My Girl Lollipop…. Fa la la la la

‘My Girl Lollipop…’

This is what I see when I look in the mirror! Ha ha.

A very slim girl with a puffy round face. It’s funny. I am not complaining! It’s just strange looking in the mirror. Pesky steroids.

What’s been happening you ask?
Things have been very up and down recently and I have been, for so long to blog but even when it’s my ‘One Thing’ to do it doesn’t get done due to the other really important stuff to do; like addressing doctors by emails, attending appointments and generally being on top of everything. In my eyes that is brilliant in itself. I am able to do things, function almost normally… almost.

The steroids are the biggest issue although, I have started to reduce them. I have now been told to reduce one tablet every 3 days and if symptoms become bad again then increase again. Great stuff. Apart from sleep deprivation and a very weird food thing going on, I’m ok. I have got this little puffy face that had gone but I heard looking like a little chipmunk is all the rage these days!

There is a plus side to being awake in the middle of the night is that I get some great ideas and plan the following day. The downside is I am like a zombie the next day. You would think I sleep like a log as I am so tired, But nope. Today for example I am in a daze desperate to feel rested and normal
I am now taking a sedative to help.  It can be good good but I am like a little bit space cadet in the morning. OK it takes me longer to get going but who’s rushing?

Prof Harris appointment
Last Tuesday I had an appointment at my local hospital for a clinic appointment which Prof Harris takes. I was told he wouldn’t be there but he was. Normally I would dread it but really what’s the worst that could happen? Turns out nothing……

Face Plant
Now rewinding slightly, some may have seen on social media that the previous Saturday 3 weeks ago, whilst walking through a local town, feeling quite confident with my walking, I stepped over the kerb- yep, all fine.

Then immediately caught my foot on a broken manhole cover and went face first onto the ground!
I screamed and landed, without putting my arms out to stop myself. Pete grabbed me immediately off the ground by my shoulders, to see a very bloodied and broken face with blood that wouldn’t stop gushing! Oh, my it wouldn’t stop. It was carnage. Passers-by helped with Teddy, our puppy, who luckily had run to my side and not in the road, as I let go of his lead and I was  sat on a bench outside a closed restaurant, trying to recover WITHOUT tissues.

The kindness of strangers is amazing and passers by gave me packs of tissues to try and stop the bleeding. My clothes were covered but I was slowly getting there, when Pete’s son and friend turned up with his car and drove me to a local friendly pub.
I walked in, waving my arms asking for scissors for the plasters I had been given.
They were having morning meeting but a lovely lady called Rebecca ushered me into the toilets to clean me up. I must have looked a sight. I got practically got naked as Rebecca my wounds and stuck plasters everywhere. The bridge of my nose, my chin, and my lip were split. It didn’t matter I wasn’t bleeding from everywhere.
I went back to the bar area where it was now open and Pete was sitting waiting to see me, with a brandy for me, to calm my nerves. Just what the doctor ordered.
What a nightmare!
Don’t worry I will be more careful in future.

Turning an unfortunate negative into a positive, we had a lovely tapas lunch, then home to the sofa, to take it rest up.

It’s been 3 weeks and I am still bruised. I have healed well, with only a black eye and a broken nose .

..Right back to the appointment with Prof Harris. He said he wanted to transfer me back from St Bart’s hospital, where I had previously had been having brain treatment, to our hospital in Oxford, for brain treatment. Yes, please but what can The Oxford Churchill Hospital, offer me?
He told me that our hospital has been setting up a treatment centre for brain treatments!

Wow, this was a huge development. He would send details to my email. If this did happen
his could be great if it happens. Nope- I’m not a Doubting Thomas!

Next, we discussed my face.
I said ‘Surely you should book me an emergency MRI for my brain that very week?
He said that fall could have could have killed an elderly person and agreed to ask radiology to get it done by Friday.
‘Yes, he agreed?!’ Uh, I did not expect that response. But cool!
Ever doubtful I was anxious that this would not happen.

New Secretary
Prof has a new secretary ,who I decided to introduce myself to, by email. My oh my, this lady is so nice, helpful and totally understands my situation. She has been brilliant and she got on the case and ensured she got the MRI it got booked! I cannot thank her enough.
The next morning, she emailed to me say she would chase the scan and she did.
I got an MRI booked two days later at 9am! I had it last Friday- 2 days later. Woohoo!

Not only was this amazing, but the next challenge,  ( here is always a but.) was to get the results too- on a disc, which would be unprotected; that I could simply pop in any computer and it would work; As well as a written report.

The radiology department said they could do it but I would need to pay a fee. That fine.
Then Sabrina received confirmation from the staff there I wouldn’t need to. They would do it for me! Yay!

Typically, I arrived Friday and mentioned it to the receptionist, who said she didn’t know anything about it. They were playing hard ball. Boo.

MRI Scan
I went into radiology  for my scan and met my nurse, Susan Cross. I have to big these people up!
She was lovely, reassuring and she had read all of my notes.
She prepared me for the scan and in I went to the scanner. When I came out, Susan, the lovely nurse, said she would make the disc for me, there and then! Just wait for 5 minutes in the waiting room.
Uh? I couldn’t believe it. I waited for 5 minutes, she walked out and me a disc and wished both Peter and I, all the best. I cried….. Life doesn’t have to be such a struggle. Happy, happy, happy.

