise life is so simple. And that is so funny as one of my mantras is ‘Keep life simple’.

tt1

A proper update….

I haven’t been ignoring you. I usually say it’s because I have been having too much fun but the truth be known these past days have been hard and I meant to let you know what I have been doing but I just haven’t felt up to it.

Most days I am walking around in haze. The headaches have been hurting; the cognitive loss has been hard but today is a good day. I seem to have all my faculties and I am right now feeling good. Well sort of…

So what’s been happening over the past few weeks?

I think I will work backwards. I finally had a meeting at St Bart’s where I was told I had been accepted for gamma knife. But then on Thursday I was called by Doctor Oliveros to be told that she had received a letter from Dr Plummer and he had suggested that right now I should have whole brain radiation. I was confused. I said I had received an appointment to go down the very next day. She said to go to would proceed with the whole brain radiation. Right… I hate being messed about.

We headed to London in pursuit of gamma knife. We waited and the registrar we saw had no notes on my ‘story’. The problem is when asked any questions I am getting to the point of not being able to answer. It sounds so weird but I am losing all ability to answer questions. It makes me anxious and I need Pete by my side. I have good and bad days. That day was a bad day.

Luckily Pete did what he could and we pleaded with them to give us the gamma knife. The reason Dr Plummer suggested that I have whole brain radiation is because there are more than likely going to be more than four tumours. I guess I was hoping I could have it all in one go and it would simple, one visit all done. Pete had suggested that having whole brain would be better. I guess the down side is that I have had to wait for so long. Can you believe they only have one multidisciplinary meeting a month?

The other good thing was that I got to meet Dr Plummer and he now knows who I am. The registrar got him into the room and he discussed my case with me. Pete was very patient and really tried to express his concern but it was ok. I took it on the chin. I was gutted, mainly to have waited for so long. I had the MRI on the 1st and it was now the 24th every day the headaches getting worse.

The day before I went down to the Care Oncology Clinic in Harley Street. There I discussed details of being on Metformin, Mebendazole and Atorvastatin. It was a bit weird. I have been accepted onto their plan and will be given the prescription. I am going to take it in the hope it helps me further. They actually work with Professor Dalgliesh and Professor Stebbing so they are in good company.The problem is that when I returned home I couldn’t tell Pete what I had happened. I just knew it was good!

I have also been to the hospital for five hours of treatment. I had to have globemular filtration rate. This is preparation for having carboplatin, that I intend on having possibly. I had to have my bloods taken every hour for five hours….. Oh dear god.

Before this it’s all a bit of blur. I have spent almost every day on the sofa, wandering around the house and watching my house get dustier. I’ve been lost and sad but every night Pete comes home to cheer me up. That’s the only time I am really happy. Until now. I’m having a good day.

The weekends have been great. I had my best friend Lizzy and her hubby turn up for Sunday lunch. Sadly that was a bad day and I wasn’t feeling my best but being my best friend she sat with me until I felt better.

This weekend was amazing. It was Pete’s business 25th birthday celebrations. We had planned it for months so I had no intention of not going. It was being held on a boat on the Embankment in a posh venue. I wasn’t feeling hundred per cent but having people around me helps. Plus I also find a spot of retail therapy really makes me happy! Nothing new there except I make decisions quicker. I really know what I want now!

I was a bit anxious about being left on my own without Pete as I didn’t want to trip over my words or forget something I wanted to say but thank fully I held my own and did ok.

It was an emotional night and we invited some of our friends and old staff and new staff and clients. We had a blast. Everyone was concerned about me but I wanted it to be about Pete and his achievement. It was nice seeing everyone and having plenty of cuddles.

 

 

So I have today been trying to get hold of the hospital here and thankfully have got through. It pays off to be nice to people. I am going to see Professor Harris tomorrow for a clinic appointment but have also been told that I can go to have my mask fitted in radiotherapy. I have to wear a mask over my face. Luckily the treatment is only ever about 3 minutes long so I won’t feel claustraphobic.

 

On Friday I was lucky enough to come home to a card from Davina McCall! I know who organised it for me but what a day to get it…. It really perked me up.

 

A few weeks ago on the day that I was going for my MRI I had to do my final test for the health coaching course I had been doing all year. I sadly failed by one point… I couldn’t believe it and was so gutted. I decided to not worry about it but felt absolutely mortified that I had done the course and failed it. Well they let me do it again…. and I passed! Yeha!

