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Learn the art of patience.....

by Claire24. March 2015 14:25

 

‘Learn the art of patience. Apply discipline to your thoughts when they become anxious over the outcome of a goal. Impatience breeds anxiety, fear, discouragement and failure. Patience creates confidence, decisiveness, and a rational outlook, which eventually leads to success.’

I have been trying so very hard to be patient. But last week I thought I was so very close to getting an appointment for the gamma knife procedure at St Bart’s hospital on the NHS.

 

As you know from my last blog I was given a date over the phone for this procedure. The next thing I was waiting for was confirmation of the appointment which the secretary had said she would email. The following day by lunchtime I still hadn’t received it so I called. The secretary said she had sent it. This started the whole palava of her realising that she hadn’t received any emails for a few days. Seriously? She hadn’t thought to check why she hadn’t received any emails?!  Then she noticed emails I had sent her had gone into her junk box. Frustrating isn’t the word. To be honest I feel like a nuisance constantly calling and emailing but it makes me realise that I have just cause to!

Then I discover the letter that has been emailed to me is another outpatient’s appointment letter not a confirmation of the gamma knife procedure. I call her back again. She starts rambling saying that she needed to ask someone to call and that it wasn’t as simple as changing the letter. Eh?

In the meantime I had been also emailing a lady at the gamma knife centre. She said I requested the outpatient appointment so that Dr Plowman could look at my MRI images and be discussed at their MDT. I said that they had already done that. She replied and said as far as she knew my last appointment was a complete waste of time. I argued my point and asked why I was then given an appointment by his secretary? The gamma knife lady said his secretary couldn’t have done that as she doesn’t have the ability or authority to do that! Oh my goodness... how hard is it?

I then emailed both parties and was quite frank with them both. I got a call from Dr Plowman's secretary telling me a consultant was going to call me. That never happened.

Then I got a really nice email from the gamma knife lady who said she was awaiting for Dr Plowman to reply and that all matters were in her hands with a clear and robust plan of action. That was Friday.

I emailed today and she replied to say that she has now passed it onto the gamma knife CNS. (By the way I don’t know what all the abbreviations are- I don’t know why they think it’s appropriate to confuse patients further?!) I have replied and asked why and what’s going on... but had no reply.

 

It’s actually quite boring. And I don’t want to get upset and impatient but I do believe that I could have organised this with my eyes shut.

There are so many issues here that I cannot even be bothered to detail them now.

I am hopeful still but I also have that sinking feeling. What bothered me the most is when I asked Dr Plowman’s secretary, ‘How do you not know the process of booking in gamma knife patients?’ She answered by saying that Dr Plowman doesn’t do many on the NHS. He does more privately. Great....That is disgusting.

So I am trying to be patient. But I got fed up and decided to email my lovely ladies at the Churchill. I told them the synopsis of this farce and also how great they are as well as the consultants. I may have had a few issues in the beginning but they have always replied promptly, appointments booked and everything has been clear and simple.

As expected my lovely lady at the Churchill replied almost immediately and says she is going to try and find out what is going on.

I guess one of the problems with gamma knife at St Barts is this... The lady at the gamma knife centre doesn’t work for the consultant Dr Plowman and isn’t employed by the NHS. So her systems and procedures are separate from the NHS. So Dr Plowman’s secretary really cannot do much for me.

I say keep it simple! There would be fewer issues and maybe when I go for an appointment my images may be there if it’s being dealt by one person?!

So I’m still waiting.....I’m practicing using my energy by focusing on good things and being ever hopeful... but let’s face it. If I haven’t heard anything by end of day tomorrow I will be finding Dr Plowman’s email and phone number and contacting directly!

 

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Triple Negative

Booked but no confirmation as yet....

by Claire18. March 2015 17:51

 

I received an email from a lady working at the gamma knife centre at St Barts yesterday, just past 5pm, saying that Dr Plowman wanted me to book in for another outpatients appointment and then he would let her know the next step. She asked that I call his secretary the following day to book it in.

