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.