I said I had an appointment with Dr Kenyon from The Dove Clinic recently well I had to cancel it. I couldn’t drive, obviously and I just have to put things on the wayside. I will deal with it when my head is clearer…

My chesty cough is still there. I have got a cold though and without too much detail I am bringing a lot of yellow stuff out of my nostrils. It’s hard to wonder if that what is causing my cough. Prof Vogl said that it would clear up in two weeks. That’s about now… The thing is I coughed so hard yesterday that I have started having those pains where I can’t move my side, just like before. It’s not what I need right now, and I hope it goes by tomorrow… Please…

So in one sense I feel like I am getting somewhere and the next I am not. It’s been a long month.
I really thought I would be into the treatment by now. Thank fully Prof Vogl has been done. I am returning in a few weeks for my next visit. I will also be having treatment from Dr Nesselhut and I may be seeing Dr Seibenhuner. Let’s get charged up with whatever I can have!

I am so pleased I cancelled my clients. This time I don’t feel guilty about having had to. I just needed to.

I just want Pete to know how thankful I am to have him. He has been doing everything for me. I am like a lost sheep right now but he gives me all the love I can ever need. Give me my brain back and I will fine. I can then deal with my chest and lungs.

I want to thank everyone for the support they have been giving me. I feel overwhelmed every day.

Thank you will never be enough…….XX

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!

Side effects of il2.. where’s the paracetamol?

It was the first day of the injection yesterday. I collected my il2 injections as usual from St George’s. This time it was different. The lady that was giving them to me happened to ask a research nurse for some alcoholic wipes for me. The nurse objected to the lady giving me the injections as they had to be handed over by a qualified nurse. That led us to trekking across the hospital to the oncology ward to an unsuspecting nurse there that had no idea what to do. I asserted myself and said all you need to do is ensure I am that person stating on the package. Luckily I blagged it and get out of the sharpish. I am sure the research nurse meant well but come on… I have done it five times already!

I did the injection earlier than normal and started to feel the effects at about 8pm. I tanked up on paracetamol and then hoped I would sleep. I awoke about midnight and felt a bit iffy and waited a while before taking more paracetamol. I slept quite well and woke surrounded by fur; the cat and teddy bears that Pete had put in his place. It was lovely.

I dragged myself from bed and got on with my day as usual. I have a busy one today as we leave on Friday for a little road trip. We will be away a while on vacation in France. I am sort of looking forward to it but I find preparing everything a strain on my brain! And I am starting to worry about leaving the kitty behind.

I read up again on the side effects of il2 and why I feel like I do. It says that whilst taking it I could have lower blood cells than normal making me susceptible to infection. The ailments I feel such as aching, fever and generally crappy, are all perfectly normal. I also had a racing heart and on reading, notice that is also a side effect. I think like everything it is accumulating and the side effects come quicker and last longer. Prof D did say that I could reduce the dose myself but part of me thinks it must be working so stick with it.

What I would really like to do over the next few days is…nothing. I want to lie down and watch TV and then read some magazines. I know I will be able to do that soon but I don’t want to spend my holiday lying down the whole time. I like to be active and sight see.

I have been using the nebuliser today again with a combination of distilled water and bicarbonate of soda. It kind of tastes odd and sometimes takes my breath away but I want to keep going with it. In fact I am going to have another hit of it now to finish of today’s dose.

After Thursday I won’t be having any further injections for about a month, due to being away and timings. I feel a bit apprehensive but hope that some time away with family and friends will be enough medicine for me.

As we are driving I am taking everything that will benefit me such as my juicer, nebuliser, yoga mat and more. I hope it all fits in the car!

I can’t wait to spend time with my Bear… Happy thoughts. X

Time to heal myself….

Yesterday I cancelled my pranic healing appointment. I had to go to hospital but ever since I didn’t go last week as I wasn’t feeling up to it I have been undecided what to do. Last week because I didn’t cancel 24 hours prior to the appointment I was asked to pay. Ok this seems fair as everyone is running a business and I know far too well about people cancelling last minute and I too have a cancellation policy. But I don’t charge because I ask people to be flexible with me and because of my circumstances and also I give people allowances. It most often can’t be helped and although I lose out on the money and I could really do with it I think it’s best to keep those clients than to drive them away.

I felt really put out by being asked to pay and maybe because I was a little under par last week I responded when I was told. I asked if they want me to pay for not giving enough notice then is it ok that I am left sitting there waiting for my appointment whilst the therapist runs overtime or hasn’t turned up? What’s my time worth? And let’s not forget the time he didn’t turn up at all. I travel a good hour by car there then back for the appointment.

