I warn you now.. This is going to be emotional and a long one.
2016 had started a little bumpy with the worst cold I ever had arriving on the first day of our Christmas holiday. Then banging my head and having whiplash didn’t help the matter. Especially due to the fact we were heading to Frankfurt to see Prof Vogl for surgery known as microwave ablation.
I wasn’t looking forward to it anyway because of only having a local anaesthetic. I did not want to be awake during the procedure. This was obviously made worse having a terrible cough and head full of green stuff! But I had to have it.
The journey by car was actually amazing. We had to drive as the treatment involved piercing my lung and flying would be dangerous. We were so lucky with the weather and we tipped our heads to the Universe and God for helping us get there with no major issues, especially the weather keeping dry.
The next morning I arrived the hospital at 6.30am as required and Prof Vogl sat with us just before I went in. He assured me everything would be ok and showed us a print out of the tumour as it was last time. He said ‘This is the enemy’. We were surprised because the tumour wasn’t where it used to be. The one I knew I had that was problematic had always been close to the outer lung therefore making it dangerous to work. This one was in the middle of my lung! This means the old one had gone! I have never been sure of radiologists but this just confirms they don’t really spend much time looking through previous notes and images to compare.
I immediately went in, had a quick CT scan and was told there and then the procedure was going to start! Oh no! I thought, I haven’t been to the toilet! Haha…. I didn’t have time to blink. They gave me drugs to feel sleepy. Oh I loved them and then Prof cracked on with surgery. I wasn’t aware of much except the need to cough all the way through. Prof wasn’t bothered by it at all. After I did ask why I was coughing. He said he had been working very closely to the bronchus so it irritated it. Ok.. Good.
The next four hours were good. I slept and relaxed. Had another CT, saw the prof and he said that I didn’t have any pneumothorax so could return to my hotel. I chilled for the rest of the day trying to get rid of the cold that was still lingering.
The next day I had an MRI with contrast and saw the Prof who said that I was the first of 2016 to have the surgery and also the most complicated and dangerous. I asked why? He said the tumour was actually two little ones connected about 2.5cm by 1.5cm. He blasted them and the active area to the size of 6cm. It was very close to blood vessels and could have caused a lot of trouble for me.
Wow. Now I simply wait and have scans in a few months and hope they have gone and no more have grown. He said whilst I was leaving, ‘You have a terrorist in you. You have to keep alert’.
We hopped in our car and headed back. The drugs must have started to wear off and I started to feel feverish. Pete had packed the car full of duvet, pillow, blankets, food, everything. SO he rugged me up and drove like the wind and got us back to Calais, the Eurotunnel. The weather and traffic being really good again.
When we got home Pete sent me straight to bed and he unpacked the car and got ready for work the next day.
I had developed another cough which was really hurting under my shoulder blade and under the arm where surgery had taken place. I filled myself up with pain relief and have been on it really ever since.
The next few days I spent on the sofa and in bed just trying to feel normal and not cough as it causes so much pain. The cough was producing a lot of bloody lumps, sometimes choking on them in bed. They have subsided somewhat but in the morning I am still bringing some blood up. This I have been advised by the Prof is normal for a week or so. I still didn’t feel right and needed some pain relief to get me through the day.
All I thought was please let me get better uber fast as we were travelling yet AGAIN to Germany on the Monday. This time it was my 8 weekly visit to Dr Nesselhut for dendritic cells, nivolumab, ipilimumab and so on.
This is where it got crazy. Pete was desperate for some time at home to rest and relax and I was certainly not feeling up to much. I was getting ready to pack and travel on Saturday and noticed I couldn’t find our travel wallet containing passports, credit cards, money, everything.
We turned the house upside down a number of times. I cried down the phone to my friend who immediately called a service station we had stopped on the way back on the M25. I called the Eurotunnel. It was a complete nightmare! The most important and expensive thing we had, I had lost. In the car I had put it by my legs but must have kicked it out by accident.
Oh my god what were we going to do? The passport office adviser said that he would email the London office and tell them I was an urgent request and I could I fax proof as to why I needed to travel on the Monday. Fax? Are we living in the 90’s?? I said we couldn’t and he suggested going there.
By now it was 12.30pm and we were told it would shut at 3.30pm. Pete drove like the wind. Like he really needed to drive anymore?! We arrived at 2.15pm and was met by a man who refused our entry! He said that they were shutting in 30 minutes and I didn’t have an appointment. I was very emotional and tried to explain but he wouldn’t have it.. Grrrrr. Luckily for me a lovely lady who was on security ran off and got her manager, Carl. Carl came out and saw me and I tried to explain there should be an email explaining my circumstances. He went off and found it! Phew… He then said I could go through and I said my husband needs the passport too as he is my carer. Poor old Pete at this stage had been told to leave the building!
