What will you do when you regain your health again?

Yesterday I was meant to go to acupuncture but one thing or another I didn’t quite make it. I am finding the journey to Farnham a little too long so may need to find a local therapist to do it for me. Instead I took back the dresses that I bought for the wedding that I ending up not needing and got on with some chores. For me getting things done makes my head clear. I do sometimes feel though I am trying to avoid doing the things I really should such as visualising and reading. I do feel much more balanced and strong in myself these days.

I spent a short while visualising and I keep picturing the little lung tumours being popped by a pin then my lungs filled with happy butterflies. Are butterflies happy? Well they are in my head!

I had clients in the afternoon so in between eating (yes eating. I want to eat my body weight in salad and falafels!) I did manage to really get stuck into my book ‘You can conquer cancer’ Sounds heavy but it’s very positive and uplifting. To be honest it really just emphasises the things I know and do already but helps make it more real.

One question in it is, ‘What will you do when you regain your health again?’

Oo this is a good one. I guess you think you will go back to living like before but then I wasn’t really living in the present. I can’t help but think I would like to devote my life to a child and really give it my undivided love and attention. This is of course if I can have one. If not then I’ll have to get a dog! I don’t have any major plans as to what I want from life. I want to help others, see lots of the world and I want to make a difference and to be happy and in love. Not much to ask I don’t think?

I’ve just been rebounding for this morning’s exercise.. Phew I’m sweaty..  Getting ready for a good day ahead -it makes you feel energised. On with my day then we have a weekend of visitors (my mum and sister in law) so that’s something to look forward to and apparently some sunshine. Yay!

Changing subject, my therapist told me about license free music to use for my treatment room so that I don’t get hounded by the authorities.  www.ichillmusic.comsells and downloads license free music that is really relaxing which can be used in any business free from license fees. It’s really good music… I can’t decide what to buy first?!

 

We’ve topped £7000!

I woke up being totally snuffled again this morning… I have had a big smile on my face all day today. I love my Bear. He is so kind and caring and full of love. I wish people told him how lovely he is more. He deserves happiness in his life. Bless him. X

Yesterday I had clients coming to see me to be beautified. It was brilliant as my old clients are coming back slowly but surely and they seem so pleased to see me. I keep being given gifts and yesterday I received an orchid and a pack of Green and Blacks organic dark chocolate… Mmmm. But more than that my clients have been praying for me all over the world and where they go they light a candle. This touches me so much and makes me realise how lucky I am.

Yesterday was also my last day of chemo. My 8th cycle! I actually feel really good. It’s amazing how one good day of eating, no alcohol and back to usual exercise and rituals how I can feel tippedy top!

I also posted on facebook yesterday that I am going to start taking on new clients again. No sooner had I said it but three new clients booked… whoop. My diary is getting ever busy and I mustn’t forget to keep focused on my project of getting well again. I tweeted this online and Nilam Patel, founder of HD brows messaged to congratulate me on getting back into it again… how nice!

I have had a few emails and messages today also from other TNBC ‘survivors’ (and other canSer survivors) asking my advice. I have to admit I am feeling great today. Everyone I see says I look really well, that has a lot to do with a tan I currently have but maybe I am glowing from the inside and it is showing on the outsides.

I am more than happy to share my news, experiences and advice where possible. I just hope this is the start of things to come. More and more people are realising that working alongside conventional treatment such as chemo is the way to go. I wouldn’t say no to professional advice of any kind but I guess everyone has their own paths.

Yesterday was my last day of cycle eight of chemo. Eight! Who’d a think it? Eight cycles sounds crazy yet I still believe it is working and I feel great.

To top off my feel good day I have been for reflexology. Claire says that she feels my lungs feel even better and everything feels very calm and relaxed… all except in the dimple of my glutes! How bizarre! I have a tight knot in my butt cheeks. I put that down to all the squats I have been doing!

I have been food shopping today also and my oh my how I love fresh organic veggies. I actually feel quite proud of myself when I am the checkout. I know everyone is looking at my conveyor belt and their own and thinking either, ‘She’s mad!’ or ‘She’s so healthy, I must be more like that.  If only they knew how unhealthy I can be at times! Ha ha!

