Goodbye January, Hello February!

It’s February already.. Blow me down with a feather. January was one testing month and after my last blog we have been keeping busy as always. Madly we have been away again to Austria, skiing. I know, we are mad based on my physical health from my last blog, but the holiday had been booked for some months.

The day before we left I was in an awful state. The coughing had made my ribs become really inflamed again to the point of not being able to move without being in complete agony. I have been foxed by this debilitating inflammation over the years of having canSer. Once again it was destined to cause me problems. I really thought, how am I going to walk or sleep as lying down hurt just as much as sitting or walking? I didn’t want to upset Pete but I was very afraid. He was carrying all our luggage and being brilliant. It’s mainly due to him being calm and supportive that overnight the pains really suppressed and I could at least sit without feeling in complete agony on the flight.

I was of course doubtful that I would be able to ski. But with the best will in the world Pete had me out on the pistes the very first day. It was a bit of a disaster though. The weather was awful. I was petrified of hurting myself and we actually couldn’t see the piste! Not ideal at all. We decided that day wasn’t the day to be brave and came home early. It did knock our confidence but the next day and the one after that was beautiful and the conditions improved over the week, as did my condition. I was skiing very rigidly and the air was very thin but I just felt so grateful to be able to get out and be sort of healthy and really enjoy being alone with my Bear yet again.

The apartment we stayed in was lovely, however, and this is a big however, it was up quite a steep hill which in the morning we had to climb stairs to get to the pistes and in the evening had to battle the incline to get home. I actually liked the challenge and was grateful for the extra exercise. That’s what I said after having completed the climb. But before the climb I didn’t have the same sentiment!

We skied about 25km a day and tried to really take it easy and take it all in. Because we were self-catering we were really careful with food and It was the best time to really nourish ourselves. I felt in control and then I got my mojo back.

Pete could tell I was afraid still so bought me a back/rib support. It was amazing. It really helped me get over my fear of skiing and I could relax and follow Pete closely on the pistes like I usually do. Perhaps a little too close on occasions!

I felt so grateful that Pete convinced me to ski. I feel so grateful to the weather turning out amazing and the conditions being fantastic. And now I am home I feel motivated to get healthy and fit again despite the nagging cough and sore ribs.

 

Whilst away I received voicemails and emails from Prof Harris secretary asking me to contact her. Gulp… oh God. I called and there was nothing to worry about. She gave me my brain scan results that I had the week before we went away. All good in the hood! No new lesions and the tiny one that was treated with gamma knife still remains. But as Prof says it could be a blood vessel or scar tissue. Yay! That cheered me up. I was told by the secretary my CT scan results would be given the following week at an appointment with the Prof. Ok…. Good.

So yesterday Pete and I met at the hospital nice and early and the Prof breezed in the room and said everything was looking good. In detail, no new lesions. None in the liver or peritoneum. Spinal lesions still predominantly sclerotic. The Right lung that has been treated with ablation has got a big hole in it. Basically things are changing in there and it will take time to see what occurs. Any other lesions that were remaining are stable and unchanged. Lymph nodes are all subcentrimetre therefore classed as normal. So yay! Although I always walk away feeling a little bemused. It would be lovely to be told that everywhere is clear. It’s never that simple though.

Whilst there I explained the pain I am suffering so Prof examined me and feels that the broken rib I had has calcified and formed a small lump. Under ribs are nerves that sit in a groove or channel. He thinks that the lump is causing the nerve to be unable to sit flat and is getting aggravated causing pain. He has suggested that I see someone to get an injection to stop that nerve pathway. He is writing to the relevant people for me.

Pete is lovely. He says ignore the report stating there are stable lesions. It basically means I have no evidence of disease as they never specify where they are or the size of them. I asked Prof Vogl about the other lesions and he says there aren’t any?! I am at a loss. But the main thing to think is they haven’t changed, they cause no problem so ignore them.

Right now I need the right lung to recover and get rid of the biggest tumour, which I am confident was done during the ablation. I am trying not to cough caused by the ablation. I now know it isn’t a lymph node causing that issue but the damage/healing of the ablation in the lung that is.  It drives me mad…..

I emailed Prof Vogl with the reports and he was really pleased. I think. His emails are so short and sweet and a little hard to understand. But I think the gist was him being pleased.

 

So now we are back we are not going for treatment this month, which is nice to be at home and have us to focus on. I feel motivated to exercise and began my rituals on Monday. Tuesday I couldn’t walk from such stiff legs! Haha! You wouldn’t think I would feel that way after a week of skiing and climbing hills! Yet I cannot walk… Stretches are killing me! Imagine someone walking like they have been riding a horse! Yep, that’s me.

 

So that’s us all up to date. My mind is a whirlwind and the thoughts and emotions change so regularly. I wish I could bottle my motivation and stay in this frame of mind. CanSer confuses me so much and it’s hard for me and Pete and everyone else to have a normal life. What is normal? That’s something I haven’t got the energy to think about right now… I need lunch!

I just want to say a huge thank you once again to all my followers on facebook who have been so supportive through my mad January triple negative breast cancer traumas… I love you all!

XXX

 

Think your life is dull, think again…

I warn you now.. This is going to be emotional and a long one.
2016 had started a little bumpy with the worst cold I ever had arriving on the first day of our Christmas holiday. Then banging my head and having whiplash didn’t help the matter. Especially due to the fact we were heading to Frankfurt to see Prof Vogl for surgery known as microwave ablation.

