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Progress for radiotherapy...

by Claire29. October 2014 13:05

 

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

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

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

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

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

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

We waited and decided whatever the outcome we wouldn’t be going home without the mask being made.

The nurse walked in and said that Dr Oliveros had decided giving me twice the dose over a period of five days would be just as good. What? Wow! This was even better than I expected. I didn’t want to go hospital for ten days anyway being trapped under the mask.. This was a right bonus!


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

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

                                                   

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

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

I am not sure how quickly hair falls out with radiotherapy but I guess I will find out soon enough! If at all...

So tomorrow it starts... I feel quite high spirited. I am feeling pretty well.

Let’s keep that going...

X

 

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Triple Negative

A proper update....

by Claire27. October 2014 12:15

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

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Triple Negative

This is Bear.....

by Claire20. October 2014 18:20
Hi this is Bear,
 
I started writing this as an email to Tom, whose loved one is a survivor, but as Claire is feeling a bit under the weather I thought I would step in and make it a blog for all the Bears. Husbands, lovers, brothers, sisters, children and friends who are helping a brave lady through this terrible time in their lives.
 
And there it is. The first thing to point out,  we always say “terrible time”, but the most important thing is to make it the greatest time, none of us know how long we may be given on the earth and we are all, after all “terminal”. So Claire and I have tried in everything, to make the demands of canSer fun and exciting but I feel that the best advice I could give, is to look at life within simple elements.
 
The most important thing is to have a plan. We created the ten point plan on day 3 of diagnosis and so far although the components have changed the plan is still the same (http://www.triplenegative.co.uk/tenpointplan.aspx ). Having a plan gives you strength and helps to adjust as better treatments evolve.
 
Then you have to LIVE. It can be easy for canSer to consume. For every thought and action to be related to the disease. Whilst you are fighting, you have life and the opportunity to do what you can to make sure that you drain every drop from that life. Leave no regrets and live with canSer as a perceived issue don’t live a life of canSer.
 
Live in gratitude for all things. I know that platitudes are painful, but we both truly believe that life is not measured by the breaths you take but the moments that take your breath away. We have been so blessed, in love and friendship, in the opportunities we have had and the life we have been able to live. Things that for many who live until 90 will never be achievable. Every breath of wind on a sunny day, the kindness we see around us, all of these things help us to face every day with love and light.
 
And finally – don’t compare. Never look at statistics they mean nothing. If 1 person out of 100 survives then that is 100% survival for that person. Be that person. canSer is the disease, which we try and classify, but we should be looking at every patient and as far as I know everyone is different -so never compare.
 
I hope that in some small way this helps. I wish you all love and never forget that we are million strong and that the medical world is changing quickly. In as little as two years we could have a cure – let’s all make sure we are here to see that day.
 
Bear
 

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Triple Negative

Off again...

by Claire14. October 2014 11:08

 

I haven’t been ignoring you but I have been having fun... again. Even amidst all the drama we have plans and I aim to keep hold of those for as long as I can.

Pete and I had planned to visit friends in Ireland this weekend and the booking had been in place for months. I was worried that things would clash but even if they did i would’ve moved them in order to visit our dear friends.

Pete and I had a long weekend in Cork and were treated like royalty. We laughed, danced, ate (a lot) and drank...Each day was different and on Sunday we drove to the beautiful Inchydoney beach and stayed at the beautiful spa there. Oh it was blissful. Yesterday we flew home and as ever reluctantly said goodbye to our wonderful friends.

Friday morning whilst at the airport over breakfast Pete and I got chatting about what to do next. I had already been in contact with Professor Vogl in Frankfurt regarding having TACE. It had been pencilled in for Wednesday 15th, tomorrow. I wanted Pete to email as he is German and to tell him it wouldn’t be feasible because of timings etc, but having spoken to my friends last week and also because I am acutely aware that I really need to get some treatment started Pete said we must go.

He checked with his work diary and made so many changes and that was it I started booking the Eurotunnel and hotels. Emails exchanged between Pete and Prof Vogl and we have agreed that I will be there tomorrow morning at 7am to see him and have treatment that same day.

Right... it’s all a whirlwind and whilst I have an hour before we leave I decided to update the blog.

I feel really weird right now. I have been contacting many clinics and having many email exchanges and I believe that whilst I can I should. The worry of logistics and money are always there and the upset this is causing Pete really worries me. I wish it was different but I have to try. Things will fall into place.

So this is how it stands. Today we leave and drive to Frankfurt. Tomorrow morning I have TACE then we drive to Belgium for an overnight before driving back to the Eurotunnel to get back to the UK.