As promised, no encryption or passwords stopping me and my data, my disc.

Apart from getting the disc, I now had to get the written report too.
Not worried much… Um..That too was in my inbox by Tuesday! Boom!

Thank you to Susan, and the other members of the department that helped and Sabrina, Prof’s PA. You have restored my faith in humanity and I couldn’t ‘thank you’ enough if I tried. Hugs all round, and High Fives!

Peter dropped me back at home and went to work. He converted the disc to an email link and it emailed it to all of the doctors in Germany. My cyber knife doc got it too and replied with his thoughts a few days later.

Cyber knife doctor, Dr Wollf said;

So here goes;

The ones treated that he in January do appear to have slightly enlarged, but feels that they are dying, turning necrotic. Tumours change a lot even when they are dying too.

There a few two small new tumours on the other side of the brain, now too.
The predicament is,’ Can I have any more treatment on the head since I have had whole brain radiotherapy in that area? We had been told I that would not be possible by the NHS.

Dr Wollf, my cool German Cyber doc, replied a few days later and said ‘Yes I can treat them for you with cyber knife!’  Great.. at least we had an option, but it would cost more money.
He has provided me with treatment dates, that sadly I wouldn’t be able to attend as I will already be in Germany visiting Dr Nesselhut for immunotherapy plus infusions of drugs, unavailable here. So if I do go I would have to wait.

Prof Harris cont..
Back to the Prof. He has transferred me back to Oxford and referred me for treatment on my brain and they are going to be discussing me at their next meeting on Tuesday-Today!. He says I could have an appointment for treamtent, within two weeks, if I am accepted. Ok let’s not get too excited.  They have not said ‘Yes’ yet plus I will be away if an appointment did actually arise in two weeks. Um, I will be away.

I will wait for the reply. Fingers crossed, I am accepted and if by any miracle they do give me a date that is whilst I am away I could do the following week, when I have returned from abroad. It’s only an extra week.
Now, I am slightly nervous and I hope and pray the tumours do not increase in size, during the time I am not having any treatment on them, which could dash all of my chances on my return of having treatment, but they are small and hopefully Dr Nesselhuts’ treatment will also work, having an impact.

Dr Nesselhut called
Speaking of Dr Nesselhut, I get a call from from him, suggesting we do the treatment that I usually have, in my arm causing minimum disruption, directly into my carotid artery to my brain instead. WHAT?!!!
Has he gone mad? I contacted Pete and we both agreed this would be insane. ‘No’, is the answer. Phew.

Lungs
My lungs are also a concern, since apparently, they have also have changed and a few tiny new ones are now present in my left lung, which has laid dormant for ages.

So, Prof Vogl, where I have TACE for my lungs, was my next port of call.
I don’t want chemo drugs going into my body when my Hb are not at their best and I really need to stay well. I had already cancelled my next TACE with him in a weeks’ time.

He replied in his usual funny short manner and said that we could do bland embolization- no drugs. Great, an option but not this month, if at all needed. I just have to hope Dr Nesselhuts’ treatment will work and reduce those little blighters.

Seriously this cancer is trying to take me down. Paahahahahahaha.
They don’t know the powerhouse that is Pete, my Bear, up all hours researching, contacting doctors, breaking his body and mind- for me. I can’t ever thank him enough. But, he is my One, and he won’t stop until we know there is really nothing left to be done.

 

Lisa and the Macmillan Team and Sobell House
Then, there is my lovely Macmillan Nurse at Sobell House, who has been a Saviour. I can contact her and anyone in the team anytime, about anything. They are a breath of fresh air. Such comfort.


Blood Clot in vein
I have forgotten one thing. The blood clot I was told that is in is the SVC.
Its small but Prof Harris advised it could be fatal and explained what I would feel if it became a problem. If it is a problem then get straight to casualty. So, that is a small stickler, but trying not to worry.

Episode
I had a weird episode one Thursday evening, after our evening meal. I felt stuffed, then passed out on the sofa. I felt wasted and went to the bathroom. I was awoken by Pete whilst I was leaning on the wall, talking gibberish. I don’t recall any of this. Pete carried me up the stairs, where I slept immediately. In the morning, we were puzzled and I felt really scared…

The next day, I got on the phone to Lisa, my nurse, and she said I needed a glucose blood test. Sometimes steroids can cause diabetes! Oh my goodness. What else can I face? She said not to worry, she would organise a glucose blood test.
Organised at the GP, I went the following Monday and she called the next day to say it’s fine and I’m normal. ‘Normal’, I wouldn’t say I am normal but that was great news. Ha ha. So maybe I just ate too much and was exhausted. Who knows? I hope it doesn’t happen again.Eek!

 

So, there it is. My update and all that has happened in one month, July to now, for Peter and I.

 

Our Dragons
One last thing I wanted to show you.

Some of you may know of the dragons that sit either side of our drive, Puff and George; that I decided to start decorating monthly, on events like Breast Cancer Awareness month, Christmas, Easter, rugby events and so on.  thought it would be fun and a bit crazy, to brighten and cheer up our village, make people smile and we have, I have heard the children and most adults, smile.
I decided to do some summer holiday ones, despite, the awful weather we have been having.
Hope you like them!