Frankfurt
I wasn’t looking forward to it anyway because of only having a local anaesthetic. I did not want to be awake during the procedure. This was obviously made worse having a terrible cough and head full of green stuff! But I had to have it.
The journey by car was actually amazing. We had to drive as the treatment involved piercing my lung and flying would be dangerous. We were so lucky with the weather and we tipped our heads to the Universe and God for helping us get there with no major issues, especially the weather keeping dry.
The next morning I arrived the hospital at 6.30am as required and Prof Vogl sat with us just before I went in. He assured me everything would be ok and showed us a print out of the tumour as it was last time. He said ‘This is the enemy’. We were surprised because the tumour wasn’t where it used to be. The one I knew I had that was problematic had always been close to the outer lung therefore making it dangerous to work. This one was in the middle of my lung! This means the old one had gone! I have never been sure of radiologists but this just confirms they don’t really spend much time looking through previous notes and images to compare.
I immediately went in, had a quick CT scan and was told there and then the procedure was going to start! Oh no! I thought, I haven’t been to the toilet! Haha…. I didn’t have time to blink. They gave me drugs to feel sleepy. Oh I loved them and then Prof cracked on with surgery. I wasn’t aware of much except the need to cough all the way through. Prof wasn’t bothered by it at all. After I did ask why I was coughing. He said he had been working very closely to the bronchus so it irritated it. Ok.. Good.
The next four hours were good. I slept and relaxed. Had another CT, saw the prof and he said that I didn’t have any pneumothorax so could return to my hotel. I chilled for the rest of the day trying to get rid of the cold that was still lingering.
The next day I had an MRI with contrast and saw the Prof who said that I was the first of 2016 to have the surgery and also the most complicated and dangerous. I asked why? He said the tumour was actually two little ones connected about 2.5cm by 1.5cm. He blasted them and the active area to the size of 6cm. It was very close to blood vessels and could have caused a lot of trouble for me.
Wow. Now I simply wait and have scans in a few months and hope they have gone and no more have grown. He said whilst I was leaving, ‘You have a terrorist in you. You have to keep alert’.
Thanks Prof.
We hopped in our car and headed back. The drugs must have started to wear off and I started to feel feverish. Pete had packed the car full of duvet, pillow, blankets, food, everything. SO he rugged me up and drove like the wind and got us back to Calais, the Eurotunnel. The weather and traffic being really good again.

Home
When we got home Pete sent me straight to bed and he unpacked the car and got ready for work the next day.
I had developed another cough which was really hurting under my shoulder blade and under the arm where surgery had taken place. I filled myself up with pain relief and have been on it really ever since.
The next few days I spent on the sofa and in bed just trying to feel normal and not cough as it causes so much pain. The cough was producing a lot of bloody lumps, sometimes choking on them in bed. They have subsided somewhat but in the morning I am still bringing some blood up. This I have been advised by the Prof is normal for a week or so. I still didn’t feel right and needed some pain relief to get me through the day.
All I thought was please let me get better uber fast as we were travelling yet AGAIN to Germany on the Monday. This time it was my 8 weekly visit to Dr Nesselhut for dendritic cells, nivolumab, ipilimumab and so on.

This is where it got crazy. Pete was desperate for some time at home to rest and relax and I was certainly not feeling up to much. I was getting ready to pack and travel on Saturday and noticed I couldn’t find our travel wallet containing passports, credit cards, money, everything.
We turned the house upside down a number of times. I cried down the phone to my friend who immediately called a service station we had stopped on the way back on the M25. I called the Eurotunnel. It was a complete nightmare! The most important and expensive thing we had, I had lost. In the car I had put it by my legs but must have kicked it out by accident.
Oh my god what were we going to do? The passport office adviser said that he would email the London office and tell them I was an urgent request and I could I fax proof as to why I needed to travel on the Monday. Fax? Are we living in the 90’s?? I said we couldn’t and he suggested going there.
By now it was 12.30pm and we were told it would shut at 3.30pm. Pete drove like the wind. Like he really needed to drive anymore?! We arrived at 2.15pm and was met by a man who refused our entry! He said that they were shutting in 30 minutes and I didn’t have an appointment. I was very emotional and tried to explain but he wouldn’t have it.. Grrrrr. Luckily for me a lovely lady who was on security ran off and got her manager, Carl. Carl came out and saw me and I tried to explain there should be an email explaining my circumstances. He went off and found it! Phew… He then said I could go through and I said my husband needs the passport too as he is my carer. Poor old Pete at this stage had been told to leave the building!
We had taken proof of my illness and why I had to travel Monday at 8am. I didn’t have to say much to Carl. He sent us upstairs with a ticket and we were shortly seen by Dev on counter 10. This guy is a saviours. By now it is 2.20pm and they had 10 minutes to process stuff and said it wouldn’t ready til Monday sometime. We had to fill out new applications and I said was there no way we could have a document to travel for Monday only? He said no. I was already a quivering mess. He told us to take our time and fill the forms out. He went away and when he returned said he had good news. He was going to stay there and make sure he got it done for us before the collections office closed at 3.45pm. Pete and I instantly burst into tears. Thank you.
We had to pay and have photos done again. I looked a complete mess, no makeup and my hair manky and obviously a little grey from the traumas and illness. We were then told to wait in collections where that was the slowest 45 minutes of our life. We just hoped it wouldn’t go wrong now. At 3.15pm Dev appeared and said he had processed it and they were being printed and they would be ready by 3.45pm. And they were. Pete shook Dev’s arm off! Eternally grateful. We were the last to leave but with two new ten year passports! A-M-A-Z-I-N-G!
I have never been so grateful in my life. We were obviously happy but it had been very tense with lots of shouting and tears. I just couldn’t believe I had lost it.
Sunday I spent the morning trying to contact insurance companies and cancelling credit cards. Bizarrely the cards hadn’t been used? So far we had no luck getting everything else back including the cash from the services or Eurotunnel.

