Feeling better….

Friday again… Where do the weeks go? We have been to Germany and back yet again, this time to Duderstadt to have treatments at Dr Nesselhuts clinic. Literally on arriving at our hotel I had a message to go straight to the clinic. I got straight over and there and had an infusion of nivolumab. Everyone at the clinic was lovely and I really feel like they know me (probably due to the amount of emails I have sent them over the last two months. Hi Ladies!)

I still wasn’t feeling brilliant after last week’s treatments and had been struggling eating and keeping food down. After treatment I chilled with the Bear and we walked and tried to get some fresh air.

Well you know what comes next. The best night’s sleep ever! I need that bed and their sheets!

The next day I felt a bit better and surprised myself by eating a really hearty breakfast. I thought, ‘I’m back baby!’ But this was short lived as I had a few hours of infusions such as B17 followed a Newcastle disease virus injection then a jab in my leg DMSO ( a great anti inflammatory) then I saw Dr Nesselhut. We discussed my scan that I had at Vogls and that we know there has been changes in my right lung. He said that they not only give me my usual dc vaccine primed with NDV, and have the Pacific sea snail injection but this time we would have a low dose of ipilimumab. The doctors there had been talking and decided that although ipilimumab is dangerous and life threatening that a low dosage could be really beneficial alongside nivolumab. So that’s what i got! Boom just like that.

I have to say I felt really pleased. The last two days really gave me a boost and sense of hope. No matter what my scan results say next week I do know that I have already gone in there proactively having treatment.

And boy do I know. Temporarily I felt a real high and but soon enough I started feeling cold and sickly. The sickness wasn’t from Nesselhuts treatments but a culmination of other stuff, fever and so on. By the time we got home, which was around midnight (I wish BA would put on an earlier flight from Hanover!) I threw up right before bed. It was horrible came out of my nose and everything! Too much information?!

My arm as usual instantly reacted to the dc vaccine and I still have an inflated arm which is hot and itchy. But this has been somewhat overshadowed by the other ailments or side effects I am currently experiencing. My thigh where the DMSO was injected really hurts!

Yesterday I felt so rough and I felt so empty from lack of food. But every time I ate I wanted to be sick and I couldn’t decide if this was in my head. It really stresses me out and I cannot afford to lose weight. The other problem is my stomach has shrunk so I can really only manage a tiny amount without feeling full to burst. I am only 8 stone ten pounds as it is at the moment. I know it worries Pete to bits. Well with that and this incessant cough which is really hurting my rib that I broke last year. (I so wish it would heal,) I was not good to be around!!

So yesterday I wallowed and wished not only Pete was with me but my mum and my good friends too. I did throw up again but really made a conscious decision to get this sorted! By the time Pete came home from work I had managed to eat a good lunch and had planned our evening meal. Simple but filling. I ate it plus dessert. I went to bed feeling much better.

So I think the key is don’t ever let myself feel s empty as it makes me feel sick! I am laying off the supplements until I can eat, as it’s no use having them without something in my tummy.

Well today i am a different person. I woke naturally with Pete this morning and it was such a beautiful start to the day. For once I didn’t want to go back to sleep and got up at 7am. That’s early for me! I felt ok. I decided to eat immediately then again and again and again. In fact I have been grazing all day. And I haven’t felt nauseas once. I also made the decision not to cough. I am being really mindful not to cough. It’s a reflex but there’s nothing there. The tumour that is causing it is going to go and I will not put up with it. So far today I have coughed much less.

The bruises from TACE are going and my sore leg from the DMSO injection is feeling much better.

All in all, today is a much better day. If you spoke to me yesterday it was a very different picture.

I actually felt so much better that my rituals have been reinstated and I actually did some light exercise! Go me…..

My mission that I have accepted is to get strong. Stop my bloods being low. Try to get back on as many veggies and anti inflammatory foods as I can. I need control over some things. And this is huge for me. I simply cannot continue living feeling rough.

I am prepared for my scan results next week. No matter they are. We will have a plan and crack on with them. It’s good talking to Thomas Nesselhut as he said that nivolumab is really good on brain tumours. Well let’s hope that there isn’t any lurking in there (despite me having a few migraines recently) but if there is they got a good dose of nivolumab to whip into shape! I think leaving such a long time between treatments is what has caused things to grow again but I feel optimist things aren’t black and white. Maybe some tumours have grown and others lay dormant. I will always look for the positive and hold onto that.

I am chuffed that ipilimumab has been used no matter how low a dose. The dose will increase if I can tolerate it. I was asked to book for four weeks but due to other commitments it has been booked for seven weeks. However in the meantime I will be seeing Vogl so it’s not as if I won’t be having further treatment soon.

Right now I am happy that I home. I am loving my life again now i am feeling a bit better. Yesterday was actually quite nice as I spent most of it in bed, but today is even better as I feel quite good. I am looking forward to Bear coming home and having another lovely weekend together. We have no plans. So who knows what we might get up to?! I long to be back exercising daily and feeling really strong and healthy. That may take time but I’ll have fun getting there especially when I have the help of friend who is constructing a yoga routine and skyping me from Singapore.

I won’t worry about the scan results yet. Each day as it comes.

Have a great weekend.. Light and Love. X

 

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