They say;

Unicorn magic, rainbows and love…

Let the sun shine from up above.

Over and Out…
That’s it. I got to finish this update, eventually.
Now where’s the sunshine gone? Cooeeee!

Much love, hugs, massive respect to God, the Universe and my Angels, whom are protecting me.

Hugs, light and love from Me, my big furry Bear, Pete and Teddy, our gorgeous puppy and Kitty, our long standing, disgruntled but We love her, Kitty.

Mwah!

 

 

 

 

 

 

 

 

 

Sometimes you have to sit back and say ” You couldn’t write this if you tried”

Sometimes you have to just sit back and say “You couldn’t write this if you tried”.

Its been another fierce two weeks and although the strawberries aren’t quite over it feels like another shift in the Universe and being honest both our strength has failed. We have had a lot of tears and talked earnestly of things that until now have been taboo.

I guess you know the back story since January .. Oooops we didn’t bother scanning your brain even though we were specifically instructed to ….oh dear you have multiple brain tumours that make up two clusters and we cant even work out how many there are, so sorry but you will die in the next 6 weeks and there is nothing we (the NHS) can do.

So off to Germany and cyberknife, only to return £15,000 poorer, to a letter saying actually we can’t do this for you – Ooooops again. At least we can have the post procedural care on the NHS. March lost scan (admin error), April lost scan (cover attack), off to Germany for a scan then. May the scan you have had is inconclusive, come and have one here. June-we don’t have your scan yet but we’ve looked at the German one again and its inconclusive so come back next week for a PET scan.

Ooooops you’ve been booked on a day when we only do dementia scans .. sorry its a 6 hour round trip and you are literally filling the car with vomit whilst screaming in pain but never mind, we don’t actually care that much. But we will scan you anyway. Then come back next week in the vomit pain wagon for Clinic.

That was a well worth while trip… “We cant actually tell you anything because our MDT is on Friday but I think your tumours are active and you are going to die quite soon, enjoy the drive home” .

Soooooo this brings us to the “call” yesterday. Very specifically we asked, please call Peter. Of course they called me – AAAAAARGH, so redirected to Pete, after they 2 weeks of death row, we are told ….

NB If this was happening to a repair to your cooker by now you would be in tears and ready to kill, so good job this is only my death we dealing with.

…. “It looks as if there is activity, so we suggest another scan in 6-8 weeks and there are another 2 very small tumours on the other side of the brain, that we wont treat. that’s not because of resources or cost its purely a clinical decision.”

Let’s digest that:

The wrong scan was used so its not possible to differentiate for sure between brain activity and tumour activity (even with the NHS top radiologists, as we were told)
Its a “clinical” decision only – but we could pay to have this done privately
When unsure the best thing to do is wait 8 weeks so the patient is dead

Bear said she sounded bored, tired, unhelpful and without any focus and he told her so, her reply was that she was sorry it wasn’t good news – light the touch paper! She had a frank explanation of the realism we bring to canSer and death and that far from being sad, we are just angry at what is amounting to professional negligence with every additional straw adding to the load on the camels back.

To compound this while Pete was on the phone to St Bart’s I had a semi hysterical call from the Churchill from a Doctor I don’t know, saying “You have an embolism near your heart you are going to die, and your platelets are dangerously low, you have to drive to the hospital now !”

I tell her I cant drive and she said, “Why?” – SERIOUSLY Duuuhhhh maybe brain tumours would be a tiny tiny hinderance?????

I can’t deny I panicked and finally fell apart! Bear called to try and gently give me the news from St Bart’s and all he got was a screaming blubbering mess – he immediately left work to get home.

And this is where the story turns and shows just how simple it is to help terminal patients.

My new lovely nurse liaison Lisa from Sobell House, stepped in and said “Leave it with me”. She called back really quickly and advised that “Yes” there is an embolism, and was I short of breath or in pain – as it was no to both she said to come up for tests the next day! Relief and although my platelets were at 54 they had been 45 so they were going in the right way. Thank you Lisa, I nearly had a heart attack from the first call and you saved me.

So Bear took me up to the hospital yesterday (he loves spending the only days he has off at a hospital – NOT) and I was immediately “tagged”. I started to get that sinking feeling again and put my protest in early! “I’m not staying here”.

Then my second savior – Rita at Oncology Triage! She confirmed that my platelets had now risen to 94 and that’s not far off normal. She did outline how I should stay all day because “A Doctor” would need to talk to me as the treatment for blood clot cannot be admitted until they are happy the blood is right, but then smiled and said, it will take a long time, you live close, Ill call you, with news”.
a
She did call as promised but as of yet there is no news.

We need to deal with the brain, urgently. The NHS cannot get us the scan before 2 weeks apparently, but we are trying, then we can work out our options, but until then we try not to worry, focus on all the good stuff, love a lot and spend time with our friends. WE LIVE.

Lots of Love to you all and thank you for all the love you have given me (and Bear) this year – I wont give up, so make sure you don’t either.