I am not sure whether I was testing them to see how they would respond. They said on that occasion they would overlook the charge. Hmmmm.

I have had a feeling of change about me and maybe now is the time not to have so many healing appointments and rely on other people to make me better. I think I should be healing myself. Work on my being. I decided that I would use an app I have and spent half hour yesterday listening to some hypnotherapy and visualised healing.

I think it is all too easy to ask someone else to heal you, but we have the ability to work on ourselves and although it is hard sometimes it is really worth it. It’s like meditation. It doesn’t come naturally, but with practise it can be a really useful tool to relieve stress and to become more mindful.

I have been feeling quite anxious recently when I go for pranic healing. The journey there is on the M4. Not the nicest of motorways. Then there is the waiting and the worrying if the therapist will actually turn up or how late he will be. For me, I like planning my day and knowing what I can fit into it. Running late isn’t acceptable to me. I understand sometimes but to have to accept it every time can be hard work for someone like me. It actually made me laugh last week when I was contacted only ten minutes after I was due for my appointment. The therapist has only ever been on time once in ten months.

The way that I was feeling when travelling there and the anxiety it caused waiting completely takes away the purpose of the visit itself. Pete said it is a waste of my time and money and it has an adverse effect on me. He is right. I do have more appointments booked but I think I will really consider if it is for me any more.

 

Sometimes it is better not to have every treatment available and take a step back to consider what’s right for you intuitively.

 

 

Oo this is a tricky one…

Ah, the bank holiday weekend wasn’t bad at all, especially the one day the sun came out. The garden was our retreat and after much work we sat on our decking and took it all in. We love the sun. Sadly it has gone again but we will take it when we can.

Pete spent quite a lot of time yesterday after work (despite it being a Bank holiday) reading about the vaccination trial I am on. He found some really interesting information about how the heat killed mycobacterium has been around for a very long time. Read this excerpt;

‘In the late 1800’s Dr Coley noticed that patients who got an infection after surgery had a better prognosis. He created infections known as Coley Toxins. Although he had success this became overshadowed by Chemotherapy. (Over 100 years ago)!

The ability of this type of infectious vaccine to create immune response was first shown with BCG that protects against tuberculosis and is also still used today in the treatment of lung cancer and melanoma.

Mycobacterium vaccae was used on the same principle to treat leprosy and TB. Unexpectedly this also showed improvements in patients suffering cancer. This led to the development of: IMM-101 or Mycobacterium Obuense. M. Obuense has been heat killed so it is not infectious but still produces the desired immune response.

It is proven that cancers grow due to a deficiency in immune response and IMM-101 has been shown to encourage the body’s immune response and current clinical trials are being undertaken to investigate how effective this response is.’

So because chemo came along someone decided to put it on the back burner and forget all about it!

Why am I not surprised?

The vaccination sites on my arm have been ‘interesting’ this weekend. They have been pusy, yucky, growing, and painful. The one that I had first seems to have reactivated and is also giving out lots of gross stuff. Pete has been brilliant cleaning it with antiseptic wipes and dressing it daily. I try to leave it to air as much as possible but need to avoid getting them infected. I don’t think I will be ready for my next week next week. There is too much stimulation. Of course this activity does show stimulation of the immunity.  Pete read up online and he found another canSer survivor who was having the same treatment a few years ago. She too had the same response and was advised that it is good. OK I’ll take that.

 

I had a pranic healing session today and as usual it was very relaxing. In fact so relaxing I dribbled. Bearing in mind I sat up throughout! Pahaha! I was slightly embarrassed and had no idea there was that much saliva! It even left a dribble mark on my top…Shameful…

 

I’ve been thinking today, uh-oh… that’s never a good thing! I have been trying to work out what would I do if I didn’t have canSer? I have been trying to visualise living my life as I want it to be. That’s what I have been advised and I completely understand that you need to project where you want to be because your thoughts become your every cell and the mind can’t tell what’s real and what’s not. The problem is that when you have been living a certain way for so long, and for me it’s nearly four years, how do you switch that off?

Most canSer survivors will tell you that every twinge or ache and pain immediately puts the fear of God into them.  In a way having canSer and knowing where it is makes you feel more secure. You can kind of contain it. I would much rather not have it, believe me, but this is what the mind does to you.

Some people like being ill for all the attention. I am not one of them. I would gladly let all this pass but then what would my life be like? What would I be thinking about and focussing on?

