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One small one still in there.....

by Claire22. April 2015 16:05

 

Monday morning I had a call from Liz the CNS at St Barts. She said that they had checked out my images and that they can confirm there is a small tumour that requires blasting. She then paused.... I told her I wasn’t surprised because I saw Doc Plowman on Friday and he suspected something but couldn’t be sure. She said the date I was pencilled in for, Friday 27th, for gamma knife now couldn’t be done because the doc had other arrangements. Fine. She said that someone would be in touch in a few days to give me a new date.

I told her of dates I wasn’t available later in May but she said she believes they will want to do the procedure earlier than that. Right... all systems go. So far I haven’t heard anything so i will wait until Friday and then email Liz to get her to chase it.

I am obviously pleased that I am going to get the treatment necessary and that it will finally be gone but I am of course disappointed that there is one there and that I have to go through the treatment. The whole thought of having my head clamped with some sort of frame and them having to inject anaesthetic into my head doesn’t fill me with joy. But it is a day treatment and I should be able to go home that day and be absolutely fine. I hope.

I have been loving the warm sunny weather a little too much. I don’t want to make everyone, especially Pete, feel bad, that when he is at work I am basking in the sun. I have done some chores in the garden but I have really enjoyed lying in the heat of the sun. It’s so warm and yummy. It’s so sad though that the forecast always changes at the weekend when Pete has time to get out there but can’t. It’s sod’s law.

What else is happening?
I have got a CT scan booked in a few weeks and then I hope to get the results quickly so that I can let Nesselhut know of my status so he can decide what to treat me with next.

Research
Pete spotted lots of info on rosehip extract recently for triple negative breast cancer. On reading the research it does look promising and can’t do any harm in taking so I have ordered some. It is doubly helpful because it is meant to be great for bones and joints. That could help my ribs and back and also Pete could take it for his joints too.

 

With the nights getting longer it really makes me want to do more. The problem is I get so tired at night! I put it down to exercising quite hard in the mornings and also lazing around! Ha ha!

Over the last month or so I have been helping Pete make some lifestyle changes to feel healthier. It’s really motivating to me and so great to be able to help him. So far he has lost 16lbs in weight and seems to sleep better and is much brighter. Our bodies are our temples... it’s just we forget this. Even I do. 

So I’m off to the garden for the last few rays. It’s windy and clouding over, maybe this is the last of it?! Argh!

 

 

 

 

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Triple Negative

Today is Good Friday... Not the Easter kind.

by Claire17. April 2015 16:20

 

Fridays are always such a happy day; the weekend to come and feelings of,’ Yes I’ve got through another week!’ Today however has been even more off a ‘fist punch’ day.

Last night, feeling overly tired we headed to bed early. I didn’t think Ii was nervous or bothered about heading down to the hospital today but clearly I was, as I barely slept, not helped by our naughty cat who keeps meowing at our bedroom window to be let in when she has a cat flap down stairs! Anyway, I got up early despite my appointment not being until 11am in London.  I couldn’t hang around and didn’t want to be late so just got myself down there as quick as I could.

Anxiety and feelings of fear got worse as I approached St Bart’s and I started to feel like I was going to throw up. Not great when you are wandering around Smithfield’s. With so much time to kill I headed past all the cafes and salivated at the thought of croissants and crumpets (yes crumpets! I love them, they remind me of my childhood...) but as I walked I thought I cannot avoid going to Beppe’s cafe again. It’s rough and ready like a proper ‘greasy spoon’ cafe. I didn’t think I really fancied that this morning but I felt the magnetic pull of the place. I decided that if there was a table free then I would go in. As I peered through the window someone was just leaving... Right, that was it. As I walked in the lovely chap there was enthusiastically friendly and familiar. Such a nice guy. I’m pleased I went in there now.

By 9am I decided that I would get checked in at the clinic and sit it out. And that I did. Whilst there, a slight lady sat next to me and started talking and telling me about herself. She spoke so softly it was hard to hear everything she was saying. She was so upset, she cried during her story telling. I tried to ask the right questions and wanted to know if she had support, but it seemed she didn’t have anyone. I asked if she could go on forums or visit someone like Macmillan or Maggie’s centres. No. So I just listened. She was very sweet and said how beautiful I was, still. Still?