Tuesday 25th July

Since then I have had a result from St Barts. Pete fought and finally was put in contact with a little saviour who just sent  links to all scans. It’s all too technical for me but we do have the files ( I think ) and we have emailed Germany. I hope they can open the relevant ones and get back to me asap. That’s all we can do. This is big news isn’t it… I am not going to say Yay or anything. We are still not there.

Right, that aside I could go on about how awful it has been and so on, but in the nature of trying to let go and move on things have been good for me over the last few days.

Learning all the drugs to ease pain and everything else that its making just a little annoying and harder; such as stomach issues, infections and most of all pain and keeping the symptoms at bay in my brain so I can at least walk straight! xxx

I am a much improved as you can see I am actually typing now! And I want to rather than lie down. I will be honest though. I have never felt so terrible, low and like this is the ‘end’ like I have so much in the past 7 months but more so in the past few weeks. There have been so many factors bolstering this improvement.
All I want and need to fight is to be healthy. My body is failing me and I can’t cope with that. I have got to points where I think it is all over. But then who am I kidding? I ain’t going anywhere without kicking and screaming. (Lets face it I can run away, the steroids are weakening  my legs. I can barely climb the stairs! PlusI have no dignity. I will miss out on too many things! And I don’t ever want to leave my Bear. I have too much to live for.

My current state is about 3-4 hours of sleep a night followed by kinetic thoughts, all pretty positive, never the less, lying awake almost all night. This also makes me very emotional. I cry at happy, sad, and nothing. Poor Pete cannot leave the room without returning and me being crying about something!

I feel more stable now because I have been keeping myself busy and getting things done! It feels good, but I do take it steady and will be sitting relaxing very soon.

The support I have received is off the scale and I have seen friends and its starting to make me want to live even more. I am excited to see people and its been so long since I did that.

My weight loss and lack of appetite is being stimulated now by steroids so in fact I have started eating. I have to control it or else I will be oozing again. I don’t know whether to wear size 8, 10 or 12. I don’t care. I feel like my body is healing and maybe my mind too.

My life mantra is ‘keep things simple’. All I need is routine and love.  I will have that again.

Today Lisa my nurse came over and told me the doctor says I can reduce the steroids starting tomorrow. Yes, Yes, Yes! That is great….

Until next time….

I face planted on the mountain and ended up with a mouthful of snow!…

The last few days have actually felt like spring has sprung. The sky has been blue and the flowers are well and truly blooming, the birds are noisy in the mornings and I love that. I love going to my bedroom window and seeing what the Universe has on offer today. I thank God, the Universe and my angels. always.

Hopefully I have already had a lovely snuffle with my not so friendly cat, my Bear would’ve left (now not in the dark) I love the year progressing and the days getting longer.

The lovely bright spring days have me in a quandary though, as all I want to do is go outside and feel the warmth of the spring sun and take it all in. The smells, sounds and the colours. Despite having so much to do out there I can envisage what a wonderful time we will have in our garden the year ahead. Sitting on our new patio made me smile and imagining the BBQ’s yet to come with the Bear being chef.
I like to make the excuse that I have to go outside for my vitamin D but there is so much to be done.

I have been honoured to be outside for most of  last week, not always in the sunshine but definitely in fresh air. Nothing is fresher than up a mountain. It’s a long story but we had a booking in Austria by mistake (a good one to have and tying it in with medical and business always helps) We drove, despite our nightmare in January, and made a few stops along the way. One was at Lake Constance where the Zeppelin Museum is by chance. It was so beautiful and the weather so mild. Itwas dreamy and calming.

MPYM4236

 

IMG_9476

 

 

The mountain in Austria had mixed weather for us, so not so calming. When we arrived it was very windy. Then the following days were a mixture of blue skies, bad visibility, lots of snowfall and rain, and a good dose of sunshine too.

IMG_9508

 

IMG_9544

 

It made for a very interesting trip as well as having the thoughts of how badly it went for me in January. This time was different. The first day wasn’t great, mainly due to the wind having most of the lifts closed for safety, but the rest of the week turned out amazing. I had plenty of falls, but my confidence grew and I was back Baby! I had an epic fall one day where I face planted the piste and ended up eating snow! Haha. Thank goodness for other skiers picking me up.  I fell quite a bit and ended up with lots of bruises- that’s not a surprise at the moment due to my bloods being low.

Most of the week my legs were in agony mainly due to lack of exercise and full of lactic acid and neither of us slept- we think due to the energy in the mountain. But adrenaline kicked in every day and somehow I managed it and felt really proud. The last day I really let loose and it really felt like the old days… and maybe I was overly confident as I was skied really fast at times. It was exhilarating.

Back in a flash, we wish it could by a click of our fingers but sadly it was more like 10 hours of driving, and back to home life already. It’s very busy still and I now wonder how I  ever skied so much last week.

Daily I feel very tired, despite sleeping reasonably well, but I feel like I coming down with flu or a cold. I have shivers, fever and generally feel run down. Luckily paracetamol helps but I am worried that taking too many isn’t good?

I have a lot to do, admin wise and around the house but I just don’t have the motivation.
Now that has changed since I was taking steroids. I stopped taking them completely over a week ago and have noticed a change in my appetite (it’s much smaller) I also don’t feel frantic and that means I sleep better but also the thoughts and motivation has changed. Its’ really odd.

