The last few days have been intense to say the least. We always knew it was going to be the hardest yet and it has been in many ways. We left home at 4am on Monday morning for our flight to Frankfurt. It's mental how any people are up and on the roads at that time of day!
I had sort of planned everything as best I could but still didn't really know what was going to happen. We got our hire car and headed to the hotel. Thankfully our room was ready... Cool everything was going better than expected.
I had an appointment booked at 1.30pm with Dr Seibenhuner which can I say translates to Dr Seven Chickens! Pahahah! Love it... You gotta laugh when you can.
We were pleasantly surprised when we arrived at his clinic that it actually resembles a clinic; very clean, professional and well normal.
We met with the doctor, who was a really nice guy.
I showed my RGCC blood test results so that he could see what things should work against the canSer I have. We spoke about IPT, insulin potentiated therapy which is promoted as a "kinder, gentler" approach to chemotherapy, with "little to none of the negative side effects of chemotherapy." It purports to use about a tenth of the usual dose of cancer treatment medicine. The effect of the chemotherapy is claimed to be magnified or potentiated by the use of insulin, which lowers the blood sugar. People who offer this treatment claim that insulin "opens up" the receptors on cancer cells so that more chemotherapy can get in. The patient reports to an IPT clinic after having had nothing to eat or drink other than water for 6 to 8 hours. Intravenous (IV) fluids are started, and the patient is given a dose of insulin based on his or her body weight. For people with cancer, low doses of chemotherapy drugs are given a few minutes later so that they reach the bloodstream after the insulin has started to lower the patient's blood sugar. This is called the "therapeutic moment" by some IPT providers.
At this point, the patient usually has some symptoms of low blood sugar (hypoglycemia). These can be quite severe, especially the first time, because people can respond to a standard dose of insulin quite differently. The IV is switched to a high-sugar solution to raise the blood sugar. After the symptoms of low blood sugar begin to improve, the patient may be given food to raise the blood sugar further. During this process, the blood sugar may be checked by finger stick.
We then discussed possible drugs/ infusions to use with the IPT. Based on my RGCC blood results we discussed B17, which is present in apricot kernels and illegal to use in the UK, artemisinin, which I take orally daily, DMSO, which has been recommended to me recently to enhance everything I take in the system, plus a few other things such as potassium and magnesium. As well as this I was to have local hyperthermia on my brain and my chest. I can't think if there was anything else. My eyes were wide and I was in a bit of a state anyway. Dr Seibenhuner said let’s get started... There and then. Wow.... This was amazing...
Of course cost was running through my mind. Pete dealt with that side of things and was surprised as to how much it was. It was no way near as much as what we were used to paying... So that was a bonus.
Straight away they jacked me up to infusions, insulin injections and the hyperthermia machine. I was scared that my blood sugars would go so low I would go into shock. I was apprehensive about how all the infusions would make me feel. They assured me I should feel fine. They took blood samples and said they were to be sent away for testing to see if my cells did something?! To be honest I have no idea I just know I have results to come back. Hope they are good.
Two hours went and I laid there and got hotter and hotter. I didn't feel any more shaky than I already was. My blood pressure was monitored regularly. I don't suffer high or low blood pressure but that day my blood pressure was ski high. They also tested my blood sugar a million times. My finger tips are totally punctured. The interesting part was it started at 115 and they hoped it would drop to half that. But during the whole two hours it would only go as low as 89. I was worried that wasn't low enough and that it hadn't worked. I was assured that the reduction was fine. We asked why my blood sugars were so high. They think it could be stress... No really?!!! My body was vibrating from everything... The other thing is I stank. They hadn't told me that one of the infusions stinks... Honestly I stank of rotting flowers and cabbages for days. I couldn't smell it. Pete said that every time he walked in to the room all he could smell was me.. Brilliant. I am a smelly nelly. Boo!
So that was a success..
Day two- Professor Vogl and TACE
Having had this once I was nervous again. We arrived and I was taken straight into have an MRI. Pete went on his way for the afternoon. He had work to do but sadly money is the main objective to all these clinics. Despite having paid in advance and online the administrators hadn't bothered to check and demanded Pete prove he had paid. Poor Pete spent hours getting his bank manager to show proof and make phone calls and more.. Unbelievable. Are CanSer patients that unreliable?
All the while I am oblivious to this administrational nightmare.
Prof Vogl sauntered into the operation theatre where I was laid like a piece of meat waiting for him. I was hooked up to the ct scanner and my other images showed up too. Prof said that there was good news. The tumours in my right lung have reduced by about 20 per cent. Wow... Really? He said the lymph nodes not so much.
He got started with the procedure and the worst part really is the anaesthetic injection and the little knick into my groin artery. There is one particular male nurse who preps me and is present the whole time and he always gives me a rub on the shoulder to soothe my pain. I watched on the screen as the tube goes through my heart in my lung area. The feeling in my heart is so bizarre. He did say my heart had reduced since last time too, so that means the fluid has reduced. I told him my cough has gone and told him about my other treatments that I had, but to be honest he doesn't seem to care.
That's the only thing. Every clinic and doctor gives such different standards of service. Once the procedure finished I had to lie there for three hours to recover. I don't know what they give, although I hope I will sleep and I never do, but when I finally got up my pupils were massively dilated. Brilliant, more drugs to make feel detached.
