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!

Make a wish, three wishes, something about wishes anyway….

Sleep update.. I had about 11 hours sleep last night! Yay! I needed it and I probably could have slept for longer. It was probably the amazing pancakes that did it… Kitty that got the cream mmm.

So today I have been less sleepy and more focussed. I feel pretty balanced today. It was good I wasn’t sleepy as I headed off to Farnham for my acupuncture treatment. It is now every three weeks which really works for me and I am not sure if maybe I needed it sooner but I felt good when I left there today.

Generally my energy still feels strong but Michael worked on my lung points to strengthen them. I think that’s great considering I have been feeling tired recently and with all the alcohol I drank last week I thought I may have been a bit floopy.

I had a call late yesterday from Lynsey, Prof Harris’ secretary at the Churchill Hospital. I emailed her regarding the letter I got stating that I had liver metastases which is news to me! Prof Harris wanted me to know that he has checked my notes and he confirms that I certainly do not have liver metastases. On telling Pete he said that’s great news, Prof Harris must have checked my scan from Monday too? I doubt it… That I will need to wait now till Tuesday for.

I still feel pretty calm about that too. I am not sure why? I always end up being so shocked and wonder if I should prepare myself more by thinking it could be worse but then goes against everything I believe in right now. I am trying to think and visualise that it has gone and isn’t growing back, that my cells and immunity have sorted themselves out and that the mutation in there won’t happen again.

In the last couple of days my kitty has been extra ultra uber cute.. If that’s possible.  Even now whilst typing this she is on the desk under my nose trying to get in the way. I love her for that. I really see myself in her mannerisms! Ha ha! If I want attention that’s the sort of thing I would do! (Don’t try to imagine it the mental picture may scare you!) I wonder why she wants to be so close to us right now? What does she know that we don’t? Maybe she wants MORE food! Ha ha!

I’ve had a few friends I went to school with contact me recently and I am planning on seeing a very old friend that lived with me and my parents when I was only 14 or 15 so that she could finish her GCSE’s as her family were moving. I’m really excited. That’s the great thing about Facebook. I get to remember great memories and rekindle old friendships, even from primary school. That’s how I reconnected to my best friend Liz. We have been friends since we were born. Our birthdays are two days apart. We lived about 300 metres apart on the same road, went to the same school until we moved when I was 11 years old. We then saw each other intermittently but it had been around 15 years till I sent her a message the day before I got married then we became friends on Facebook. We have since  been in contact all the time. In fact the psychic lady I saw in November asked me if I was getting married.  Obviously not, as I’m married already. Then a week later my best friend got engaged.. Ahhh.

My favourite memory I like to quote from our childhood is that Liz had great fancy dress parties for her birthday. She looked brilliant dressed as an indian squaw and even Wonder Woman! But I always went as the same thing- a hula hula girl! Me in a bikini with a crepe paper skirt and flowers round my neck and one in my hair. Very inventive you might think!? Yes, but every year? Thanks mum. Bless her, she was busy with six of us and the shop next door sold crepe paper. Ha ha! Cracking up at myself. I will find a photo one day and show you all.

Speaking of the psychic another thought popped into my mind yesterday about what she said. She asked me if I was doing any charity work and said, ‘Make a Wish, three Wishes, something to do with wishing anyway’. And then it occurred to me that I am making ‘make a wish’ or ‘wish’ bracelets to sell for charity. I suppose it could be coincidence? I like to believe. She also mentioned April. Not sure which year whether it’s past or up and coming but I am intrigued……..

My hands are getting sorer. I have been trying to ignore any side effects of chemo but I have to admit they are looking rather red and the skin is getting sore and cracked. Yesterday also my big toenails ripped and lifted halfway down my toes.. Not good. Oh well it’s a while till I wear flip flops again!

I’m going to have a muscle relaxing Epsom bath tonight. I need my muscles soothed. I haven’t exercised today mainly due to leaving early to get to Farnham but also as I feel achy.. neck, butt, lower legs… running and me don’t get on. I’m a resistance girl mainly or rebounder. Stick to what I know. Back to Davina tomorrow. She makes me laugh. 🙂

I’m a bit late for lunch now but I’m off to fill my face. What’s new eh? At least my appetite isn’t affected!