We are all told not to focus on material things, that they do not give happiness. I know that love is the answer and I guess for most they have families to invest all their time and effort into. Women of my age generally have plenty of unconditional love all around them from their children. I guess I would try for a baby if I didn’t have canSer but I think I would have a fear of canSer returning. There I go again, not letting go. This is a tricky one.

This all came about because Pete asked what is the point of life? He too struggles with it. It seems so pointless when the love of your life will at some point die. one of us will be left behind. Now or in thirt years. I suppose the real question is what is the meaning of life? To me….

I have been thinking long and hard and I always put things together such as working more hours in a trade I love. But surely there has to come some positives out of this ordeal. I don’t want kudos or to be patted on the back and told how inspirational I am. I am happy to blend into the background. I think for me making Pete happy is my top priority. He needs oodles of love and I am the girl for that job. I’d like more responsibility so if I cannot have a baby then a dog would suffice. I think I’d like to volunteer my time and energy but I am not clear on how I would do that yet.

I feel that I have a duty to help others. There must be something I can do to give my life purpose, to give it more meaning.  I intend on my life being a long one, but I think I should live by my motto and that’s to ‘keep it simple’. I am going to keep on pondering on this one and will let you know if anything arises. Life after canSer feels like a world away at times but yet so close. More than anything I want Pete not to have to worry about me every second of every day. Despite knowing that worrying does no good, how does one switch it off?

For anyone that’s worried, I am not feeling sad. I am just asking the question that we all should be asking….What is the meaning of your life?

I’ll leave you all with that thought….

Light and Love. XX

The scab and goop stuck to my bed… Gross!

Didn’t really sleep last night mainly due to worrying about waking up early this morning. Why do we do that to ourselves? I got on the road to Tooting ultra early mainly because I know how long it took Pete to get there last week when he was visiting me.

I arrived by 8am and my appointment wasn’t until 10am. I guessed ghee time would fly catching up with Pete on the phone and having a cuppa at the cafe.

I checked into reception at 9.30am. It seemed like quite a small oncology department but was clean and new. I was greeted by a lovely nurse who seemed to know all the patients and was rushing around ensuring that the Prof had everything he needed. I was quite impressed. It’s very interesting seeing how different hospitals operate.

I was seen about half hour late but this isn’t anything compared to the Churchill in Oxford which has delays of up to two or three hours sometimes.

Prof Dalgleish asked how I was doing and discussed the vaccine site on my arm. It has been a week since I had it done and now it was hugely open and pusy. Last night I must have slept on it when it had a scab and was like a volcano. When I woke this morning all the scab and goop inside was stuck to my bed.. Gross. The volcano lump has gone and now I am left with a gaping hole like before. It’s really sore and I aim to keep it dry and untouched.

Prof explained about the injections I was there to pick up and start administering. He has provided me with three syringes containing interleukin 2. I have had this many a time at Dr Nesselhuts. The syringes contain a tiny amount and I am to inject myself in the tummy every night for three nights. I may experience flu like symptoms but they will pass very quickly like a light switch. I have never experienced flu like symptoms before but you never know? He also told me that the vaccination sites on my arm may be deactivated and become very pusy again. Oh well that’s the way it goes.. But he said that is great because it shows my immunity is really active.

He said he doesn’t really know what’s going to happen. This is a trial of sorts and he mainly deals with melanoma. So we just have to wait and see. I told him that I have a scan booked for the end of July so it will good to see what is going on since the ablation and all of the immunotherapy.

The idea is that the il2 stimulates my own natural killer cells. So that will enhance the ablation and the IMM101 vaccinations.

He told me that he had a melanoma patient who had some lesions ablated and that the imm101 and il2 combined made the other lesions in his body die. I am not sure if he has more than one success but here’s hoping so. He says he knows this works well in lung canSer patients too.

I don’t mind being a guinea pig. I have been for two years I just had it combined with conventional treatments too. But from what I know so far from my last scan is that having just these treatments the canSer isn’t progressing hugely and in fact some of the tumours were actually declining.

I left with an ice box containing the injections and set off on my way home. There was plenty of traffic because of the Wimbledon tennis tournament. Oh how I would like to be there watching a game.

It took me what felt like ages to get back. I felt pooped when I got in so I grabbed a blanket and sat in the back garden doing some homework.

This is where I am typing this blog from. It’s nice, clouds to break up the heat and a slight breeze.