I replied immediately asking why Dr Plowman would want another outpatients appointment seeing as I had just had one last week? Of course I didn’t get a reply. It must have been home time.

This put me in somewhat of a bad mood for most of last night. I tried not to let it bother me but I couldn’t help worrying. What did Dr Plowman want to see me for? He had said that I would be getting an appointment for the procedure. I could only think the worst and different scenarios were going through my head like what I would say on the phone to the secretary and how I would need to argue it out. I tried calling there and then but of course being after 5pm there wasn’t any answer.

Luckily, having a bath then getting an early night meant I slept really well. It’s not hard when you have a big Bear snuffling beside you. The best sleep ever.

I got up and as soon as 9am came I called. No answer. Then I had to go to the doctors. I have had enough of the skin issue on my chin and around my nose. I have tried everything from Sudafed, to tea tree, to natural products and more. Nothing has been working and it has slowly got worse. I had my suspicions of what it could be and it was confirmed by the doctor. I have a form of dermatitis that affects the areas on the face like mine. I have been prescribed some cream which has already started to work. Bonus!

I got back and immediately got on the phone again and this time had an answer. The secretary was lovely and very helpful. I explained my situation and the fact I live in Oxford and so on. She went and spoke to the doctor who said let’s bypass the outpatient appointment and book me for the gamma knife procedure! Argh! Result. I have been pencilled in for late April and will get an email and letter to confirm.

I have been told to call again tomorrow if I don’t receive anything by ten am tomorrow. So far nothing....Seriously, I know I am a lady of leisure right now but chasing doctors isn’t up there on my list. However, this is really nothing to complain about in the scheme of things is it?

My energy is feeling all floopy today. I don’t feel driven like I did last week. It’s weird how our moods change. I’m aching quite a bit since I started a new exercise regime and I think that’s making me more tired than normal.

It’s cold again here and we awoke to a foggy garden. This afternoon has been bright and sunshiny.
I love it that I can get out in the back garden and have a cup of tea in the warm rays. The summer is going to be great and the garden is going to get full use! I am not wishing my life away but it’s right up there on the things I am looking forward to!

Until tomorrow when I hope I have confirmation.....

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Triple Negative

Gamma Knife an option?

by Claire16. March 2015 17:22

 

 

Friday morning Bear and I went to London to see the consultant regarding gamma knife. I’ve been there before and in typical St Bart’s style my MRI images had not been received. We did however see the consultant who I really like. He, much like the rest of the medical profession, seemed to be in a rush and we were ushered out within five minutes after waiting for nearly two hours and travelling two hours to get there!?

Luckily I had the written summary of my brain scans on my phone. He seemed happy that there had been substantial reduction and that there had not been any further tumours pop up and that I was no longer on steroids and didn’t show any symptoms. He said ‘they’ would discuss me at their next MDT then if I were to have gamma knife then it would be an early start, like I care?!

I got home and looked up emails I had been sent and noticed one from the secretary at the gamma knife centre. She had said there is an MDT on the first and third Monday of every month. That’s today! I hope they have sorted all my images out now and that was discussed today. I really want to have those tumours blasted! I am not loving the process involved, but then who does? Pete sent me the details of how it all works. Sometimes ignorance is bliss. Knowing exactly how they do it doesn’t fill me with joy!

I had an email this morning to say I will be informed when the consultant has made a decision. Okay......

Whilst in London we wandered down to St Paul’s cathedral to be met with road closures and many people on the side of the road... and the Queens car! Then we spotted her going into the cathedral! Eek! I saw the Queen! Haha...

This weekend we headed to the coast to visit my mum. We spoiled her rotten for Mothering Sunday. We took a long walk on the beach, spent time laughing and breathing in the fresh sea air. We made mum an afternoon tea en par with the Ritz, if not better!

                                                  

 

I had cupcakes made with MUM on them and a bag full of presents that I had made for her including a photo album of our memories in the past seven years. Sunday, we went for a lovely breakfast at a beach restaurant and then sadly had to say good bye. It’s never long enough....      