 I popped to the toilet and when I returned she had moved seats. Had I said something? I am so lucky, I thought to myself. I have such a support network and Pete; my rock, couldn’t give me more love than he does.

Anyway moving on, I was seen before my appointment time which was a bonus. Dr Plowman was his jovial self. I really like him. He read my folder and I filled him in on the details of my MRI on Monday etc. He tapped on the keyboard and clicked on tabs and located some of my MRI images. There was no report ready as yet. We looked at the images of my brain together. He said it was a good looking brain and everything looked really good. I asked what a brain tumour would look like and he said an asymmetric dot. He was quite thorough and said that he thought there may be something small on the front at the right but he wasn’t sure. He showed me another image which had reverberations on it. He said that was where I had moved during the scan. I explained how nervous I get and I am slightly claustrophobic. He laughed and said that the image had rings running through my head and that I wasn’t a tree, you couldn’t tell my age from it! Ha-ha....

Dr Plowman then dictated a letter and emailed a colleague which said that I was to get a report of my scan done and that they were to discuss me at the MDT on Monday. They are to consider doing gamma knife or cyber knife on that one lesion, if it is a lesion. He apologised profusely and said that he was so sorry that I have been messed around so much and that nothing seems ready when I arrive. He said, ‘Feel free to hassle my secretary, Emma, as I’m a stupid old man.’ No fear there. I will be on the case....

So I practically skipped out and rang Pete and told him the news that the five tumours are now, none or maybe only one! He won’t mind me saying, but he shed a few tears. What a relief. I will be even happier when I know the next bit but for now this is great! I feel such a sense of achievement and will keep going. Now I just need to know the body is following suit.

Today is ‘Good’ Friday... Not the Easter kind but the ‘Got everything to live for’ kind.... I feel like celebrating just a little bit! I love my friends and I love my family and I love all of you out there. Today, we celebrate small things because before you know it they are the BIG things!

Light and love everyone! XX

 

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Triple Negative

Under strict instructions to enjoy the sunshine! Oh go on then.....

by Claire15. April 2015 16:40

 

Isn’t it beautiful weather! I have been under strict instructions from the Bear that I am to sit in it and get my vitamin D boost. No arguing there. Today is glorious. He rang me on his way to work after going to the gym and suggested I do my ‘rituals’ outside today. So up I hopped and got my meditation mat, then did some yoga stretches followed by a kettle bell routine from YouTube. (Don’t I have the best husband in the world?) I am now full refreshed and soaking up the rays. It feels a bit weird though because there are other things I could be getting on with but i figured they will still be there tomorrow.

I have been a little bit productive though; sourcing builders, booking them in and so on. Since my treatment room is currently out of service it gives me the opportunity to get it sorted in there. I have been putting it off for ages.

Monday morning I was up with Pete. Now let me tell you, I hate getting up early! It was cold and dark but I got on a train London bound for an MRI scan of my brain at St Barts. As usual I was super early (Not one for being late if I can help it), however it was lucky I got there early seeing as the underground trains were all severely affected by a signalling failure at Edgware Road. I stopped for breakfast at Beppe’s Cafe ordering my usual green tea; he said in true Londoner style, ‘Your Barnet is growing back nicely!’ This tickled me pink. He asked how long it was since I saw him last and I said about a month. He remarked on how quick my hair was growing. Bless him. I had no idea he would remember me. That put a smile on my face.

As I was early there I thought I may as well check in for the scan. You never know they might see me early. Well I was seen early for the cannula to be put in then waited for about another hour before my MRI.

I was pleasantly pleased that I couldn’t hear a thing whilst having the scan and I thought I dealt with it quite well. I have no idea why I am claustrophic of that machine! Once done I hopped up and was back home in a few hours. No drama.

Whilst lazing around I have had a chance to think and I have been thinking about getting fitter and stronger. I have decided that getting fitter and stronger is a must, plus it also helps with the way I look and being a woman that feeling will always be there. I also want to do lots of drawing and more knitting. Having finished my second baby blanket, this time all alone, I want to do more! Back to the knitting shop i go for more colours of wool to choose from.

