Results!!!

It’s been a few days and I didn’t mean to keep everyone in suspense. I attended my clinic appointment on Tuesday fully expecting to get my scan results from the scans I had done last week.

Pete met me there and we didn’t really get time to talk or be nervous as we were called in straight away-thankfully. Sadly Prof Harris wasn’t there so we saw Nicky Levitt, whom in the past wasn’t my favourite consultant. She seems very airy fairy and sometimes a bit aloof which isn’t helpful when asking questions. But I have seen her recently and actually quite like her. I get the feeling they are starting to understand me and she said things like, ‘Someone like you knows their body, so you know whether something is right or not.’ This surprised me.

Anyway back to getting the results. As per usual she wasn’t prepared; the computer wasn’t on and she had to wait, then search for my results then get the printer working… It wasn’t a biggy so I just sat patiently.

The news was fast and simple really.

The MRI of the brain showed further improvements in the tumours and no new ones. Woohoo! This is a relief. It’s hard to know if I am getting symptoms sometimes with the little flashing light I get in my eye but this really did fill me with hope.

The CT scan showed further reductions in the tumour in my hilar lymph region and all other lymph nodes are now under a centimetre in size! Yes!

All lung metastases have remained stable or reduced in size in fact several lower lobe lesions have resolved completely. The rest of the lungs good with no effusions or pleural thickening.
The adnexal lesion, which they said could have been cancer in my ovary, is no longer there! Boom!
The T8 and T9 lesions are still sclerotic therefore non responsive.

Overall; a bloody good outcome. Of course I never seem overly excited or astounded. I am and was, thrilled with the news but I always hope for more and wish if only it was a bit better. What is making it work? Can I make it work better?

I knew there had been a good response and some reductions in my lungs because Prof Vogl had already told me but I desperately want those gone in my lungs. Now I know I can hear Pete crying out, ‘Some of them have gone completely!’ and yes I am chuffed to bits but what about the lymph nodes and those few big ones! I want them gone. If I could get rid of the lymph node tumours then I could have laser surgery by Prof Dr Rolle in Germany. With them in my lymph the doctor refuses to do the surgery.

My immediate thought was that I must also go back to Frankfurt and have more TACE with Prof Vogl. It clearly works. I am still reticent to go and have more infusions with Dr Seibenhuner but never say never.
So my next move in this game is that Peter and I are back to Germany next week. I am going to see Dr Nesselhut for my usual NDV, Dc therapy and hyperthermia with IL2, but this time he is going to be adding another drug to it and I have asked all my doctors and they all say go for it. Dr Nesselhut said not to have any chemo in the meant time. It’s a leap of faith as I believe in combining treatments but in order for this to have a chance then I will listen to the Doctors advice. I am filled with excitement and fear as I don’t want things to go in reverse but I have a good feeling.

We said to Nicky, that we had been told by the doctor at St Barts when we were there in October, that when things looked stable and as long as there were no new ones that I could have gamma knife treatment on the tumours in my brain. Quite out of character, Nicky picked up the phone and requested my scans be sent digitally to St Barts. She said she would get a letter sent to them too and make a request for me to have gamma knife ASAP. Pete and I were quite taken aback. I am not sure how quick a response we will get, if any. But I will keep on the case with the secretaries and make sure I get seen. It would be amazing if I could get those brain mets gone!

We discussed the fact I had postponed/cancelled Eribulin. She said she had a hunch that it would be accepted by NICE in a few months as it’s too good to let go of. This would be good if I ever need it.
So that’s that… another result and another push forward to making things even better.

This week has gone really quickly and it’s sad that Mum goes home on Saturday. We have had fun shopping and today we had our nails done. She has also been teaching me to knit too. I think I am getting there although reading patterns is like reading a foreign language. But I already have a repetitive strain injury! Haha! My forearm is huge and swollen and I am in a lot of pain. Can you believe it? Hilarious….

A first for Pete and I…..

This weekend we had a first. Peter and I went to church together for the first time. I haven’t been to church since I was a child and used to go to Sunday School and be part of the girls brigade.

