Monday 5th June
It had been tricky falling asleep the night before, perhaps I was more nervous than my conscious mind was conceding about today. But then the classic happened...the alarm went off...felt sleepy so dozed and then by the time it went off again we had very little time to get ready! Ooops. Plus I hadn't packed for my Chelsea overnight stay.
It felt like lots of waiting this morning...on arrival we checked how long it would be to see Dr P. The wait was fairly long so we decided to go and get my blood taken. This is always needed before chemo to see if you're strong enough to have the treatment and it takes 90 minutes to get the results. It seemed a lifetime of waiting for even this to be done and so finally we went downstairs and waited for Dr P...in realtime this was only about 90 minutes but for some reason it took longer.
Due to the pesky disease in my back, it appears that I need to have an additional drug to Carboplatin to tackle this element. We know, well think we know, how my body tolerates Denosumab so I had thought this wouldn't be given but the news today was that a drug called Zometa would be given instead...the downside, I could feel similar side effects. So good that I was staying in.
After coming out of the consultation, the lovely Julide was waiting for us as she was my chemo buddy for the afternoon. Due to staying overnight, I was allowed to have my treatment given in my room, so off we went to find our room for the night. Room 6, Wiltshire Ward...haven't been here before but it seemed pretty reasonable...so we settled in.
Then more waiting...then DW came in looking pretty glum...he had just seen Diana my nurse and my neutrophils were too low for treatment to go ahead...part of me felt relief the other part disappointment...Three years ago I got to the last round before having to postpone but equally my body needs to be strong enough to take the treatment. Diana closely followed Daniel in and confirmed the verdict...had it not been my birthday later in the week we may have tried again later in the week but the view was an enjoyable birthday took precedent! Time to pack up...and the message that I heard loud and clear was to rest, rest and more rest.
My left knee has been really achy, so Dr P, decided to X-ray...when I got to the department there was mention about lying down for the scan and we all know how I feel about that! Thankfully with some ingenuity from the radiographer, I was able to have both views done standing...phew.
In order to not let my lovely chemo buddy down, we went off to find lunch whilst DW worked (and perhaps needed to do some shopping!)....I worked with Julide during my secondment at Breast Cancer Haven last year and loved every minute of working with her, so it's been wonderful to keep in touch and have a proper natter today.
Ladies who lunch...
Towards the end of lunch my tummy was rumbling and I wasn't feeling myself, so I knew I needed to make it pronto to a toilet as the cafe didn't have one. We started walked towards the Conran shop...on the way I just knew I was going to be sick...I wasn't going to make the toilet this time...a suitable area of kerb was identified...I felt mortified but thanks to having a trusty walking stick hopefully I wasn't judged too badly by fellow Fulham Road frequenters.
DW then called as he wanted to head homeward bound as his hayfever was terrible...so not the best day for the Welinders...sorry Julide for not being a top lunch buddy! I slept in the car and snoozed on the sofa when I got in...the magic r word was definitely needed.
Nurse Lars arrived this evening and thanks to the amazing Rachel Aldridge we had a homemade lasagne which had magical healing properties as I felt so much better afterwards.
Today was a difficult day...one where I had not realised the mental impact of not having chemo was going to have on me...despite this today's gratitude goes to DW for all of his love and support, for Julide supporting on a difficult day, listening to the rain and for nurse Lars' arrival. Tomorrow will be better.x
Tuesday 6th June
A rainy Tuesday but rainy days are good for rest. Mentally, I felt rather subdued today and my tummy was still a bit queasy. I felt super tired for most of today so rest was definitely the name of the game. For some reason yesterday really scared me. I guess having had over 2 weeks at home with no medical intervention I had slipped into a happier place and moved away mentally from what's going on but yesterday's hospital visit brought this all to be very real again...it's ok...and I know it's ok to feel like this...just need some of the VW positivity to shine through...but these days are allowed.
Tiredness hit like a b*tch today and I couldn't even face cooking dinner tonight so DW took over, with nurse Lars supporting....