I am making my second batch of Bravo Probiotic yoghurt or in the process of it. I started it yesterday and it is currently fermenting. I have run out of the last batch and I am getting used to its funky taste. My kitty loves the stuff. She has been licking my bowl clean every day. Pete has even tried it and says he doesn’t think it even needs sweetening of any kind. I definitely think it must be doing some good. I like to think my gut health and immunity are loving it.

I’m going to make some guacamole and a large mackerel salad for our tea then I’m not watching any football! I am putting my foot down! Ha ha! Oh who am I kidding.. I can’t say no to the Bear.. I’m going to have an early night.

Night all. X

Thank you Universe….

I was discharged from hospital Friday evening! Yay! I was delighted to be going home as I just couldn’t relax there. The food just doesn’t heal and nourish one and the noise is so great that unless you are completely exhausted no one is ever going to sleep.
But that doesn’t matter any more. I got home, unpacked and straight into my pj’s. My bed was calling me. But first a green tea.. Ahh..
I slept really well, my first night of many to come I hope!
I have felt absolutely fine but to avoid getting I’ll have to be careful therefore I have cancelled all my clients for this week. However this has just freed me to do more chores and other bits and bobs. I never was much good at simply lying around. Although I did achieve that yesterday.
Saturday was really fun. I celebrated my birthday again with some of my closest friends. The weather was scorching and we all lounged around in our back garden drinking and chatting. It was as if I had not even been in hospital at all.

 
I am very pleased actually that the entry wounds for the ablation are really tiny. There was no need for stitches and the bruising is minimal and doesn’t hurt that much. They can’t be seen either as they are within my bra area. I simply cannot believe that I can breathe so easily either. It hasn’t affected that and I have no sensations in there at all. That has to be good.

Back to Saturday. Pete was ever the host and made tasty food and cocktails for us all whilst we listened and danced to music. You know, nothing stops me from having a little shimmy!

 

By 10pm the sun was starting to go down. With it being the Summer Solstice and the longest day we wanted to make the most of it but to be honest I was pooped. I slipped off to bed then I think one by one so did everyone else. Pete was the last in.
Sunday we all had breakfast, made by Pete yet again, and then our guests left. We had a day of nothing planned. We cleaned the house, stripped beds and got washing on then once all that was done we just chilled out. It was bliss. Sometimes they are my most favourite days.
Pete was overflowing with love and cuddled me all day. For me that is bliss. Bless him. He really is a teddy bear.
 

Today is the first day of my week off and I have been quite busy actually. I had lots of emails to send and have contacted Prof Harris giving him an update on my surgery and asked for a ct scan of my chest, abdomen and pelvis for the end of July, just before I am due to catch up with him. That will be three months since my last one.
I emailed Dr Nesselhut to ensure that upon my next visit the EBV virus vaccine is there. That’s the whole point of going really. No reply as yet but I am sure I will get one in due course.
I also emailed Dr Gonsalves, who performed the ablation. I had woken up on Thursday night filled with gratitude for what he had done, how wonderful the staff were all despite the horrible situation getting in the hospital. I want him to pass on my regards to all of the staff and to know that it was highly appreciated.
I emailed Professor Dalgliesh to reiterate where I am meant to see him this week. Apparently it will the oncology outpatients at St George’s where he will be providing me with interleukin 2 injections to start doing at home. Exciting.. The next phase
All in all things are pretty organised and I am really looking forward to my week ahead.
Yesterday was made better by our  wonderful friends bringing their new bundle of joy into the world…just lovely. I can’t wait to meet him and give mummy a cuddle.
With all the gratitude flying around I have been meaning to create a gratitude jar. I bought some pretty coloured paper, cut it into small sizes and have prepared myself for the next year to jot down any grateful thought I have. On my 40th birthday next year I will read them with Pete and realise just what a wonderful life we have. I know this already but I think it could be really heart warming and such a lovely reminder for the great and wonderful things that happen around us.

 

Right now.. I’m off for a cuppa and to try and relax…
It would have been better had I not just cracked my head on a cupboard door. That’s the Universe reminding me I’m alive.

Thank you and noted….

 

XX

 

What? My procedure will be cancelled if there aren’t any beds available?!

I was asked to call St Georges hospital first thing yesterday morning, the day before my ablation procedure to see when they wanted me to attend in preparation. As I said before I was reluctant to attend the night before if I didn’t have to. What I wasn’t prepared for was being told on the phone that weren’t any beds available and to call back later. I asked what if there aren’t any beds later? They said the procedure would be cancelled. WHAT?  Oh my goodness. I felt sick. I said it can’t be cancelled I have been waiting for this for months and my life depends on it. That might sound extreme but it’s true.