I have also been thinking about working a lot recently and having lots of new enquiries. I am such a lucky girl and I know this, and feel grateful every day that I don’t have to work presently, BUT, I don’t think I want to return to work either?! Is this terrible of me? I do feel guilty when Pete is working his toosh off and having such demands and stresses, but I really want to enjoy being at home when I am here and work hard at feeling good about myself inside and out. It’s mad to think that it is April already and that in only two months I will be forty. I plan on enjoying this summer.

I have been emailing with the secretaries at my hospital today. I am trying to organise a CT scan for the week after next as Dr Nesselhut wants to know what is happening before he does the next lot of treatment. I thought it was already being booked as I had asked in March. Anyway hopefully Ii will get the appointment I need in time for my next visit to Duderstadt. I have also just found out they are offering artemesinin, B17 and DMSO. They have confirmed it. This could be something I will add on if they say it is fine to do so.

Apart from that everything has been great. I haven’t experienced any more headaches or visuals or anything since I had that migraine last week. I think Pete was right when he said that it was probably one of the tumours being attacked after having nivolumab. I blinking well hope so! All I know is that i feel great. I am back down to St Barts Friday morning. I am assuming they will have results for me and then I know what happens next.

For me right now, I am longing to have a cuddle in the sun with my Bear and I hope he gets home earlier today. As its April the sun isn’t’ high enough in the sky yet and we lose the sunshine before Pete can get his dose of vitamin D.

X

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Triple Negative

I am not dramatic at all... am I?

by Claire10. April 2015 16:02

 

Our journey back to the UK was as expected, fractious. I always knew it was going to be hard. It always is when you are up against time. I thought I had given us plenty of time to get to the Eurotunnel but sadly there was a glitch at the clinic.

As we were leaving and preparing dates for our next visit they informed me I would need more blood taking. More blood?! I only had that done on my last visit and they were clear when they said I didn’t need to have that done this time. Of course I let slip.... I trusted them. Now I am not complaining but this is a lesson for everyone. You have to be on top of things and constantly asking. Pete asked them why they hadn’t taken it during my appointments this time. The lady said she didn’t know. Pete asked who was responsible for it. She said she didn't know. Right.....

I nearly burst a blood vessel in panic and frustration but luckily they agreed to take my blood before I left. The problem was they had delayed us for almost an hour and then made me wait a further 45 minutes. So that meant we left two hours later than expected to get home.

We desperately wanted to get past the tricky rush traffic in Central Germany. Oh we wish...

We got stuck and some. Then we were in every traffic queue going, due to accidents. But Pete ploughed on and got us to Calais about two hours before our booked train. I always book with time to spare and normally we hop on an earlier train, as you can do in normal circumstances but not this time! They made us wait until 22.50pm! Then I looked at the board and they had shunted us back to an even later train! I had a little spat with the train staff and they got us back on the earlier original train. Apparently because of holidays it was much busier than normal. Well maybe getting there later than expected was actually a god send. If we had got there four hours earlier we may have had to wait until 22.50pm! Hmmmm.. Every cloud and all that.

Once we got back into Blighty we had a good two to three hour drive home. You would think that at that time of night it should be fine but there was so many road works, traffic jams and crazy drivers! I was so pleased to get home and slip into our own bed. In total we were driving for 11 hours.

So treatment went well, apart from their lack of organisation for future visits. This is my advice to anyone in this situation. Keep in control. No one else will do it for you and the staff really do not consider your location, costs or time.

Since we got back I have been catching up washing and enjoying being home again. I have felt reasonably well all except a throbbing in my head. I am sure all canSer survivors feel fear when they have new ‘things’ going on inside of them. For a while I had a blind spot getting in the way of my vision. I was worried but stuck it out and now it has gone. Well this throbbing in my head has worried me. It’s something I have never felt before. Pete pointed out it only came on when I had my treatment and it could be a good sign. I agree, it is likely to be nothing. I hope.

So I went to bed with an open mind and just thought to keep an eye on it. I had no trouble sleeping and the throbbing went away during my slumber. It returned but less than yesterday. I thought this is good... But then I got visuals and have had a migraine this afternoon. I used to get migraines a lot previous to being diagnosed with brain tumours but this does worry me.