The boys in the kitchen...
Normal order needed to resume for tomorrow as nurse Lars has many strengths but cooking is not one of them, so best to recharge my batteries, as DW was going off to Lux in the morning.
Today, though was also one of celebration, in that it was Sweden's national day!
A proud Swede celebrating!
Today's gratitude is for DW who is working, shopping, cooking, giving the best hugs...he needs some escapism and a night in Luxembourg will hopefully give him this. For Nurse Lars renting a car for those just in case moments, for hearing the rain and sensing it's cleansing but chilly properties and a simple one but important one...being able to move around.
Wednesday 7th June
A tough start to today...I decided to shower first as wanted to wash my hair and have it dry before we left to go out but towards the end of this I nearly fainted so it was a sprint finish to grab my towel and unlock the bathroom door just in case...I think my mind had gone into a bit of overdrive and this had transmitted into my body. Once dressed, nurse Lars sat me down with some water and a banana and I luckily perked up as we were heading to Breast Cancer Haven for acupuncture. Normally I go and say hello to the team but today I was conscious about white cell count and also not feeling myself so sorry Haveners for not coming to say hello (well apart from Francis who spied me!).
Today was a talking day with nurse Lars and lots of emotions were let out....many tears but overall a good release and I felt a lot better for doing this and could feel positivity being restored. Arriving home, I set nurse Lars up with some practical tasks...including....
Nurse Lars sets to and vacuums...
Thanks to Emily, there was a Feel Good Fish Pie available for tonight's dinner so all that was needed was to buy a fish pie for nurse Lars and add some greens on the side. I literally have not seen anyone so excited about a shop bought fish pie as this man below...
Sheer pleasure...
Overall, it's been easier this time with DW away...I guess keeping busy is key. I also started to feel better within myself due to the emotional outpour and signs of my cheeky personality starting to reemerge. Friends had been asking what I had wanted to do for my birthday and for the first time ever I had been really downbeat about it but tonight I was now up for planning something!
DW sounded tired on the phone...this whole scenario is taking its toll on him and I so wish I could wave a magic wand and make it go away and rewind the clock to a year ago when things were so different....DW I wish for this more than anything in the whole world.
Chin up VW and carry on...
My bedtime companion in DW's absence....
Today's gratitude goes to nurse Lars for operating as chauffeur (MW you would still not be happy with his driving!), nurse, counsellor, sous chef and cleaner. Watching the birds in the garden, starting feel better and more proactive and for all of the lovely people that have been keeping in touch...I am so very blessed to receive so much love from so many people.
Thursday 8th June
A slow start, so much so that when Wonechen arrived at 10.30 I was still in my PJs..observantly she noticed that I was wearing our school's t-shirt...a t-shirt I should note that is still too many sizes too big for me but bought that way so that I would grow into it when I was 12...mmn that still's not happened!
Today was all about bimbling, getting frustrated as I thought I had lost all of of my photos due to an upgrade on my mac (thankfully found thanks to apple support).
My mindset has once again been injected with positivity once more and this no doubt is having a positive impact onto my body...fingers crossed!
I caved today as yet again I didn't feel like cooking, so nurse Lars and I had a pizza for dinner...still with some salad on the side so not all bad. But overall a day of rest. However, I took the opportunity to drive with nurse Lars to Heathrow to pick DW up from the airport...to me he's the most handsome person so it always makes me smile when he walks towards the car. : )
It feels good to have a mindset change...being in what can feel like isolation is hard when fundamentally you're a people person but my body needed rest so that's what I've fed it so now to feed my mind with what it needs. : )
Gratitude today for nurse Lars and all of his duties, seeing my bird friends in the garden, my positive mindset returning (it's been a tough few days), seeing DW walk towards the car at Heathrow and for feeling loved and supported (mega shout out to Karen S).x
Friday 9th June
Happy new year to me! Welcome to being 36!
A weird birthday in this brave new world we find ourselves in....it's awful to think this could be my last but something inside yells a loud NO! So there will be many more to come and celebrate so that's what's going to happen. Right...glad we've got that sorted.