Physically, I was hoping, would change really quickly too, but I have only seen a slight change in my face but it still remains puffy and some days a little sore . My body is still 2 dress sizes bigger than before and I can’t blame all that on steroids. I can for the reason I put on weight but not for eating all the pies! It’s really odd seeing myself as a bigger me. I have nice big booty again. I had lost that from being so slight before. My belly still gets very uncomfortable and bloated, despite me not eating sugar, or having much dairy. My calorific intake has reduced massively purely by changing needs and wants. I am trying to eat healthier it’s just what my body wants now.

I do feel quite down in the mornings. I think because I feel rough and I am frustrated with myself. I want to get out of bed full of energy. This is hampered by the fact that my haemoglobin is down to 8.9 again. It should be between 12-15 and last month had increased to 10.2. I know it’s due to treatment but I really need to get healthier and stronger. I am doing everything I can but I think I will just have to persevere.

 

There have been a few messages that I have received recently from other survivors that have also been treated in an unsavoury way by their NHS oncologist. I am surprised they can get away with it and refuse treatment. I know they have to be realistic and are saving money but I bet if it was their family member or themselves, it would be a different story. My advice is if you are not happy get a second opinion and that can be at a different hospital. Also do not let them speak to you in a manner that upsets you. You can make a complaint or call your secondary breast care nurse. They will certainly address it for you.

Remember the NHS cannot and should not; ‘Make a decision about you, without you.’ They may need reminding that you are not a number but a human being with feelings.

 

I have had lots of friends popping by recently and yesterday my good friend popped in and gave me another haircut. Last week my bald spots and thinning from the cyber knife got worse and I felt really uncomfortable. Bear suggested we shave it off but while I can make some sort of funky style out of it, I will.

This week I will continue to get better and I am really looking after myself but I really need my rituals to be firmly in place. I realise that doing those things first thing in the morning may no longer be for me.

I have reintroduced having lemon, bicarbonate of soda, olive oil and water as an alkaline drink in the mornings.
I am taking supporting supplements.
I am eating cleaner, and less dairy, sugar, meats and bad fats.
More clean greens and unprocessed foods, made with love (now that’s really important!)
No alcohol (except the odd G and T at the weekend- it’s almost medicinal!)
Plus checking portion size.
I now need to slot in the exercise.
I am still trying to research my next option for treatment mainly by the Bear sending me links to things he has found. I am still very worried that I have limited options. No matter what I try and tell myself, I can’t get out of my head what I was told in January. God, I need help! And I do have lots of help in so many ways and so much support but it doesn’t stop that niggle and that worry.

It’s hard for Pete too. The slight mention of a headache, neck ache or anything really, he is very concerned that it’s cancer. I try to play everything down because I am a vocal worrier and mention every pain, discomfort and niggle. That’s me. I share everything, which isn’t always a good thing, especially for your loving fella who just wants you to be happy and well. If I listed everything that is not right at the moment, you’d be reading for ever!

 

So as not to bring you all down and to moan again, lets focus on the good stuff.
I don’t have any problems really without the steroids. Headaches or migraines are not causing me trouble since I stopped taking steroids- this is a good sign that the oedema has reduced, therefore meaning the tumours have too. That I find out in April.

My lungs hopefully are also reducing still despite this horrible cough that won’t leave me and is causing my ribs to hurt again but on the upside is tightening my abs so I am hoping the bikini belly will be ready in a short time!

For today I day I will crack on with living, loving and trying to get some relaxation in there too. I hope you like the photo below-

Bear and I are sending you much love and light.

XXX

IMG_9547

 

 

I was having a cubicle party and everyone was invited…. Yay?

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.
16711485_10154385591922061_7745297197625267666_n

 

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.. but look cute apparently….

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 3rd 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

Mr Johren

Well 2016 went out with one bloody great big bang….

Well 2016 went out with one bloody great big bang. Fireworks? Partying? Nope. I don’t want to dwell, moan or anything really. What has passed has passed and I could go into great detail, but sometimes it’s best left. But I do think I need to record this for my own journal and to let anyone that’s interested know what has been happening.

Towards the end of the year things were very intense, I felt negative, off and started to bump into things and trip over. It came to a head when I noticed that I was dragging my left leg and holding my left arm in an awkward position.  I have an appointment to see my GP for other stuff but she noticed as soon as I walked in something was wrong. She called triage at the Churchill hospital and I was sent there immediately. Not sure what they could do but I wondered if I had had a stroke or something!

After being studied and prodded for hours- they kept me in. Not necessary as they didn’t do scans or anything. Pete came up the next day and sat with me- New Year’s Eve.

I had a CT scan that was already booked as an outpatient for my usual three monthly chest scan plus a brain CT scan but without contrast so it wasn’t very useful they said. I eventually got free from the NHS clutches in the evening after wasting their resources for the over 24 hours having been told no stroke but it looks like there were two lesions on the right side of my head causing swelling and the imbalance symptoms. Gutted to say the least. Straight on steroids to fix the symptoms.

The next two weeks the symptoms reduced really quickly and I am now back to normal. Thankfully. Although the side effects of steroids are awful I am more than happy to be ‘normal’ again. I have a chipmunk moon face and I piling on the pounds! I am loving eating!