I awoke in the night and had a feeling of extreme panic, a rushing of adrenalin and blood. What if things had progressed dramatically? What if I was having an aneurism?! I am not dramatic at all, am I? But you know living like this is hard. All the years I used to have niggles and ignored them and they went away. This disease has made me paranoid! The thought of gremlins in my head, does my head in!

When the symptoms completely passed and when I stopped taking steroids and there were still no symptoms I felt great. When my results showed that the tumours were tiny I just hoped that they would continue to get smaller. And then these annoying things start happening.... Oh well, I have an MRI scan booked for Monday. I guess it’s come at good time.

I had a knock at the door yesterday. It was another bunch of flowers sent by Pete, as he knows I may be down on my first day without him. Bless. They are lovely. I’m a lucky girl.

The weekend is here and there is plenty to do and to enjoy. X

 

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Triple Negative

Passion.....

by Claire7. April 2015 14:48

 Tempers flare and frustration sets in when we should be able to get onto trials and "experimental" or non-accepted drugs in the UK that we are otherwise "allowed" to pay for and receive. That's what's happened to Pete right now. Probably at the end of his tether having to spend over a week with me and not being able to give his business his undivided attention too. Anyone that knows him, knows how 'passionate' he can get. I don't blame him but it can be upsetting to see him feeling like that.

We left home over a week ago for treatment but also to spend time together over the Easter break. To have some special time and to make treatment trips more fun and memorable. That’s what he does. He tries so hard to make things good, fun, loving and most of all special. He spends all his time thinking of others, putting their needs first. The thing is, things never really go to plan.

We travelled through France to Switzerland and then arrived in Austria. Pete had worked out that we could slip in a ski break between appointments, he had meticulously planned everything. This time of year you hope/expect to have sunshine and those gorgeous blue sky days skiing. Our thoughts were, ‘Will there be any snow left?’ That would be sad if there wasn't. Hahahahahaha. How funny that thought is now. We arrived and a storm set in. The resort had over four metres of snow in a few days! It was so bad some days we actually couldn't ski and when the sun finally did come out they decided not to let us up the mountain for fear of avalanches!

How frustrating and disappointing life can be at times, more so for someone like my Pete. He just wants everything to be perfect. He just wants people, and especially me to be happy. (I am by the way, no matter what he does.)We then had a 7 hour trip (stopover in Munich) and are now in Germany and I am having treatment. The weather is better now, but it snowed all the way here. We hope that it stays dry for our long drive home to ‘The Shire’ tomorrow afternoon (11 hours). I don't hold out much hope though....

Pete's frustration this morning is due to the screwed up medical society. Where to start. The waste of money on treatments that are proven not to work, the administrational shambles, the obvious control of the Pharma, it goes on and on and people are dying. We are not talking about gastric bands and boob adjustments. Pete was in tears over an Alzheimer sufferer this morning, diabetes, heart disease and of course cancer - these are challenges that we are facing at the speed of a striking sea slug and still people are dying.

We have been talking over new developments such as targeted DC therapy, Nivolumab and Ipilimumab and its so frustrating when researching to find they have been trialling these drugs and treatments for nearly four years. The sticking point of them is the cost NOT the efficacy.

Isn't is sick that we live in a world where they hold cancer patients (and other terminally ill) to ransom? I'm being told once again that I may not be able to get onto a trial because my recent scans show that I have had improvement on the treatments that I have had. So because I paid for TACE, saving the NHS around £100,000.00 in treatment costs and it has been working, they could decline me from getting on their trial. BUT I CAN HAVE IT IF I PAY FOR IT! This to me makes no sense.

I have been having treatment abroad, paying for it, and because that shows it is working, they would turn me down on an NHS trial in the UK. It's so short sighted. Can't they see if the trial works on me, with the other treatments I have been paying for, then I am not only helping myself but helping the Company (In this case Bristol Squibb Meyers) and other patients get a treatment that could be the cure, the answer, or at the very least the treatment that will be a winner for most?!

No point on dwelling on it... but so corrupt, mismanaged and such hindrance in progressing for a cure. This just reminds me how hard all of this is on our loved ones, our nearest and dearest. I'm so lucky to have someone who cares so much, but no one really realises how hard it is for them.