Peter suggested we go and get to know our community. We leave so close to St Peters Church and we hear the bells all the time. I was nervous. The other reason for going to church and getting to know people and introducing ourselves to the vicar was because Peter and I want to be buried together in the local cemetery. Do you think it’s weird to be discussing and planning this? It’s not as though Ii think I am going to die and I certainly hope Pete doesn’t think he will either, but the surest thing in the world is that we will all die one day. If you don’t plan it then who knows how it will end up…

We sat right at the back of the church and sang the hymns, very badly and observed. I was a total chicken. I wouldn’t go and be blessed and clung onto the warm radiator next to me for dear life! Ha ha! I am pleased we went. The vicar was a lovely lady. I was surprised at how few people there were in attendance for the service. When I was a child I can remember my local church heaving and having no sitting room. Yesterday there couldn’t have been more than 20 people there. The vicar said that Sunday football takes precedence these days.

As we walked home we saw my mum arriving at our house. She has come to visit us for the week. We have days out planned as well as chilling at home. It’s always nice having her here.

I had my bloods taken on Friday and will be going to the hospital tomorrow for scan results. Being honest… I am dreading it, but if my current health is anything to go by then the results should be good… Everything crossed again… As always.

Until tomorrow…..

Never felt so grateful and thankful.. and I did it!

It’s been a week already and I cannot believe how much has happened and how I have felt. As I mentioned before we were going on a skiing holiday and I was very nervous as I hadn’t been on top form, to say the least.
Well I needn’t have worried. The day we travelled to our Austrian Alp destination everything went swimmingly. Flights on time, luggage came out first, taxi waiting for us and the weather was gorgeous, therefore the traffic was brilliant. Our hotel welcomed us and we immediately got our room. Then we organised our skis and sat admiring the sunshine and view. We couldn’t wait to get skiing the following day.

This wasn’t to last…. a blizzard arrived over night. The temperatures plummeted and the winds were blasting. But we were on holiday, we had to ski. I must be mad. But we went out in extreme conditions for two days on the trot. Our faces were whipped with the wind and I couldn’t see a thing. One by one the chairlifts were being closed and skiing became near on impossible. But I didn’t moan, believe it or not! I just thought it will be fine. Pete is an amazing skier and I knew he would take care of me. We had a few falls but nothing major. Bizarrely enough I didn’t have any sickness and my appetite was good. Pete was a bit disappointed as he so wanted to have a good skiing holiday. I tried to keep his mood buoyant by bursting into song throughout the day. My song of choice, ‘Do you wanna build a snowman!?’ from the movie Frozen. It stuck for the whole week. It was ok though, we had a spa in our hotel which had a really cool outdoor pool surrounded by snow…. We used the facilities to the max.

Tuesday everything changed. We were promised better temperatures, lighter winds and even some sunshine. And then every day got better. We ended up having four days of glorious sunshine and perfect ski conditions. I can’t remember being so happy. The resort was lovely and we skied up to 30kms some days. I was out of breath but mainly through exercise, altitude and the adrenalin pumping around my body. I cannot believe I could actually do it. I didn’t think I was fit enough and I certainly cannot believe that only the week before I was light headed and feeling sick. I laughed continuously for the whole week, mainly when I was following Pete down a mountain and he accelerated so fast! It was brilliant. With weather like that we got to sunbathe on deckchairs and take in the view too.

On the last day Pete decided we would tick off all the pistes on the map that we hadn’t done this meant doing the hardest runs. I’m capable of doing the black runs, which are the hardest, I just don’t have the confidence or guts usually. I did them with some difficulty but then came a run that wasn’t technically a run and before I could change my mind I was screaming my way down the mountain and scaring another skier to death almost. Once I reached the bottom I was shaking all over! I never want to do that again… Pete just said he knew I could do it….Hmmmm.
The very last day and the very last piste I cried….I’m such a softy but I really felt so emotional. I couldn’t have been more grateful and thankful for having had such a wonderful week with the love of my life.

Being back is a bit strange although I do love it here. We slept like logs on our first night back. That was one thing we didn’t manage very well whilst away. Both of us hardly slept. We would wake in the middle of the night thinking and having weird dreams. I have always believed that the mountains give off a strange energy and I have always had trouble sleeping there. Now we are home I feel great at night…haha. I love my bed, I love my bed, I love my bed!
In my sleepless state my mind was rushing all over the place. I thought a lot about setting up a charity called the Grant Foundation, as Pete’s father died of cancer and both Pete and I have had cancer. We discussed trying to set up a clinic where others could obtain some of the treatments I currently have abroad. Of course this needs a lot of work and research. We also discussed raising more funds and thought maybe a ski challenge would be apt. Maybe skiing across the Austrian Alps within a time frame….Gulp… This needs some thought!