Duderstadt
Monday we got up at 4am and got to the airport still bitter and sad that we had lost everything and the trouble that I had caused.
Arriving in Duderstadt I headed for my first appointment . The nurse was concerned as I couldn’t keep warm and took my temperature. It was 38.9 degrees. Far too high to have any treatment. That day I was due to have nivolumab and a blood test. Oh my God………. I was having the worst luck! I felt sick with worry. I couldn’t leave there after all the hassle we  had getting there, not to have the treatment.
I had to wait to see the doctor and during that time I willed my body to balance out. When I saw Dr Jan Nesselhut. I explained what had happened previously in Frankfurt and the stress over the weekend. He shook my hand as he came into the room and said that my hands were cold, that I couldn’t have a fever. So they took my temperature again. This time it was 37 degrees. He agreed that I was fine to have the nivolumab! Phew Bloody Phew!
I proceeded with my treatment and then headed back to the hotel, my favourite Zum Lowen beds, and tanked myself up on pain relief to feel calm and be able to try to repair myself.

During this I had a missed call and voicemail from lost property at the Eurotunnel. Someone had handed our travel wallet in! I desperately tried calling back but typically the reception was rubbish. Argh!! Was everything still in it?
Finally I spoke a lovely lady called Tracy who said that everything was still there including the cash! Oh my goodness…what a result. She was so lovely and actually said she would arrange for it to sent the following day by special delivery for it to arrive on Wednesday when I would be home. All at their cost. Wow again!
The next day I had my appointment with Dr Nesselhut and had my usual vaccination. He was as ever endearing and had so much time for us.

Gratitude
I just cannot believe firstly how up and down it has been and what an incredible start to the year we have had. I don’t lose things and I obviously haven’t been well or my usual self. I have never felt so much gratitude to strangers. The people that handed in our wallet, whom we do not know their names or details. We cannot thank them enough. To Eurotunnel staff for being awesome. To certain passport office staff (because they weren’t all helpful!) for going above and beyond the call of duty. To my friends who heroically made some calls for us and continued to calm us down and try to make us laugh. To my Bear for being an absolute legend getting me everywhere and looking after me (although it wasn’t really my fault.. it was an accident. My mum used to hear that a lot when I was younger! haha!)To the Universe for keeping us safe whilst we traveled and keeping the weather mostly dry and the traffic at bay. This has totally restored my faith in humanity.

Right now
I am still pretty unwell. Keeping Pete awake every night with my coughing. I did offer to sleep in another room but he said he didn’t want to be without me. Big bear love.
I am hoping the cough will be gone soon. It really does now only feel like a tickle except at night when I still bring up blood, probably from lying flat. I can now breathe though, as the head full of green stuff has left me! Yay! My ribs are still sore but I can deal with it. I am a bit scatty and I am feeling light headed but there is a lot going still.
I should now be able to have a few months off intense canSer treatment at least we hope. I will continue with my home treatments and hope that everything is gone. New old ones, no new ones. That is my aim. And Pete’s.
So there if you think your lives are dull, maybe consider dull isn’t so bad. We could’ve done without the drama. My poor stress levels and body simply cannot handle it. And Pete certainly doesn’t need any more stress than he already has!
Let’s hope triple negative breast cancer and all the metastases that it has bought will be gone…..
I am exhausted by this blog. I need a rest. Time for a cuppa.

Light and Love my lovely friends.
(Apologies if there are typos my head is like mash!)

XXX

A belated Happy New Year… Come on 2016!

I am so surprised how long it has been since I last wrote a blog. I guess that means I have had a lot going on and nothing major to report but actually I have written so many blogs in my head I wish they could all be done telekinetically!
I wanted to wish everyone a lovely Christmas and New Year but I simply didn’t find the time. Now that’s not something I am proud of as writing this blog is really important to me and I love sharing the love with everyone too. As I always said this blog isn’t all doom and gloom.
So let me take this time to say a big huge thank you to all my lovely friends and family and followers. Without you I wouldn’t be here.

A quick synopsis of how 2015 ended. Christmas was great fun with my mum and step son here at home with us. We had the pleasure of ‘German’ Christmas on Christmas Eve with my step daughter and grandson! What a cutie he is. I had great pleasure in giving our gift to them; a toybox that I had made and decorated with dinosaurs. Something I hope that he loves and uses for many years.
Madly we decided to go away on Boxing day, the 26th, getting up at 3am. What?! I hear you cry. I know, it seemed like such a good idea at the time. That said who needs their bed when they are about to spend a week in snowy Austria.
Sadly, Austria wasn’t all that snowy when we arrived. However we were staying in a high resort and the pistes had been managed amazingly. In fact almost all pistes were open for the whole week. By the end of the week new snow started falling. Thank fully for them. That meant we got the best of it all to a degree. Bright blue skies, clear visibility, and warmth, so not having to wear so many layers. In fact it was positively balmy! Sunbathing at the top of a mountain is the simply the best! Go Tina Turner! I hadn’t forgotten how to ski and we whizzed around the resort loving it.
There were a few hiccups and hindrances however. On arrival as it was early our room wasn’t ready. That’s fine. We still went out and enjoyed the first afternoon testing all the pistes. The staff had said they would move our bags to our room. We came back asked for the room number and key and promptly went to our room to get ready for dinner. We walked in to complete darkness then heard a few foreign voices speaking to us! Whatttttt? We got out of there quick and trying not to blush too much went to reception and found she had given us the wrong room and room key! Ha ha.. how embarrassing.
The next night the fire alarm went off. In our daze we got dressed and went downstairs and stood out in the cold There wasn’t a fire. So with all the confusion I asked the receptionist what was going on? She said nothing. So we went to bed. Weird night.
On the day of arrival I started to feel really rough. Just a sore throat and stuffy nose I thought. How I was so wrong… For the rest of the stay I felt terrible. It was possibly the worst cold I have ever had. In fact I am still blowing the weirdest coloured stuff out of my nose I have ever seen. ( Too much information?) I blew my nose 7 times the other night in the space of one minute and it still wasn’t clear. I am right now so bunged up it is unbelievable.
The rule when we go skiing is that we never miss a day. The only reason to miss a day would be hangover usually from the apres ski the day before. No. Pete won’t allow it. And it was the same with having this cold. I tanked myself up on decongestants and pain relief. In fact getting out and about was the best thing we did all day. We did finish very early some days and I got tucked up in bed fully clothed as I couldn’t stop shivering.
The other downside to having a cold is that my appetite went through the floor. I came home lighter than I went and now I am not feeling bad about all the Christmas gluttony.
The weather being so warm meant the snow conditions were icy at times and then by the afternoon like slush. We are experienced at skiing and know how to handle this situation however one afternoon I fell flat on my face. I banged my head and really hurt the left side of my body. I was wearing a helmet thankfully but my head really hurt and then a few hours later my neck was absolutely killing me. Whiplash. Great, my week was going well. Luckily the head repaired quite quickly but it did give me migraines at night along with such sore muscles in the neck. The migraines and neck ache really scared me. It made me question whether the brain tumours are back. I thought in my gut- nope. But I had been having the odd migraine before the bang on my head. Why? I was worried of mentioning it to Pete as it scares the devil out of him too. But stupidly my mouth flaps too much and I divulge everything to him. I quickly back it up with details of how it was different the last time.
It sounds like I was just having all the ‘luck’. However Pete also wasn’t having the most ‘luck’ either. He fell twice during the week which left his bottom black and blue. He also got the cold and a cough he hasn’t been able to shift for months, once again got worse. What a bloody mess we were and still are, actually.
All the time this was going on, in our minds, all we thought was what are we going to do about going to Frankfurt next week. Earlier in December I was umming and arring about my next appointment with Prof Vogl for microwave ablation. We eventually decided sooner was better than later but then this cold and cough came. If it had been last week I definitely would have cancelled however as I am really feeling ok all except congestion we have decided to proceed with our plans.
It’s not how I really wanted the beginning of our New Year to go but I figure that I slam everything now that it could give me a chance of a GREAT 2016.