Today I have paid in some money that I have been making through selling the wish bracelets as well as some of my friends donations through efforts too. This has taken the total of the virgin giving page to £7059.60! We topped that £7k mark at last! And to make it even sweeter it actually equates to more than £8000 with gift aid….. BOOM!! We are firing on all cylinders and need to get cracking with making more! Thinking cap is on.

I think I am going to try and make time every day to sit and visualise or do some quantum field healing. I have to kick the last lot in the butt!I also think that I need to plan more training for the future…. keep me focussed.

So much going on.. I am really happy…X

All preened and ready for the big day tomorrow

Thursday was a great day. I headed up to Birmingham to meet my friends who took me into the centre and we had a proper girly lunch. Talking about everything… I love letting off steam. It was interesting talking with friends about families, change and their natural fears for the future being parents. I suggested that it is not worth the worry.. No one can know the future all you can do is love as much as possible. It’s hard being a worrier but one lesson I have learnt the most is to be strong like a mountain on the outside and flow like a river on the inside. Makes sense really.. Stand strong and firm but be free flowing on the inside.. we should take up this attitude.

Then I went along to a MAC make up master class. I have been trying to get on one for ages and finally got myself booked. It was being taught by a senior make artist known as Pablo Rodriguez, who amongst many also does Vivienne Westwood make up. The course focussed on bridal make up which is ideal seeing as I am doing my best friends make up on Sunday. I learnt lots of great tips and spent a fortune! Thanks Pete. X

The day was topped off by a large paella meal with all six friends together. Sometimes it can feel a little like you are trying to squeeze too much out of life… well that’s how it can feel when in the social situations. The temptation to ‘drink’ too much alcohol is always lingering. I was good though and only had a daily guidelines. Life does seem to be all about celebration these days. I do feel we are all so desperate to feel good and constantly celebrate something. That’s not a negative but it is hard to try to and stick to regime and not batter the body. I am learning that a lot now. Both of us are. We are both realising that we don’t have to party to have a good time. Alcohol doesn’t have to be drunk to excess to have that great time. And the next day we always feel much better for it too.

We stayed the night and got up at 5am. I was wide awake which is highly unlike me and drove home. Pete had a big day in London with work and I had a day of prepping myself for the big day tomorrow.

I had my nails done; I did my tan and got all the makeup and clothes packed for tomorrow’s early start.  Pete returned late from London after a very successful day winning the silver award in the Sunday times letting agency of the year awards. They won silver in the best supplier. I am very proud and it’s so well deserved. Makes all the hard work seem worthwhile.

 

All day I felt great knowing how much of a lovely day the day before had been. I met with a friend who has become as HD brows stylist after I basically ‘sold’ it to her. I love my job and now she does too. And she’s really good. I am so pleased for her being so successful. But I am not surprised. She has attention to detail and is so likeable. She is now changes the faces of everyone in the Midlands! Revolutionising eyebrows! Go on girl…..

As expected I was absolutely pooped by late afternoon as seeing as I had a tan on I decided to creep into to bed so as to minimalise my movement! OK and to sleep!!

I drifted off till about 8pm when I had to get myself up and pick up Pete from the train station.

I tres excited for tomorrow. I know what I am wearing at last… funnily I am now taking all the dresses back and wearing one I already had! I have put on some weight so now it doesn’t hang off me anymore! Ha! I’m not sure why I am so indecisive at the moment. I must work on that.

I started a new yoga DVD this morning. It’s quite dynamic and my arms are wobbly…. Having my hair cut in a mo then I am really set for tomorrows exciting day. The weather looks like it will be nicer today and tomorrow even better. Brilliant… I have the ivory umbrellas’ in case it is not… All will be fine.

 

Today is the tomorrow you worried about yesterday…and everything is fine……..

Had an online appointment with Dr Kate James yesterday. It was good to speak with her and get more reishi supplies ordered. She says she had no doubt that I would be doing well as I am a woman on a mission. I won’t need to have another appointment with her now for many months.

Yesterday I had a few clients returning after a year of not seeing them. I was greeted with more lovely flowers… I’m a lucky girl. They all say how well I look. I have to say that today I have barely coughed and don’t feel at all ill… whoop!

I’ve been told twice today that I have put on weight (on my face) and that I look really well. Now I find this hard to take! As a typical woman worrying about weight (old habits die hard) I guess I have to admit the weight has gone on over the last 5 months. Apparently I look healthier still this is ringing alarm bells in my head. I don’t want to put on weight I like me as I am now. I just can’t help eating! Pete says I am silly for mentioning it but I can’t help it! I have to love myself just the way I am… hard though.

