Month: February 2017

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.

 

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

 

 

 

 

I look like a fat hamster…. And cute apparently…

But more about that later.

Since I last wrote my last blog so much has happened. We decided that I had to go to Germany for treatment on my brain. Despite having received an appointment to see the doctor and be considered for Gamma Knife in the UK how could I be sure that they would accept me and then act quickly? We were aware of the cost and although it was tough, we had to find the money to go and get these gremlins dealt with quickly. We drove to Frankfurt, but as usual Pete had fun planned on the way.

We stopped in Reims where all the champagne houses are in France, for lunch, then overnight in Nancy before setting off to Frankfurt on the Sunday.

Nancy is lovely and we had such a lovely stay in an historic and very regal hotel. We did some sight sighting and walking, and although brief it was such a lovely diversion and great way to make the most of our situation.

We arrived in Frankfurt and prepared ourselves for the next day. I had my usual treatment with Professor Vogl first thing on Monday. He said things were still looking good in the lungs and the main culprit has reduced about 15%. He never seems concerned with anything that isn’t really ‘active’.

Trans arterial chemo perfusion is the treatment that I had and have had many times.

As soon as I finished in recovery for three hours I had to get myself over to see Dr Wolff at the cyber knife centre which was on the hospital campus but quite far away. Luckily all my follow up scans and meeting with Vogl was fast tracked so I could get to my appointment in time.

The cyber knife centre is a separate entity to the main Frankfurt hospital but uses all of their facilities; i.e. CT scans etc. It’s very convenient. Dr Wolff is a very cool doctor who was very pleasant and talked me through everything I needed to know. He said I should have a new MRI scan which was organised for the very next day, the Tuesday. Things were looking good but there was still an element of uncertainty. Would I be able to have treatment?

The next day I had the MRI scan and then was told to head back to see Dr Wolff. He already had the scan results and images. Now that’s efficient. I wait up to two weeks to get scan results at home. He told me that the tumours had grown somewhat already in just a few weeks. Scary.

Dr Wolff sat Peter and I down and discussed that there were definitely only two tumours visible and not multiple metastasis and ‘too many to count’ as Prof Harris had told us.. I was pretty alarmed at this and hoped he wouldn’t turn me down for treatment. I was still very happy at being told there were only two tumours there. They were on the other side of my brain the opposite to the side that had previously been treated back in 2015. He said I would need to go and have a mask made, one of those masks I had for having radiotherapy last time- the tight mesh plastic thing that gets strapped over your face to the bed so you cannot move. I was a little worried about this as I was having difficulty breathing.

He explained the dangers of having this kind of treatment such as getting seizures due to the fact I have had whole brain radiotherapy before but I was well aware of what could happen and was willing to take the chance.

He said I could have a day off on the Wednesday and that on the Thursday he would treat me with cyber knife and they would call to confirm the time. In the meantime, he would do all the planning pictures for my cyber knife treatment on the Thursday. He said we should stay there until Saturday.

We had only booked three nights at our current hotel so tried to book until the Saturday. We could stay for a further 700 euros! What! No way. Frankfurt has huge conference centres and it turned out that that weekend was the annual Christmas Fair conference where all the retailers by the next best thing for this Christmas coming…. Really? Well best to prepared I guess!

We decided to find somewhere closer to the hospital and booked in for the three nights.

Wednesday was a much needed day of rest. The cold I had was so debilitating and I couldn’t hear out of my left ear. I was so congested and still am! I really hoped I would’ve felt better by now, but I guess the stress had caused my immunity to be battered and I just cannot fight it off.

Thursday we headed back to see Dr Wolff and the day of the actual cyber knife. It’s a very relaxed atmosphere in the cyber knife centre. All staff wear casual clothes rather than medical type uniforms.
I was told it would take 2 hours. I got a little panicked but they said I could stop at any time but it would be good to do it in two halves and have a break in the middle. I was happy with this.

I tried to relax during the procedure and not cough and luckily for me I could at least slightly part my mouth and breathe. My nose was never going to work! They played lovely relaxing music and the machine just whirred around my head. It’s painless and no need for any screws to be put in my head like the gamma knife head frame. Dr Wolff has said there is no difference in the quality or success of having cyber knife or gamma knife they just perform in different ways. Cyber knife has lots of radiotherapy rays and moves over your head giving lots of rays to the tumours specifically whereas gamma knife is pinpointed on the tumours. They are both as good as each other. Halftime came and I dashed for a toilet break then straight back on the bed with my face mask back on. The second half went really quickly.

And then it was done. Up I got and Dr Wolff said I could go home if I wanted the very next day. Bonus! Phew the tumours had been zapped and I was finally done. A lot of worrying but such a successful week.   He just said I needed to have a scan in two to three months’ time to see if the treatment had been successful.

I have to continue taking the steroids but hopefully start reducing them more. Music to my ears although the oedema in my brain may get worse initially due to the treatment I had just had.

