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!