I’ve been getting myself organised today in between clients as I am going to Birmingham tomorrow for a MAC make up master class in bridal make up. It’s been a long time coming and I’m really looking forward to it. Also I get to visit some good friends too. This is all timed nicely for the weekend when my best friend get s married and I am doing her wedding make up.

Tonight I will decide which dress I will be wearing at her wedding. You’d think it’s me getting married! Ha ha!

I received a lovely card from another client of mine who said she saw it and thought of me… See what you think. I love it. So kind and thoughtful and so TRUE!

The sun has finally made an appearance so I’m going to wait for my hubby in the back garden…

 

Essentially stable disease

So I received a copy of the letter that goes to my doctors after my clinic appointment today. I don’t know why I bother reading it as I always get a little bit flustered by it. It states that I am on palliative care… I have mentioned this before but I must be feeling a bit sensitive as I really hate the fact that it means treatment without a cure. Palliative care leading to end of life care….. Grrrrr…..

I simply cannot be dying from this disease.  It’s not acceptable and I don’t believe for one minute that the pulmonary nodules in my lungs have had little change in size since last time. The words written in the letter state ‘essentially stable disease’. Essentially? So the fact there are now none in my lymph nodes doesn’t show that there is a regression of it?

I am unsure why I get ruffled by the stupid comments in the letters. I wish they would be more positive. Other than stating I am tolerating the capecitibine incredibly well there isn’t much else that reads positively. I don’t know why I would expect them to feel the same as I. I expect they have seen many more like me die. They expect me to be the same. I simply won’t have it.

I’m tired again today. I had a hot bath with olbas oil last night before bed then had quite good sleep until my throat started to get all tickly. I spent a few hours coughing. My voice is a bit hoarse but it hasn’t gone completely. I’m hoping it will pass by quickly….

 

Maybe something has changed in me and that is why I’m fighting off this illness. I wish I could see inside myself and know what is happening with the canSer in my lungs. I could visualise better if I knew what they looked like. I must spend more time visualising…

 

Pete came across some more news about triple negative that sounds really promising;

Obgynnews.com:

Metastatic breast cancer cells are even more adaptable and able to evade targeted treatment than researchers suspected as recently as a few months ago, which means they present a heightened treatment challenge that in many cases may be overcome only with multiple targeted therapies delivered at the same time.

The findings were discussed at IMPAKT 2013 Breast Cancer Conference, sponsored by the European Society for Medical Oncology.

 
 

The new wrinkle in drug resistance has been dubbed reprogramming, a way that metastatic breast cancer cells (but presumably a property shared by other advanced solid tumours’ as well) quickly respond to a drug that shuts down an essential cell protein, a kinase, by turning on other, alternative kinases within days of drug exposure. Many of the new, targeted therapies that have successfully treated advanced-stage breast cancer and other solid tumours are kinase inhibitors, such as trastuzumab (Herceptin) and lapatinib (Tykerb).

Using a newly-developed technique for assessing many different kinases within a cell at once, Gary Johnson, Ph.D., reported that treatment of isolated, advanced breast cancer cells in vitro with a kinase inhibitor drug produced within a week a dramatic shift in the cell’s overall kinase profile, something he calls the cell’s “kinome.” Part of this reprogramming response probably occurs because of new genes that the cancer cell turns on or up regulates, and part is probably driven by epigenetic changes in the cell, said Dr. Johnson, professor and chairman of pharmacology at the University of North Carolina in Chapel Hill.

Clinicians familiar with this finding quickly recognized that the phenomenon is an important, new barrier to successful treatment in patients that will require creative solutions using rational, multidrug, or multi-sequence regimens.

 
 

Dr. Lisa A. Carey, an oncologist who collaborates with Dr. Johnson, said she believes that reprogramming may explain her recent, frustrating results treating metastatic breast cancer patients with an investigational inhibitor of the epidermal growth factor receptor (EGFR), a tyrosine kinase.

“We gave the inhibitor to patients with triple-negative breast cancer, where the EGFR is clearly unregulated, a big, juicy target, and yet only 25% of the patients responded. Most of the time, the cancers had alternative mechanisms to keep the EGFR pathway active,” Dr. Carey hypothesized based on Dr. Johnson’s recent findings. “The good news was that 25% of the time the treatment worked,” said Dr. Carey, professor of haematology oncology at the University of North Carolina and medical director of the university’s Breast Centre.

