Henna Crown fit for a Kitty princess……

It’s officially the festive season… Now its December we have got our Christmas tree up and the house is feeling fully festive! I am actually quite excited! I’ve had a few days at my mums and conquered the Christmas shopping and have now completed the wrapping of all the presents. What a mission. But it’s now completed. The cards have been written and posted…. Phew…

Health wise I have been plodding on doing all the rituals and taking a handful of pills and potions every single day. Things are getting easier in that area. I know it’s all a mental thing. It’s the thought of taking them that makes me want to be sick.

Dietary wise I am still eating what makes me happy. I figure that forcing myself to eat what is apparently best for me isn’t currently doing me any good. I am putting on weight which is a good sign.

Yesterday I had an MRI and CT scan. It’s been two months since I was diagnosed with brain mets and I haven’t had any headaches and I don’t have any chest symptoms such as that pesky cough. Even after having had the MRI and slept last night, I didn’t experience any headaches, which the MRI can cause. My head was throbbing quite a lot whilst having the scan but the lack of headaches has to be good news! I have been taking my concoction of drugs and supplements and my regime is quite extreme when I am at home. Pete did say to me my only job these days is to get better. Right oh! Results, I hope, are going to be given to me next Tuesday when I see Prof Harris in clinic.

I am still waiting for the results of my tumour which has been sent to St Barts and now to the U.S to see if my tumour expresses the protein blah blah blah… whatever it is, it still hasn’t arrived, HOWEVER, I did receive a message from the lovely lady at St Barts saying I may be able to get on the trial even if I am negative.. Hmmmm, interesting…. I still hope obviously that my tumour is positive. That would be a great outcome and the trial should be successful for me. I was asked to go to London and have ECG, bloods, and more scans done in preparation for me starting the trial.

Despite me having scans here in Oxford I still have to go there. I explained that I am pretty hectic the next few weeks and over Christmas so it has been agreed that I will go down and do all that in a few weeks then aim to start the trial in January. Let’s face it; I am yet to see what Prof Harris has to say. You never know, all the stuff I am currently doing could be working, plus I am due back in Germany for more treatment in a week or so with a little sneaky trip to the Christmas markets. Well you can’t expect a German bear to miss out on a bratwurst and gluhwein!

Today has been an exciting day. I went to Selfridges in London and met with Pavan, a henna artist. Actually she is the world record holder for being the fastest henna artist! She did a henna crown on my bald head… I was a bit nervous as it was being done at her henna bar in the middle of Selfridges and I wasn’t sure if I would like it or not. But seeing how confident Pavan was and how friendly she is, I totally trusted her. She said she would make it pretty and use glitter and gems.. I was totally sold. I love being glammed up and I really want to learn how to do henna crowns so that I can do them for other ladies in my position, hopefully at the Oxford Maggie’s Centre and at home here.

It didn’t take long at all and I also had a bindhi applied. I am thrilled with it and so were the spectators that had gathered round. On the train home an elderly lady asked if I was going to a photo shoot. When I said no she said that I looked amazing and should have a photo shoot! Bless her.

The henna crown lasts about 10 days and then fades off. I can’t wait to give it a go myself sometime. For more information on Pavan and her work please go to her website; http://www.pavanonline.com/

Here are some pictures :

5 6 7

With Christmas coming there are so many people to see and many celebrations to be had. This weekend is crammed with fun with friends, starting on Friday. I can show my head off with pride.

Hoping everyone else is feeling the love, light and Christmas cheer…. XX

Deflated and unsure…

Pete and I went to bed early last night. So early we had about 11 hours sleep! Boom! I love the Zum Lowen’s beds. Dragging myself out of the warm and comfy slumber this morning I scooted to the clinic to have my bloods drawn ready for up and coming visits. I was due to return at 11am for the next hour long treatment but as they had time I had it all done at once.

I had a chat with the nurse whilst lying there. She was telling me how much easier things are now.e asked if I remembered last summer with all the Portuguese patients. Do I? Boy yes. It was so busy and many mistakes were being made.

I asked why it wasn’t as busy now. She said it had calmed down since people had started abiding by their appointments. She said that for a shirt while people would stand there at the counter demanding an appointment. They had travelled from Portugal without having an appointment and cry until the doctor saw them. It’s amazing what desperation does to one. The staff would start at 8am and finish at 8pm. I guess that’s busy over there.
Thankfully peace had been restored.

An hour or so later we met with Dr Nesselhut who was lovely as usual and this time had a doctor from Amsterdam sitting in with us.

We explained again the scan results and he seemed concerned by the necrotic ones that were active in my lymph nodes. He said that he would like/expect no changes so if the next scan still showed a lot of change then we need to let him know so that he can change our protocol. Pete mentioned the fact that I’d had head/neck ache for sometime and Nesselhut insisted on getting it checked out by way of bone scan. He said it is probably nothing but better to be sure… Not what I wanted to hear.

Pete also mentioned my cough and explained Prof Harris’s thoughts on it. Nesselhut was less concerned but suggested codeine at night… Not sure why.

A lot of conversation was banded about things that could be done and what was inbound. He talked a lot about anti pdl1, pd1 and more. We said we thought I had already had that. He said in the vaccination, yes, but not injected directly into me. He said the quantity required would result in the cost of £100,000! He suggests it works better because when administered in the vaccine we are just training the dc cells, whereas administering it into the body, it attacks the protein cloaking the canSer and therefore has a much better response. They have high hopes for this.
Pete not knowing the price asked when we could start that treatment. Nesselhut said not yet then told him the price….. Jaws dropped. Let’s hope I don’t need that then!

Whilst chatting about triple negative Nesselhut said that they had amazing results for those who had not waited till they metastasised for dc treatment.

He says the success rate for those who have the treatment is 100% over 5 years. If only I knew about his work before the canSer had metastasised.

For someone like me he said there was a 30-40% success rate over 5 years… Well I guess that’s me in that 30-40% then!

This is great news for any TNBCers out there. It isn’t the worst thing ever to have that diagnosis and despite needing funds if you can obtain them, then go for it. It’ll save your life.

I had my vaccination intradermally and intravenously. My arm is currently as big as a balloon. The biggest reaction yet. I feel fine. I am longing to be at home but then who doesn’t when you are sat at an airport.

Thoughts have worried me this afternoon. I guess if I am being ever alert then I know in my gut that I should get my headaches checked out. If I am being less cautious then I want to wait.  I have neck ache. It feels like I need a bloody good massage. The thought of having an MRI scan fills me with dread.

Whilst having a green tea this morning I suddenly felt sick and had to rush to the loo where sadly I vomited. What caused that? Don’t know….

Last night I spent a little while trawling through FB, as you do. I saw a post on The Huffington Post. I’m not one to follow blogs, bizarrely enough on other canSer survivors, but this one caught my eye. I read it to Pete and we both cried. Not wanting to ruin it for you, the outcome isn’t all happiness and joy but the power of the internet has meant her post has gone viral and her husband has written to thank everyone now that she is gone. I’m reading far too many posts of late of women dying before they are 40, not just of breast cancer but bowel cancer and more.

Here’s a link to Charlotte Kitleys’ final blog that she wrote before she died : HUFFINGTON POST

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

I don’t think Charlottes’ post was all doom and gloom but full of love, hope and happiness. I will take her advice and run with it.. I advise you to do the same.

Night all. Hopefully I’ll be home soon tucked up in my favourite place with my favourite person plus the little furry one.

Xx