Monday 11 August 2014

Week 22 - the only way is up!

Monday 4th August

Song of the day (LH): Faded - ZHU
Song of the day (VW): Exhale - Whitney Houston

Good morning! And I'm feeling (Nina Simone style) tired...Aside from my body being in recovery mode I keep waking up being hot and cold overnight which is not aiding continuous hours of sleeping. I had vowed to stay up after dropping DW at the station but this didn't happen and consequently some more snoozing did. Our neighbours have started to build a conservatory extension so it was a case of windows closed, fan on, ear plugs in. Snooze.

It was soon time to go to yoga, my final session pre op. The song choice of today is dedicated to yoga as the word exhale is used frequently to focus on breathing. Plus it's a nice relaxed tune to sing along to.

I spent most of the day catching up on Wonderland writing, in my outside office with jazz24 on in the background.

As we had both enjoyed our walk from the previous day, we decided to take a stroll after dinner. Location of choice was the tow path from Boulter's Lock to Cookham. Our timing couldn't have been better as we got to watch the sunset across the fields and feel the serenity and tranquility of the river. It was absolutely perfect.

Photo no.473 - dappled sunset.



Photo no.474 - tranquil contemplation.



Words can't really express my feelings for photo 474. It captures a lot of things that I love and adore. DW, river, reflection, thoughtfulness, serenity, nature....you may not feel or see these things but I guess the old adage of beauty is in the eye of the beholder comes into play.


Today was a significant day. It commemorated the 100th anniversary of Britain entering the First World War. Sir Edward Grey's famous quote 'The lamps are going out all over Europe, we shall not see them lit again in our lifetime', was brought to life once more with households, ours included turning off lights and lighting only candles as a symbolic sign of reflection and hope. Thankfully, the lamps did come on once more in Europe within Grey's lifetime and I believe it's important that we remember the pain and suffering that this generation went through and cherish the belief, determination and hope that finally brought reconciliation. Watching the service from Westminster Abbey, certainly gave me an hour of reflection. The other significance of today was for DW and I as it marked the 6th month anniversary since I was diagnosed. Six months, such a lot has happened. So during the hour of reflection it gave me a chance to think about battles, collective and individual, never knowing where they may come from but knowing that it's human spirit that will win through in the end.

Tuesday 5th August

Song of the day (LH): Dark horse - Katy Perry feat Juicy J 
Song of the day (VW): Summer Son - Texas

Tired baby tired. It continues. In fact I felt exhausted and just wanted to cocoon myself in the house. I wasn't feeling depressed, I wanted to be on my own, on my little island. I didn't really feel like doing anything, unlike me. Everything felt hazy, so nothing good or bad just blah...poor description I know.

A nice parcel arrived in the post, it was a couple of beautiful headscarves that Tori had made for me. She's is really talented and makes stunning things for children and adults. Sales pitch...check out her Etsy store: https://www.etsy.com/shop/VictoriaGraceClothes

So the day happened with some blogging, my parents popping in, a short walk into Maidenhead to get some blood flowing and prepping dinner. For whatever reason, I have more energy in the evenings, so it was good that Leonie was coming then! I definitely perked up and it was great to have a proper catch up with her, as it had been far too long. As we were both tired, Leonie left fairly early and tagged teamed with DW returning from tennis. So the second sitting arrived for dinner! ; )

I feel I should write a couple of positives....there is something about feeling positive that will bring positivity. Hence the wave of 3 positives that is going across Facebook. Davinder kindly gave me a personal gratitude diary, the benefit being that if those around you are in the same mindset then this greatly helps the body, based on the findings of this man - http://www.masaru-emoto.net/english/water-crystal.html. The website will explain it a lot better than me!

So a couple from me...firstly my voice had significantly improved.Talking now wasn't a major effort!