The new finding on breast-cancer cell reprogramming “helps us understand why the EGFR inhibitor didn’t work in most patients, it helps us understand what cancer cells do, and it helps us design our next approach. Most cancer drug development right now targets kinases,” she said in an interview.

“One way to approach this is to use multiple agents at once, but if you add drugs you also add toxicity and expense. And in some patients the cell doesn’t reprogram. We need to understand how reprogramming works,” with the potential to develop agents that block reprogramming instead of trying to deal with the changes that reprogramming causes. “This is an explanation of why patients don’t respond to even targeted treatments, and it gives us a way forward to potentially prevent it. Reprogramming is reproducible and potentially targetable. I think we can get around it.”

 

I have the deepest voice… which although initially sounded quite husky and sexy is now rather annoying!

It’s been a few days since I have blogged and it’s crazy to think that I can’t really remember what I’ve been doing! Ha! Ok clearing my thoughts and working backwards I have regained my memory.. I must be getting old.  

Friday I went to Oxford to do some shopping…My best friend’s wedding is getting closer and I still haven’t got a dress for it so I thought I should get my finger out. Well it wasn’t very fun. I tried on hundreds of dresses but nothing is grabbing me. I love it when I find something that I love. I want to buy something that I can wear more than once. I did come home with something which is lovely but I got straight on the internet on my return and ordered a few more dresses! Either way I will be fine for Sundays’ wedding…Thank goodness for credit cards.

I felt much better today and far less tired… this I felt was a good sign so Pete and I had a quite night snuffled in front of the TV watching rugby. My favourite past time… watching men’s legs on TV! He… The problem was I fell asleep and missed it all. Oops…

Saturday we got up early and drove to the coast where our boat is moored. The weather was bright and it was so peaceful when we got there. Then we got on the boat… and it wasn’t peaceful! As per usual and despite all our efforts to get someone to look after the boat in our absence- there was no power. Everything had stopped working and we sat there scratching our heads. It was then we were told that the metre on the electric cable provided by the marina was faulty. Brilliant. So we couldn’t start the boat…… ho hum… it was still relaxing there. We drove back to an afternoon of yet more legs! Yeha.. And some sun in the back garden. I spent a few hours going through old photos and half watching Johnny Wilkinson’s team win.

I am amazed how much fun I have had in just the past few years let alone the past nine years with my bear. And what is really funny is how different I look through the years. I see pictures of me bald and think how weird it looks but at the time I thought I looked cool. Make the best of a bad situation and deal with it. That’s what I thought. It was quite liberating. I prefer having some fluff on my head now though…..

Saturday night we were joined by a friend as we watched the Eurovision song contest. Seriously why did we bother to waste three hours of our life?! It was mind numbing but weirdly entertaining at times. I have to say to drown out the noise we did indulge in my favourite tipple, champagne. A bit too much me thinks… uh oh.

Sunday was a very chilled day. It transpires that I have a chesty cough and my voice has nearly gone. I thought it odd that the very drained feeling I had been having all week… it must have been leading to this chest infection. Explains a lot. I also have been having diarrhoea. This is very odd for me but probably my body is being very sensitive and evacuating as much nasty toxins as possible. I do not believe it is side effects of the chemo. It has only just happened and much likely will sort itself out quite quickly. I don’t feel upset or drained from it so that’s a bonus. I wonder if because I am on a break of the reishi mushrooms and spores that maybe my body has been a little more susceptible to illness and stress. I never stop the green juice so this is all good…. it will combat any illness.

I had a cheeky afternoon nap before we went to meet new friends whom we met in Ibiza last year. Our friends had travelled from Cork in Ireland and happened to be in our city so we had some good banter and getting to know each other better. I love meeting new people. So much fun and promises of us going to Cork to visit them later in the year maybe. Good times.