We went for a lovely lunch and then headed back to the hotel. The entrance to their car park was narrow but we made it in gingerly. As I got out I noticed that our tyre appeared flat. Oh no.
Pete had a look and saw that there was a slice of tyre missing and wondered how it had got there as it had literally just happened? On investigation we noticed the entrance to the hotel had kerbs either side and are covered in steel plating. One area had lifted and was sticking out like a sharp knife. Oh no!

We got straight round to a local tyre centre and they said they couldn’t get a tyre for us and even if they could it was too late for tomorrow it would be Saturday. Boo, we really wanted to go home. We drive an Audi, a German car. The tyre guy got off the telephone and told us they couldn’t get us a tyre until the following Wednesday! What? We were in Germany in a German car and they couldn’t get us a tyre?! Really Oh my goodness. That was it! The final straw. No more stress or complications please! I couldn’t believe this was happening to us.

I got on the telephone and called the breakdown company we use to see they could help. They said that they would call their suppliers in the area. They called back and said we had already called the same suppliers and there were definitely no tyres available….Oh…. no…..Again…

Sitting in our hotel room we just didn’t know what we were going to do. I decided to call the breakdown company again and ask them what would they suggest we do? The lady on the phone said that she located one tyre. In Bonn- two hours away. But it was only a summer tyre. Summer tyres are illegal to drive on in the winter in Germany but were willing to take the risk. Still being Thursday we decided we had to get home. First thing Friday morning we got up and put our spare tyre on and headed slowly to Bonn. The autobahns are scary at the best of times but going 50 miles per hour is even scarier. Going steady we made it to the garage where Mr Johren was waiting for us. He immediately fitted the summer tyre and didn’t mention that it was illegal, thankfully. He had been told of our situation by the break down company and said he would’ve found us a tyre anywhere! What a nice man…

We hopped back into our chariot who now didn’t need to limp along at 50mph and we went as fast as we were allowed to the Eurotunnel in Calais. I booked the train on the way from my phone and luckily they had space. We got there in good time and were put on the earlier train… Bonus. Getting home was the only thing we both wanted so much. It was actually quite a pleasant journey.

Back in Blighty Pete still had another two and half hours to drive until we finally made it back to our front door. He drove for about ten hours that day. Incredible. I love our road trips but this one was not what we had expected. I don’t know how Pete does it.

What is it with us? Why is nothing ever simple?

Yay…. Home. We got home mid evening and unpacked and slipped into our own bed at last.
Then… Pete became ill. He had so much pain in his bones and had a fever… oh no, he had got the flu. He simply couldn’t be pushed any further. The stress, worry, chaos, lack of sleep, absolutely everything had just been too much for his immunity and finally his was ill. Well luckily we had the whole weekend at home now, getting home a day earlier was such a bonus. Poor Pete was sick as a dog all weekend and in incredible pain but we did relax and try not to do anything.

It was so good to be back.

The week flew by and then Friday 3^rd February was here. The day to go to St Barts hospital in London to see if they had agreed to treat me with gamma knife. I know I had already had cyber knife but I really wanted to go to the appointment to know if I had been accepted for treatment.

I waited for about two hours to be seen. Whilst waiting I received a call from the secretary of the actual gamma knife centre which was on campus at St Barts. The lovely secretary told me an appointment was available on Monday? I asked what for?  She said to have the gamma knife treatment. WHAT!?!

I stuttered and said that I was currently sitting in the clinic waiting room for my appointment to see Dr Plowman. She said, ‘Oh well you have been accepted and we can do it Monday’. In total confusion and a sinking feeling at the fact I had just had cyber knife costing an awful lot of trouble and money, my name was called. I was met by Dr Patel, not Dr Plowman, who I had seen originally and who makes all the decisions. Dr Patel seemed lovely. She was very efficient and took lots of notes about me and then explained that they had discussed me in their departmental meeting on Monday and that they had decided that based on the fact there were only TWO tumours present in my scan (not multiple mets) and their size was within the guidelines, that I had been accepted for gamma knife and they would get a date booked for the procedure as soon as possible. I said that the last time I had gamma knife it took four months to have it. She said things had changed now and that the longer wait would be a further two weeks probably… She didn’t know that I had already had a phone call!

During my time with her I told her of the horrible ordeal I had received with Prof Harris and what he had told Pete and I, that I was unlikely to be accepted for treatment and that he had cancelled my MRI scans to continue having them every three months until April 2017. She was shocked. I didn’t want to tell her at that point that I actually wouldn’t be able to have the gamma knife because I had just had cyber knife. (You cannot zap the same tumours twice.) But also I didn’t want to be thrown out of the loop down there. I wanted to stay and be their patient and ensure that I could have gamma knife if more gremlins arose.  I wanted to talk to Peter and tell him everything first and then make a decision on how we would come clean and tell them the truth.