The fact I have been so well it did make me wonder if I should return to work seeing as I am hugely capable of getting on with things as I showed in Austria, but  having spoken to Pete I have decided to really try to recuperate. It was only a few weeks ago that I was feeling dreadful. I still don’t know if my bloods have improved and this could take time.

So what’s in the pipeline?
Today I am off to hospital for an MRI and CT scan. It’s only been about 10 weeks since my last but I need to know what’s going on before I can start any other treatment as well as wait for my bloods and immunity to improve. I don’t get the results until next week.

I have messaged Prof Vogl and advised that I will need to wait for this to happen until I go back to him again. He has urged me to go back but then he would.
Good news is my weight has increased, from eating so much Austrian hearty food. This is essential for me and I have to keep eating!

I have decided also that I want to start having therapies again. I had stopped for a long time but I just didn’t feel like receiving any treatments. But now I am ready to be balanced and strengthened and pampered just a little too. Tomorrow I am going for reflexology. I cannot wait.
Here a few snaps of our Austrian adventure…

XX

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What a difference a day makes…. From no visibility to pure sunshine.

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A quick update….

I went for a blood test on Wednesday. I’m intrigued to know if my haemoglobin is improving. I’ve had a mixed week but generally pretty good. I’ve had bouts of sickness, vomiting, headaches and generally feeling rough but also many high points of feeling normal. It has been a battle trying to verbose the sickness and with a mixture of ginger biscuits, ginger tea, digestive biscuits and holding acupressure points I have been nailing it. I was recommended to buy a relief band. It arrived this morning.
It’s a bit weird wearing a watch type gadget that gives small electronic of pulses which runs down to your palm and middle finger. But it is working…

Back to the blood test. The results showed that my haemoglobin has risen to 10.1 but the calcium levels are too high. This is due to the calcium tablets I was given to take along side the denosumab injection for my bones. I think I will reducing the tablets down.

I don’t really understand all the blood results but it says my mean cell volume is low but my platelets look fine. I assume the drop is due to the treatments I had last week and only hope it gets sorted as soon as possible. By tomorrow would be good as Pete and I are going skiing!

We love skiing but I am full of trepidation. I don’t want to let Pete down if I feel rough. I have booked a hotel that has a spa though in case I need some time out.

There are some more small changes happening to me too… I sneezed this morning and  for the first time in months my ribs don’t hurt! Yay! The broken rib must have repaired itself at long last! Woohoo.

So that’s that.. A quick update.
Light and love… xxx

A week of treatment, bad weather and chaos!

Gosh I didn’t realise how long it has been since I blogged last. In my head I am journaling and blogging all the time as I have so many thoughts. It seems getting it down on ‘paper’ as it were, is not like it used to be.

I have had quite a good few weeks on and off. Ever since the weekend in Cornwall I have felt stronger and have been really putting on weight and exercising. Things were going well until I went to Germany last week.

It was a mixed week of treatment and chaotic events. We decided to drive to Germany as we figured we were going down to Frankfurt and then to East Germany. Not having really thought it through we set off Monday morning. It took us 9 hours to get there! As well as this poor Pete had come down with a fever and felt terrible. Within a day he had a massive cold sore on his face and then a really weird ankle pain had appeared. Since then his ankle is swollen and very sore. It’s a mystery but like a trouper he plodded on.

This was ok, as the next morning we didn’t have a really early start for Dr Seibunhuners except were given a room which couldn’t sleep in… It sounded like the lift was in the room with us. The next day we changed rooms…
I don’t look forward to Seibhuners. I don’t really like how it feels a bit unorganised. You’d think I would be used to this by now but I find it very disrupting. I had the usual hyperthermia, infusions of DMSO, B17 and artemesinin with IPT. This time my blood glucose went as low as 40. I could tell too as it had quite an effect on my bowels and I felt awful that night- flu like as before.

