Right now I am sitting in a restaurant at Frankfurt airport, having had two, yes two TACE treatments back to back. I have plenty of time to use as we bizarrely had a stroke of luck at the hospital. I don’t know if it’s from my incessant emails and complaints the last time I came here that they actually took on board the long waiting times and actually saw me quicker so I was in and out of there within about five hours. That mean getting there at 8am each day but I would rather that than wait even longer.
There is a down side. We got here hoping that British Airways, our chosen airline, would let us on an earlier flight like they did once before. Well yes they would and we would be boarding now if we wanted to pay an extra 600 euros each!
Bloody hell… well we are not that silly with money (despite what doctors’ think in the UK) so we opted to spending five hours here at the airport.
So far we have had two waters, two beers, a latte, two cappuccinos, a walk, a sit down and time to reflect and now I am using my timely wisely by actually updating my thoughts and blog.
We are strangely tired from doing very little, although it is very hot and humid so that could be a contributing factor.
My Bear has been lovely this visit. What I mean by that is that Frankfurt isn’t usually our favourite visit. It isn’t the place, it’s a great city and after looking around last night in the balmy temperature we realized how cool and funky it is. Bear feeds off my anxiety and nervousness and once my impatience kicks in at the hospital I put him in a really bad mood. Also Prof Vogl was on really good form. Maybe it was because he knew he was heading on holiday at close of play today for two weeks.
This time I asked Bear to stay away and not wait with me. I was actually calmer than usual and felt at ease until this afternoon. I am like a child. If I feel others are pushing in, it all seems unfair. This happened this afternoon waiting for a ct scan. But I got over myself and plodded on.
It has been a very successful trip I believe. I had two TACE treatments. One on Thursday and one today, Friday. I have never done them back to back mainly due to money and also the thought of having to surgeries and two amounts of chemo drugs so close together but this time, and as Prof Vogl offered we thought we should go for it.
Have you ever noticed I talk about me as ‘we’? Haha. I include the Bear into my treatment. He goes with me and feels my fear, and worry so therefore I believe it is a ‘we’ and not a ‘me’.
Back to the story.
The reason we decided to have TACE now is because I had a feeling. I have had a cough albeit a slight one, for a few weeks. Well I know where that went last year so I wasn’t prepared to wait for it to get worse and as much as I don’t want to be over sensitive and convince myself my thoughts are wrong, I cannot risk it.
Last week I went to my local hospital for my three monthly scan, although they were actually only just over two months. I had an MRI of my head and a CT scan of my chest. I don’t get the results until the 4th august but I didn’t have too long to wait to find out some detail.
One of the first things that happens when I see Prof Vogl is an MRI of my chest and CT whilst having the procedure.
He mainly focuses on my lungs and said that my right lung has two quite large tumours. He compared it to my last visit in January and they have doubled. I then got out my report from last scan in May and the sizes have enlarged from 33mm to 47mm. He said there is another one but he thinks the larger one is the main thing to worry about and treat.
I was of course a bit miffed to say the least, however not surprised.
The lack of intense treatment over the past few months has made me nervous. I know the saying my friend says, ‘Where thoughts go, feelings grow and actions follow’. So could it be my negativity that has caused this?! Rubbish. I have felt a bit unsure only doing nivolumab at Nesselhuts. Thing with all these immunotherapy treatments and alternative methods is they need to be combined with other things. It needs to be attacked. Well I think triple negative breast canSer does anyway.
OK I still have supplements and mild medications but the body changes. This is proved in my most recent RGCC blood test. Chemo’s that were really effective are no longer effective. And it’s the same for complementary treatments such as vitamin c which were not meant to be helpful now apparently could be.
It’s weird. I don’t 100% feel that Nesselhuts treatment is going to fix me but as Pete pointed out, what if the new tumours that were mentioned in May’s CT report are no longer there? I asked Prof Vogl for details about them and about my left lung and he definitely said there were none in my left lung. Well call me old fashioned if things weren’t working at all then surely they would have popped back up too. This will be confirmed in a few weeks with better detailing from my local hospital. Well as detailed as they like to be anyhow!
I felt a bit scared and disappointed last night and have done recently with the ever impending doom. Maybe because I was overtired and full of drugs that were wearing off too, but I really felt sadness and fear that I was going to die last year and I would have wasted all this time. I hope my head is ok and that the gamma knife has worked. That would be a real result.
All this change and going backwards and forwards with success and then some non success makes me question everything. But I had to try nivolumab and as advised by Nesselhut not to have chemo of any kind at the same time. My disappointment is that the time I have had to wait to get an appointment to see him again.
We fly out there next week. Its time to see what he has to say and get a detailed explanation of what the RGCC blood tests mean.
The thing with canSer is the uncertainty. But something that Nesselhut and even Vogl said this time is ‘you look good and let’s deal with the big ones’. The little ones kind of sort themselves out. OK I get it. I am living really well I don’t have any major symptoms and my daily life isn’t impaired. But what about spread into new areas? I always think if there are that many micro metastases then surely it means that it could be floating around my body wanting to take root! Please, please don’t have gone anywhere else!
This time at Vogl’s I had loads of ‘happy’ drugs, as I call them. I was away with the fairies yesterday and felt so peaceful. Today sadly it didn’t have the same effect. Every session is different. But what I did think was if this is how dying could be then it wouldn’t be so horrible. The fear of dying is the thought of suffering and being full of sadness but falling into a loving and happy slumber would be perfect.
