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

When God was giving out patience I must have missed my place in the queue whilst going for a wee!

I had a CT scan today. The purpose of this was ‘ to see how big the cancer has got’.  I have to admit I have been dreading it.. well more so the results. In my head I believe there isn’t anything in there especially as I feel so well. The consultant wants to know what we are dealing with when we decide the next move from the NHS. I won’t be getting the results for weeks. The best I can hope for is that it hasn’t grown much. I have to be patient and as good friend told me when God was giving out patience I must have missed my place in the queue whilst going for a wee! 🙂 ha ha!

I also had a call today from a clinical trials doctor from the Churchill hospital. He said he had results for me from the tests that they have done on my tumour which they removed in February. They were looking for common mutations  for example one called PIK338 mutation which is one of the ways in which cancer gets activated and BRAF mutationwhich can be a way that drives the cancer. The results say that my tumour doesn’t have any mutations. That means the trials they thought I may be eligible for, I now am not. So that leads them onto another trial. It comprises of combining two well known chemotherapy drugs used at the same time as well using a new drug which is essentially the trial. He called it a ‘facing’ study. I asked if they could trial it on the tumour instead of on me, to see if would respond. The doctor told me that it isn’t possible as the results would be false as the cancer reacts differently outside of the body as it would inside. The trial would mean lots of tests and having to visit them weekly and then having one of the chemo drugs every three weeks intravenously, then having the other chemo drug by tablet 2 weeks out of 3, then having the new drug on top of that. I asked how many other people hvae embarked on the trial so far.. 5 nationwide…….. all with different cancers. Ok, right now this isn’t seeming too exciting nor appealing. But I will go to the hospital to meet them on Thursday to get the information sheet.

This evening my hubby is working his magic in the kitchen. He is getting to grips with the vegan diet and ingredients. Tonights ingredient- Quinoa. Mmmm smells good!

Who IS Maria?

I spent most of yesterday feeling dread and sick to the stomach. My mind was running away with me and I couldn’t calm myself down. Bear called me from the car and told me that everything was going to be ok that it is unlikely the canSer has spread because I feel so well.

I felt delirious due to lack of sleep so by the time they came to take me to ct by wheelchair I could fall asleep sitting up.

I waited an hour for a ct and one by one the staff that would be assisting came and introduced themselves. Two nurses, about three radiologists, two anaesthetists, the doc who would be performing the procedure plus his supporting staff.. It was like a party. They all got together for a group hug and discussed me whilst I lay there on the bed waiting for the preliminary ct scan. It was very surreal.

The lovely anaesthetist came and said we would start by giving me something to relax… It was the best I felt all day. I felt really happy and so chilled.. Thank goodness. I was petrified before.  Then she said it was time for my ‘gin and tonic’. She blasted me with the good stuff and I was given oxygen to breathe deeply.  That’s all I could remember until I woke to hearing Dr Gonsalves voice in the recovery room telling me that everything went really well and that I didn’t get a pneumothorax! Yay! No chest drain and that means I can go home today!

I felt really woosy for about four or five hours and when transferred to the ward I didn’t have any pain and moved myself from the trolley to my own bed myself.

I had ablation done in two places and the entry nicks are placed one on my chest and two on my back.

I was on the ward for about ten minutes when my Bear arrived. Thank goodness. He went hunting and gathering because yet again I had missed dinner. He returned with plenty of food and despite not really wanting it I ate the lot!

The England football match kept me occupied for the evening and despite the disappointing result I was in quite high spirits.

I so wanted to have a good nights sleep but sadly this was not to happen. I got about three hours before the two old ladies next to and across from me starting calling out, banging tables, trying to get out of bed and shouting for Maria.. Who is Maria?

I have to laugh or else I’d cry but the highlight of my night was the lady next to me asked if she was here because she had murdered someone?! She said this was not the first time she had been kidnapped. Pahaha.

I did drop off again but then the nurses decided to wake me up….urgh.

Thankfully I didn’t experience any pain during the night and I had a shower to clean the pen marks and blood off me.

On my return the doctor arrived and said I could remove the plasters as the nicks are really tiny and will heal much better being uncovered.

He enthused as to how well it went. He said the top tumour really got it. They could really ablate that one. The one lower down at the back was very close to the lung wall and he didn’t want to blast that one as much because burning the lung wall really hurts and causes more infection.