 

Friday I have booked to see Dr Julian Kenyon on the referral of Dr Nesselhut to discuss Photodynamic therapy. We have heard a lot about and my pal Peter Trayhurn had good results in his lungs with this treatment. I think it is definitely worth a consultation. Julian actually said to get an appointment for Friday, on his day off to get this sorted. I called this morning and have booked for 11am in Twyford.

Next Monday I have an appointment at the Churchill hospital to have glomerular filtration rate which is apparently to see the functioning of my kidneys. Eh? I contacted the secretaries at the hospital who told me this in preparation for having the carboplatin chemo on the NHS. OK right. Well I will go for that even if I won’t be starting that imminently. I am booked and have signed the consent for carboplatin and gemcetibine chemo but I may postpone for a few weeks.

At the beginning of November I have DC therapy booked at Doc Nesselhuts and may also squeeze in more TACE with Prof Vogl AND even have insulin potentiation therapy with Dr Seibenhuner. I have emailed Dr Seibenhuners clinic to find out more but as yet haven’t had a reply.

After that I may decide to go for NHS chemo. I think it could be a good way to go for a short while...

Next Wednesday i am booked for the immunotherapy vaccine at the London Clinic and think it could be good to still give that a go.. Another hole in my arm but what the heck. On that same day I am also booked at another clinic in London to have a discussion about having Mebendazole prescribed.

It all sounds mad but maybe this combination could be good.

I am still waiting for a reply from St Barts but just now had an email from the secretary at the Churchill hospital who says she had a contact at the gamma knife department at St Barts who says they will be in contact soon. Not soon enough for my liking... get these buggers out of my head!

I feel actually a lot better in many ways but worse in others. Over the weekend my cough was annoying to say the least but then it turned into an actual infection on Sunday night. I actually feel better coughing up phlegm than I do just having a dry cough.

I feel less sketchy than in my head. I definitely felt like I had cognitive difficulties the week before but now I have clarity and can think of what I want to say. I am a little dazed with the steroids I take but I am managing them well. I will soon change the dose again as suggested by Dr Oliveros.

So that’s where we are. By the end of this week Pete and I will need to catch up on Strictly Come Dancing and The X factor and hopefully normality will resume... sort of. For Pete this is a nightmare. We are creatures of habit and nothing feels right. All we have is each other but with me having symptoms and feeling constantly emotional it is the hardest thing for him to deal.

Tempers flare and emotions pour... I find it hard not feel guilty and wish that every day could be different. I can’t and I refuse now to try to change that. I have to do this and try. I can still be canSer free and I just want to prove that.

 

I have taken the big job of contacting all my current clients that are booked in my diary and have told them honestly that i will not be working. My job is to get better and when I get more time at home I will return to exercise and more meditation. I long to feel well and eat better and live cleanly. I am not moaning about the food I have been eating recently. I feel nourished and actually have a huge appetite which I think is great. I put on 3 pounds over the weekend and I don’t care!

I have tried to balance my diet this morning by having a veggie smoothie, an alkalising lemon drink and bravo probiotics yoghurt with fruits. A good start I think!

My bags are packed and my kitty is being cared for by wonderful friend Sarah once again. I don't know what I would do without her. Hopefully everything will go smoothly over the next few days...It’s going to be an experience that’s for sure...

I’ll keep everyone updated.

Light and Love. XX

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Triple Negative

Good news re gamma knife and now the next step...

by Claire9. October 2014 17:22

I waited patiently Tuesday with no reply from Dr Oliveros regarding the result of the MDT in London. That was a first for me! By Wednesday I was getting a little worried but for once didn't feel the need to hound the department. 

My patience paid off as I got the call I was waiting for. Dr Oliveros said that Dr Plummer at St Bart's had agreed to give me the gamma knife treatment under the NHS! Result!

She said that my notes were being sent over to him and I should hear from him within two weeks... Two weeks? Ok not to panic. I kinda thought I would be hearing sooner than that. She said if I hadn't heard by then to contact her and she will chase up.

 

We discussed  the steroids I am taking and she said I could reduce right down after five days.. Good. I feel very bizarre on them. Or maybe it's the concoction of codeine, paracetemol and steroids. The cough is my main annoyance at the moment. 

She asked how my appointment went with Prof Harris and she could see that I had consented to chemo. 

She seems like a really nice doctor. 

What she doesn't know is that in the meantime another canSer friend has emailed me and told me about nano knife. A private treatment available here in the UK. My friend had given me the contact details and I didn't hesitate to call. The secretary adviced me to get a copy of my report and send to Professor Leen at the Princess Grace hospital so she could show him before he goes on holiday.