As expected I was tired again and headed for bed before ten pm. I slept really well until about 3am I had to rush to the loo with a bout of diarrhoea. So not feeling the best I slept till 7.30am and have had a day of trying to get better combined with house cleaning… it has to be done at some time and it makes me feel better knowing I live in a clean home, plus getting rid of dust is very important in my health and well being. I have the olbas oil diffusing as we speak and intend on doing an inhalation and bath later to really shift this lurgy. I have the deepest voice… which although initially sounded quite husky and sexy is now rather annoying! I’m annoying myself… ha ha

 

I have now had time for the scan results to sink in and marinade. I feel so empowered by the lack of information on the report. The fact that I have no tumours in my lymph is outrageously incredible. The lack of fluid round my heart is seriously exciting and the fact that the tumours in my lungs have had little change but are too small to assess makes me think that actually they have got smaller since February or else the radiologist is just too lazy to do his job. Then there is the good news of it not spreading to any other organ. Ye ha! I tell you i can deal with results like that but the summary of stable disease is exciting but I want more! I want it to be all clear.

I spent some time Saturday morning visualising. I now visualise the tumours to be incredibly small and that I can squish them with my fingers till they pop or I get a pin and burst them like bubbles. The white bloods cells are much bigger than the cancer cells and the pink cells carry the chemo drugs to gobble up the nasties. I have to imagine them not being there now too and to be sure I give the lymph nodes a once over too. You never can be too careful!

So for an afternoon of stuff…. I must get better quickly! More champagne to dinrk on Sunday! Whoop!

A perfect bank holiday weekend….

Another bank holiday weekend gone in a flash but a very memorable one.

Saturday was fine weather so the Bear and I got to cleaning the car for the wedding the next day. Pete was the chauffeur for the bride and brides’ father. He felt they needed time on their own to discuss whether she wanted to change her mind at all! It’s the cleanest the car has been in a long time! We had a very early night as we had to be up at six am to get to the venue and start prepping the bride.

Sunday couldn’t have been any better than it was. I took my ivory umbrellas with me knowing full well that if I did the weather would turn out fine. Well it was an outstanding day weather wise, so much so that we all got a little tanned during the afternoon.

My best friend’s wedding was at 11am so at 8am I was doing her makeup, her hair dresser making up her  hair and her sister tending to all her other needs. She looked beautiful.

The venue was Dorton House, a school during the week and wedding venue at weekends. Absolutely gorgeous with huge grounds. It was lovely watching the bride and groom talking all the way through the ceremony. Nerves were getting the better of Liz. Bless her. Pete and I got quite fluffy as they said their vows and their marriage became official. We held hands and it took us back to our big day. That’s the great thing about wedding, you remember your own.

The lunch was delicious and the speeches very emotional. We were all in tears as Chris and his best man and brother spoke about their mum who has passed away this year. Tears were flowing but laughter soon filled the air.

After lunch there was a three hour break before the evening do so we made the moist of the sunshine basking in the sun on a blanket drinking Pimms whilst the boys played croquet and giant jenga. How time flies when you are having fun.

The evening guests arrived, all 100 of them! And the evening became a great celebration fo0 love and laughter. Hog roast, disco and much fooling around to be had.

Apart from injuring my foot… whichc I still don’t know what i ahve done to it, the day was just wonderful adn i’m sad it went so quickly. They are off on their honeymoon now… Not at all jealous!

Pete and I came home and pretty much did nothing but sit in the garden all day. Josh, Pete’s eldest turned 21 this week and he came over to spend the day with us, chatting and laughing… In the evening we went for a meal to finish off a perfect weekend.

I loved people watching this weekend. One lady approached me( I have to admit I can’t remember her name now) but she told me she follows me on faceboook and my posts always make her smile. She thought I might like to know but didn’t know if it helped knowing? I said of course it does. It fills me with joy knowing I am making even just a little bit of a difference.

I know people know about me and the illness I have when at those do’s.  I know I don’t look ill and thankfully don’t feel it. I just need to knock it fully on the head now so that I can really be successes…. kick it in the butt.

This morning I did not want to get up. Pete wrapped me up and left me in bed… Big mistake! I decided that I would meditate in bed instead this morning.. That counts right?! But once up on with my usual rituals and back to being me…. Time to focus on the last stretch of getting rid of teh little buggers inside me…I’m not convinced they are there. 🙂

 

I saw some interesting news yesterday of a lady who has been making heart shaped pillows for women who have had mastectomy and breast surgery. I love this idea.

Heidi Kilgariff, 35, from Bracknell, had the operation because she has the same mutated BRCA1 gene as Hollywood star Angelina Jolie.