I am booked for a ct scan this morning to see how things are in there as they can’t really tell whilst doing the procedure. All being well, and it’s highly likely then I can go home today! Whoop!

I told him that Pete is at an event in London all day so it would be much later that I will be picked up. He said in that case in between his appointment today he will aim to come up and tell me the results rather than email them to me.

Ordinarily they would do follow up ct scans but as this is being led by Prof Dalgliesh he asked what happens next? I said I have no idea but I guess I will email the prof and go from there.

To be honest I think it is up to me what happens next. I want more of the tumours ablated! Let’s blast the little buggers… Hopefully the immunotherapy jabs will now mop up the rest of the tumours and the immune response will be great.

So that’s that… I’m nearly at the end of this little episode and I can’t wait to get home.

Although feeling generally well I think I could sleep for a week. Being ever the optimist I have booked my week full of clients. Pete said I’m mad and that right now I need to ensure I don’t get any infections. Being in close contact with lots of people isn’t wise. You know what? I think he is right -again. I could really do with some down time. It’s surprising how stress full all of this is on the body and soul.

I can’t wait to go home though because I am seeing my lovely beasties for a belated birthday get together. And before anyone curses me and thinks its a bad idea, I think it will do me the world of good. I need laughs and love for the soul. I don’t have to overdo it. I can sit back and take it all in. The banter, the fun and of course the love.

Fingers crossed I get out of here today.

Xx

Today is the day….

Today is the day… For my next CT scan. I have been remarkably calm probably because I have been so busy I haven’t had time to worry. But now I am about to go out for a few hours I have to wait till 4pm on a Friday afternoon to have the said scan. I have to admit I am no a little jittery. I don’t really know why as I won’t be getting the results until the 11th Feb! This is only due to the fact I am away for a full week. So really there is nothing to be worried about at all today. It’s not as if my life changes today but I guess I know that as a result of today’s scan my life is going to change. Well if I let it. I am ever hopeful and really have a good feeling but I can’t help that niggling feeling in the pit of my tummy that throws doubt up in the air.

I have had the pleasure of sharing info with my TNBC friend and it feels good to know we have each other’s back. That’s what is great about these kinds of networks. But this time it feels like I really have a confidante. We are so similar and our drive to survive is the same. Lots of new information is feeding forth between us and new doctors and trial names are filtering through. It’s great having a new set of eyes on the subject. It’s amazing what one person can find that I never ever heard of!

Maybe I am also a little floopy as we are leaving tomorrow. I always get a bit nervous. I am anxious of making it to the airport on time, will the flight leave ok or will the weather have an adverse effect on the travelling? Will our transfer be ok, will the hotel be alright? It’s so silly but I will never be calm about travel. I guess it’s because I have no control over it.

I am going for reflexology soon. I haven’t had one in nearly two months so I am really looking forward to it but I am anxious that being Friday afternoon will the traffic from there to the hospital be awful and hold me up… Again there is no point anticipating what I cannot control.  I am thinking of every possible route to get me there with very little trouble. Maybe doing a coffee enema this morning hasn’t helped me feel calm. I feel jittery. Initially I felt vibrant dancing around the kitchen but now I am simply just strung out! Argh! Ha ha…

Chill Winston. ….

Right I best have a calming cuppa and then get on my way to an eventful afternoon. Bye!

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

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.

I have my moon boots on and ready to go and see the dietician…

 

Yesterday was good day. I have been looking forward to reflexology for weeks and finally today was the day. I just love it. I feel great during and after. Claire, the reflexologist, said that despite canSer everything looks and feels fine, which she said is unusual with someone having chemo as they tend to feel damp. During the treatment I had a little visualisation of me and the Bear being old and grey and together. That’s the first time I think I have ever done that. It gave me a bit of hope and certainly shows that I have the will to live.

As I still hadn’t had a reply from Prof Dalgliesh re the scan reports I decided to give Kathleen, his secretary, a call, it turns out he is in the US and he has been trying to get hold of the radiologist who is on paternity leave. It’s a shame they are not ready as I am going to be going to the London Oncology Clinic today for an appointment with the dietician and could have collected them.