I want to take this opportunity to let my Bear know that he was an absolute star last week. I didn’t want to do anything. I cried most of the days and whined about how bad I felt almost 24/7. He simply hugged me and said we would have fun no matter what. Can you believe a cold reduces me to tears more than canSer?
I tried not to think about going to see Prof Vogl. The procedure is going to be tough purely because I am scared of being awake whilst he ablates the largest tumour in my right lung. It’ll take 15 minutes apparently. I just hope I don’t feel a thing. That is my fear.
We have to stay a little longer than normal and I am acutely aware of the pressure Pete is under to run the business and get the year started off fast and furiously. He seems very upbeat about it all. However we have to drive to Frankfurt this time. I am not keen on flying home when I have just had my lung punctured. However I hope that I recover as well as I did when I had radiofrequency ablation in 2014 as I am due to fly to Hannover the following week to see Dr Nesselhut for my usual cell treatment.
Oh the life of a triple negative breast cancer survivor eh?
I am of course blessed that I can have all these treatments and that despite a big snotty nose and a deep voice I am living well and symptom free. I generally nowadays don’t think about dying of canSer. I am certain I getting there.
So with you being completely updated I hope that 2016 brings everything you want and need. Most of all love and happiness and a cure for triple negative breast cancer and treatment to keep us living longer and healthier. Light and Love.
C
XX

Fighting for our lives…..

Friday night I watched Text Santa, a charity event on tv that helps raise money for three charities. They focused on stories of certain families that have been helped by those charities. One was making wishes come true for terminally ill children and another for Macmillan nurses who care for patients and their families whose life is being cut short by terminal illness.
They do amazing work and I was left feeling positive in many respects with the work that they do but what really upset me was how accepting the families were of their diagnoses. I felt really upset, firstly that their lives were being cut short and they were leaving their precious loved ones behind but more upset that the families were accepting what their doctors had told them.
Now I don’t know the ins and outs of all the stories and maybe they did fight for their existence but it seemed and came across that they were just accepting the news their doctors gave them. ‘You will not live to see your children grow up’ or ‘your child will die before their next birthday’.
I wanted to shout at the tv, at them and wanted them to fight. Don’t leave them behind. There must be more that can be done!
We cried a lot, Pete and I, as you do, watching the footage on the fundraising show and I am certain they must have raised millions of pounds but I found myself sobbing and feeling really frightened.
Am I the one that is different? Should I simply sit back and accept the news that I was given 3 and half years ago? That I am going to die and to put my affairs in order. Enjoy life as you haven’t got much time left.
I believe that over the last three years I have done everything that I could do and if I hadn’t I know for certain I wouldn’t be here now. The progression of the disease should have meant more complications and certainly death, especially with the diagnosis of the brain tumours over a year ago. I know how quickly one can deteriorate at that point and I am just so blessed that I didn’t think that at the time, instead we went into overdrive and had as much treatment as possible. Without the love and fight from Pete I know for a fact I wouldn’t be as well as I am.
It is only a matter of time. There will be a cure or maintenance of triple negative breast canSer and all other canSers that will keep us fit and healthy with very little side effects. It’s probably already there. It’s just the pharmaceutical companies are holding back and making money. It’s beneficial to them not to let us get better. It’s better to keep us ill.
Look at my friend who three years ago was told he had terminal lung canSer who now has had the all clear… It’s not fake. I personally know him and he did it with a combination of treatments and supplements and self-help. It can be done. And everybody’s disease is different.
I know we don’t get out alive and that some die sooner than others but I feel very passionate about making sure we at least give it a try and stay with our loved ones for as long as humanly possible.
I’m still banking on being here for decades so until there is a treatment offered on the NHS that is suitable for all then I will continue looking for answers, with the support of my Bear.
Today alone he has sent me many links to research he has found. He breaks up from work for Christmas today. I can’t wait.
Jingle bells, jingle bells, jingle all the way!…..