                 

                                    

Back to the week ahead and there’s not much going on except the usual routine and exercise and more household clear outs. I am loving clearing out the house, although it still feels like every cupboard is bursting at the seams! We have way too much ...stuff.

Mum helped me cast on yesterday so I am on my way to knitting another something special for someone special, although without my mum’s help, it could take a long while!

There’s a lot to look forward to in the next few months and time is flying. I am feeling good and hope it continues. My hair still looks odd with a bald patch but that’s the least of my worries. As is the red, itchy rash like thing on my chin and round my nose.

My blood results arrived today and it seems that my haemoglobin, platelets, red cells, and white cells, well almost everything, is low. Prof Harris says it isn’t anything diet, tablets or any treatment can change right now and it’s not bad enough for a transfusion to be required. I have sent a copy to Nesselhut for him to tell me what he thinks. Well if it’s all low I am not feeling out of breath or light headed, so that’s good.

Here’s hoping I hear from St Barts tomorrow about the gamma knife treatment. Fingers crossed....

 

                                  

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Triple Negative

Letting go of the niggling thoughts...

by Claire9. March 2015 15:36

 

Things are going really well on a day to day basis. It's unreal that only last week I was having treatment in Germany. Thursday and Friday we got back into routine and began a new regime. Pete and I desperately need to feel better and that means making lifestyle changes. Pete wants weight loss and to be fit and healthy. I need to feel strong and balanced and improve my bloods. With being away so much it's hard unless you put your mind to it. It's all about planning.


The weekend was brilliant. We had lots of sleep, cuddles, love, laughter and the sun shone. We worked hard in the garden and cleaned the cars. Our godchildren visited and ran round the garden. Then yesterday we had a family dinner. These are the simple things that make me feel complete. I feel like I achieved something. It's cathartic.


We didn't drink any alcohol and I feel great. Pete doesn't notice changes as much as I do. He had withdrawal headaches from stopping eating sugar and having caffeine. If nothing else I want Pete to feel healthier. The foods and drinks that go inside him now will be more nourishing.


I'm taking more supplements now. Nausea and vomiting has definitely passed and I've decided to stop taking the steroids. I was on such a low dose that my body makes that much anyway. So far so good. I've introduced reishi spore oil again. I really think mushrooms are great for the blood.


I'm on a mission to really get into exercising again. I need my body to feel stronger.
So with all these positive changes and improvements why do I still have niggling thoughts?


It's been a tough four and half years. The last five months in particular. But I know that they've been rough because I've combined many treatments that take a toll. Now I'm on nivolumab with dc therapy mainly, apart from a few other bits and bobs. The thing is I'm worried. I'm worried that it's not enough.


Three months of it and then I'll have a scan. When I was having TACE and infusions with IPT I kind of new it was working. Symptoms were going and I could feel my body improving. Having a scan didn't worry me massively because I knew things were improving. Now I'm a bit like- argh!


I hope to God and the Universe that I'm doing the right thing.


Every little physical change I'm really aware of. Last night I had a tickly cough and thought 'Oh no, not my lymph nodes again?!' Then I went to bed, thought positive thoughts and feel tip top this morning. So panic over.
I don't want to be like a scare-dy cat for the next three months. I want to feel confident and enjoy now...


Life is such a gamble. I would love assurances but no one has that do they?

 

Today I have been to the hospital to0 have my bloods done again in preparation for administering the denosumab injection tomorrow.

I also had a pleasant surprise today by receiving an appointment letter to see Dr Plowman this Friday regarding gamma knife treatment. That happened quickly. Let’s hope we have a better experience this time. Once I can get the brain tumours gone completely I will be really confident about beating this thing.