I received a letter today with an appointment for a CT scan on it for next week, the day after I return from Germany having had my next round of dendritic cell therapy. Clever as Pete is he said that I should contact the docs in Germany to see if it is too soon to have a scan after the cells being injected into men after all, I don’t want to waste that treatment considering the cost and effort and all. I was a bit worried about changing the scan date mainly due to the fact that I don’t want to have a confrontation with the NHS docs. They already think I am wasting my time and money but I think the decision is right. But by the time I can have another appointment due to being away will be the 11th February. That will be about 8 weeks since my last one. I know the NHS are keen to see how I am doing sooner rather than later so if it isn’t going well they can slam Taxol intravenously into me. I understand and I want to know too, part of me does anyway. I do think only giving the chemo one month is a bit short but at the same time I really don’t want to let the canSer get out of control. (However I still believe the canSer is under control I just hope I am not in denial about it all.)

I have this morning called the radiology department who have said that I must have the appointment but I said I was out of the country. They have asked me to contact my doctor to discuss. I have sent an email to the secretary to see what should happen; however I doubt I will get a reply what with everyone being off work due to the snow.

I hate feeling uncomfortable about all this. I know it’s a no brainer. If I have made the decision to have DC therapy then I really shouldn’t have a scan to give the little boys a chance to do their thang. I also think that by February I would have been using Naltrexone for about two months or more. I really believe that will have a profound effect on my immunity.

Any way back to today. It’s snowing. Just like being in Austria. I love it! But the country doesn’t. Everything stops. But we shall not! We are off to see the dietician recommended by Professor Dalgiesh to ensure I am taking the right stuff and maybe learn something from her. I have called and apparently she is there so that’s a good start. Not long till Pete gets back and we get on a slow drive to the capital.

 

Whilst at reflexology yesterday Claire Winter told me about how a study had shown that artificial light increased or even caused breast cancer. Another thing. But in the nature of research here is an article on it;

http://www.dailymail.co.uk/health/article-2163199/Too-light-night-bad-health.html

I have my moon boots on and I am ready to go…

P.S Had a message from a follower to say I look great in the photos for Nicola Jane mastectomy lingerie. I haven’t seen them! Argh.. Too exciting.

 

Professor Dalgliesh’s opinion….

So on with today.. I got up feeling distressed and still can’t shift the thought of the growing of  the  canSer and all the words that keep going round in my head is ‘that it isn’t working..’

 

Pete wants to bash his head against the wall. I don’t blame him. I do trust what he says and he says that the lymph node is only bigger because of the dendritic cells that Prof Harris is wrong.

 

I do believe him but once someone says something so demolishing it’d hard to shake it off. For me the proof is in the pudding. I desperately want the canSer to go into remission.

 

Anyway we had a day together today. We had thought we may have an afternoon of fluffing and having a cheeky day off in London seeing the Christmas lights but what in fact did happened was that Pete went for a long overdue medical and I called Professor Dalgliesh. He was unavailable but I luckily got an appointment to see him at 5.30pm.

 

Pete’s appointment took until lunchtime and then we decided to get some lunch and have a chat and visit Winter Wonderland! Brilliant that really cheered me up. In true German style the Beer hall had a German singer which was highly entertaining.

 

Off to Prof Dalgliesh. We discussed everything with him and he said that he would happily contact Dr Nesselhut and arrange the next step with him, he is going to organise for me to see the nutritionist there to make sure I am doing everything properly and said that if I get the scans to him that he will get full reports on them as he agreed there wasn’t enough on there.

 

I had taken my CT scan disc with me and he seemed keen to have a look. That’s the difference is that he actually wanted to see what was on there. He said that it is all very small as too is the fluid round my heart. He thinks the lymph node which is the biggest one looks as if it is going necrotic and that it is likely inflamed from the dendritic cell treatment. He said that my body could be taking longer to react to the vaccines. Regarding chemo, he thinks capecitibine could be really good to take as it will systolically select which cells to attack and the dendritic cells will not be attacked. Now that I have had four vaccines he thinks the chemo will more effective. Also as it is an oral drug if I do not like it then I can stop taking it or reduce the dosage.

 

All in all a great outcome. I feel better knowing there is a plan and the Prof Dalgliesh is helping me hugely. I am still unhappy with the growth and I am so not happy about taking chemo.

 

A good day…

Move onto the next chapter and hope the little cells get with the program a little quicker please!