 Pete has devoted his life to me, his family and friends and his business, with all the responsibility that brings. When he is there, he works such long hours and never mentions his home life or troubles, he says his job is to be "positive". That's what people see.

What they don't see are the sleepless nights, the worry, the guilt at not being there whilst taking me, his sick wife, for treatment once again. Social media is amazing but it does only show the good times. People have even said to Pete "have a nice holiday" and think we are living it up abroad. He just smiles and nods and continues to post himself smiling in 'happy times' photos.

But money doesn't grow on trees. Pete has to be an innovator, motivator and different in outlook, always thinking of ways to grow and differentiate the business, but most of all ensuring that it doesn't fail. He has many staff to care for and they have their lives. It's a constant juggling act.

But we still try to maintain a normal life. As normal as it can be. We both long to be at home. To have routine. To be part of things we have built up for years. We don't want things to slip through our fingers after all the hard work we have put into it. It's hard keeping abreast of everything and heartbreaking when things don't go to plan.

If I could say one thing to my younger self or close friends and of course you as you are reading this, it would be - Never take your lives for granted.

Being at home can be monotonous but there is nothing like home when you are forced to be away so much. Right now I'm sat waiting for treatment. I have no idea if it's working, but I do know it takes a lot of time, money and effort for me to even be here. This is something I'm eternally grateful for and I will never take for granted either.

When you are bored, tired and wish your life was more exciting... think of all the survivors out there and 'put the shoe on the other foot'. I only hope everyone has at least one 'Pete' (my Bear) in their life. It would make your life better in every way.... My kuschelige Eheman.

 P.S. Pete and I have laughed so much on this trip. It’s not all doom and gloom as I always say…

Light and Love

XXX

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Triple Negative

Learn the art of patience.....

by Claire24. March 2015 14:25

 

‘Learn the art of patience. Apply discipline to your thoughts when they become anxious over the outcome of a goal. Impatience breeds anxiety, fear, discouragement and failure. Patience creates confidence, decisiveness, and a rational outlook, which eventually leads to success.’

I have been trying so very hard to be patient. But last week I thought I was so very close to getting an appointment for the gamma knife procedure at St Bart’s hospital on the NHS.

 

As you know from my last blog I was given a date over the phone for this procedure. The next thing I was waiting for was confirmation of the appointment which the secretary had said she would email. The following day by lunchtime I still hadn’t received it so I called. The secretary said she had sent it. This started the whole palava of her realising that she hadn’t received any emails for a few days. Seriously? She hadn’t thought to check why she hadn’t received any emails?!  Then she noticed emails I had sent her had gone into her junk box. Frustrating isn’t the word. To be honest I feel like a nuisance constantly calling and emailing but it makes me realise that I have just cause to!

Then I discover the letter that has been emailed to me is another outpatient’s appointment letter not a confirmation of the gamma knife procedure. I call her back again. She starts rambling saying that she needed to ask someone to call and that it wasn’t as simple as changing the letter. Eh?

In the meantime I had been also emailing a lady at the gamma knife centre. She said I requested the outpatient appointment so that Dr Plowman could look at my MRI images and be discussed at their MDT. I said that they had already done that. She replied and said as far as she knew my last appointment was a complete waste of time. I argued my point and asked why I was then given an appointment by his secretary? The gamma knife lady said his secretary couldn’t have done that as she doesn’t have the ability or authority to do that! Oh my goodness... how hard is it?

I then emailed both parties and was quite frank with them both. I got a call from Dr Plowman's secretary telling me a consultant was going to call me. That never happened.

Then I got a really nice email from the gamma knife lady who said she was awaiting for Dr Plowman to reply and that all matters were in her hands with a clear and robust plan of action. That was Friday.

I emailed today and she replied to say that she has now passed it onto the gamma knife CNS. (By the way I don’t know what all the abbreviations are- I don’t know why they think it’s appropriate to confuse patients further?!) I have replied and asked why and what’s going on... but had no reply.

 

It’s actually quite boring. And I don’t want to get upset and impatient but I do believe that I could have organised this with my eyes shut.

There are so many issues here that I cannot even be bothered to detail them now.