So for now I want to continue getting stronger and feeling fitter and more cleansed and treating this body and mind with the utmost respect. X

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Triple Negative

Are you bored of me saying what a great nights sleep I had at the Zum Lowen hotel?

by Claire5. March 2015 08:46

Are you bored of me saying what a great nights sleep I had at the Zum Lowen hotel? Ha ha...Oh well.... I did! Last night was an epic nights sleep....  So much so that I woke up with the puffiest face and eyes that I have ever had! My first appointment at Dr Nesselhuts clinic was at 10am when  I was told that my bloods were fine from the lab tests. Phew...  That's good news. I had many, many vials of blood taken so that they can be frozen by the lab and used for future dc vaccinations. 

Then I had hyperthermia followed by a Newcastle disease virus jab.
In between appointments Pete and I killed some time then returned for the vaccination.  We saw Thomas' son Jan this time.  He is just as lovely as his dad and seems to really know his stuff too.
He was pleased with my recent scan results and proceeded to discuss nivolumab.  He explained that unlike other antibodies and vaccinations which tend  to leave the body within about two weeks,  nivolumab has a half life of about four weeks,  so when I have my next infusion of nivolumab there  will still be a residue in my body therefore making it accumulative.This is classed as a good thing. He also said I had about 1mg per kg of weight.  The usual amount would be 3mg but they like to wean you onto it to ensure you don't get too many side effects. 

Plus, it would cost a fortune if we had 3mg per weight! Then Jan dropped the bombshell... He said that because nivolumab affects the immune system I could get an auto immune disease. That means any organ or system in the body could be affected. If affected then  I could of course die from that auto immune disease.  Er..... Brilliant. But it's ok because if I get any symptoms or illness then I could be put on strong steroids like cortisone or prednisone to stop the disease. So yesterday when I was pleased that there wasn't any side effects and how nice it would be to actually receive treatment without any pain or misery...  I was wrong. Life is so full of Yin and Yang! I wish he hadn't told me.  I don't want to think about the possibility of getting arthritis, failed organs, or anything really!  I just want to be healthy and happy- CanSer free! Well as I type this sipping on my mint and lemon hot water I just think to myself, 'what's the worst that could happen?'
Right now I have a choice. I'm already taking a leap of faith. I am to try out this combination of nivolumab and dc therapy for three months and then scan to see if it's working. The worst outcome is that the canSer grows and spreads.  The other baddy is that I get sick from the side effects and get too ill and die.
For melanoma, nivolumab really is a game changer so let's hope it works just as well for us TNBCers. I must point out that the trials for nivolumab in the UK are totally different to  what I am receiving as I am having immunotherapy as well. The other choice is I go straight back to Prof Vogl and have TACE and do what has been working recently. I never know what's for the best. I can only react to symptoms. That's the best way forward.  So I am going to be alert, live healthily and just plough onwards and upwards.  I will ask for another scan in about two to three months and continue to have my bloods done every few weeks. I am still having denosumab for my bones and will continue with my supplements and medication. We left the clinic with plenty of time for our flight. As usual the weather turned nasty.  We had a torrential downpour of hailstones.. It's actually getting funny now. We arrived with plenty of time for our flight though... Four hours to be precise!  Shame there wasn't any earlier flights we could have slipped onto.

Looking forward to my own bed. Let's hope I sleep as well as I did last night..
Xx

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Triple Negative

New beginnings.....

by Claire3. March 2015 12:45

I'm sat in my room at the Zum Lowen in Duderstadt. We are once again living life to the full after a weekend being joined by our good friends from Ireland. Feeling tired but happy we got here late last night. We flew to Hannover and then drove to Duderstadt. We are so unlucky with the weather. It rained then snowed then blew a gale all the way here. Poor Pete hated the drive here especially with over 14km of roadworks! Apparently in two weeks it will be about 18 degrees and sunny. Typical. Let's hope the next time we visit it is better.

After a brilliant nights sleep in one of my favourite beds I had a hearty Zum Lowen breakfast then headed to the clinic. Today I thought I was having the usual oncothermia, Newcastle disease virus, and an  interleukin 2 shot. Instead I had an infusion of nivolumab.

I knew I was having nivolumab on this particular visit but had no idea how it would be administered. It took about an hour and half to complete and there isn't any side effects expected as it isn't a chemo, it is a monoclonal antibody.