Secondly, I don't know if LH's song of the day choice had been in response to this viral video but if not coincidentally I saw this, which is absolutely hilarious! The baby's face makes me smile every time I see it. Happy watching.

http://www.huffingtonpost.com/2014/08/05/katy-perry-baby-dark-horse_n_5651134.html


Wednesday 6th August

Song of the day (LH): Touch - Shift K3Y
Song of the day (VW): Sandalia Dela - Nicola Conte

The tiredness saga continues mixed with some spaced outness...medical term! ; ) I had a couple of hours at home before I had to drive up to the Marsden but time seemed to float by and I felt I had achieved very little. I know that's ok.......

I heard the letterbox go and saw the postman trying to push a small package through. It had got stuck so I opened the door and between us we got it out. The contents were a gorgeous gift from the lovely Lydia who I really need to catch up with! My fault we haven't! Thank you so much! xxx


Photo no.475 - a blooming nice biscuit!




Today's Marsden appointment was more for my benefit to run through pre op questions. I was meeting DW in the ward. The challenge was to find it! I could remember everything until I got to the top of the staircase...left or right? I went to the left which of course was wrong! However, a really kind lady said she would take me to where I needed to go. Luckily in the meantime we also scooped DW up as well! Thankfully Gwyn was running late so it didn't matter that we had walked most of the Marsden to find her.

I was so grateful to have this catch up as it answered a lot of questions linked to the surgery but also ones generally about my diagnosis that the answers hadn't been forthcoming with. First job, run through the consent form one more time, for me to digest once more and for DW to understand. Then sign it. This always feels strange but it was done! Second point on the agenda (!), run through my initial diagnosis that had come through on a letter from Dr Davis that morning. We learnt a lot. My oestrogen score was 8/8, which should mean that I have the best possible response to Tamoxifen, a drug that I will take soon after surgery for at least five years. Another insurance policy against recurrence. Writing this now, I understand you may be asking why I hadn't asked the details behind this before. Well I had but I had been told that scores were good and not to worry about the detail. Having asked a few times and receiving the same answer I decided it was 'best left' to the medics. However, Gwyn gave me a new angle of rather than just saying things were good, she explained why! Why is such an important question to use in life. Children use it all the time but often as adults we use it less. So time to bring back the why! Gwyn also explained that my breast cancer was grade 2 stage 2. This link will explain what this means better than I can: http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Breast/Symptomsdiagnosis/Stagingandgrading.aspx

The relief factor was that currently they are treating me with curative intent. I'm hesitant about writing this in black and white as who knows what will happen but those two words, curative intent, carrying heavy significance and positivity for us. Had the grade and stage numbers been slightly different things could be drastically different. So we are extremely grateful for these two words.

One of my other long standing questions has been how long has the tumour been growing for. Again, this has been a closed down question when I've asked before. Today I got an answer. Probably two to three years.....wow. I still wonder why I hadn't clocked my tumour sooner but the position that it had grown from and now knowing the potential time frame, it makes sense. Often in life things slowly happen over time and you don't notice them until potentially someone else points them out. Whereas if they're sudden you definitely do notice pretty pronto! 

The final bit of info I'll share with you is that I asked for Gywn to have a look at my blood test results from the previous week as I wondered what my platelet score was. It had been low for some time, so I wanted to know that it was at a normal level before an incision was made. Platelet score fine. White cell count was 2.7. Mmn ok this makes sense why I'm feeling so tired and run down. To put this in perspective normal is 4-11 and to have chemo you need a score of 3, as you'll probably remember from my previous entries! Gwyn said she'd chat to Fiona the next day to double check she was happy to proceed on the planned date. To aid them I was asked to do another blood test, which I was more than happy to do.

A big hug with Gwyn (I'll only see her post surgery now), we walked over to the blood test clinic. DW left me to head back to work and I waited. It was only short like the test, though today's nurse was no angel hands Regina or Felicia that's for sure! I got into the lift to go the ground floor. The lift stopped and I went to hop out but realised it was only the first floor and an older gentleman got in. He had mid length wavy grey hair. We smiled to acknowledge each other. Then he said 'It's falling out'. For a moment my brain couldn't work out why he was saying this. I then noticed the grey hairs on his black t-shirt. Poor thing he was having chemo and it was the start of operation hair loss. My brain also was wondering why he was saying it to me. I then realised. I was wearing a head scarf. I often forget about this. So of course that's why he was talking to me! Engage brain VW! He also mentioned that he was going to get his hair shaved off later that day. I gave him full compliments on this as I mentioned that I've never been brave enough to do this. I also encouraged him to find some good baseball caps and summer hats, as he would look great in these. I walked away feeling humbled by this man. It goes to show hair loss affects us all no matter what age or gender. I know for some of you it's permanent and you probably have less sympathy for those of us who, hopefully, have this as a temporary affliction but it's still nevertheless traumatic.