I am hopeful still but I also have that sinking feeling. What bothered me the most is when I asked Dr Plowman’s secretary, ‘How do you not know the process of booking in gamma knife patients?’ She answered by saying that Dr Plowman doesn’t do many on the NHS. He does more privately. Great....That is disgusting.

So I am trying to be patient. But I got fed up and decided to email my lovely ladies at the Churchill. I told them the synopsis of this farce and also how great they are as well as the consultants. I may have had a few issues in the beginning but they have always replied promptly, appointments booked and everything has been clear and simple.

As expected my lovely lady at the Churchill replied almost immediately and says she is going to try and find out what is going on.

I guess one of the problems with gamma knife at St Barts is this... The lady at the gamma knife centre doesn’t work for the consultant Dr Plowman and isn’t employed by the NHS. So her systems and procedures are separate from the NHS. So Dr Plowman’s secretary really cannot do much for me.

I say keep it simple! There would be fewer issues and maybe when I go for an appointment my images may be there if it’s being dealt by one person?!

So I’m still waiting.....I’m practicing using my energy by focusing on good things and being ever hopeful... but let’s face it. If I haven’t heard anything by end of day tomorrow I will be finding Dr Plowman’s email and phone number and contacting directly!

 

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Triple Negative

Booked but no confirmation as yet....

by Claire18. March 2015 17:51

 

I received an email from a lady working at the gamma knife centre at St Barts yesterday, just past 5pm, saying that Dr Plowman wanted me to book in for another outpatients appointment and then he would let her know the next step. She asked that I call his secretary the following day to book it in.

I replied immediately asking why Dr Plowman would want another outpatients appointment seeing as I had just had one last week? Of course I didn’t get a reply. It must have been home time.

This put me in somewhat of a bad mood for most of last night. I tried not to let it bother me but I couldn’t help worrying. What did Dr Plowman want to see me for? He had said that I would be getting an appointment for the procedure. I could only think the worst and different scenarios were going through my head like what I would say on the phone to the secretary and how I would need to argue it out. I tried calling there and then but of course being after 5pm there wasn’t any answer.

Luckily, having a bath then getting an early night meant I slept really well. It’s not hard when you have a big Bear snuffling beside you. The best sleep ever.

I got up and as soon as 9am came I called. No answer. Then I had to go to the doctors. I have had enough of the skin issue on my chin and around my nose. I have tried everything from Sudafed, to tea tree, to natural products and more. Nothing has been working and it has slowly got worse. I had my suspicions of what it could be and it was confirmed by the doctor. I have a form of dermatitis that affects the areas on the face like mine. I have been prescribed some cream which has already started to work. Bonus!

I got back and immediately got on the phone again and this time had an answer. The secretary was lovely and very helpful. I explained my situation and the fact I live in Oxford and so on. She went and spoke to the doctor who said let’s bypass the outpatient appointment and book me for the gamma knife procedure! Argh! Result. I have been pencilled in for late April and will get an email and letter to confirm.

I have been told to call again tomorrow if I don’t receive anything by ten am tomorrow. So far nothing....Seriously, I know I am a lady of leisure right now but chasing doctors isn’t up there on my list. However, this is really nothing to complain about in the scheme of things is it?

My energy is feeling all floopy today. I don’t feel driven like I did last week. It’s weird how our moods change. I’m aching quite a bit since I started a new exercise regime and I think that’s making me more tired than normal.

It’s cold again here and we awoke to a foggy garden. This afternoon has been bright and sunshiny.
I love it that I can get out in the back garden and have a cup of tea in the warm rays. The summer is going to be great and the garden is going to get full use! I am not wishing my life away but it’s right up there on the things I am looking forward to!

Until tomorrow when I hope I have confirmation.....

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Triple Negative

Gamma Knife an option?

by Claire16. March 2015 17:22

 

 

Friday morning Bear and I went to London to see the consultant regarding gamma knife. I’ve been there before and in typical St Bart’s style my MRI images had not been received. We did however see the consultant who I really like. He, much like the rest of the medical profession, seemed to be in a rush and we were ushered out within five minutes after waiting for nearly two hours and travelling two hours to get there!?