 

Christmas came and went and then the thoughts of new year and how exciting 2017 is going to be for us. Better than 2016…we all hope every year is better than the one before.

We had a ski holiday booked for the second week of this month. Of course we toyed with the idea of not going as I wouldn’t be able to ski probably. I had lost so much strength in my left side. But always optimistic we decided to go. Full of cold. The stress had got the better of us both. So already hindered with coughs and lots of mucus we were on a back foot- but never for letting things go, we went.

The location in Austria was beautiful with many blue sky, days. But it was lovely having time together alone especially with how stressful we had both been feeling.

The first day we went up the mountain and I tried my hardest to find balance and when falling over I kept getting up but it was futile. I was crushed. Getting up was so hard. I had no strength. I couldn’t even find the strength to push down into my ski.  I felt like I lost the thing I am really good at. I was heartbroken and retreated in tears back down the mountain.

That night I couldn’t sleep. I was in complete agony. My legs and joints were in constant pain and I couldn’t tell if it was flu or something else.  We were really concerned and decided the next day to evaluate the situation and maybe head home.

Being mad, crazy and stupid we bought more lift passes for the rest of the week. Gluttons for punishment maybe?! Yes definitely.

The second day, I was better but did very little. But at least I was trying and loving being in the open air and loving my Bear as much as I could. But then I had a second night of pain and no sleep.

Midweek, I caved. I decided I couldn’t even go up the mountain with ski kit, so for the first time ever Pete went out on his own and I made roost in a restaurant for the day. I cried the whole time. People must have thought I was a nutter. But I felt such as failure. My favourite sport and I couldn’t do it. But I allowed myself to rest whilst Pete skied from Austria to Switzerland. Sounds epic doesn’t it?!

The whole week I didn’t sleep and had different levels of pain every night. No idea why. Pain relief didn’t touch it. Pete all the while didn’t sleep either but he was brilliant. We would get up out of bed in the middle of night and have a cup of tea and talk and cuddle.

Thursday I decided to give it a go again. The weather forecast was going to change the following day so today was my last chance. I did it. I skied a lot more competently and I actually had fun! I was so proud of myself.

Friday the heavy snow came so a day of sauna and relaxation was on the cards. A perfect end to our break away.

All during this time I received so much support from everyone online and at home. I was an emotional wreck! I cried when I was happy and sad. Poor Pete didn’t know how to react! Haha. It was hugely overwhelming. Thank you everyone!
Travelling home day didn’t go well to begin with. The snow was so heavy the transfer didn’t arrive for over an hour. The roads were snarled up and it took twice as long to get to the airport. We expected the tiny airport to be full to the brim as usual but weirdly our check in desks were not. Bonus. Security was flowing and so we sat and chilled out. Lots of flights were delayed and cancelled and we didn’t think we would get home without a huge delay. A flight that was due to leave to our airport to our destination airport at 10am had been delayed for over five hours. Oh well. We thought we could waste time there quite easily after spending so much time at the hospital a few weeks before. Then our flight arrived. We were boarding before the 10am flight?! We did have to sit on the tarmac for about an hour but at least we were on the flight.

Thank you God, Universe and Angels. We got home with a short delay but things went so smoothly. What a great finish. Blessings, gratefulness- the works!

So then our thoughts came back to reality.

Yesterday happened.

We had an appointment to see Prof Harris, my oncologist. Mainly to get results from the recent scans and find out whether a referral to St Barts for gamma knife has been considered for me.

I am not sure what happened. It’s a bit of a blur. Pete and I sat there as Prof Harris told how very serious the situation is. Doesn’t he know us by now? We know that?! He told us in some sort of detail that I had two lesions in my brain but there are multiple small metastases in the right frontal lobe. It looked very bleak and to be honest there isn’t much they can do for me. He then said that St Barts had discussed me in a meeting the day before regarding gamma knife and they were trying to get hold of them to find out if I was initially accepted to just simply go and see them. Professor Harris said it was ‘highly unlikely’ they would even consider me even at that point. What?! So they would let me die?!!!!! Yes, basically. He sat there and said we now needed to look at the minor possibilities that Eribulin chemo may get through the blood/ brain barrier. Oh my god. When he left the room to faff about, I obviously became upset and when he returned he asked, ’Are you upset?’ Oh my god! Was this guy serious? We asked lots of questions about whether I could have whole brain radiotherapy again. I was told no. I could get dementia. Not sure how fast I wold get it but surely I wouldn’t want to live like that at this age. But excuse me, you just told me I had weeks/ months left to live. I certainly won’t be getting another two years free from brain tumours like I just had.

He suggested that I contact ‘my team’ in Germany to see if they could help and then mentioned two drugs that have and are being discontinued here in the UK that Germany may be able to get for me.

So basically the NHS can do nothing for me. I have never felt like my life was so worthless as I did yesterday. I was being dumped despite there are resources, but they are not willing to try. Or at least that was what my oncologist told me.

 

In a daze I walked out and Pete and I somehow got our way back home in complete despair. Friends and family were all keen to know what was going on. We didn’t to have to keep them waiting but I really wanted to know what St Barts had said. Would they see me? Or am I lost cause?