Rather than driving home, I dropped into Chiswick to see Emily. I was tired but it meant that I could see her and also get chauffeur DW to drive me home later. I got there a bit early, unusual for me, so took a short walk to a lovely bakery called Lavelli, to firstly use the loo and secondly have a sweet treat. As it was a lovely hot afternoon, I settled on an iced coffee. Walking back to chez Wright-Deadman, I saw this....

Photo no.476 - right on....




After a lovely relaxed catch up with Emily, I left with a jar of homemade granola and one containing piccalilli. DW came and picked me up....we needed to buy food for dinner and get home and cook it. Boy logic came into play and it was recommended we went to GBK, as it would be quicker than the buying food option. Given my low levels of energy I was sucked into boy logic....it turned out that it was a good shout though and we had a great meaty dinner...to be slightly healthy we omitted the fries that were available and settled on a healthy slaw! 


As we drove home, a beautiful sunset was drawing over the M4. So romantic! ; ) A good day despite tiredness levels still being high. I'd like them to drop soon as it does sap some of my positivity. Tomorrow is another day, so we'll see.


Thursday 7th August

Song of the day (LH): Down on my luck - Vic Mensa
Song of the day (VW): California Soul - Marlena Shaw


Sleep, sleep, sleep that's all I want to do. Time to play a new tune! With the small amount of morning I had available I finished a blog post, so I was finally up to date! Woo hoo! For lunch today, it was a special treat as I was meeting my parents at The Crown. I'm not really a fan of a main course at lunch, so was very happy to see some sandwich options including this one......

Photo no.477 - salt beef open sandwich



If you like salt beef then I can highly recommend this, especially the pickled cucumber. It was delicious! 

As my parents were going for dessert I was cajoled into ordering something. Hazelnut is my absolute favourite flavour of ice cream so with that on the menu I had to go for it!

Photo no.478 - roasted hazelnut ice cream



It came with a side of caramel sauce, which was more like a butterscotch sauce and didn't really go with this flavour. Still it was nice to dip my spoon into! The flavour of the ice cream was good but it was disappointing as there were quite a few large ice crystals in it, so I probably wouldn't order again! My dad on the other hand seemed very happy with a bread and butter pudding!

The weather was absolutely perfect to sit outside in the courtyard and balm in the rays coming through the vines. Thanks Mummy and Daddy for a lovely lunch! Sorry my energy levels were lacking.xxx

After lunch two tasks were set. One was to finally get my advantage card....check!

Photo no.479 - finally...entry to Windsor Castle!




The other was to buy dinner for that evening and for a veggie BBQ feast that was planned for the following evening. I needed provolone for the mushroom burgers. I've never tried this cheese before but assumed Waitrose would have it but no! Mmn...where I can get a specialist Italian cheese from...oh yep, the Italian supermarket. Result! When I got there they had three strengths of provolone...argh! Which one to choose?! I asked the lady behind the counter and she said she never used this cheese for cooking, so implied I was making a big mistake! Ok, check the recipe. After finally managing to get enough signal to find the recipe, it definitely said provolone not provolona which was another option available (a smoked mozzarella). Right, one mild and one strong that way all bases covered!!!

In the deli I also discovered this.....

Photo no.480 - found one!


I don't know if it was having a decent sized lunch but later that afternoon I felt like my energy levels were starting to rise. Good, good keep going!

That evening I had lovely catch up with an amazing person, while DW was at the gym. It seems he exercises and I eat! That's going to have to change soon!