So today was the day for my CT scan results. I wasn’t overly looking forward to it but I think I have handled the last week quite well. I have been optimistic and felt pretty relaxed especially over the weekend.

I met Pete there and as I had been warned the hospital was ultra busy to the point where I couldn’t get parking…Then on entering the clinic we were greeted with a minimum of two hours waiting. Tha’ts not me moaning but setting the scene. We actually visited Ray during that time as he has been there since last week.

Then approaching the time I got nervous. I had a ‘good feeling’ all day today and we had received so many messages from friends saying they had too.

Professor Harris stormed in like a whirlwind as usual but was less friendly this time. He seemed to ask lots of questions about when we last saw him and he flicked through notes. He asked why hadn’t I seen him sooner? We explained that the DC therapy was for four montths and that I hadn’t had any symptoms. He didn’t ask me how I was so I didn’t get to tell him that I that the feeling has returned in my hands and feet and that I am now having periods.

Then he blurted out that the scan says I have further progrssion of the disease. As usual the scan report was all of about 4 lines. Very brief in detail and only highlighting the odd node that caught their attention. There was no mention of any nodes having gotten smaller or gone and no mention of how many there are. Only the mention that the nodes have progressed in size and that there is one that has increased from 7mm by 7mm to 23mm by 16mm. The other increases are all a bit vague and when asking for specifics we were told that they couldn’t give us that info without looking at the scan.

OK at this point I had a hot flush of adrenalin and felt quite sick and red in the face. Pete didn’t look great either. Prof Harris just bombarded me with the fact I have to start chemo right away and told me of two drugs; Taxol and Capecitebine. One is by injection the other by tablet. I asked what they do and how long would I need to be one them? He said that they could stop growth or even regress the disease. He then said you can’t be cured. Luckily I had already been told that but what if I hadn’t? What a way to tell me! I felt like saying, ‘Thanks for that gem of information’. It’s like they stab me every time they something so bluntly. I imagine a cartoon when a fox looks at the bird and all he sees is a cooked chicken. To me all they see is a disease, not a person with feelings who is scared to death of getting ill and dying way before their time.

I advised him that we are going on holiday and no I cannot cancel it. He said let’s just get some drugs inside you as soon as possible then, so wants me to start taking the tablets tomorrow. I asked when will we know if it’s working and he said in about 6 weeks when I am to have another scan.

Pete looked at the scan and said, ‘There is good news though? Some of the nodes haven’t been mentioned so that must mean they haven’t changed or better still gone. Would that be reported?’ Prof said ‘No’ They just focus on what has progressed.  There is mention of pericardial effusion which is fluid round my heart. Not much to be told here other than that could indicate my lymph nodes not working properly and if it got much worse then I may need to have it removed or my heart won’t work properly. But seeing as I don’t get out of breath then at the moment it’s not affecting me! Also Pete mentioned the fact that the report did say it hasn’t gone to my liver or bones. Prof said ‘Yes that is good news I guess.’ He then blustered out of the room and went on his way. Ten minutes.

I was left spinning. My heart sank like a lead balloon. So much for me being intuitive. I’m not being down on the NHS or the way I percieve my treatment to be and I normally really like Prof harris but today I felt like he wanted to prove to me that I was wrong with the DC therapy and that I will die unless I do what he suggests. I get the feeling that he really didn’t like us going somewhere else for treatment or advice. I don’t like being made to feel this way.

Right now I can honestly say I want to tranfer hospitals or send Pete to get my results so he can digest the info and give me the actual story rather than a bleak outlook that makes me want to come home and go to bed and never get up again.

As we left obviously I was upset because I really felt I needed a lift, a sign of the disease going, not to be told ‘Oh my god you better get some chemo in you or else’. Pete sat me down and hugged me and in true Pete style got out a piece of paper and we discussed the report based on the info we had from the last one back in August.

 

Things they didn’t focus on must mean it hasn’t changed or could infact mean it has gone. They never mentioned the necrotic node. Is it still there or has it infact gone? The report mentions that the pulmonary metastases have progressed but only mentions the one big node that in my last scan had doubled in size from 6mm to 11mm in 6 weeks. This time it has only increased from 11mm to 14mm. That means that growth has slowed down. It has only increased by approximately 26%. Surely that is positive? It says that right hilar region nodes have increased slightly but it’s only progressive is when it is 30% or more. And there is no canSer in the liver or bones. There is no mention if any have actually gone completely. So infact there is one they have mentioned that has changed significantly but as Pete points out what if that is being blitzed by my dendritic cells which is why it is bigger?