Now this is where it gets a bit technical. I don't really understand it all and if you asked me I couldn't explain it to you as I have a memory like a fish but the explanation is below of how it works and what it does.

Nivolumab works by blocking a protein called programmed cell death 1 (PD-1). Drugs which inhibit PD-1 may be able to treat a variety of cancers.

PD-1 is a protein on the surface of activated T cells. If another molecule, called programmed cell death 1 ligand 1 (PD-L1), binds to PD-1, the T cell dies or becomes docile. This is a way that the body regulates the immune system, to avoid an overreaction. Since many cancer cells make PD-L1, the cancer cells can disarm the T cells and inhibit them from attacking the tumor. Nivolumab blocks PD-L1 from binding to PD-1.

PD-1 blockers appear to free up the immune system only around the tumor, rather than more generally, which could mean they can have fewer side effects as well.[3]

Currently nivolumab is being made by Bristol Squibb Myers. I called them recently and asked them if they would provide me with nivolumab so that Prof Dalgliesh could administer it for me. They said no. Then Prof Dalgliesh contacted them and they said it wasn't licensed forbreast CanSer. Oh well it was worth a try and would certainly have been much cheaper than us obtaining it here in Germany. However, when asking all the doctors I have seen in the UK what their thoughts were on nivolumab . I was pleased and surprised to be told go and have it and to put other treatments on hold. I have never been told this by an NHS doctor. I was worried about postponing starting eribulin as I know it should be effective treatment for me but Prof Harris said why put more toxicity in me especially when my bloods have been so low recently. 

I had some bloods taken this morning and the lab here will check to see if my haemoglobin has improved enough for them to take plenty for my next few visits.

I have everything crossed that it's good. It hopefully will be better than my last bloods that I had done ten days ago. They had already risen from 8.9 to 10.9 so fingers crossed once again.

For more info on nivolumab click the link. It will also give a link to current trials available. 

http://www.cancer.gov/drugdictionary?cdrid=539733

 

What else is new? Other than eating my body weight in food I am keen to get back to exercising regularly when we get back and I think I am going to mix it up including rebounding, weights, yoga and more. 

My skin has really been odd recently too. I have a rash like area of spots on my chin and round my nose that is itchy. I have great skin normally. I associate the chin region with hormonal issues so I am unsure what is going on...

My hair is slowly growing back and is so soft and fluffy. I am very impatient and really want it back now. The problem is the stripe down the middle of my head is still bald! I have a reverse Mohican that looks more obvious by the day! Haha...

Mum went home Saturday and it was really sad to see her go. The week flew by and we had such a laugh. She taught me to knit and we really got stuck in. The good thing is that the repetitive strain injury has now healed...haha. I'm good to start knitting again!

 

I have today emailed the secretary at the NHS. I am chasing up the gamma knife treatment at St Barts. I am very aware that Dr Plowman only has one MDT a month and I want to be featured so that I can have the procedure soon. I have re read a letter that his consultant sent to my hospital and it says that once I have had whole brain radiotherapy and there are no new metastasis and the current ones have improved and are stable that he would happily do the procedure on me. Well, based on last weeks scan he should be happy to proceed. As with the NHS and any other doctors you have to push for these things.

It's weird. The last few months have been pretty up and down and the results so far have been really good. I get the feeling that for any kind of success it has to be hard and painful. Wouldn't it be lovely that if this nivolumab, which apparently gives no side effects combined with dc therapy, actually works? Painless and effective.... Please please please.....

Now for an afternoon of chilling and reading....

Light and love. X

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Triple Negative

Results!!!

by Claire26. February 2015 15:51

 

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....

 

 

 

 

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Triple Negative

A first for Pete and I.....

by Claire23. February 2015 09:14

 

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.....

 

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Triple Negative

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

by Claire16. February 2015 12:35

 

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

 

                                         

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

 

                                         

                                                  

 

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A quick update....

by Claire6. February 2015 16:21

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

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