When he picked me up, he mentioned that Gwyn had called to say that my blood count was still a little low but that Fiona was happy to proceed. So surgery is a go, go! I've got mixed feelings about this as part of me would like just one week of feeling good pre surgery but equally best to get the job done asap! So that's what it is.

Friday 8th August

Song of the day (LH): A horse with no name - America
Song of the day (VW): Good life - Inner City


Well good morning Vietnam! That's right I almost felt as chirpy as Robin Williams! Oh my goodness, it felt like a chemo fog equivalent had been lifted. So this is what it feels like to have some energy. Hurrah! I'd also had one of the best sleeps with limited sweat attacks (nice!), so that probably helped a lot as well.

I was feeling so good, I decided it was time to do a piece of actual work if my laptop allowed me in. A few attempts later I was on the phone to the IT helpdesk. Thankfully it was a small task of resetting my password which I was unable to do from home due to not being connected to the network at the point of sign on. I'm sure you really needed to know this! In any case, I managed a couple of hours of work and got an overdue task done! Good job! ; )

The doorbell rang and the postman was there holding a big box. Assuming this was for a neighbour I was absolutely delighted when it turned out to be for me! Here's what I found!

Photo no.481 - Deutsch love!





An overwhelmingly incredible parcel of joy from the Deutsch clan! I was absolutely bowled over and speechless with how thoughtful the contents were. The photo mug brought a tears of emotion and laughter at the same time. Laura and Ally, in the words of Miss T Turner, you're simply the best. Thank you so, so much! We can't wait to catch up with you properly for some more dancing!xxx

What a difference some energy can make! I was feeling so much more like myself. I just would love a few more days like this before getting hit once more....

After lunch, Rachel, Maddie and I took a walk to Guinea Pig island, otherwise known as Ray Mill Island. The weather was perfect even though dark clouds were looming on the horizon and there was time for some ice cream...mint chic chip. Oh yeah! It still reminds me of Gino Ginelli...you know this ad...https://www.youtube.com/watch?v=0Wu-aNr7v0U Enjoy! Tutti frutti what a cutie take a Gino home with you! Post walk there was time for a quick coffee and some play time before I prepared the veggie feast!

Photo no.482 - belated happy 6 months 'birthday' Maddie!



Photo no.483 - smiles all round!




Tonight's menu was portobello mushroom burgers with provolone and lemon & oregano vegetable skewers. Planning to BBQ today was always a gamble but I ploughed on regardless. DW was running late home, so it was down to me to make the call as to whether or not to light the BBQ. I was just about to light the charcoal chimney when I felt a few spots of rain. Hmm...this may just be a passing shower...oh no it's now sideways rain! BBQ off. Thankfully both of the dishes could be grilled so it wasn't a disaster! In fact if I hadn't spent time creating the veggie skewers, then it would have been a simple case of placing them in a roasting dish but having gone through the painstaking task of assembling them, they were staying as skewers!!!

Our guests for the evening were Ben and Emily. It's always fabulous to see them and Emily brought a blackberry and apple mallow tray bake - amazing! http://www.bbcgoodfood.com/recipes/blackberry-apple-mallow-traybake


To round the evening off, we had a game of Crazy Cuts, affectionately dubbed Cut It for whatever reason! The boys romped ahead but by the end it ended up being a draw. It's basically Pictionary with scissors and it's hilarious seeing how people create the item on the card. 

Photo no.484 - the master at work...





Photo no.485 - concentration...


A wonderful evening. Thanks for coming and braving the elements!xxx

Saturday 9th August

Song of the day (LH): Boom clap - Charli XCX
Song of the day (VW): Holy city - Joan As Police Woman

As James Brown sang, I feel good! Oh my goodness what a change. I woke up feeling a lot, lot better than I had in a long time. Awesome!

My parents popped in for a coffee while we had breakfast. It was such a nice morning for breakfast on the terrace, particularly in the sunshine. The shade was a bit nippy! It was a wig wash day for me and a hair cut for DW, so after a quick turnaround we were on our way to Putney. Ben was telling me about his visit to the south coast the previous week and was showing me his photos of Bournemouth, Poole and Weymouth....wait a minute that doesn't look like the Weymouth I went to. Beautiful houses with a marina in front, that's not what I saw! It turns out if we had walked to the far right of the pier then we would have discovered this really stunning setting. Oops! Next time!