We did update our nearest and dearest briefly and support was there immediately. Just what we needed. Hugs, tears, laugh, coffee, munching and finally more hugs goodbye.

 

As well as this I wanted copies of the scans to send to ‘my German team’. This became an issue in itself but with going back up the hospital collecting CD’s then technical support (Thanks Adam!) came to the rescue and got them all online, we started sending emails to my Prof Vogl in Germany.
During the afternoon, I finally got a phone call from another oncologist at my hospital. He had news about St Barts. Finally they had spoken to them regarding the meeting about me the day before. They had decided to allow me to have an outpatient appointment to at least discuss with the gamma knife doctor as to whether I am eligible for gamma knife. Well that’s a bit more promising! Why did Prof Harris tell me it was highly unlikely I would get an appointment? Why would he take all hope away?! I don’t get it. I was crushed. I was dying. But now there is a glimmer of hope.

 

Back to emails to Germany;

I was honest and told Prof Vogl everything and that we are scared.  Bearing in mind they are an hour ahead and by the time we got emails across he should have been at home with his family. Nope. He was still working. He went straight to his colleague in the cyberknife department who emailed also asking for more info.

I eventually went to bed at 11pm last night. I was still getting emails from them! These guys are so dedicated. My heart began to feel hope.

His first email to me was ‘don’t worry we can do this. You will win again.’ Then his colleague even sent me an email with comforting words. Pete said it was a very caring email (as it was in German)

I honestly couldn’t believe it.

I had had more support from strangers in Germany, than ‘my’ oncologist here in the UK who has known me for 6 years. Pete feels very strongly about this and is clearly upset.

Right now the options are we go and pay for cyberknife in Germany? It’s cheaper to pay for it there than it is to pay privately for it herein the UK. They say I can go tomorrow if I want to! It’s that quick. I would be a priority and they are more than happy to treat me for the two/three lesions. They have seen the scans and haven’t mentioned the area of multiple metastases that I was told are there. Now we are trying to decide what to do. It’s a lot of money but well worth it.

I have just picked up the post off the doormat. A letter from St Barts- an appointment for the 3rd February to have a chat with them. Well that’s good I am booked already, shame it’s not sooner. But then this is the NHS. That’s pretty good though. Decisions to be made. I will wait to hear what Pete says. But bless him, he has to work.

Last night I didn’t really sleep, naturally, but a bonus- no pain! That’s two nights now! YES!

So that’s it. The update. Phew I’m wrecked in every single way. Pete has been an utter rock. Telling me, they’ve told me this before. We took no notice then and look how far we have got. I couldn’t do this without him. Of course I feel terrible about the situation. And I am always sorry but this is the life we have. At least we have eachother. What more could I really want?
Today I feel positive. I am trying have some control in my life by doing small jobs around the house and emailing etc. It keeps me focussed and I feel better about myself.
Strength comes from every single person, action, comment -you name it. I am blessed for everyone and their words of support. That also makes me cry! Hahaha haha! I am a mess. But at least I have hope now.

 

 

 

16114448_10154259340677061_821267089068623906_n

 

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.

 

untitled 

A visit to Nesselhut….

This week has been the usual busy time. We had a great weekend working in the garden and doing more jobs at the new office. It’s really taking shape now. It felt good ticking things off the list. To be honest it can be quite simple to feel good. For me it is achieving things and making the pressure ease off. I spent plenty of time sitting by the fire and keeping warm- the true kitty that I am.

The weather may be nippier than normal but it has been really beautiful. Yesterday I needed to get out there and feel the cold but also to take in the autumn sun. The trees are so beautiful this time of year, so I went out for a walk. More than I can say for Germany. We headed over to see Dr Nesselhut for a vaccination for DC therapy. Either way, treatment. Their weather is very similar to ours but it was very grey and uninspiring, but I didn’t have much time to waste so it didn’t really matter.

I had the combination I usually have which includes oncothermia (local hyperthermia) which I quite enjoy as it makes me feel warm. I had an infusion of nivolumab and they took bloods in preparation for my next treatment. I was informed that my red blood cell count is down to 8.8 now. It has dropped very slightly again and my blood pressure is low. I was also given Rigvir a viral therapy in place of Newcastle disease virus which is now classed as illegal there.

We had a long chat with Dr Nesselhut. It’s great hearing all about everything and successes he is having. It sounds like most of the success is usually in people who are very advanced. They seem to have spectacular results such as complete remission. It makes me wonder if when the body is so full of cancer cells that the DC therapy works at its best. I really don’t want to get really close to death before it works.

Our flight was late home and then every road leading home was closed! I am unsure as to why they decide to close two major roads at the same time! That is why yesterday I was ordered to relax and take it easy. I didn’t get dressed until lunchtime but I ploughed on with some emails and washing.

We did have some laughs whilst away. We hired a car as usual but from a different company. We were a little surprised to be given a ten seater minibus! Haha. So off we chugged in our people carrier. It was actually a lovely smooth ride!

I have been feeling a lot more positive recently but I am worrying about my bloods being so low at 8.8 when it should be 10-12. Although not anaemic (I was told it went to 8.5 then I would be).

I am going to stop taking capecitabine after having TACE in a few weeks and then I am going to take a break if possible from treatments abroad until the New Year. I really I can afford to that.