I was asked to call back an hour and half later and when I did I was transferred to the junior consultant who reassured me and said don’t worry I will ensure you get a bed. I told her I was going to have my vaccination injection at the London Clinic that afternoon. She said to go straight from there to St George’s in Tooting.

Gulp. I kind of thought they would say that. I knew that if I didn’t go I wouldn’t get a bed. So I rearranged my travel arrangements slightly and quickly packed a bag for staying overnight at hospital. I caught a taxi to the train station and hopped on a train London bound.

Pete reassured me and said that he would drive down later with my bag, save me carrying it. Perfect.

I felt very floopy and unsettled. The fact that the bed wasn’t a certainty made me feel sick. For a short while I thought oh dear god, what am I going to do if it’s cancelled? Then I thought… No. I will be having the procedure. They will have to throw me out of hospital. Grrrr.

I got to the London Clinic in quick time and the service there was impeccable. Well you would expect it to be for the charges incurred. The doctor was happy with the state of my current vaccination sites, which have healed up really well in the last week. They decided that I should have half the dose than before and that it will now be done monthly.

Almost within half hour the site which is about an inch from the other two had already affected them. A hard lump has come up right next to the second site. Very strange but curious. It’s currently very hot and itchy.

 

I got to St George’s, the Oncology ward and it was complete bedlam. The Churchill in Oxford is busy but this place was, well awful. Mess everywhere. The toilets in a right state and I was told as expected that there was no bed available and that I was to wait. In the mean time they would take bloods.

I sat and waited for a few hours and then asked if I could venture outside and sit in the fresh air. It was so hot and stuffy I felt like I was being infected with everyone else’s germs.

Off I went and waited for Pete to arrive. The problem was the traffic was terrible and it took him two and half hours… Poor boy. By that time it was 7pm and I was back in the ward which had now quietened down. I was told by the very flustered junior consultant that they were going to try and free up a bay which was currently being occupied by men, which needed to be cleaned. They decided that it would be better for me to be on that ward in case there were difficulties after the procedure. Ok, I thought that sounds great.

All during that time, I had been contacting Prof D, Dr Gonsalves and anyone else that would listen. I figured I’d get on their cases to ensure they got me a bed! I had a few replies and they all said they were sorry but there was no private wing at St George’s and that unfortunately that is how it is at this hospital.

By 7.30pm Pete arrived and we were told to go out for a while. I had a plan. Let’s go off site and have a tasty dinner. I had seen a great little bistro on my way to the hospital. We weren’t disappointed. We ate more than enough. I figured if I was to be nil by mouth from this morning I may as fill myself up now!

We got back to the hospital ward at 9.30pm and were told that they hadn’t moved the men from their ward and that I was to go where there was a bed available- across the hospital in another ward.

A nurse took us on a ten minute walk and we arrived at the Amyland ward. A ward for geriatrics, people with Alzheimer’s and rheumatoid arthritis. My heart sank when we walked in. The hospital is old and the lady opposite was clearly not with it and was crying and asking the nurse where she was over and over again.

 

I unpacked and got settled in and walked Pete to the door at the end of the ward… I so wanted to go home. I was told to try and sleep but that was never going to happen. Not because I was worried but because of the old lady across from me. She called out for Ivy, Edna, Maria and anyone else she could think of. She asked for forgiveness, the need for a poo and so much more. The whole bay was kept awake all night. Seriously I wish they would give her something to sedate her. Bless her. It just made me think, I don’t want to get that old! Which is ironic since I am doing my best to stay alive for many decades to come! So weird. I kept thinking what is this trying to teach me? I came up with nothing.

 

At 5.20am I decided I would have a shower and eat something before I was told be nil by mouth. The nurses here are lovely and I have since had an ECG and have a catheter fitted with IV fluids on a drip. The procedure is due this afternoon.

That’s the only details I have.

I am seriously missing Prof Harris and the Churchill hospital right now. That hospital rocks compared to this. It’s chaos here. I will forgive everything providing the ablation goes to plan.

I just hope I can go home quickly. I will never heal here. I won’t get sleep, I feel like I will catch every bug under the sun, especially when I am greeted by sick and faeces in the toilets on my very first visit to the loo…

 

Pete has been amazing as always and has insisted he will be here when I wake up. It’s such a gruelling car journey. It’s not necessarily far it’s just horrible on those particular roads.

 

So here I am sitting on my bed, feeling very spaced out due to no sleep and a little bit anxious. I hope it doesn’t hurt too much. I want to go home!!