She says resting with the cushions under her arms helped ease the pain and give support after surgery.

Ms Kilgariff has now signed up dozens of volunteers to make more cushions. They are being delivered to women across the UK about to undergo surgery and come with a hand-written inspirational message.

Ms Kilgariff delivers the cushions to her to her local hospital, Frimley Park Hospital in Surrey. Other volunteers have joined her campaign and deliver to other hospitals in the country.

She said: “It’s got a very deep V that goes under your arm.”It just takes the pressure off the wound and just gives that extra comfort underneath.”

The original design for the cushion came from a nurse in Denmark.

Ms Kilgariff said they were very simple and easy to make: “On the sewing machine it probably takes someone five minutes to run one of those up.

“There’s people doing sewing lessons for us, sewing groups are doing them, children’s groups are doing them, churches, it’s just gone mad.”

Dr Hannah Bridges, senior information officer at the Breakthrough Breast Cancer charity, said: “The fact that people will dedicate their own time to make these pillows, just to show someone they understand what they are going through at this difficult period when they are having this surgery, is a lovely thing to do.

“With the cushions the idea is that they make people feel more comfortable, it depends on how they want to use them though.

Here is a link on how to make them; http://www.heartpillow.dk/

Sooo tired…. someone wake me up!

Yesterday was an odd day for me. I felt completely and utterly wrecked. I simply couldn’t keep my eyes open and felt incredibly achy. I put the aching down to exercise. I had done Davina Intense DVD which focuses on HITT training, which means it is all very short and fast. But I did think it really odd that I felt that tired. I knew something wasn’t right so I tried to go with the flow and tried to relax a lot more. The problem was I really wanted to sleep and I kept dropping off but felt that I really should stay awake, so felt worse for it! Last night after tea I went straight to bed. I was asleep by 8.30pm! This is so unlike me! I slept heavily but with lots o dreams last night and eventually dragged myself out of bed this morning. I do feel much better but I have to be honest I could probably sleep all day today! I have clients today though and I am sure getting moving and doing something will make me feel much better and less lethargic. I felt a bit like I was coming down with a sore throat but I now feel much better. Phew… Maybe I have been feeling a little bit low this week and that would explain why I wasn’t bouncing around with joy when I got my scan results. I thought it was odd for me as I love any good news but I really felt disappointed for some reason. I think it’s because I can’t ever imagine the docs at the hospital saying I can stop taking chemo. I’m not sure why that bothers me? It is just like any other chronic disease like diabetes. Diabetics take meds for the whole of their lives and live well. I too can live this way. I just get the feeling when I am with the docs that they look at me like I am timer, and all the sand is running out. I don’t feel like that with Dr Nesselhut in Germany.

I sent my scan results to Prof Dalgliesh and Dr Nesselhut but am yet to get a reply. I really need Dr Nesselhut to tell me what happens next. I need to book time out and get all the hotels etc sorted.

I have today been looking into Medichecks again. They do testing for all sorts of medical issues. I am interested in learning my IGF-1 levels. IGF-1 is a growth hormone that we all have. Apparently if you have high levels it can mean you are at risk of canSer. I’d like to know if mine are true. Also if you do the fasting diet, this is where you have two days at 500 calories and the rest of the time a normal healthy diet that the IGF-1 levels can lower. This is very quite exciting. I’m not considering the diet as I like food too much. As well as this I would like to know how well my liver, kidneys etc are all functioning. Anything I can do to improve my physical state.

I have an afternoon full of clients and the sun is shining… Today is a good day. Let’s hope the weather starts improving as I could really do with some vitamin d. I am guessing this could be having an effect on my energy levels too……

The BIG Day.. Results are in!

So today was the BIG day… the results day. I coped quite well I think. I didn’t lose any sleep and I didn’t worry myself sick as I have done in the past but my heart rate was definitely higher whilst waiting today, and to make it slightly worse there was a 60 minute delay. Sadly I didn’t get to see Prof Harris today as he was off doing trials and research (I forgive him) but we did see Miranda another oncologist. As lovely as she is she isn’t the Prof. I always feel she is going to give me bad news probably because she always has given me bad news in the past! Poor thing… It was ok though because as soon as we walked in she said, ‘Good news!’ That’s a good start… The scan results were lacking in detail and I have now realised that the sparser they are means they have been reviewed by a certain radiologist. I have checked all my last scans and the ones that are really thin on the ground are by the same one. That’s not a bad thing necessarily. Although I do often feel like I have things unanswered.