My Christmas Wish is to have 1000 followers on Facebook…. 417 so far! Wow!!

Today started off as any normal day for me. The usual meditation, yoga, exercise, juicing, heat and air but my mind was buzzing and I was so excited! Excited at the thought of really getting more followers and readers of my blog and website. I contacted Nilam patel who is the co founder of HD brows. I am a qualified HD brows stylist and have known Nilam since she taught me over a year and half ago now. We have stayed in contact and I text from time to time. This morning I dropped her a line to see how she is and also to ask for her help. Then I got a call from Lara, who works in Marketing for the whole company, asked by Nilam, and we started chatting. Lara is a canSer survivor and has had canSer within the family too so this is something that is still very close to her heart. Her canSer has gone into remission, which I am thrilled for her. They have offered to help raise awareness in many ways but firstly by increasing the followers on facebook.

It is my Christmas wish to have a 1000 followers by New Years Eve. I started this morning at around 130.. so far it is already 417!! I watched the numbers raise so quickly this morning. Everyone I know and know of have been promoting it as well HD brows. I hope I reach it! I have been so excited all day!!

As mentioned yesterday, starting a charity may be a tall order initially so I have decided to help the Cancer Vaccine Institute. I called Prof Dalgliesh this morning but as I would expect he was with patients. I have emailed too and hope to hear back from him. I would think he will be very keen.

Going back to HD brows they have overwhelmed me by their support. They are thinking about helping raise funds by possibly donating a percentage of sales of some of their retail products or even doing a ‘Browathon’! I love that.. They have also featured me in their newsletter that goes out by email. I will post it on here when I get it.

The 3rd March 2013 is Triple Negative Day so I will be getting my thinking cap on and working towards that date to raise awareness and funds to good causes and people. I may see if we can raise funds to send people to Germany to have treatment too. With the help of friends I think this could be great! I’m so chuffed, I’m like a child. That added to Christmas.. Arghhh!! Love it!

My friend Lisa has lots of ideas and is going to contact photographers, pr people and all sorts. She asked if I minded being an ambassador for Triple Negative.. NO! (As long as I don’t have to speak in public. Pete will have to do that I’m a scaredy cat. :))

Other than that I have been getting ready for my holiday next week. I have been told not to pack much as we can buy plenty in Thailand… I am failing that. Ha ha!

Can’t wait for the Bear to come home tonight. Last day at work for him so hopefully he will be happy (stressed but happy)

I’ve been reading my new followers posts and I really am so touched by everyones support. Thank you!! Please go to the Visitors tab, then click on the View Guestbook link and add a little message. Let me know what you think of the blog and website. I love getting feedback.

Lots of love today.. I even found a heart in the bottom of my mug of reishi muhsroom drink.. Love everywhere.. I feel it in my fingersss. I feel it in my toeessss. Ha ha!

Sigh.. ……(That’s a happy sigh)

Another CanSer Survivors ‘Crazy Cancer World’…

Had my trip to Farnham for acupuncture followed by yoga with a little bit of healing thrown in too today. Acupuncture was good.. I had a needle put between my eye brows.. felt really bizarre and I bet I looked funny! Michael says today that my energy is feeling pretty good which is a change from my normal stressy pulse he usually takes. He has been working some lung points again as I have had this wretched cold this week, but I have to say I don’t even feel like I have had one at all! I feel really good about it. I actually feel much more calm than normal but lets face it my feelings can be so up and down every day it’s hard to know what has been the norm for me. Anyway, who cares about that except that right now I am feeling pretty settled in myself. I am regularly talking to myself and affirming, which is helping, and reading uplifting inspiring books, as well having lots of fun things to look forward to.

Yoga was great fun and I really feel taller. At one pont we sat opposite each other, Lyn and I, with our foreheads touching, chanting and clearing our chakras! Brilliant and weird how we both felt like one. Such a lovely lady.. I always want to give her a hug. Her voice gives me goose bumps when she is relaxing me or preparing me. She held my face today and said how beautiful I am.. Awww so nice.