I’m feeling really festive!

I’m feeling really festive! Christmas presents all wrapped, secret Santa gifts, Text Santa evening tonight raising money for charities and everyone wearing their Christmas Jumpers….Eek! I’m like a big kid.
The last few deliveries arriving today with the last few presents that I have bought for my nearest and dearest. I simply cannot wait! I’ve got all the twinkle lights on and I’m loving the Christmas tunes on the radio.
Today most of the schools are finishing for Christmas holidays as well as the usual daily tv programmes. Then next week is my favourite time. Wall to wall Christmas programmes and movies… I just love it! I always did love it as a child too. A whole week in front of the TV! Haha!
But all that aside I’m looking forward to sharing the gifts we have bought and made with those we got them for. Mum is coming up next week and we will be having the kids over and our newest member to our family, our grandson. (I know we are not old enough to be grandparents, but boy, we are going to be very cool ones!) Very exciting times.
It dawned on me today that I have made it to another Christmas. Silly I know, to think like that, but I honestly didn’t think I would make it this far. I didn’t think I would make it to my 40th birthday let alone Christmas. And now every single year is another milestone. I’m feeling remarkably well apart from a few niggles but on the whole I am living, thriving and surviving, with bells on!
In my last blog I was deliberating my next round of treatments, especially seeing Prof Vogl again, this time for radiofrequency ablation or microwave or LITT, which ever he decides is best. It wasn’t a case of whether I should have it but when, as Prof wants me to have it the first week of January.
Well we have decided to go for it. It’s going to be hard as we are going by car and I am fretful about having it done. I hate the thought of being awake whilst having something so intrusive, but I am sure I will be fine. I just want to start the New Year with a bang and really ensure I am getting on top of kicking canSers’ butt. Next year, 2016, is going to be even better than this, and this year has been EPIC! I simply cannot believe how many amazing memories I have or this year and all the happiness we have enjoyed. I am hugely grateful. 2016….. is going to be awesome! You never know we may be able to really help find a cure….
Pete has been researching a lot as usual. He is trying to find the next remarkable thing that will blow tripe negative breast cancer out of the water.
He came across this news, stating they think that lifestyle could have an effect on whether or not you get canSer; http://www.bbc.co.uk/news/health-35111449
Well we know that but why then aren’t doctors and researchers asking every single person with canSer questions?

This has made Pete and I want to design a questionnaire to see if we can compile our own data. Wouldn’t that be worth doing? We now know that there is a charity doing a similar questionnaire on ladies with secondary breast canSer but we feel asking people about their lifestyles when they were first ever diagnosed would be hugely beneficial. At least then there could be more preventative healthcare involved. We posted this idea on facebook and the response has been very positive. So we will get cracking and get this up on the website in the New Year.
We have to keep going, we have to keep figuring this out. The answer is out there and we want to keep as many of us survivors, surviving.

Right, I’m going to dance round the kitchen to Christmas tunes and wait for Mr Postman to arrive…. Fa la la la! X

I want to have a normal..ish life.. Is that possible?

I feel like I am getting back to normal..ish . The last few weeks have been great. Time with friends and last weekend we went to Frankfurt. It was for treatment but we went a bit earlier and met friends and experienced the Christmas Markets. We feasted on German sausages and drank mulled wine… and felt suitably warm and fuzzy.

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Sleep however wasn’t working for me and maybe it was the worry of having to have another TACE procedure early Monday morning. Monday came and off I went for my 9th or is 10th TACE now? I have lost count. Luckily for me I didn’t have much waiting time as you know how edgy I can get!
This time TACE was different yet again. Not the procedure but the way I responded. I felt really sick and starting vomiting whilst in recovery. I felt terrible for the visitors having to watch me throwing up but I just couldn’t stop and this got worse as I hadn’t eaten or drunk anything.
Whilst waiting to see Prof Vogl before I left I even had to throw up in his office. He kind of said ‘Merry Christmas’ and ran out of the room. It was at that moment that Pete arrived… Thank goodness. Just like a small child, I spotted my Bear and started crying. Prof’s secretary gave me some anti sickness tablets and told me not to worry.
What with me throwing up I hadn’t got time to ask lots of questions, which I am sure Prof Vogl was pleased about. It seems that the tumour that he focuses on in my right lung, the largest is now small enough for me to have LITT or microwave ablation. I was met by his colleague who said I could have an appointment at the beginning of January starting at 6.30am!
I had radiofrequency ablation a year and a half ago at St George’s in London, but this was done under a general anaesthetic and I was told I couldn’t fly for some time after the procedure. It seems with Vogl I am going to be awake whilst it is being done and I am able to fly home no problem. I think this is wishful thinking as how do they know that my lung won’t have a few problems?
I am unsure. I definitely want it ‘burned’ as Prof Vogl says but do I risk flying? I have to be there for a few days and it is going to cost more than the TACE. The thing is the date they have given me is only four weeks away. We already have Dr Nesselhut booked for the second week in January and what with the cost, logistics and commitments with work it seems impossible to do so soon.
I decided to ask Prof if he thinks it would be ok to travel there in February instead. I like to have something once a month rather than all at once. It is too much for me and for Pete and his business too. His reply was to say that hopefully the tumour wouldn’t have grown too much in that time.
Not the reply I really wanted. I guess his nose is out of joint as I a, going for treatment with Nesselhut but surely it won’t grow that much in 9 weeks? I am having other treatments at the same time and they all contribute to the shrinkage and stabilising of the disease. It’s very narrow minded to think it could be just one thing assisting in the decline of the disease.
His reply put me into a spin. I was feeling very bad yesterday. I slept for only 3 hours on Monday night. Poor Pete. I got up and cracked on with things that were running around my mind as well as doing washing, ironing, and anything else I could tick off the list easily. But the plan was to get that done and then get on the sofa and rest for the afternoon. That was the plan only I couldn’t sleep. I had received an email to say a delivery wold be arriving within a time frame. This meant I was worried about falling asleep and missing it…. Urgh… I was wrecked and felt completely crappy.
My muscles ached, I felt nauseous so I took more anti sickness tablets, nothing felt right and I guess that I was so exhausted I was hugely emotional. I wanted to be scooped up and told everything was going to be ok. Amidst the emotion I was trying to organise the next visit to Vogl. I still haven’t made a firm decision on dates.
Of course I would like to do it all at once but logistically it would mean having about a week and half off work right at the beginning of the working year. We would drive in case I did experience complications so that would mean extending the trip. This means more time in hotels and the stress just increases. Plus we have to raise the funds.
And there is one other thing. We do want to have a normalish life… Maybe I am being narrow minded and that if we went full on into kicking canSers butt even more than I have been, would that eradicate it? I don’t know? I have been really confident in the treatment plan lately. I do what I do at home, I have everything that Nesselhut has to offer and then I have been having TACE and now the next step is to have LITT or MWA (burning the biggest tumour) So amongst having all that going on we also want to be a couple and experience life away from canSer and the winter season is when we love to make our way to a snowy resort and ski our faces off! I don’t want to get to the point where I am not fit enough or well enough to ski. So It may seem odd that we choose to have holidays too but when they have been planned for months and we have scrimped and saved to ensure we can still live a normalish life then I think we should without fear or guilt or worry that we are making a grave decision.
All I want is to be normal. But that ain’t never gonna happen! Haha! But on a serious note… I think it is really important to try to try to have a life without canSer if possible. Right now I can, I think.
Haha… I can, I think.. That’s me all over. I make a decision, sort of!
Last night I slept like a log. Today I feel much better and brighter and more positive. I am less emotional but still really want my body to get stronger and healthier. My blood test showed that my red blood cell count had increased slightly which I was pleased about. I will keep combating the mild anaemia but I have to admit green veggies are evading me and I am drawn to comfort foods. (Don’t worry Pete is still feeding me liver!)
You know it’s funny. When lying in bed awake the other night I wrote the blog in my head and I have totally forgotten everything I wanted to say. I am sorry I cannot share that with you but it’s probably best it wasn’t aired. I am sure that time of night my thoughts are not really making much sense!