I am not sure if the consultants read all prior to scan reports but this time I was told that they had stayed the same since February; that there had been no change. This was ok I guess. But once we had discussed things then left we checked the results ourselves. What it actually says is the following;

The pulmonary nodules remain small and difficult to objectively assess. There has been little change in size. (Now this to me wasn’t great but Pete says that this is great news. This means they must be small.  We asked about the necrotic ones but we were told that as it wasn’t mentioned that it can’t be there any more.)

No lymphodenopathy. Wow…. Lymphodenopathy means disease of the lymph nodes. NO lymphodenopathy means no disease present! This is the best news… I had many nodes that were affected by canSer and these were the ones that were growing quite quickly and were the biggest for sure. None… yeha!

Unremarkable liver, adrenals, kidneys, spleen and pancreas.
No bone metastases

This means the canSer hasn’t spread!!

There is no mention of the pericardial effusion (fluid round my heart) so I can only assume it has gone completely! Yeha again!

Ok I have to admit I wasn’t bursting with happiness to begin with. The news wasn’t that ground braking initially but on reading and taking it in the news is AMAZING!

I really had hoped that they would say there was no canSer present in my lungs but I think I’m almost there. I guess what got me down a bit was being told that seeing as the chemo drugs are working and I am tolerating them well don’t rock the boat and continue to take them.  I secretly thought I may be able to have some time off it. I know Pete is right when he says if it’s working then we should definitely continue with it but I am worried that taking this kind of extreme drug will be have an adverse affect on me at some point.

The oncologists always say when it doesn’t work anymore then we will look at using something else. They immediately assume that it won’t work and that will ever go away. I so want to prove them wrong. We discussed immunotherapy with the oncologist and she just smiled and said that Prof Harris is interested in immunotherapy for his research but there is definitely nothing in the pipeline for mainstream treatment to include it in the near future. We said it was a shame as it was not only costing us a lot of money but it clearly has so much potential for others to benefit from.

So I leave with mixed feelings… I am overwhelmed and overjoyed at seeing Pete so happy. But I am confused as to whether the oncologist could have given some more detail and told me exact sizes of the lung nodes to know if they really have stayed the same as before or if indeed they have gotten much smaller.  I reckon they have. I worry that they will never believe that it has gone and continue to try and get me to stay in the system taking something toxic. And I suppose I really believed it would all be gone by now… I felt it had but now I need to work a bit harder to make it go fully.

I never intended on stopping but I would like to know that I could visit Germany less and have less going on. But Pete thinks whilst it is working that I should crack on really go for it for a few more months at least. I find it tiring going to Germany so often although I am so lucky and really cannot believe I have got the chance to go there for such amazing treatment.

I feel like I want to have life a bit easier for a while. I know it sounds crazy but I do feel like I am having a battle all the time. I want time off… properly. But I wonder if that will ever happen. This is where I need to really embrace life and realise that this is it. It doesn’t get better than this. Life is brilliant and I feel brilliant. What could be better? I want to be a miracle. I want the canSer to be gone completely. Then I will be beaming from ear to ear and doing the running man dance. Maybe my expectations are too high.

 

Anyway what has put me in the best mood is seeing the overwhelming support before and after getting the results. It’s incredible the amount of people that have commented on facebook with their words of happiness and love. I really am overwhelmed. That’s the only way to describe it. I want to thank everyone so much for their constant encouragement and words of support. I am driven by it and will continue to work hard. I can feel the positive vibes all the time and I do put my good health down to every single one of them… Thanks for rubbing your crystal bracelets too… I knew they would come in useful. J

So now I can at least relax and let the fear and the unknown go for a while now. I don’t have to go back to hospital for 6 weeks and I just get on with my chemo drugs myself.

In the news today Angelina Jolie has reported to have had an elective double mastectomy after finding out she has the BRCA gene. Her mother died of ovarian cancer. By doing this she has reduced the risk of getting the disease from 87% down to 5%… Plucky lady but a no brainer especially as reconstruction is so much easier at when doing it this way. This kind of news will encourage anyone else who may be in her situation. I would never think twice about it and you never feel less of woman. I only have one breast and I still feel the same. I am loved the same and look the same and that’s without reconstruction.

