Bah humbug…..

We are well and truly on our way to the end of the year. Christmas is less than a month away and to be honest, it can stay away. I don’t mean to be all bah humbug, but I am still fighting the end of the year off. I loved this summer and have reluctantly been plodding along through the rest of this year. I don’t like the shorter days and I am already looking forward to spring and summer 2017. So much so that we have already been preparing for it by having a new patio laid.

It’s been a few weeks of being unsettled. My dad and brother have been staying with us and laying the patio. Sadly the weather was atrocious whilst they were here and what should have been one weeks work became two, purely due to the rain disturbing the work.

As usual, as soon as they left the weather improved. It may be colder now but at least it is dry.
However they still did a great job. All that needs to be done now is a big clean up. As you can imagine the place has been left looking a bit like a building site! Tomorrows job; jet wash the drive.

Why am I being such a ‘bah humbug’? I don’t know really. I normally love the festivities, but this year I am lacking motivation to decorate the house and I don’t even want a big tree. We have decided to have Christmas day on our own and we will not be going skiing over the festive period.

We are, however, making a visit to the Germany Christmas markets next weekend, but it will be tied in with a visit to Professor Vogl. My last treatment of 2016. That should get me in the Christmas spirits.

Then comes the thought of New Year’s Eve and even this isn’t bringing much excitement or inspiration. My main goal is to not wake up on New Year’s Day with a hangover. This festive season could be very quiet. I fancy having days out and visiting places in England I have never been before. I want see family and go out walking. I don’t want to sit in doors eating and drinking the whole time.

Even when it comes to the thought of presents, I don’t want to buy lots and I certainly do not need anything (other than a really clean house!) I am not down or unhappy I just am not feeling it this year.

On the health front, I am cough free and generally feeling good. I haven’t done any rituals or exercise in a long time but I am getting back into it this week. I have Deepak Chopras most recent 21 day meditation challenge to do and I really feel the need to stretch. I want to get ski fit in preparation for the New Year when we hope to go skiing again. The only thing that I am feeling is tired. This is due to my haemoglobin being low. Not low enough for any treatment so I just take it steady. Long term treatment is the reason. This aside doesn’t stop me trying to encourage it to improve, I even ate liver whilst my family were staying. Urgh…..

On that note, it was brilliant spending time with my brother and dad.

This week someone posted on a local facebook page of our village;

I would just like to let the people who live on Steventon Road in Drayton know that we drive past and love looking at the dragons that are on the front wall of their house. They paint and decorate the dragons according to different celebrations/ events. The kids love it (and so do I!)

I was so surprised with how many comments and likes it received… This makes me feel so good. I always wonder if people think I am a bit mad but it turns out it makes people happy. Well today I have once again decorated them. Just a few things to add then I will post them on social media and my next blog. I hope you like them….. They make me laugh.

So I will leave you hanging….until next time.

We had some good news this week; Josh, my stepson has been given a place in next year’s London Marathon, running for the charity we raise funds for; Breast Cancer Now.  He is stoked and so the training and fundraising begins. April may seem a while away but before we know it -it will be here.

Here is a link to his page. Please check it out. He could use the support. I will post updates of his training over the coming months.

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=JoshGrant1

 

 

She may be beautiful, but she is brutal!

I’ve already been to Frankfurt and back again. A flying visit as usual. Left on Sunday came home last night.
Monday morning first thing I had my next localised chemo treatment; TACE or TACP as it’s known.

The normal routine of having an MRI, then the injection with the ‘cocktail’ of drugs then Prof Vogl comes in and asks, ‘So what’s been happening?’ I never know if he means with me, the treatment or what? I usually just say how I have been feeling and if there is anything interesting to tell him. He likes to talk about Brexit.

Back to having the cannula fitted for the ‘cocktail’. A very beautiful doctor asked me lots of medical questions prior to starting the treatment. She also had to fit the cannula. OUCH! It was soooo painful. She practically stabbed me. I gave out a very loud ‘OUCH’! She said in her German accent, ‘Yes I don’t like having this done much either’. What?! In the last six years I have had hundreds of needles put in me but that just took the biscuit. I looked at her pretty face and thought to myself, ‘you may be beautiful, but you are brutal!’ Haha….

I asked Prof what it looked like on the scan and he said things were looking good and that the annoying lymph node that had been causing me trouble was slightly smaller. Well that would explain my cough improving. That’s good. He said that he would show me the pictures when I saw him later.

I was then sent to the recovery ward for three hours of lying flat and still, as instructed. Unfortunately the cocktail of drugs didn’t give me that lovely feeling or let me sleep. I laid awake taking things in and felt quite relaxed, trying not to focus on not needing the toilet! Three hours can be a long time when you aren’t allowed to move.