Last night I had a Skype chat with some friends from New Zealand who now live in Frankfurt. They gave me invaluable advice on treatments such as TACE as well as advising me on IPT with a Dr Seibenhuner. It seems quite intense but if I can coordinate everything it could be a really great way to 'go hard' combining all treatments including DC therapy with Dr Nesselhut. I feel very lucky but now have to try to coordinate as much as possible in the diary.They advised me that combining such things as radiation with other treatments releases antigens and can work synergistically.

Dr Nesselhut mentioned having PDT- photodynamic therapy and mentioned contacting Julian Kenyon here in the UK. I have done that today. It's all worth investigating.

So now it's back to waiting but also deciding our next step. I won't rule out chemo as I am better off having something that I know could mop up the cells. I just want to consider the side effects such as numbness in my hands.

 So that's the update for now.... 

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Triple Negative

Good news re gamma knife and now the next step...

by Claire9. October 2014 17:22

I waited patiently Tuesday with no reply from Dr Oliveros regarding the result of the MDT in London. That was a first for me! By Wednesday I was getting a little worried but for once didn't feel the need to hound the department. 

My patience paid off as I got the call I was waiting for. Dr Oliveros said that Dr Plummer at St Bart's had agreed to give me the gamma knife treatment under the NHS! Result!

She said that my notes were being sent over to him and I should hear from him within two weeks... Two weeks? Ok not to panic. I kinda thought I would be hearing sooner than that. She said if I hadn't heard by then to contact her and she will chase up.

 

We discussed  the steroids I am taking and she said I could reduce right down after five days.. Good. I feel very bizarre on them. Or maybe it's the concoction of codeine, paracetemol and steroids. The cough is my main annoyance at the moment. 

She asked how my appointment went with Prof Harris and she could see that I had consented to chemo. 

She seems like a really nice doctor. 

What she doesn't know is that in the meantime another canSer friend has emailed me and told me about nano knife. A private treatment available here in the UK. My friend had given me the contact details and I didn't hesitate to call. The secretary adviced me to get a copy of my report and send to Professor Leen at the Princess Grace hospital so she could show him before he goes on holiday.

Last night I had a Skype chat with some friends from New Zealand who now live in Frankfurt. They gave me invaluable advice on treatments such as TACE as well as advising me on IPT with a Dr Seibenhuner. It seems quite intense but if I can coordinate everything it could be a really great way to 'go hard' combining all treatments including DC therapy with Dr Nesselhut. I feel very lucky but now have to try to coordinate as much as possible in the diary.They advised me that combining such things as radiation with other treatments releases antigens and can work synergistically.

Dr Nesselhut mentioned having PDT- photodynamic therapy and mentioned contacting Julian Kenyon here in the UK. I have done that today. It's all worth investigating.

So now it's back to waiting but also deciding our next step. I won't rule out chemo as I am better off having something that I know could mop up the cells. I just want to consider the side effects such as numbness in my hands.

 

So so that the update for now.... 

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Triple Negative

I didn't win the lottery.... No surprise there then!

by Claire7. October 2014 16:54

 

I didn’t win the lottery....No surprise there then. My luck hasn’t changed. Or has it?

It has been a weekend of tears, and love and support and so many emotions I don’t no where to begin. Pete and I decided that we would have a weekend of not getting out of bed. That lasted all of about 2 minutes. As usual we couldn’t help ourselves especially as the weather ended up being really lovely and I always feel that we should at least get out in the day light whilst the weather permits. We did have plenty of time to relax and although sleep was a bit a hit and miss we both felt relaxed. I had one good night one bad but I was pleased that I got any. I have been walking around in a blur. Now this could be down to the fact I am on a cocktail of steroids and also codeine, in the hope that my headaches will pass as well as the cough. Interestingly the cough is annoying me more.

This morning Pete and I went to the hospital this time to collect my CT scan results. As Pete called it, Part Deux.

I don’t know how I thought it would go but I didn’t have any feelings either way about it. I think that I thought things couldn’t really get any worse. And they haven’t really.

The good news is there are no new ones in my bones or abdomen and that the ones that are in my lymph nodes and lungs are actually a mixed bag.

The ones that have been blasted with radiofrequency have actually got smaller and that seems to be looking good.

The ones in my left lung have stayed the same.

Then there are new ones appearing albeit very small in my lung. There is also pericardial effusion around my heart.

The right hilar lymph node is necrotic but they cannot tell if that is because it is growing quickly. In fact all of the ones in my lymph nodes are a bit bigger.