I had message this morning from one of the ladies from Nicola Jane lingerie asking me if I could be interviews on Radio Oxford regarding breast cancer. Sadly I didn’t get the message in time…. next time…

I am the Fairy Claire Mother!

Another weekend has passed by with a blink of an eye. As ever it was action packed. Friday night we met friends for dinner and made news friends too. It was an evening of much laughter and goofing around. Good for the soul and how my cheeks ached. I went to bed with a smile on my face.

Saturday my best friend and fiancée came to visit. They are getting married in two weeks and I have been sprucing them up preparing them for their big day. I spent a few hours whitening their teeth and making the bride to be eyebrows spectacular. Pete as usual the host with the most decided that despite the grotty weather that today would be our first barbeque of the year.. Under a gazebo. And in true Pete style didn’t forget us little ol’ veggies. We had lovely vegetable kebabs along with butternut squash salad. Delicious!

 Still tired from Friday night Saturday evening was spent chilling in front of the TV. I was incredibly tired so bed by ten was perfect for me.

Sunday was more unusual and exciting as we attended the Christening of our good friends and I was one of the god parents! I like to call myself the Fairy God Mother or fairy Claire mother! Ha ha! (Picture me in a pink tutu with wings and a wand!) Pete read the responses and was very brave. I wouldn’t do anything like that. I would simply burn with embarrassment.  It was good seeing both their families and most of all seeing the little bundle of joy who was very brave and quiet. Such a happy boy.

I can’t help but think I could have a little bundle of love. I watched all the other children playing and wonder what mine would look like. I’d be a good mummy. I’m sure of it. At this rate I’ll be having lots of cats and dogs to replace the void. That’s not such a bad thing. I am just very aware of getting old and having no family to be with. I’m thinking that far ahead!

The rest of the evening was spent cuddling. It has been proven that cuddling is good for the immunity and helps healing. Now that makes my bear even more important, if that’s possible! I knew I liked cuddling for a reason. Any excuse and now I have a brilliant one.

This morning I dragged myself out of bed. I simply could sleep forever! But then that would be lazy and boring… I had to have an early start as I drove to Milton Keynes to the Dermaspa to have my eyebrows tattooed. I had them done a year ago when I lost all my hair and they haven’t grown back fully. The hair has changed from being coarse to fine and they are very patchy. Luckily for me Nilam, the founder of HD brows, kindly offered for me to have them done free of charge. Her technician Cathy was amazing. And I am pleased to say I now have a wonderful set of brows again… The magic of it!

Whilst there I bumped into all the HD brows trainers who are just so lovely.  It’s hard to believe I was there doing my training two years ago! Nilam was lovely too and wants to call me later to discuss me going to help on their stand at their next trade show. I feel so honoured to be asked and to be honest it’s the least I can do when they have done so much for me. Exciting!

I am back home already and feeling really good. Despite the hospital visit tomorrow, I am not letting that dominate my mind. Although it’s hard not to let it creep in every now and then. I do think I need to focus my thoughts on something more positive. I am wondering what will happen. Will I be back on chemo Wednesday? Will I be going back to Germany every month again for vaccinations? Or will I be told that I can have a break for a few months to see what happens as there is currently nothing there? I am ever hopeful that the results are clear. It’s so hard to think ahead as I am always being reminded how delicate life is. I have to admit that it would be nice to have time off of this life. For a bit. I wouldn’t want to change my diet back or to stop my rituals every day but I would love to know that I can plan ahead. I know that today is the most important but it is only natural to plan ahead. That’s what you do when you have kids. You don’t expect to have them and not to plan way into their future too. I feel like I need time off. I know it sounds daft. I have the easiest life going in many respects and my life is one big celebration (and would be more so if Pete and I had our way, a bottle of champers every night celebrating love or happiness or anything!)But I could really do with not being on red alert. I can’t imagine how bad it is for Pete and my loved ones either.

This afternoon once my chores are done I am going to read some more, and make plans for the future. More holidays are in order and more life experiences…

Research:

Here is some exciting new research working along the lines of immune therapy. It seems triple negative could really benefit from this kind of work;

http://medicalxpress.com/news/2013-05-immune-surveillance-war-cancer.html

Time for tea and salad me thinks……. and to keep checking out my new brows. EEK!

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