For now I am cooking roasting peppers that were home grown for us by our friend and I getting geared up to start wrapping Christmas presents. I have no idea what is still left to do but I am loving the build up to Christmas day.

What is the world coming to?

I cannot believe it has been two weeks since I wrote a blog. This time of the year seems to fly as everyone tries to catch up before Christmas. It’s such a crazy time. We have had the pleasure of celebrating our good friend’s wedding recently so it seems there is so much to celebrate! I love celebrating!

On the very evening of our friend’s wedding party Pete and I sloped off to bed whilst many were still partying. Getting ready for bed we listened to the news and it was then we were faced with the atrocities in Paris. It seems so close to home. I find all this chaos so hard to comprehend. What is the world coming to? What has happened to humanity?

I am so confused with this life. I and many others, too many, are fighting to stay alive and then there is the lack of respect for life with all the bombings, shootings, beheadings and many more sick ways to die. I don’t get it…..My little brain is tingling with confusion. I love ignorance and wish so much that I didn’t have to face this sad world we live in.

We are being faced with pharmaceutical companies keeping us sick and charging the Earth for drugs which could save lives, if only we could afford them. We have people killing each other daily, around the world….For once I feel relieved that I do not have a baby or child. How could I begin to think they will live a long and fruitful life? The world isn’t going to suddenly improve overnight and it’s going to get worse before it gets better.

But in my little world life is still going on. I am still planning my next treatment and hoping we can find the money to keep going. In a few weeks I return to Frankfurt to see Prof Vogl for another TACE session. I have today emailed Dr Nesselhut again as he said he wanted me to be referred for photodynamic therapy with a doctor in Germany. I haven’t yet heard anything so as usual I start chasing.

I have generally been feeling well. I am eating my way through anything green and having supplements to improve the mild anaemia that I have. My hair is growing back at quite a rate so I am starting to look like I have a skin by choice now.

I have had lots of social time in the last week, visiting my mum and getting the Christmas shopping started. This weekend we had our good friends and their baby visit. The weekend was spent laughing and chilling out together. The temperature has dropped so it was the first time for the fire to be used. All that was missing was the Christmas tree! The diary is filling up and it seems 2015 is flying by in front of us.

This year really has been extremely memorable and whilst we have had so much love and happiness, it has also been a very strange year. People are being a little odd. I am not sure if it the super moons, but people’s energies and actions have been unusually odd. That’s all I can describe it as……

I say it quite often but I definitely feel a shift in energy. For me life is so peculiar. I can’t help wonder what I would be doing if I wasn’t ill. Life has felt quite ‘normal’ recently. I have been trying (trying being the operative word, I am not sure if I just make things worse!) to help Pete with his work recently until new staff arrive. It has at least given me something to get ‘made up’ for and to leave the house. I would stay make up free and in my gym kit all day otherwise.

I do want to stay stress free and I do want to get fitter. I do need focus and I also need to constantly keep my eyes open for new developments. I would love to be know that the treatments is working on a long term basis and that I do not have to TACE every month, and that Nesselhuts vaccines could have longer gaps in between appointments. That’s the excitement in our life. Not knowing what the next three months bring. Right now I am not going to dwell. I am going to observe what the world is doing and pray that it gets better. I really looking forward to Christmas and the holidays.

Live in the present and look forward to the future, not making too many plans, too far ahead.

I need more iron in my diet so I am off to make some kale soup…..

XX

 

 

Looking on the bright side….It’s sunny and warm there.