A lovely lady contacted me via Facebook who also has breast canSer yesterday. She also does a blog and it was really interesting reading her journey so far. Hers started in July and she is just starting chemo and the whole hair loss thing. I have emailed her to lend an ear and any advice I can offer. She is upbeat and positive and calls it her ‘Crazy Cancer World’. I couldn’t agree more. Crazy….Hopefully I can guide her and give her a better chance of a full recovery.

It’s funny how things can improve and because they are so subtle I almost forget to notice. My fingers and toes have now regained full feeling in them. I think it has been like it for a week or so but I hadn’t noticed till earlier this week and didn’t want to jinx it incase it is was a brief fluke. I’m well chuffed and have decided not to focus on it so as to direct my positive thoughts on something else. I’m not sure why it has returned whether it be the bodys’ natural healing or because of supplements or treatment or what.. I like to believe it has healed because of everything I am doing.

Tonight I’m having a night on the sofa with the kitty. She has been ultra cute today. This morning she did meditation with me, then followed me into my treatment room where I have the airnergy and heat treatment. She decided she would sit nose to nose with me throughout and even stayed there whilst I was out. Then much to my surprise she even sat on my lap this evening. Who is this kitty? I can’t believe it.. It’s everything I have wanted..Wonder why the change in her? Or is it the change in me she likes so now graces me with her presence? Either way I am very happy for the little moments of love I get and I am grateful.  (It’s hard having a less than loving kitty especially when the Bear comes home from friends who have a 12 week old puppy…. Oh dear poor ol’ kitty can’t compete against that- Pete’s smitten but not with a kitten. :))

Night Y’all. X

‘Sending you much love and positivity’

Yesterday I went for another acupuncture session. The points that were manipulated were tender this time but I actually quite liked that. The feeling that something is being done, I guess. Michael, the acupuncturist said that my energy/pulse has improved since my first treatment. He did say my stomach and spleen feels a bit stressy and the lung was weak but overall better. He stimulated my energy and calmed my emotions as well as boosting immunity.

I am still astounding every time I log into Facebook how many people are sending me ‘heart’ pictures. It feels with me with happiness and it’s so comforting to know that people care and that I am in their thoughts. I received a card today from a friend from primary school, saying ‘sending you much love and positivity’ and another friend bought me lovely wicker heart decorations and heart wine glasses! So generous and overwhelming but most of all so brilliant to see her (I won’t embarrass you any more Amanda.:)). Infact I have received many cards from friends and clients. One client sent me an e-card with a difference- it is brilliant:) I feel so alive today!

I was forwarded an email from a friend yesterday with a recommendation to contact a doctor who advises and consults on alternative treatment too. I am going to be having a skype appointment with her tomorrow. It will be good to know if I am doing the right things and also to see how else she may be able to assist me. On her website it says she uses many techniques, one of them being Emotional Freedom Technique. This really interests me as I think the hardest thing for me to maintain is positivity( believe it or not). Some days I can become very intravert and worry relentlessy. I do try to eliminate stinkin’ thinkin’ but I get consumed. If I could stop that and just live then I would really be happy. I am happy when I’m busy. Life seems normal. But I can’t be busy all the time. I’ll keep you posted as to how that goes.

I love skype by the way! I had a great chat with my man this morning over skype. It’s so lovely to see him at the office….Bless him. He is becoming a convert to the alkaline diet. I send him to work with freshly squeezed juice, and alkaline water. Big kisses for him.. Mmmwwaahhhhh. XX

 

Love days like this…

Just a short post today- I am having the best day. I love our home and I love our garden. I’m so pleased to be home. Been cracking on with weeding and as the sun is shining and its sooo humid we are enjoying time together in the sun.

Today I have posted on facebook asking all my friends and followers of ‘Making triple negative a positve’ and my facebook page plus my business page ‘Live Love Glow’, to send me a picture of them and a heart sharing the love like the one of me below. I am so astounded at how lovely everyone is and the creativity they go to make it different and unique. I’m going to use the images to create a mood board or poster and let it remind me how much love there is to keep me smiling and positive.

Finished the day of with a BBQ (mine is all veggies) lsitening to Cafe del mar tunes and a cheeky glass of champagne curled up with my boy. Couldn’t be more in love and happy….. Love days like this.