 

He is so sure that things are changing for the better, that I must battle on and that chemo was never ruled out, infact it has always been a part of the plan. I find it hard to get my head round. How can having chemo which kills every cells in the body do any good when I am trying to build my immunity and fight the canSer?

We have decided to get a copy of the scan and actually get a detailed review of each and every node and canSerous tumour. I need to know if there have been any changes- like some dying, getting smaller and where they are located. I am guessing this will need to be paid for.

 

I came home in a state. It’s like being told you have canSer for the first time all over again. Maybe I was being silly having high hopes but Pete says they are good results- if you don’t focus on that one that has gotten really large. It’s called ‘stable’ if there is 25% or less growth. I want more than that. I want it to regress completely.

So since then I have had a little cry (well a big one actually), thought the worst, then dusted myself off and got on with the ironing. I so wanted to blog today some brilliant news. But not this time.. Sorry. Next time. 🙂

I’ve already started getting neurotic and think that every feeling I have is a symptom of canSer. The power of the mind eh? I think if I had a clearer picture with what I am working with then I could focus more. If I am plucking them off one by one then great. At least I am progessing with my battle. But you are not told that. I wish so much to be better, to get up and not to think how lucky I am but to have an off day sometimes. But because I do feel like I have to make the best of every day I don’t want to waste what I have got. It goes back to living every day as if it’s your last because you never know what’s going to happen. The way I see it is that in 5 months I haven’t had any symptoms surely if it is as bad as they say I would have by now?

I want to be a miracle. I want to be more than a survivor. I want to show people it doesn’t have to get you down and I don’t want to lose this battle. It’s not fair on everyone involved. I want Pete not to have to worry about losing me and most of all I don’t want to leave him without ME! It’s all about me. ha ha! Actually that would be lovely. For it not to be about me anymore. I am fed up with talking about myself! 🙂

Anyway shut it out, move on to the next chapter and hope the little cells inside me get with the program a little quicker please!

I’m going to have night of cuddles.. No change there then!

Night! Love you. X

 

The injection of iodine feels like you have wet yourself!

I was up bright and early this morning to get the the hospital in time for my CT scan at 9am. I felt prepared or as I coudl be. I had strength in numbers and had called upon everyone last night and this morning to give me some last minute positive vibes.

Lyn, my healer did some distnace healing last night and Pete and I did our own too. I have to admit I felt a bit shaky last night. Not sure whether it was from the healing but when he cuddled me he said I was roasting hot.

We live in such a lovely village and we are so lucky that at night when we look outside there isn;t any light pollution to obstruct our view of the moon and the stars on a clear night. Last night was one of them and it was so beautiful. Now call it a sign or just to appreciate the Universe but I saw a shooting star! I don’t ever remember seeing one and I had to double take to ensure it wasn’t a firework. Nope it was defo a shooting star… 🙂

The CT scan went very quickly. The injection of iodine before they take the images is always weird as it heats your body up and you get a sensation of having wet yourself. I know, classy… Unlike rebounding it is just a sensation and I hadn’t actually wet my pants! ha ha!

When I came out of the hospital I had loads of messages from my friends and family wishing me well and sending their thoughts. I could feel them.I’m sure of that.

As the day has been disjointed I am not exercising today but getting on with sending our Christmas wishes by email and post. I have taken a stock check of the pressies already bought and I have an action plan for the ones that have not been complete as yet. That’s my mission for this week I think. get them all wrapped and under the tree.

I have decided not to worry about the results of the scan due in a week from now. I can’t change anything and it won’t help to worry so I am going to have a really good week of lots laughs and love. I reckon a week of Christmas rom-coms is in order.. a bit of Jude in The Holiday does the trick (eh girls?) or even my favourite movie, Love Actually. I have a lot to look forward to this week and my Bear is being ultra cute. It’s all building up in the ‘kitty bank’. No snuffle goes un-noticed!

So I will spend my time doing nice things and thinking about food as usual! Life goes on.. and as long as we enjoy today then tomorrow is a Brucie bonus!

Light n Love. X