It’s been all go this week once again. We flew to Germany very early Monday morning for me to have appointments at Dr Nesselhuts clinic both that day and Tuesday. As usual the system was the same and I received oncothermia, nivolumab infusion, dmso shot, amygdalin infusion followed by Newcastle disease virus and Dc vaccination and ipilimumab.

Dr Nesselhut says that he is reducing the dosage of nivolumab and ipilimumab each visit as he doesn’t want me to have side effects that some of his other patients have had; one having complete kidney failure! It doesn’t put me off. So far I have no side effects so I will keep plodding on.

He was concerned by my haemoglobin levels being so low. He thinks long term it is not healthy and suggests stopping chemo. Right now I can’t stop having chemo in the form of TACE because it is the combination of all my treatments that is assisting the reduction of tumours and keeping new ones at bay. I am hoping that after my next TACE I will be having laser treatment to blast the tumour in my right lung. I do understand what he means and I would like to be healthy again but I have to keep this going as it works with minimal side effects and upset, although expensive. That is something I would like to be able to reduce. The cost.

Although Prof Harris, my oncologist has said my bloods are fine considering I am having treatment he doesn’t seem overly concerned and also said diet won’t be able to help it really. Well we have to try and make a difference so I am eating everything that is rich in iron and that includes liver!!!

Tonight I have the pleasure of my first taste of liver since I was a child. (I hated Saturday dinners- liver and bacon! Yuck… I’m not sure why mum made me have it!) I am going to shield it with lots of other stuff. Unfortunately the other stuff is kale……Oh… Never mind better this than getting sicker.

Any suggestions of improving my iron intake then feel free to comment.

I have noticed more recently that the veins in my left arm are looking lumpy and sore. I use the same arm for everything because the other side of my body had lymph nodes removed. Although only three I really don’t want to risk getting lymphedema. There is so much scar tissue in the vein now but luckily for me it is very superficial.

 

Whilst we were in Germany we had such a nice time in such a short period of being there. The staff at the hotel Zum Lowen are so lovely and really made us feel like family this visit giving us a Christmas present- our first gift! Pete has been so poorly recently that we decide to use the facilities to ease his discomfort. We used the salt oasis and the sauna with lots of menthol poured onto the rocks. His cough has been causing such upset and he seems unable to get rid of it completely. I am hoping that now it will start to clear. Poor Bear. It was a real treat for me too. I love having some pampering even if it is medicinal!

 

This morning we woke to such a lovely morning sky. Bright, clear and welcoming the day in. Pete was in a lovely happy mood full of cuddles and cheeriness. Not long after he left I dragged myself from my bed (oh my heavenly bed) and checked out my emails. As you do these days. I had some very sad news once again. This time from our friends in Australia whom we met in Germany over a year ago.
Their daughter had glioblastoma multiforme and she had been keeping the tricky tumour at bay for so many years but had travelled the world and tried so many different treatments trying to keep it bay. She had four brain surgeries and every time came back stronger with more guts and fight than before. She was so young but still found life fun and filled it with love. It seems that the fight had become too much and she had got an infection which the Australian hospital hadn’t noticed and left Jenni in so much pain. It was only when she went to have treatment in America that her oncologist there said they could have treated the infection simply and removed her pain in an instance. The infection was so bad that it had actually eaten away at her skull, so as brave as she was, they removed part of her skull leaving her brain exposed. I can’t even believe I am writing this… But she overcame it. She recently had a new tumour removed and this time it left her with paralysis of her arm and leg and even that didn’t stop her smiling. I am unsure of details and to be quite honest they are irrelevant. All I know is that beautiful, strong, Jenni passed away after years of being a pioneer and finding her way, with the support of her family. I was so shocked when I read the news and I am really choked up. No words can help her family but we are very sad for their loss. I am sure it all must be a blur right now.

With that news I got up and meditated and said a prayer for Jenni and her family. It was yet another shock and I feel so happy that I am doing well but it never makes me forget all the things to be grateful for. You can have everything in the world you have ever wanted but nothing can stop life from taking its own path.

Bear and I feel lucky, so far. The treatments I have had haven’t all been successful but I have been lucky to catch the changes before it has been too late. There are ups and downs in keeping the disease stable or in remission and the future is uncertain- for all of us.

I will never take anything for granted. I feel very lucky having met Jenni, albeit brief, and receiving emails from her dad Tony. I will take her strength and courage and keep fighting and trying to find a treatment suitable for the masses. It’s out there somewhere. We know it is.

 

Light and Love and keep looking on the bright side. It’s warm and sunny there.

XX

I have had my three monthly fix of seeing Prof Harris…..

I have had my three monthly fix…. of seeing Prof Harris. This morning I had my three month outpatient’s appointment with my oncologist, Prof Harris and also to get my scan results from last week’s scans.
It’s always nice to see the prof but even nicer when he walks in with sheets of paper with my results on and even better than that is when he walks in saying, ‘It’s good news’.
Yes… I had some good news. Yay!
The good news is;
MRI scan for the brain tumours; Tiny left lobe lesion does not appear significantly changed.
No new lesions
Conclusion: Stable disease.
I’ll take that thank you very much!
CT scan; There has been a definite deduction in size of the right upper lobe lesion in my lung, which now only measures 30 x 19mm.
The area they said in my last scan showed several micrometastases has now mostly resolved. Prof said he thinks this must have been infection. The remaining lung lesions are stable. The question is, ‘What lung lesions?’
The right hilar lymph node has reduced from 19 x 15mm to a now normalised 8 x 12mm. Prof states that this actually is the usual size of that lymph node, therefore it’s now normal.
Subcentrimetre mediastinal lymph nodes are now even smaller!
Stable sclerotic lesions in the vertebrae- so basically they are dead still. Old fracture in my rib.
And no new lesions anywhere else.
Conclusion: Partial response to right upper lesion, the rest is classed as stable disease.
So all in all great news. Of course I want more! But then I wouldn’t be normal if I didn’t want the lesions gone completely. I am waiting and imagining the day Prof walks in and says ‘You are all clear’.
For now, I am relieved and happy. I am feeling generally well.
Prof says my bloods are low around the 9 mark but still good for someone who is having treatment every month.
He actually seems very proud of me. He mentioned today that is has been nearly three and half years since it spread.
As always he said to see him three months and book my scans in due course.
I did the usual of asking if there was anything in the pipeline that I could have plus asked about any other developments such as stem cells, but he said not right now. I asked about his research and he said that they have had some success with using something to stop the cancer cells blood supply through the vessels that grow off them. He said it is promising in mice and they will be testing on humans eventually. I asked what canSer that will be for. He smiled and one of them will be triple negative breast canSer. Oookkkkaaaaayyyyy… I will be keeping my eyes and ears to the ground and hope that I am eligible when the time comes for them to start the trials.