Luckily I had the written summary of my brain scans on my phone. He seemed happy that there had been substantial reduction and that there had not been any further tumours pop up and that I was no longer on steroids and didn’t show any symptoms. He said ‘they’ would discuss me at their next MDT then if I were to have gamma knife then it would be an early start, like I care?!

I got home and looked up emails I had been sent and noticed one from the secretary at the gamma knife centre. She had said there is an MDT on the first and third Monday of every month. That’s today! I hope they have sorted all my images out now and that was discussed today. I really want to have those tumours blasted! I am not loving the process involved, but then who does? Pete sent me the details of how it all works. Sometimes ignorance is bliss. Knowing exactly how they do it doesn’t fill me with joy!

I had an email this morning to say I will be informed when the consultant has made a decision. Okay......

Whilst in London we wandered down to St Paul’s cathedral to be met with road closures and many people on the side of the road... and the Queens car! Then we spotted her going into the cathedral! Eek! I saw the Queen! Haha...

This weekend we headed to the coast to visit my mum. We spoiled her rotten for Mothering Sunday. We took a long walk on the beach, spent time laughing and breathing in the fresh sea air. We made mum an afternoon tea en par with the Ritz, if not better!

                                                  

 

I had cupcakes made with MUM on them and a bag full of presents that I had made for her including a photo album of our memories in the past seven years. Sunday, we went for a lovely breakfast at a beach restaurant and then sadly had to say good bye. It’s never long enough....      

                 

                                    

Back to the week ahead and there’s not much going on except the usual routine and exercise and more household clear outs. I am loving clearing out the house, although it still feels like every cupboard is bursting at the seams! We have way too much ...stuff.

Mum helped me cast on yesterday so I am on my way to knitting another something special for someone special, although without my mum’s help, it could take a long while!

There’s a lot to look forward to in the next few months and time is flying. I am feeling good and hope it continues. My hair still looks odd with a bald patch but that’s the least of my worries. As is the red, itchy rash like thing on my chin and round my nose.

My blood results arrived today and it seems that my haemoglobin, platelets, red cells, and white cells, well almost everything, is low. Prof Harris says it isn’t anything diet, tablets or any treatment can change right now and it’s not bad enough for a transfusion to be required. I have sent a copy to Nesselhut for him to tell me what he thinks. Well if it’s all low I am not feeling out of breath or light headed, so that’s good.

Here’s hoping I hear from St Barts tomorrow about the gamma knife treatment. Fingers crossed....

 

                                  

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Triple Negative

Letting go of the niggling thoughts...

by Claire9. March 2015 15:36

 

Things are going really well on a day to day basis. It's unreal that only last week I was having treatment in Germany. Thursday and Friday we got back into routine and began a new regime. Pete and I desperately need to feel better and that means making lifestyle changes. Pete wants weight loss and to be fit and healthy. I need to feel strong and balanced and improve my bloods. With being away so much it's hard unless you put your mind to it. It's all about planning.


The weekend was brilliant. We had lots of sleep, cuddles, love, laughter and the sun shone. We worked hard in the garden and cleaned the cars. Our godchildren visited and ran round the garden. Then yesterday we had a family dinner. These are the simple things that make me feel complete. I feel like I achieved something. It's cathartic.


We didn't drink any alcohol and I feel great. Pete doesn't notice changes as much as I do. He had withdrawal headaches from stopping eating sugar and having caffeine. If nothing else I want Pete to feel healthier. The foods and drinks that go inside him now will be more nourishing.


I'm taking more supplements now. Nausea and vomiting has definitely passed and I've decided to stop taking the steroids. I was on such a low dose that my body makes that much anyway. So far so good. I've introduced reishi spore oil again. I really think mushrooms are great for the blood.


I'm on a mission to really get into exercising again. I need my body to feel stronger.
So with all these positive changes and improvements why do I still have niggling thoughts?


It's been a tough four and half years. The last five months in particular. But I know that they've been rough because I've combined many treatments that take a toll. Now I'm on nivolumab with dc therapy mainly, apart from a few other bits and bobs. The thing is I'm worried. I'm worried that it's not enough.


Three months of it and then I'll have a scan. When I was having TACE and infusions with IPT I kind of new it was working. Symptoms were going and I could feel my body improving. Having a scan didn't worry me massively because I knew things were improving. Now I'm a bit like- argh!