I sat then for about an hour to have another ct scan to make sure I wasn't bleeding to death and then I went to see the Prof. He showed me images from my first visit and that day and I could see the reduction in my right lung. I couldn't see the lymph nodes. He said the ones in my left lung are so small not to worry about them.
Pete and I were concerned as to how this treatment would be going. How many times do we need to go and how is it going to get rid of completely? In my addled state I was unsure what the benefit of that treatment was over chemo. Obviously, normal chemo kills all cells. TACE targets the specific areas and the side effects are minimal. I have to be honest I saw the chemo shoot through my lungs on the ct screen and then I am walking around feeling fine. I can handle that over systemic chemo.
Prof said in his limited fashion that we should continue making the right lung and lymph smaller and then he thinks we should ablate them with RFA or Laser treatment that he offers. Ok right. I think if I have any questions I will have to email. It's like getting blood out of a stone.
We hot footed it out there with mixed feelings. I should be over the moon that there has been such success in only one month! But in my drugged up body and the concern for just getting to the next destination all happiness is taken away. You can't really feel happy when you are being given news by a cold blooded heart less doctor. There is no emotion in some Germans!
By now it's late afternoon on Tuesday. We jumped in our trusty hire steed and made a three hour journey to what I call my German home, Duderstadt.
There has been no daylight since we got here. That has made it worse. I feel like I am walking around in the dark and it's not very uplifting or inspiring. My body feels different every day. I'm reducing the steroids but my face is bloated now and I have puffy eyes. My scalp and forehead are itchy and my hair has started falling out from the radiotherapy, God darn it! I really hoped it wouldn't but I am gutted. I know it's not the end of the world but with a fat face I don't look good. I have aged with worry and have more wrinkles than before. I rocked the bald look years ago when I looked healthy. I do not look healthy. My mind is a mess as is my body. I'm a wreck!
We arrived at our usual hotel, the Zum Lowen and were welcomed to the first room we ever stayed in. Bliss! The beds are out of this world.. The bed covers, I have to have, are silky smooth and despite knowing I might not sleep very well, because I haven't lately, I didn't care. I knew lying in this heavenly bed would be just what Pete and I needed. I wasn't disappointed..
Day three- I got up yesterday with plenty of time before my first appointment at Dr Nesselhuts. I was having hyperthermia and more infusions. I decided to catch up on meditation and emails. Pete had lots of work to do so I made sure I kept quiet. I had a great morning. Off I went for my treatments. Putting needles in my veins is really getting to me now. I have great veins but my good one is starting to look a mess.
I came back to the hotel and chilled even more. I felt all blurry.. My puffiness is getting right on my nerves. Pete and I try to be as normal as possible but really I just feel shaky the whole time. I'm worried it's my blood sugars or is the drugs or is it all of it?
Another great night in the heavenly bed. But I still wake up thinking half way through the night. I can't switch off my head but I'm not sure what I am really thinking about. I woke with aching ribs and a mild headache. The first headache in a while. I put the rib aches down to TACE. I remember feeling a bit achey last time from that chemo. The headache I hoped would be nothing. I haven't taken any pain relief and I feel just fine at present.
Day four- I'm up packed and ready to check out. I have another session of infusions and hyperthermia then to see Dr Nesslehut. I've booked the earliest appointment possible as we have to get back to Frankfurt for our flight. Bloody pressure! I know I could make it easier by staying an extra day but we have to get back. Pete has important work and that's how we make the money to pay for these crazy adventures.
I feel ok. I'm shaky again and a little less puffy- yay! But I still feel like I am living in a parallel world. When I lay in the ward after TACE it was like being in a movie where a captive is taken and is being tested upon. Foreign language banding about and being prodded, poked and given, well it could be anything?! It does take the feeling of control away somewhat.
Pete just goes with the flow.
I saw Dr Nesselhut and we discussed future treatment options. He discussed ipilimumab, a drug that one of my friends had recommended. I didn’t even need to bring it up as Dr Nesselhut did.
Ipilimumab belongs to a group of cancer drugs known as monoclonal antibodies. Monoclonal antibodies are sometimes called targeted therapies because they work by ‘targeting’ specific proteins (receptors) on the surface of cells. Ipilimumab is a bit different because it works by attaching itself to normal immune cells. This changes the way these cells work and helps the immune system destroy cancer cells. Apparently it can be deathly and is very expensive, but if I go for it combined with CD80 then it could really do the trick.
I can’t remember the facts on CD80 but it is something to do with T regs. Honestly you need a degree in science. Ok so there is a plan for the future. We skipped out of there and drove like the wind back to Frankfurt dodging awful car accident after another. I don’t know how we did it but we got to the airport with hours to spare til our flight. Being cheeky we asked the check in desk if we could get on a earlier flight... Yes!
Boom we got back to Heathrow and then home a few hours earlier than expected and it made all the difference. We were in bed by ten and had unpacked and prepared for work today.
It’s amazing to be back even if I am walking around with niggles, aches, pains and a hazy head. Once I have done some admin I will meditate and really take some time this afternoon to just BE...
Pete squeezed me as hard as he could throughout the noisy rainy night and we woke up thinking our bed is just as good as the heavenly bed at the Zum Lowen. There’s no place like home. X