He asked how much the treatments currently cost. I told him and he was surprised and said that cost is less than having Eribulin on the NHS and is much cheaper than Kadcylca (the drug they are looking to take off the NHS for positive metastasised breast canSer) He also mentioned that he signed the petition for the makers of Kadcylca to reduce the cost so that it can stay on the list of drugs used by the NHS.
Wow I didn’t know they charged so much! He did mention that he had another patient in right before me who has been on eribulin and is having a very good response to it. He said ‘that is what we will offer you if you need it.’

I practically skipped out of there and called my Bear immediately. He is normally with me but the traffic, was once again, hideous. Pete was so frustrated he couldn’t get to the hospital in time. It turned out that there was another accident on the dual carriageway. I didn’t mind but I really didn’t want him to get upset. I didn’t feel let down. But Bear pointed something out. He said that I always get bad news on my own. And the fact that I didn’t today means that we have broken that curse. See, there’s a positive to everything!

So onwards with the next three months. I am drinking alcohol a lot less frequently. I intend on getting much fitter by making changes. The thought of skiing in the next few months is enough to motivate me into getting ‘ski fit’. Pete is focussing on feeling better generally and we are trying really hard at having a stress free life. This one is much harder to achieve currently.
Yesterday saw the first of another Deepak Chopra 21 day meditation challenge.
Here is the link if you would like to join;
https://chopracentermeditation.com/
Being mindful is essential, and it feels like there are big changes ahead, so we must believe and be focussed.
Right now I am looking forward to my Bear coming home and having a big cuddle. We can feel good knowing we are doing something right.

Light and Love…. As always. X

P.S One question is it too soon to be wearing this??11053127_10153195466872061_4041839942933026154_n

TACE last week-I’m feeling remarkably well……

 

For the last week I have been getting on really well. Last Tuesday I was in Germany having TACE with Prof Vogl. This would be my 8th or 9th session. I am losing count! Every visit is so different. The waiting times, who I see, the discomfort, the level of service of receive and so on.

The constant is that Prof Vogl is always the one doing the TACE procedure. Phew… The treatment does cause me some pain now though. The last few times the procedure has left me with some collateral damage in the form of a hard lump in the groin right near the incision site. I do tell the Prof but he seems to think it will go on its own and there is no other thoughts on the matter.

This time it was just as painful. I swear he doesn’t wait for the anaesthetic work and I am left wriggling in pain. My leg and groin were really painful for the whole three hours I laid flat in recovery. Of course the usual happened… I wanted the toilet for the whole three hours and simply cannot go in a bed pan.

The day dragged, I was left waiting for hours for some things and there was no wait at all for other things. That’s how it goes. I still haven’t mastered the art of patience yet.

By the time I left the hospital my legs were at least were working and so was the pain relief for the groin. Prof told me the tumour had reduced in size again and there were no new tumours. He expressed this again like last time. As usual I was a bit disappointed. I want dramatic improvement! I feel like things should be going that way with everything I am doing and I am feeling really well generally.

This week I haven’t been sick from the chemo used in the TACE, which is nice. I have a healthy appetite and even had a cook off on Saturday, preparing foods using lovely fresh ingredients preparing ourselves for the next few day’s meal times.

The only thing I do feel is tired, mainly from not doing enough physical exercise, and light headed, presumably from low bloods again. I am taking iron supplements and all those that are required to go with them but that’s the way the body goes.

Wednesday morning I headed to my hospital and had an MRI and CT scan. I am getting used to having MRI scans now and felt positively relaxed for a change- thank goodness. Results will hopefully be given to me tomorrow when I am booked to see Prof Harris. Pete is coming with me too. I feel hopefully things are looking good in there.

This morning I had an email from my friend Wayne who has successfully cured himself of canSer! I mentioned him a while back but today he got signed off by his oncologist and no longer needs to go and see him, have bloods tests or scans. Wow! That’s amazing. We both do very similar treatments and self-help but he has conquered lung cancer, stage four. So it really can happen. I do know a lot has to do with mind-set, belief and so on, but it is so very frustrating! I don’t really know what is working for me and what isn’t.

Ho hum.. Life goes on and as long as we can afford to I will continue having treatment but oh, the feeling not to have to would be amazing. Not only the money, the upheaval and the fact that I am feeling well is all I have to go by.

Life is good despite the ups and downs for us both. Yesterday I felt like I was coming down with another cold but swiftly had a homemade ginger, lemon and apple juice to kick into touch. Right now I do feel fine, so it must have worked.

I was feeling quite domesticated on Friday and made these lovely raw granola bars…Oh My Goodness… they are so tasty. You HAVE to try them! They are so easy to make… go on!
Here’s the recipe:
http://againstallgrain.com/2012/02/10/dark-chocolate-peanut-butter-granola-bars/

 

So until tomorrow when I hope to have good news!

Light and Love… Happy Monday!