I have my three monthly CT scan this afternoon, which I only just remembered!

Dr Nesselhut did give us some new information on a certain drug and how it works on canSer but I can’t explain it. I will need the Bear to explain. So over the next day or so I will get the information down and share it with you all.

Life is still very pressured. I am hoping things will calm for my Bear too. I know that life is putting too much pressure on him. Work is a heavy burden and obviously it is necessary to keep earning money to keep me alive. I know that if I can work hard at getting better then that would make him feel less stressed. I do worry about him. I want to take his pain away so badly and just wish things could be different. If only he didn’t feel unsupported. Who should he turn to? We always off load onto each other. And that’s what being married is like, but we are both so full of emotion it can be really stressful on each other. I know if I mention sadness or worry or pain that it really stresses him out. Which is the same when he tells me how he feels and what pressures there are at work. I am trying to be mindful and meditate but clearing my mind is so difficult and I don’t even know where to begin to help Pete when he is so stretched for time by everyone wanting a piece of him.

We love our weekends and our time together. I think the weekends are such a relief and being good to ourselves and nourishing our needs Is essential and we really enjoy it.

We plan our meals for the week and eat lovely fresh unprocessed foods. We make plans for the future and our next holidays and breaks away; which are skiing and Christmas markets.

We plan on making changes to our home, and current project is a new patio.

And then we just sit snuffling, cuddling and loving each other. My favourite time. X

 

 

 

 

I’m putting my game face on…..

I’m putting my game face on….
Whilst lying awake in bed last night I made a plan… It’s time to get my game face on. I have to improve my bloods. My haemoglobin is low (around 9 when it should be 11/12) and whilst it doesn’t affect me that much on a day to day basis; things such as tiredness and almost blacking out if I get up too quickly I guess you may be wondering well if that’s all it is then why worry? I worry because it’s when the bloods are low that treatment knocks you for six and it becomes harder to maintain the same treatment levels and then infections creep in and then BOOM – its game over.
I have to improve them. Prof Harris said food and drink won’t do it but there has to be something I can do. So I am back to making my plan and getting on the case. I need also to exercise and make more muscle in order to have more red blood cells and then oxygenation will improve also.

With the winter season inbound we have thoughts of skiing in our minds and this means getting ski fit. I have barely exercised for some time now and the only way to do it is get a plan and get on with it. Pete and I devised a short routine that will get us both fit for skiing, in a few months, hopefully. I started today. My legs are shaky and I am certain I won’t be able to walk tomorrow but I plan on keeping on, even though I have more treatments in bound in the next few weeks.

As well as this I will be doing the following. Most of which I have been doing, but some are additions;

Meditation, yoga, exercise, heat and airnergy, supplements, green juice, fresh fruit and vegetables, symprove probiotic, apple cider vinegar in water, Bicarbonate of soda in water, turmeric paste- a spoonful every day). As well as this we have been meal planning our week’s food. It contains plenty of food made from scratch without meats apart from chicken and fish.

Gaining strength and improving my bloods is all that matters! I have to get rid of this lymph node that is pressing on my bronchial tube and I have to be as fit as I was four years ago. Feel free to share anything you feel would benefit me!

 

The Universe has my back.
On Saturday, I awoke feeling blue. Absolutely no reason for it. I didn’t understand why.
We went out for a few hours, doing more chores at the office but at least ticking things off the list, and then my phone rang. It was my brother. I have a big family although I don’t spend any time with them and in fact we have very little communication with each other. My brother Mark is ten years older than me and growing up I was his favourite, probably because I was the youngest. He called me Munchkin. My immediate thought was ‘Oh God what has happened?’

I have felt sad for a long time that we don’t have much communication but he called Saturday and said that he was at work having a tea break and thought of me and called for a chat. It was brilliant. I love him and miss him and it really filled me with happiness. Pete said when I put the phone down that the Universe was listening to me and that Mark called because I was blue. Then immediately after that my phone rang again. It was my dad this time. I had called him the day before and we chatted about our house and what needs to be done and how we don’t want to spend too much money on it. So he called me, as he had been awake half the night thinking. He offered to come up and do our patio for us and save some money as we wouldn’t have to pay him. He just wants to see Pete and me and feel useful. He is in his seventies. That struck a chord with me too. He wanted to feel useful. He said he will bring my other brother to help and they can come in November to get it done. Whilst here he said he can do some other jobs too.  I put the phone down and told Pete and filled up with tears. I couldn’t believe what was happening. I was so touched and I am so pleased he has offered because the work he does is of such a good standard. That completely changed my day and my mood and I feel so excited and happy.

Sometimes when you least expect it the nicest things happen. I have always been so lucky to have such supportive friends and family and even strangers. That’s enough to get the drive to fight even harder.

 

The rest of the weekend was perfect. Pete and I had lots of cuddles and warming up in front of our fire. I am a typical cat. I sit as close to the fire as possible and sleep. I am so grateful to Pete for the way he is with me. He knows me and my needs and I am so lucky that he just wants me to be happy and will do anything to make that happen. If others have anything as close as what we have then they have won the love lottery.

Massive gratitude pouring everywhere!

 

Light and Love… X