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

It keeps life exciting, eh?

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

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

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

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

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

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

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

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

What else has happened this week?

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

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

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

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

It keeps life exciting, eh?

I honestly don’t know where the time goes. I was thinking the day before we left the villa that I was going to leave a lovely parting message and my thoughts on the three weeks that had passed.
But before I knew it we were on the road travelling hundreds of miles to get back home. It is now Thursday and we returned on Sunday. I have been thrown back into work (my doing-I booked up straight away) and the domesticities of life.
Despite having a washing machine there I still had many loads of washing and have now cracked the pile of ironing.
Then I was off to London yesterday to firstly visit St George’s hospital to collect il2 injections then hopped on the tube to the London Clinic to receive the IMM101 jab.
It is the last of the il2 injections and part of me isn’t sad about it. I performed the injection as instructed and this time took lots of paracetemol to avoid any side effects. It worked to a degree… Although in the middle of the night I felt hot and very uncomfortable. I decided to take more paracetemol but it didn’t really help. I had an unusual sensation on my arm further down from the jab that I’d had that day. I had a little rub of it and it was an old vaccination site from when I visited Dr Nesselhut. Not thinking at the time I ignored it but now I am conscious I recall my heart rate being elevated and I was having slight trouble breathing… Um, alarm bells!? I think I might have been having an allergic reaction to either or both of the injections I’d had that day. It was very similar to how I felt at Dr Nesselhuts that time I became allergic to the gamma delta cells, but on a lesser scale. Thankfully.
I remember my kitty jumping on me at what I thought was about 3am. I thought, ‘How did she get in here?’, and then looking to the other side of the bed saw that Pete was already up. I was so confused.
I feel pretty drained right now and like I am fighting something. Working today is helping take my mind off of it. I have another injection to do tonight of the il2 and just need to get a cup of ‘man up’ and stop moaning.
I feel all I do at the moment is moan about how under par I feel. I have to admit I haven’t felt 100% in ages. What with nausea and stomach aches, flu like symptoms and this blood cough which is driving me mad!
It’s hard not to think anything of the cough. It is still there and makes me feel rotten. Only because it catches me out. And it’s a non-cough. It’ not producing anything and it really doesn’t feel like an infection. Well I hope. I have been chatting to a virtual friend who says she has been experiencing aches and pains. It is so hard living with canSer and not think the worst of every niggle, cough and ache.
What else has happened this week?
I have been in touch with the London Care Oncology Clinic this week trying to firm up an appointment to see someone so I can have mebendazole prescribed. I have to get a referral letter from Prof Dalgliesh who is on holiday at the moment.
I have also been in contact with a doctor in Wimbledon who offers intravenous treatments such as sodium bicarbonate and salicinum. I had to send a letter of consent from my oncologist, which I have done. I have asked a few more questions before I book an appointment but I don’t seem to be getting a reply.
I sent Prof Vogl another message as he always seems so keen for me to go there and crack on with his TACE treatment. I asked if I should wait until my next scan. Typically he says that I should get there ASAP… Hmmmmm
Monday, Pete and I fly to Germany for my next round of treatments. It has been about 10 weeks since I was last there so I am quite keen on getting some sort of boost. I also need more scorpion venom and Nesselhut is the man I buy it from.
So as usual a lot on….. But it keeps life exciting eh?

Tomorrow we run in memory of Leanne….

I went down to London yesterday to the London Clinic to have the next IMM101 injection. I am getting used to hopping on the train and underground and have it timed to perfection. Yesterday however despite my fine tuned plans I arrived to find that all the trains to London were cancelled.

Oh no… This was due to someone throwing themselves into the path of an oncoming train. How awful. My initial thoughts were how am I going to get to there in time so I hopped on a train to Reading. Once there I noticed a train just about to pull away and it said it was going to Paddington even though it passed through Slough where the poor soul had taken his life. With everything crossed I hoped that I wouldn’t be stood on that train with hundreds of others for hours on end. Thankfully the Universe was listening and we got there with not much delay.

Whilst travelling I spent time thinking about how confused I felt. I felt obviously put out by the disruption this one individual had caused to thousands of people that day. I felt so very sad that he decided that his life wasn’t worth living and what an awful way to end his life. I felt absolutely gutted for the train driver (whom I was told was his birthday yesterday) who had to witness the horrible mess made by a speeding train and then I thought how life is so crazy. Here I am trying desperately to stay alive and well, doing everything in my powers to find a cure or at least something to extend my life.  Then there are those who simply cannot cope with their life and want to end it all in an instant.