I hope to God and the Universe that I'm doing the right thing.


Every little physical change I'm really aware of. Last night I had a tickly cough and thought 'Oh no, not my lymph nodes again?!' Then I went to bed, thought positive thoughts and feel tip top this morning. So panic over.
I don't want to be like a scare-dy cat for the next three months. I want to feel confident and enjoy now...


Life is such a gamble. I would love assurances but no one has that do they?

 

Today I have been to the hospital to0 have my bloods done again in preparation for administering the denosumab injection tomorrow.

I also had a pleasant surprise today by receiving an appointment letter to see Dr Plowman this Friday regarding gamma knife treatment. That happened quickly. Let’s hope we have a better experience this time. Once I can get the brain tumours gone completely I will be really confident about beating this thing.

So for now I want to continue getting stronger and feeling fitter and more cleansed and treating this body and mind with the utmost respect. X

Tags:

Triple Negative

Are you bored of me saying what a great nights sleep I had at the Zum Lowen hotel?

by Claire5. March 2015 08:46

Are you bored of me saying what a great nights sleep I had at the Zum Lowen hotel? Ha ha...Oh well.... I did! Last night was an epic nights sleep....  So much so that I woke up with the puffiest face and eyes that I have ever had! My first appointment at Dr Nesselhuts clinic was at 10am when  I was told that my bloods were fine from the lab tests. Phew...  That's good news. I had many, many vials of blood taken so that they can be frozen by the lab and used for future dc vaccinations. 

Then I had hyperthermia followed by a Newcastle disease virus jab.
In between appointments Pete and I killed some time then returned for the vaccination.  We saw Thomas' son Jan this time.  He is just as lovely as his dad and seems to really know his stuff too.
He was pleased with my recent scan results and proceeded to discuss nivolumab.  He explained that unlike other antibodies and vaccinations which tend  to leave the body within about two weeks,  nivolumab has a half life of about four weeks,  so when I have my next infusion of nivolumab there  will still be a residue in my body therefore making it accumulative.This is classed as a good thing. He also said I had about 1mg per kg of weight.  The usual amount would be 3mg but they like to wean you onto it to ensure you don't get too many side effects. 

Plus, it would cost a fortune if we had 3mg per weight! Then Jan dropped the bombshell... He said that because nivolumab affects the immune system I could get an auto immune disease. That means any organ or system in the body could be affected. If affected then  I could of course die from that auto immune disease.  Er..... Brilliant. But it's ok because if I get any symptoms or illness then I could be put on strong steroids like cortisone or prednisone to stop the disease. So yesterday when I was pleased that there wasn't any side effects and how nice it would be to actually receive treatment without any pain or misery...  I was wrong. Life is so full of Yin and Yang! I wish he hadn't told me.  I don't want to think about the possibility of getting arthritis, failed organs, or anything really!  I just want to be healthy and happy- CanSer free! Well as I type this sipping on my mint and lemon hot water I just think to myself, 'what's the worst that could happen?'
Right now I have a choice. I'm already taking a leap of faith. I am to try out this combination of nivolumab and dc therapy for three months and then scan to see if it's working. The worst outcome is that the canSer grows and spreads.  The other baddy is that I get sick from the side effects and get too ill and die.
For melanoma, nivolumab really is a game changer so let's hope it works just as well for us TNBCers. I must point out that the trials for nivolumab in the UK are totally different to  what I am receiving as I am having immunotherapy as well. The other choice is I go straight back to Prof Vogl and have TACE and do what has been working recently. I never know what's for the best. I can only react to symptoms. That's the best way forward.  So I am going to be alert, live healthily and just plough onwards and upwards.  I will ask for another scan in about two to three months and continue to have my bloods done every few weeks. I am still having denosumab for my bones and will continue with my supplements and medication. We left the clinic with plenty of time for our flight. As usual the weather turned nasty.  We had a torrential downpour of hailstones.. It's actually getting funny now. We arrived with plenty of time for our flight though... Four hours to be precise!  Shame there wasn't any earlier flights we could have slipped onto.

Looking forward to my own bed. Let's hope I sleep as well as I did last night..
Xx

Tags:

Triple Negative