Now why am I mentioning dying? Because as Pete reminds me we will all die one day… I know this. And living with secondary canSer reminds you regularly that life is on a thread more so than others maybe. I am afraid my mind does take me down this road every now and then and more when I am having treatment. It scares me. It saddens me that I am living this life and poor Bear has to be dragged through it too. It’s unfair but then I look at people on DIYSOS big build on the TV last night, oh my god… I have a blessed life.
I can live with this. In fact I may not be canSer free, but I am better than I was September last year. I know my results could show up something horrible and if I have to have gamma knife or alike again for my head then so be it. The human body and mind are amazing and although I am getting older (did I tell you I just turned forty?! Ha-ha) I believe I can keep batting it back.
I have been having a battle with myself recently. Again. I know it gets boring I am sure to anyone reading this as I do bore myself with these reoccurring thoughts. But what I if completely abstained from alcohol, changed my diet dramatically and became so mindful and strong minded with visualizations, would I beat it? Maybe I should try it? But I am being really honest, I don’t want to. The question then poses, do I want to live? If I did wouldn’t I be prepared to really go for it? Well I kind of have over the past few years. But I have felt my happiest when I have relaxed and enjoyed my life.
Germany isn’t a great place for being vegan. Life is hard for those around me and alcohol is part of my relaxation. Although drinking to excess is not. As I have found out these last few weeks. I am sure my body isn’t responding to drink like it used to. Maybe it has something to do with turning forty! A reoccurring theme….Ha-ha… only joking.
The thing is I could be really scientific and strip it back and do one thing at a time. Stop supps and meds and just have TACE and then start combining other things. Wouldn’t this make my life easier and a little cheaper for a while?
I believe it’s what ‘One’ believes in. For me combining everything has made sense although a bit confusing. For others just dedicating their lives to one or two elements has been their best way forward. This is the way for my friend who currently has no canSer! Good on him.
I guess I am not that trusting. I don’t feel I can do this unless I really kick its arse. And that has been the way ever since we came up with the Ten Point Plan on my website. (This by the way is going to be having a big overhaul and update over the next few months. Things don’t happen quickly these days as I like to take my time and do things when I feel like it.)
I do feel like I need something. I feel I need direction and a sense of achieving. I could work again but I don’t want to and actually can’t since I have ripped out the treatment room to get rid of the darn damp that has been annoying the house for a few years. Previous owners blocked up the air holes… duh!
So how do I feel now I have off loaded? Better I guess but I feel I could type forever. My thoughts and feelings have been coming and going daily and I know I should journal more. But I fear putting them in the public domain just makes me sound desperate and actually boring. I go around in circles and I can’t help that I don’t have discipline in that area.
There has been two days since I last typed as we had to go and catch our flight….
It is now Sunday….
My thoughts and feeling have changed somewhat.
I am now less buzzy and uplifted as I was when I typed the first lengthy part of my blog. I know I was rambling and that would be the drugs I am certain of that.
I now feel quite low. I am ok. I don’t mean depressed but I am tired and feeling a bit sad and definitely sore.
When I mentioned that I had TACE twice, I had to have the procedure performed on either side of my groin. Prof normally makes a small knick on the right side of my groin and inserts the tube into my vein and up into my lungs. I can see it on the CT scan. It’s crazy!
Well because I had a second treatment he had to do it on the left side. This was new. He also told me he did it differently by inserting it into my artery. I asked why? He said so that he could get the cancer cells that were transporting around my body too. Oo ok. This is good. Let’s get the buggers. That said I have been in quite a bit of pain since. The entry site is really sore and I have had quite a bit of swelling in my thigh. It hurts to bend and walk and I feel like I have had surgery. I hoped that by now, Sunday morning, that it would have passed. Sleeping is a bit uncomfortable but I simply cannot expect to go through these procedures without having some pain can I?
Yesterday was a bit of blur. I was tired and emotional but we cracked on, as us Grants do, getting jobs done. Pete was on fire! He was firing on all cylinders getting so much done. We tried to enjoy the decent weather. A good thing really as today is a very wet and dismal day. I don’t really mind as I love being snuffled up.
We went to bed really early last night to watch a movie that was on TV; Despicable Me! I had never seen it and I absolutely adore minions. I was made up. What I wasn’t prepared for was how it pulled on my heart strings. I am such a sucker for feel good stuff whether it is animated or fictional or not. My Bear had over done it and fell asleep during the movie and I tucked him up for the rest of the night. Bless him. So that means we have had an epic 12 hours in bed!
So why do I feel so low? I think it is the drugs leaving my body and probably the chemo drugs doing their thing. I have a bit of a furry mouth.
I don’t mean to wallow but I can’t help it. I don’t want to feel sorry for myself and I am sure I will bounce back in due course. There is a lot coming up. We fly really early Tuesday morning to Hannover to make our way back to see Dr Nesselhut. I am unsure how that will pan out. I feel very conscious the cost of this treatment and I really don’t want to throw money at it wily nilly. Pete still thinks could be really helping so I am more than happy to go with it. I always find immunotherapy mind boggling.
My next appointment with Prof Vogl for another TACE is in about four weeks. I will not let this thing take hold again and to be honest until we get a more detailed look at my scans it’s hard to know what’s going on.
I do know that I have to start thinking more about being mindful. I think this is the hardest part of living with canSer. It’s all very well coming to terms with the possibility of death but the fear of getting ill is so hard to understand. I am not physically ill right now and I have to keep healthy as I can be. Being mindful takes so much control and lately I have felt quite angry, and upset what with one thing or another. Hard to believe with all the good stuff that has been happening in my life. Then there are always people who want to bring you down.
Being mindful is something I am going to get work on… Starting today. I am having pancakes for breakfast with a big hug from my Bear. Then I intend on sitting and feeling all kinds of happy thoughts.