Things would have been ok if another patient who arrived after me wasn’t so upset. She was followed in by her son and husband. The lady would not stop wailing and shouting and nonstop talking. She was speaking in German so I couldn’t understand what was wrong but she was beside herself. Her relatives couldn’t console her and it sounded like she was about to die. It was very distressing to be around. The nurse came to see her a few times but she was just hysterical. Her son was getting cross with her as she was being so loud and neither I nor anyone else could rest. I tried to feel sorry for her as she must have been upset for a reason but  as time went on I am not certain if she just wanted attention. After a while I asked the nurse what was wrong with her and she replied that it was her first TACE treatment and she was just upset. There really wasn’t anything wrong. She did just want attention. Bless her.

This made me think of the different types of canSer patient and how they feel about their disease. There are some who don’t want to be a burden, those who won’t tell anyone anything, those that like to share and want to make everyone feel ok, and then those who want the attention.

I wanted to be cross with her as she was being so very inconsiderate. For me it’s always about principles and being courteous to others is important. That’s when I realised I shouldn’t feel any ill feeling against her. I just tried to zone out the noise. It made me remember the time I was in hospital in London having ablation and I stayed overnight. The old lady opposite me kept crying out for Mary. We never found out who Mary was. That bought a smile to my face.

Then I laid there flat on my back looking up at the ceiling and the machines above my head. I could see faces in the patterns up high above me and the screws and tubes on the machines made really cute faces…. Weird, I know, but this is how my head works.  It whiled away the time.

When my time came for me to get ready I couldn’t wait for the nurse so I pressed the emergency button to get her there quicker. She came in and I pointed at the clock and said, ‘It’s my time to go!’

Once the cannula was removed I hopped as fast as I could out of bed to get ready, being very careful this time. My leg was completely numb again from the anaesthetic.

Eventually after a CT scan I saw prof who was his usual self- not much to say. He knows me now and knows that I have many questions so he tells me everything looks fine, answers my questions then shows me images of my lungs from last time to this time.

Since I saw him last I have had a CT scan at home. I received the results that morning whilst lying in my hospital bed. So I sent him the summary that the Churchill had sent to me that morning. I hadn’t read them as I couldn’t open the attachment. I had also sent it to Pete who sent me a quick message to say it all looks pretty good. Oh good.

The summary report I had received from the hospital back here, basically said that the large tumour in my right lung is necrotic and has a big empty cavity. The hilar node (the naughty one pressing on my bronchial tube) is also necrotic and has an empty cavity. Now I see this as great news, however I can bet your bottom dollar my oncologist will say necrosis can also be a sign of the canSer growing very quickly. Gut feeling and the knowledge of ablation, no way. It’s dying.
Then there is something new; pulmonary embolisms in the right lower lobe. The radiographer has said they need to be tested to see if they are canSerous. Vogl immediately said they are not. He deals with embolisms every day and creates them- he said they are definitely not canSer and he says he created them with the ablation.

Other than that the left lung shows small tumours- Vogl says they are not active. The summary report says they are stable. There is no activity in any other lymph nodes. Yay! The tumours in my spine haven’t changed, there is nothing in my liver, or anywhere else. Phew…This to me is a bloody good scan report! I am happy.

I asked Vogl if I am now to have a treatment break, because I was confused that his staff gave me a piece of paper with my next appointment date on for December?! He said he thinks I should have one more treatment instead of leaving it as this is a good time to really get to grips with this lung issue. He thinks leaving it could be bad. Then he says, maybe a treatment break. I have earned it. Oh ok. I told Pete the news. He said he thinks Vogl tells me the truth. If it wasn’t working he would say. He is honest with me about everything that happens in my lungs. I feel ok about it. I would obviously rather get rid of the canSer and seeing as it doesn’t do me too much harm and cause many side effects, I agree we should have another blast before the end of the year.

I asked him if I could have a different chemo instead of gemcitabine and cisplatin. He said yes definitely. I asked if Eribulin was possible. He said categorically, no. why? It is too toxic locally. I was confused as I thought it would have been more toxic systemically. He said locally it would cause too much nerve damage. Ah… Eribulin for me, was going to be my next step, if I chose to go down the chemo route here in the UK which I had considered to start in the New Year, just to try and blast this thing. But for now it will be put on the back burner.

What else happened…? I decided the bed at the Capri hotel in Frankfurt has better beds than the Zum Lowen hotel in Duderstadt. Now that is saying something….I love it… so soft and comfy… I want it home here.

 

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