We had taken proof of my illness and why I had to travel Monday at 8am. I didn’t have to say much to Carl. He sent us upstairs with a ticket and we were shortly seen by Dev on counter 10. This guy is a saviours. By now it is 2.20pm and they had 10 minutes to process stuff and said it wouldn’t ready til Monday sometime. We had to fill out new applications and I said was there no way we could have a document to travel for Monday only? He said no. I was already a quivering mess. He told us to take our time and fill the forms out. He went away and when he returned said he had good news. He was going to stay there and make sure he got it done for us before the collections office closed at 3.45pm. Pete and I instantly burst into tears. Thank you.
We had to pay and have photos done again. I looked a complete mess, no makeup and my hair manky and obviously a little grey from the traumas and illness. We were then told to wait in collections where that was the slowest 45 minutes of our life. We just hoped it wouldn’t go wrong now. At 3.15pm Dev appeared and said he had processed it and they were being printed and they would be ready by 3.45pm. And they were. Pete shook Dev’s arm off! Eternally grateful. We were the last to leave but with two new ten year passports! A-M-A-Z-I-N-G!
I have never been so grateful in my life. We were obviously happy but it had been very tense with lots of shouting and tears. I just couldn’t believe I had lost it.
Sunday I spent the morning trying to contact insurance companies and cancelling credit cards. Bizarrely the cards hadn’t been used? So far we had no luck getting everything else back including the cash from the services or Eurotunnel.
Monday we got up at 4am and got to the airport still bitter and sad that we had lost everything and the trouble that I had caused.
Arriving in Duderstadt I headed for my first appointment . The nurse was concerned as I couldn’t keep warm and took my temperature. It was 38.9 degrees. Far too high to have any treatment. That day I was due to have nivolumab and a blood test. Oh my God………. I was having the worst luck! I felt sick with worry. I couldn’t leave there after all the hassle we had getting there, not to have the treatment.
I had to wait to see the doctor and during that time I willed my body to balance out. When I saw Dr Jan Nesselhut. I explained what had happened previously in Frankfurt and the stress over the weekend. He shook my hand as he came into the room and said that my hands were cold, that I couldn’t have a fever. So they took my temperature again. This time it was 37 degrees. He agreed that I was fine to have the nivolumab! Phew Bloody Phew!
I proceeded with my treatment and then headed back to the hotel, my favourite Zum Lowen beds, and tanked myself up on pain relief to feel calm and be able to try to repair myself.
During this I had a missed call and voicemail from lost property at the Eurotunnel. Someone had handed our travel wallet in! I desperately tried calling back but typically the reception was rubbish. Argh!! Was everything still in it?
Finally I spoke a lovely lady called Tracy who said that everything was still there including the cash! Oh my goodness…what a result. She was so lovely and actually said she would arrange for it to sent the following day by special delivery for it to arrive on Wednesday when I would be home. All at their cost. Wow again!
The next day I had my appointment with Dr Nesselhut and had my usual vaccination. He was as ever endearing and had so much time for us.
I just cannot believe firstly how up and down it has been and what an incredible start to the year we have had. I don’t lose things and I obviously haven’t been well or my usual self. I have never felt so much gratitude to strangers. The people that handed in our wallet, whom we do not know their names or details. We cannot thank them enough. To Eurotunnel staff for being awesome. To certain passport office staff (because they weren’t all helpful!) for going above and beyond the call of duty. To my friends who heroically made some calls for us and continued to calm us down and try to make us laugh. To my Bear for being an absolute legend getting me everywhere and looking after me (although it wasn’t really my fault.. it was an accident. My mum used to hear that a lot when I was younger! haha!)To the Universe for keeping us safe whilst we traveled and keeping the weather mostly dry and the traffic at bay. This has totally restored my faith in humanity.
I am still pretty unwell. Keeping Pete awake every night with my coughing. I did offer to sleep in another room but he said he didn’t want to be without me. Big bear love.
I am hoping the cough will be gone soon. It really does now only feel like a tickle except at night when I still bring up blood, probably from lying flat. I can now breathe though, as the head full of green stuff has left me! Yay! My ribs are still sore but I can deal with it. I am a bit scatty and I am feeling light headed but there is a lot going still.
I should now be able to have a few months off intense canSer treatment at least we hope. I will continue with my home treatments and hope that everything is gone. New old ones, no new ones. That is my aim. And Pete’s.
So there if you think your lives are dull, maybe consider dull isn’t so bad. We could’ve done without the drama. My poor stress levels and body simply cannot handle it. And Pete certainly doesn’t need any more stress than he already has!
Let’s hope triple negative breast cancer and all the metastases that it has bought will be gone…..
I am exhausted by this blog. I need a rest. Time for a cuppa.
Light and Love my lovely friends.
(Apologies if there are typos my head is like mash!)