Pete was unsurprisingly, hugely surprised when I told him what had happened that day but immediately said, that we still did the right thing by going to have cyber knife when we did. The tumours had already grown and how were we to know that they would accept me and that treatment would be that soon especially based on what Prof Harris had said. If we took the risk it could’ve been deadly. I still felt gutted. We really could do with that money and no more stress or agro.

But that’s life isn’t it? At least I know I have had treatment and now the tumours should be going.

This left us reeling and we decided to write to Professor Harris and have it out. He simply had been disgraceful and unprofessional and to be honest a complete liar. He gave us no hope and caused so much distress too. This is so hard on Peter and I as everyone can imagine and know.

 

The very next day we wrote a suitable email to Dr Patel and the Gamma knife secretary and I reluctantly pressed SEND. By the end of the day I had already received a reply from Dr Patel and the secretary. It was absolutely fine. The secretary was very empathetic and said that if I ever needed to have gamma knife or need to have appointments again to contact her directly and she would personally deal with it. (Please don’t leave!)

Then I received a phone call from Dr Patel. I never get this from my local hospital! She said that obviously I had been removed from Dr Plowmans list but asked would I like to have my MRI scans and further follow up appointments there at St Barts? YES PLEASE! She said would make that happen and could only apologise for my recent experience. WOW.. this was such good news. I was being looked after.

What has happened since then? I sent my email of discontent to Prof Harris and waited for a reply… and waited. Finally, I received a letter yesterday. He apologises profusely but tells me the events in his eyes. So many lies. Pete couldn’t believe it. Needless to say he will be receiving a reply with the FACTS again and telling him he isn’t telling the truth at all. But thanks for apology.

During the past few weeks I decided that I would get on the case and book my next scans needed and then Dr Patel called again and said I would be booked for an MRI and an appointment with her in April. Perfect. She is so lovely. I am so happy with this result.

So how am I feeling? Unbelievably I still have this wretched cold but it is sort of improving. My ear is slightly better but I am a fat hamster! Despite reducing the steroids, the ‘moon face ‘effect is still occurring. Pain at night has improved immensely to almost every night of no pain. Sleep though hasn’t been good and I’ve barely got four hours a night but then I have six-hour night and I feel a little more revived. I have put on a stone in weight (Clothes are tight and some do not fit. Argh!) and the drugs make me frantic but that’s a small price to pay if I am getting better.

I have been on fire though! My mind is going at a hundred miles an hour and my to -do list is long but I am flying through the jobs. I have been having a lot of little jobs being done at home. I really want to feel like things are getting done and have some control in life and feel like I am progressing with something.
We also decided, despite this we could go and have a look at another house to move, to be nearer to our grandson and Pete’s’ kids and work. It was almost a dream house and on the day I told the Estate Agent we would be putting our house on the market. We wanted it.

On arriving back at home we started comparing our house to the new one. And thought, wow our home is really cool though…. we had some questions and thoughts to air with the agent on Monday and take our time to decide.
That night I couldn’t sleep again. I decided to have a cup of tea and sit downstairs so as not to disrupt Pete. But I had been mulling things over… I had to say something. And then said, ‘I don’t want to move house in the dark. There I had said it. I listed off some of the reasons; our house was actually bigger in many rooms, we had just had our patio done, we had invested so much love and time into it. It’s such a cool home. The other house had too many flaws. And then Pete pointed out it would be too much stress, too much upheaval and we needed calm in our lives not more trouble. I completely agree. We were sad about not being closer to the family but hey-ho, we would have to drive a little longer to see them. No Biggy. Phew. I told the agent on Monday. So here we are.

What’s next?

I fly to Frankfurt on Monday to have treatment with Prof Vogl on Tuesday morning. I will go on my own this time. Pete needs to work I don’t want him to have more disruption and it’s such a simple trip. I am an adult after all! I can do this. I will return on Tuesday evening.

Then today I received a letter with appointments for CT and MRI scans for the end of March for my chest, abdomen and pelvis at my local hospital. (Keeping an eye on my lungs etc.) It seems that things are becoming less of a challenge with arranging things for me there.

I have decided that if Prof Vogl says there has been no improvement since last month that when I return I will have chemotherapy, Eribulin, for two cycles and then have a scan to see if it has worked. As much as I do not want to go through systemic chemo and put my body through further strain, it has had really good results for triple negative breast cancer. And it’s free. I can stop at any time. It’s on the NHS and would be local…

So right now. Jobs are getting jobbed (done) and I am just trying to get healthy and feel better. I want sleep to improve, the weight to leave my body and face and stop feeling like a hamster every time I see a reflection of myself!

We have a great weekend planned ahead of us with friends. There’s so much good in our life.

Yesterday was Valentine’s Day and we didn’t do anything flash or organised. We simply had our tea and cuddled. The best Valentines to have… I hope everyone elses was filled with some kind of love.

Love and Light…

XXX
Mr Johren