We chatted to Seibenhuner who is very hard to understand. He seems a bit crazy too…. We wanted to know about PDT and options for brain mets. We hit a brick wall really. I haven’t booked my next visit yet.
The next day after sleeping well in our new room we headed to see Prof Vogl at 8am. I got to see him first but as usual it was all very rushed. However the rest of the day wasn’t. I must have spent about 5 hours in total waiting around and that is not including the 3 hours of recovery time.

I sat freezing in a gown after an MRI for my procedure. I asked the Prof for lots of pain relief as it really hurt last time. He obliged but then it seemed he really did use all of his pressure and I have been left quite bruised this time. It’s that or I am sensitive at the moment.

After recovery where I felt off my head on the drugs they had given me I had to have a CT scan to check to see if I was ok and not bleeding. I sat for almost 3 hours waiting for a scan that took only minutes. I simply can’t stand it. I then saw the Prof again very briefly to tell me that the largest tumour has reduced again by about 10 per cent. Despite asking, he never gives me more information on the other tumours and the scan provided, I can’t do anything with. I asked about the brain mets and he said he could do TACE in the brain. Uh? How? But given very little info. He simply has given me another appointment to the same thing next time. I am feeling in the dark, despite asking the questions. How many treatments? My body has more than one tumour that needs to be treated. It’s a bloody mystery.

I have since getting back emailed many questions in the hope I will get some sense.
We left for Duderstadt to see Dr Nesselhut the next day. Arriving in the afternoon I had oncothermia, blood taking for testing before having more bloods taken for future visits and il2.

The next day I had the same thing except I couldn’t have the bloods taken as the results showed my haemoglobin is down to 8.9! I can only assume this is due the chemo in TACE. I saw Dr Nesselhut after and he was lovely as always. At least I get a conversation and compassion from him.

He told me of a new protocol combined with DC therapy that in the few people he has vaccinated has had remissions. He said he negotiated good prices and wants to use it on me next time.
I am currently trying to find out more about the drug he mentioned and will update you once I know more about it. I felt an instant rush of gratitude and felt quite overwhelmed. It was hard not to cry. Maybe this could be the hope and the change I need and then for all other TNBCers?

Having had a week away, Pete had said to book a few nights in Paris to have some fun after the gruelling week which had left me in pieces. I was not feeling well and really felt quite broken. Leaving Duderstadt quite late, the weather had become nasty, snowing heavily. Little did we know we were heading into traffic carnage. The motorway we headed onto had miles of stationary traffic and we luckily came off before we were stuck… Luckily is not the word I used when I saw the state of the untreated rural roads! Oh my goodness. It was horrendous. Both Pete and I were so scared especially when our car skidded all over the icy roads. In total there were 53 accidents in that area. The traffic on that motorway was more than 30 kms long and they were there almost all night. Poor things.
We spent hours getting only a few miles and realised we wouldn’t arrive in Paris until about 4am. Neither of us could do that. I called the hotel and pleaded with them to let the charge for that night go because of the extreme circumstances. The French guy said that he would and that we couldn’t check in until 3pm the next day. I thought it was a bit off but said fine. We then made our way to Metz and arrived late in the evening and found a hotel there for the night.

Pete at this point was wishing he hadn’t suggested the Paris addition to our trip. The next day we got up and headed to Paris, this time we were met with fog and snow and very icy roads…. Boo…
Arriving at the hotel we were informed that they kept the room for us all night and that we had to pay the full two nights stay. Honestly we just attract chaos and misery into our lives! This didn’t go down well with either of us and demanded to see the manager. I won’t go into detail at this point as to what happened but let’s just say I am still waiting for an email from the manager with a credit note for an extra nights stay as they wouldn’t give us a refund.
Hey ho… Moving on. We had a great time in the end in Paris. The Eiffel Tower is magical and the love and happiness overcame the events of the previous days.

Sunday we drove to Calais and got the train home. The weather was again very challenging but when we arrived home we were so relieved. I have since felt very nauseas and have been vomiting. I am gutted. I can only assume that it is the chemo and hope to overcome my light-headedness soon.

I have been emailing all the doctors giving them updates and asking advice. I am still booked for Eribulin later in February but really need to sort these bloods out and start to feel better first. I am doing what I can. I am eating the right foods (mostly) and have done some meditation and yoga and introduced green powders and a green juice into my day too. Let’s hope I recover soon! Please…..