As is customary post a visit to Stephan's we went to to Tried & True for some brunch.

Photo no.486 - standard post hair/wig-dresser's brunch!




Photo no.487 - pancakes!!!



Pancakes aren't always the first choice for me but they came highly recommended so I thought I should give them a go. It turns out they were good! Clearly very healthy! Next stop was Kings Road to go to Peter Jones. We both commented later that today felt like the first normal day in a very long time. Doing things that we would often do on a Saturday and forgetting what had happened over the last 6 months. Had it all been a very bad dream? Ah no but still it was amazing to have an afternoon together where we were just being and not thinking. Again I was thinking it would be good to have surgery a week later but hey that's not the plan so just crack on.

We'd been invited to go out on the Hamilton's boat this evening but trying to be sensible decided that staying at home would be the best plan. As it was dry and looking like that it was going to stay that way we decided to BBQ! Kim came over and we had a relaxed BBQ steak dinner. Yum!

Photo no.488 - sunflowers...to brighten up any day!






Photo no.489 - BBQ feast!


Photo no.490 - FIRE!



A very good day. One of the best that we've had in a long time. I'm so grateful that we had been given this day to feel like ourselves once more.

Sunday 10th August

Song of the day (LH): Wonderful life - Black
Song of the day (VW): Piece of my heart - Erma Franklin

The calm before the storm...I woke and instantly felt alert. Pre op OCD was about to set in with all the various tasks I felt I should do pre surgery. None of them really mattered but instinct took over. So most of the day was spent at home doing things here and there. It was raining and it actually felt therapeutic to hear the rain pattering down and for it to be a lot cooler in the air.

In the afternoon the rainy weather cleared and we went for our customary Sunday walk. We decided to go to the same place as last week, as so relaxing to have the countryside and river either side of you.

Photo no.491 - picturesque fields



Photo no.492 - the storm is brewing...



As we headed back the clouds were getting darker and the wind was really picking up. We were either going to get drenched or just make it back in time. Walking through some of the open fields it was a bit of a battle going against the wind. Then the rain started but thankfully we were nearly out of the woods, so to speak, so it was short lived with minimal water damage to ourselves! Heading into the last field DW turned around and saw this...

Photo no.493 - somewhere over the rainbow...




There was something about the way that we had walked through each element of this weather front that felt a good analogy with what we've been going through over the last few months. Moments later the sky turned to this...

Photo no.494 - blue sky and sunshine!



A totally refreshing walk in an utterly stunning location. Good times. Standard Sunday - walk then dinner!

You're probably wondering what's for dinner then! Tonight was Ching's Dofu ru haddock with a citrusy salad. I actually used seabass, as the previous day I found some wonderful looking fish. It's one of my favourite dinners!

Photo no.495 - Ching's Dofu Seabass (!) with a citrusy salad and brown rice




Later that evening, I started having moments of feeling scared, as surgery is tomorrow. Ah tomorrow! DW asked me what I was scared of. It's actually hard to answer. There's the of not waking up, which got brushed away as ridiculous. I suspect my fear is of the unknown. The next 24 hours are going to present a heck of a challenge, which fundamentally I don't have a choice but to participate in. It's a totally bizarre feeling and not one I'd recommend. 

To avoid the trying to go to sleep bit, I decided to stay up catch up on The Honourable Woman, which provided a good hour's worth of distraction. I think it's better to go to bed tired than force yourself and lie there with your mind whirring. 

So a really positive ending to week 22 in that we had had some normal time once more. We both needed this, DW in particular. A morbid part of my wants to write a long monologue ahead of tomorrow but now writing this on the morning of surgery, I feel strangely calm and relaxed about today. The sun is shining and the sky is blue. So let's see what today brings for me and you.

Sending all of my love to each and every one of you...and my heart and soul to DW. Signing out for this week. xxx

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