I have never understood depression and it has been bought into the spotlight this week with the death of Robin Williams. I don’t think I will ever understand it. I didn’t understand it when my ex boyfriend decided to hang himself and I lived with him for over 6 years.

That’s life I guess…..

Since the injection my arm has as usual gone into an explosive mess. It has reinfected one of the old sites and I currently have huge blisters which will open up and become all pusy again. The price to pay in the quest for wellness.

 

Tomorrow Pete and I along with his colleagues and about 150 other people will be doing the Colour Run in Birmingham in memory of our friend Leanne Muir who passed in June. We are also raising much need funds for our chosen charities; Breakthrough Breast Cancer and The Cancer Vaccine Institute. 5 kilometres may not be that much a challenge and having paint thrown over us does seem fun but every step of the way we will be thinking of a wonderful women whom we miss every day.

If you would like to support us by donating please go to the link below and leave message when you donate.

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=makingtriplenegativeapositive

 

Thank you in advance and I will post photos of our antics after the weekend.

Happy Friday everyone!

 

Vaccinations, London twice and now something else to try get resolved…

It’s been a busy couple of days with hospital appointments. I got up at the crack of sparrows and drove to south west London to where I will be having ablation later in June. I met with a consultant (not the one that will be performing the procedure) who was very nice and seemed very kind and caring. He gave me the low down on the treatment and explained that the microwave (not radiofrequency as I was told previously) ablation would be done with me lying face down. They will gain access with needles between the ribs or thereabouts. They will make sure they get a clear margin all the way. He explained that ablation can be performed more than one. He said that by thermally ablating two of the lesions can encourage the others to die off too. Wow…. I hope so.

He explained that I would get a pneumothorax and that the lung will partially collapse but as I am a healthy individual it should sort itself out pretty quickly and he doesn’t anticipate me being there more than two nights. Fingers crossed eh?

I was then directed to the private health office where I was told to take a piece of paper with notes on. There the lovely ladies looked up the procedure on their computers and advised me of the cost; £1191 which includes one night and for every extra night a cost of £468. Then I need to find out the consultants costs… What? I hadn’t been told that but I am not overly surprised. I guess I need to email the consultant then. Still it’s cheaper than going to Germany so far.

I hopped in the car feeling all pleased with myself for having driven my way through horrendous M25 traffic and realised I had the rest of the day to get things done.  Getting up early is pretty cool! I spent the rest of the organising and working but still managed to get some meditation done in the back garden catching a few cheeky rays. I love the sun.

Today I had to hop on the train and head up to London again, this time central London. I made my way to the London Clinic for the second vaccination of IMM101. I arrived early and the nurse said that the mark where my last vaccine was looked really good and showed that I have responded well. The trials doctor then came along and asked me how I felt and then examined my lymph node regions; under the arms and round the collar. All seems fine so he gave the go ahead for the second injection. So far this one hasn’t come up quite as red or raised.  Oo I hope it’s still responding well.

Whilst checking my mail on the train I got an email from Dr Nesselhut’s clinic stating the ‘antisense’ vaccine I was waiting for on Tuesday didn’t end up arriving until 5.30pm. It was fortunate that we decided not to wait. We would have missed our flights. The email then said the manufacturers have stated that it can be kept frozen for three weeks and for this duration it will remain stable. Can I go back within the next three weeks for it to be administered? WHAT?

I replied and asked them if they were joking and that I was informed on the day it could wait until I return in July. I have insisted they speak to the Dr Nesselhut and get back to me with a solution. Either it can be done again, they come to me or they send it over to me and I get someone else to administer it. I am still waiting for a reply. That really takes the biscuit. I don’t want to die and I will do anything for my health but would I be mad to simply hop on another flight, drive all the way from Hannover to Duderstadt have an injection and then drive all the way back to the airport and get on a flight back to the UK? It sounds feasible if I had the funds and time, which if it came to life or death I guess I have. If I could go on my own then maybe I would consider so it doesn’t cause such an upheaval for Pete and work but not until they think about a better solution. I don’t feel overly stressed at this point but I am getting used to their f*** ups! To be fair it wasn’t Dr Nesselhut or RGCC, it was the courier company, but part of me wonders why didn’t the vaccine arrive when they requested it be returned on the 12th not the 13th?

There has to be a solution. I have no idea what effect this vaccine will have on me but I do feel quite excited by the fact that if Epstein Barr Virus is cured inside me then maybe my immune system might start working properly. EBV is proven to cause other canSers, not breast canSer but who knows what is happening inside of me?  It never runs smoothly… We will figure it out.

The weekend is crammed with fun stuff and the weather is looking good. Whilst Bear is out I am pampering and preening myself… Now for a cheeky glass of something cold.

Have a great weekend all!