It feels like ages that I last wrote a blog. I know it was Valentine’s Day which was literally two weeks. In that time there has been a lot of activity in the Grant Household with work men getting jobs done and home improvements that have been booked for ages. Also I have been very up and down. My mind is scattered although I have achieved an awful lot. Sleep hasn’t been kind and the curse of steroids continues. I have put on weight to a point where I have increased in two dress sizes and nothing fits! I may look healthier but it’s really weird to see myself like this.

There have been many highlights thrown in the mix too. We spent a wonderful weekend with our dear friends in Ireland and had many laughs and making memories. The night before we flew out there we spent an evening meeting a fellow triple negative survivor, whom we have become quite friendly with. She travelled to London  with her cousin for the weekend, sightseeing and we met for dinner and to see each other face to face for the time.

My new friend is from Germany and luckily her English was impeccable and luckily again Pete speaks fluent English. We had a wonderful evening talking and just enjoying each other’s company and it felt like we both had known her for ever really. It was very natural and really great to see her in the face to face. We have agreed that Peter and I would to visit her sometime so I think a true friendship has been born.

We flew back in Sunday night and got home late. The next day I returned to the airport to fly to Germany to see Professor Vogl for have my TACP (chemo) session. I had decided I am a big girl and could fly alone to Frankfurt especially as I literally fly there, hop in a taxi get to hotel, sleep, get up and hop in another taxi to the hospital. I didn’t need anyone to come with me and most of all I didn’t want Pete to have any more upheaval. He needs routine and to focus on work too. This is so hard on him.

That evening I emailed the Prof asking some questions about having biopsies and wanting to know what I am dealing with now. He replied and said, ‘We will manage’. I replied, ‘I am hanging on for dear life, here. I have to keep on fighting’. He replied ‘It will be great to see you again. You are one of my miracles.’ Wow that threw me….

I curled up in bed and didn’t sleep, as usual, but I was relaxed and I didn’t have any pain from the steroids. The next morning, I got up and headed to the hospital. Everything went smoothly and I even got to the airport by 2.30pm. The earliest I have ever been after treatment, albeit very spaced out. Sadly, they couldn’t fit me on an earlier flight. Most people probably would hate the thought of 3 hours to wait for a flight but I was more than happy to sit and message everyone and catch up on admin.

I got back to Heathrow and there was my Bear holding a sign with, ‘Kitty’ on it! Haha.
I love his happy face and his big warm cuddle. That night even though sleep wasn’t great I just snuggled in his fur. (Too much information?!)

The rest of the week was lovely. My mum came to stay for a few nights and helped me out and who doesn’t love a mummy cuddle? She helped me out by cleaning the house and sharing the washing and ironing too. It was such a relief to get the house more organised and clean. It always goes too fast and I am so sad to see her go.
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Over the last month since cyber knife I have been reducing the amount of steroids I take. One cannot simply just come off them. So I hope with the reduction that obviously the symptoms do not return and also that the weight and the bloated moon face will reduce. Sadly, part of the sedative I was given on Tuesday at Vogl’s was an extra 2mg of dexamethasone. My face and neck bloated the next day and was actually quite painful. I looked horrendous. People don’t recognise mw now. Most of all myself.

I had a meltdown. I was highly emotional. Sleep, bloated, the skin on the ends of my fingers split, still being deaf from the cold and the cough… all these little things are like Chinese water torture. I can deal with cancer, its all the other stuff making it harder and one thing that is rearing its head more is the mortality issue. I was fine until last month when Harris decided he was having a bad day….

We have sent a letter to him expressing how we feel and the events of that day. The letter back wasn’t a good reply and factually incorrect. So since then we have replied again, but it hasn’t been seen yet and we haven’t received any reply.

I had to email Harris asking for a prescription of the oral chemo I take alongside Vogls’ chemo. I was told by his secretary that I had to go and see him-today. Urgh….
I told the secretary I would not be discussing anything in the letter or from that appointment in January until I received a letter to my new letter and with the presence of Pete.

So this morning. I went to see him as requested. I was greeted by a lovely secondary breast cancer nurse who immediately apologised for what I recently had to experience and she said that she wanted to be present today if that was ok? Of course. I entered the office and there was also another doctor there. Then Prof breezes in. Being his usual flustered self he simply asked for detail on what treatment I had been having and what my plans are next. I told him what I wanted and how I was and that I had noticed a lump/swelling in my right armpit and questioned whether it was oedema from having lymph nodes removed previously. He examined me along with the other two people present being in the cubicle. I was having a cubicle party and everyone was invited- Yay! Weird but I guess they can’t trust me and Harris to be alone anymore in case I accuse him of something. Glad to know they have my best interests at heart. He confirmed there was nothing to worry about and that it was yet another side effect of the bloody steroids. More like a fat deposit. Great fat… more of it.

Despite me reducing now to 1mg of steroids per day from 8mg I do not seem to be having many side effects or losing all this poofyness. I know, I know, be patient. As long as I am not having symptoms, but now I have started to worry that I am. The past few days I have been having headaches a bit like I had when I had tumours before. This got me worried again thinking does that mean more tumours? Or the tumours that have been cyber knifed are still growing? If it’s not that why do I still have so much oedema that causes my head to hurt? Or is it that I am tired and simply need to rest more.

I emailed Dr Wollf, the cyber knife doc, who said it won’t be the tumours that are treated it is likely that the oedema is still taking time to reduce and that if it gets worse to increase the steroids and take more time in reducing it. He also said that if I am really worried that an MRI would be the only way of determining what is in there. I have decided to monitor and be sensible. I won’t ignore it but I do have to honour my body a bit that things are ever changing.

Sleep has improved. I am actually tired and am sleeping about 6 hours a night on and off! Woohoo!

I promised myself that I would be better to myself this week, so that means doing meditation, yoga and exercise even if it was only ten to fifteen minutes of each. I did it yesterday and it was lovely. I now can’t walk after the yoga and exercise but I have tried and will keep it up. I have lost a few pounds so that’s positive that the reduction in steroids are working but I still look scary and I still feel a bit scatty still. I won’t miss these feelings.

I have had plenty of teary outbursts recently and I am scared every now and then. I can deal with things when I am on top of them but all of this and the way it recently began has caused me such old feelings to return and new ones that I need to find myself.

My dear friend popped by on Saturday and cut my hair, that is falling out in patches from the cyber knife. It looks so much better but the patches are visible. I look and feel like a sick person at the moment. I feel pretty good but little niggles worry me. The slight headaches cause me worry. But that could be hunger and tiredness. I am really tired. I want to rest but I always find something to do. I have tried to tell myself to sit down but by the time I get to sit on the sofa it is almost time for Pete to return home from work.

Having things to do are a distraction but caring for myself is a must. My friend suggested starting therapies again and I have decided to make some bookings for treatments I have tried and haven’t tried before. I am quite excited and looking forward to having me time.

It’s Shrove Tuesday today which means Pancakes! Well It does to me. I can’t wait for my evening meal! Haha.I have to go back to the hospital tomorrow to get my prescription then I will be attempting to do less on jobs and more on me. There are many things to look forward to in the coming months I am hoping my health will be the top thing. The days are getting longer and thoughts of spring are really prevalent now. I love the lighter evenings…It just makes everything seem brighter and more positive.

Phew… Time for a cuppa.

Love and Light. X

 

 

 

 

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