A proper update….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

 

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

 

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

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

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

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

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

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

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

Thank you will never be enough…….XX

This is Bear…..

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 

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!

Headaches…..

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