Prof Harris has suggested that I get the gamma knife treatment all sorted and then that should make that better. There is of course no way of knowing if that means they won’t come back but he suspects we can keep on top of it. He does think we should opt for a systemic treatment like chemo but he said is up to me. He suggested getting started on something like carboplatin and gemcetibine and we thought starting the consent forms was the best way to go especially as it will take about three weeks to organise and by then my brain treatment should be sorted.

 

In the meantime Pete and I already have a plan hatched to go to Frankfurt for TACE by Prof Vogl. Since getting home I have had a stream of emails from my Europeans friends and they have been advising me that timing it with treatments to Dr Nesselhut would be highly synergistic as well combining it with insulin potentiated therapy. I think this could be a really good route to take. We just need to organise that now too.

As expected I am still waiting for results from the MDT that occurred today at St Barts. We told Prof Harris that Dr Oliveros had said we can only have it done if there are three tumours of less. He couldn’t believe it. Prof Harris has changed and I believe it is because he has seen so many changes in the cancer world. He is so much more open and friendly now too.

As much as I don’t relish going on chemo it is definitely something I would do but I will lean for TACE first. I don’t want to spend any more money but I do want to try other things and I do want to give it my all.

I am bit disappointed that I haven’t yet had a call but I trust that Dr Oliveros will call when the time is right.

I suggested to Prof Harris about a trial that is happening at St Bart’s that my friend has told me about. It is using immunotherapy and has been raved about apparently. He thinks I won’t be able to get on it because I have already had immunotherapy but he said it is worth a try.

I think I will continue with the immunotherapy at the London Clinic. I still think that things are going well in that department. The thing is if these brain tumours hadn't appeared it would still be going in the right direction... sort of...

I have been cancelling clients today and been making a plan for taking more time for myself... The thing is until I get an answer from Dr Oliveros I still feel aloof.

 I felt really loved today at hospital. Pete was surprised at what staff in the pharmacy and the nurses who work with Prof Harris were all like with me. The thing is I have been going there a long time. They all bent backwards for me and made my life as easy as possible. I am feeling really loved.

 

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Triple Negative

Boo... brain tumours...

by Claire3. October 2014 16:42

 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!

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Triple Negative

Headaches.....

by Claire1. October 2014 13:09

 

Today is the dreaded MRI and CT scan. Why dreaded? Well it’s obvious really...

I won't know the results for a few weeks but right now all I can think is, ‘Please, make this bloody headache go away!’ I am not so concerned about the cough, although maybe I should but I never expected to come back from my holidays feeling worse than when I went away.

All I keep thinking is that it could be anything. Headaches are caused by so many factors and this one keeps changing from the side of the head to on top of the head and so on.

I’d really like to know how to nip it in the bud....

The next two weeks are going to be long but onwards and upwards and if I can shake off this drowning feeling then all will be well.

X

 

 

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Triple Negative

Better when I am not thinking about it....

by Claire29. September 2014 13:42

 

It’s been an up and downy few days. Ever since I got back I have continued to have head aches and whilst I don’t think there is anything serious to worry about I had to mention them to my oncologist.

I also mentioned this cough of mine. Prof Harris doesn’t think there is anything sinister in the cough but as expected says I have to bring my CT scan forward AND have an MRI scan. Boo!

I absolutely hate having MRI scans, mainly because I feel claustrophobic in the noisy tube. I know it’s not rational but then maybe it isn’t the fact that i am having a scan that scares me.

I completely understand why i have to have an MRI, I just don’t relish it.  Best to be sure though.

Saturday was a lovely day. I spent the day in London with my old school friend. We relaxed, had spa treatments and then went for a lovely lunch. Plans are already being made for the next trip...All the while I was there Pete slaved in the kitchen making foods that I can snack on and that are full of antioxidants. Love him.

 

I am struggling at the moment with letting you know how I am feeling. I feel confused. I feel so up and down that I don’t know myself. One moment I am feeling great, the next I feel rubbish, mostly I am feeling rubbish. I hate having nothing to report because I am so self involved and all consumed with myself. I want to be full of energy and loving life. And I do to some extent but when you have niggly little ailments such as headaches, they can really bring you down.

I go to bed with a headache, and then I wake up having visuals, the start of a migraine. I cannot explain it. I have back pain where I feel the headache is resonating from. It could be absolutely anything that’s causing it. Who knows what I am having pumped into my body? All I know is that once I have the scan results if it’s not the worst, then it can only get better.

I am better when I am not thinking about things. I am still struggling taking my meds and supps and I am really finding it hard to focus on the big things. They are more important to me than anything else. I just need to remember that.

 

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Triple Negative

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