Thanks to some crying children next door it was a fairly early wake up call...boo...but thankfully I managed to doze and relax before heading down for breakfast.
I've been so overwhelmed with love, messages, gifts, flowers, cards and laughter today...I was bowled over by a song my amazing friend Sarah had recorded for me (S - hope you don't mind me adding here but it was really special so felt it needed sharing!).
As for DW's gift...well he didn't need to buy anything as simply being with me is a daily gift but as previously mentioned it was all about the walking sticks...but as DW doesn't really enjoy birthdays his planning was a bit lastminute.com so he bought some 'joke' sticks whilst in Luxembourg.
Evidence of some sticks...
However, also knowing DW well means that he cuts it fine to get to the airport and most of the time only takes carry on...hence with check in closed he tried to take the sticks through security, only to have them confiscated! Though his levels of research tell me he has looked into which sticks to buy....they're just still in their retail location.
Gift number 2 was a voucher for Cliveden House, with the idea that I could go swimming in their new spa. All good in theory but in reality spa's are not great from an immunity perspective so not the ideal thing to do, despite sitting in a jacuzzi or swimming being very appealing....not all is lost though! I've been wanting to go to the Astor Grill there for dinner for ages (even booked it for DW's birthday)....so that'll be a fabulous plan B!
Compared to normal birthdays, whatever normal means, today was very relaxed (last year we were at Ronnie Scott's til 1am). My parents popped in, I went for a natter with my lovely new neighbour, we had a walk along the river (first of the week - whoop, whoop!), my brother came by and all of the lovely things below arrived. I'm so very lucky to have received so much love from you all, including on social media.
Birthday balloons from a secret source...thank you, you special person. : )
Birthday card love
The birthday girl herself under the vines....
All week I had been indecisive as to how to celebrate my birthday but at the last minute, this is not my usual preference, I got a group of special people together and we went for a curry....I'm so pleased I did as it meant a lot to celebrate with everyone. : )
Wickchen & Wonechen
All my party people (Missy Elliot song 4 my people is going round my head right now!)...
The ever wonderful Kim D... : )
A whopper of a thank you to everyone who came along, there was lots of laughter, vocabulary extension and good food...It was nice to feel normal again and for many minutes forget the 'rascal' that is causing so much chaos.
Today my energy levels definitely felt topped up so hopefully this means my neuts are moving on up! I am so thankful for all the love and kindness, feeling the best I have done all week, for a super birthday supper with friends and sunshine on what was predicted to be a rainy day. I'm looking forward to a weekend of quality time with DW and probably more rest. ; )
Saturday 10th June
Sun is shining, the weather is sweet...makes you wanna turn your hose pipe on....
Or does it ha ha!!!
Due to a lazy morning I had a super speedy breakfast, shower and watering session as the lovely Kate popped round or some fizz, of the h2o, variety in the garden. We were only sat in the sun for 45 minutes and I had a hat on...my hair is definitely thinning and this is mainly on top so sun hat at the ready but shortly after Kate left I felt really sick and ended up with my head in the toilet...not so much fun. I'm not sure if it's heat or a bug but whatever it was made me rest up and wiped me out for the day...DW in the meantime went for a power walk. It's so amazing seeing him being in a different place mentally living here...I know it's still not his dream but it's much better than where we were before.
So a lazy afternoon for me including a 2 hour nap but I had to be ready as we were going to see....
Congrats Eoin, it's a great house and looking forward to many, many more dinners at chez Harty! So here's a pic of the welcome dinner extraordinaire...
Sicilian roasted Dover Sole with Lemon, Achovies, Capers and Rosemary with Jersey Royals and Samphire
It certainly had hidden magical properties as my nausea disappeared so a really good supper! Eoin's one of my oldest friends...I've known him since we were 12 and started secondary school together, so it's amazing to have him living so close by and have evenings full of laughter and the odd bit of piss taking...generally out of me or him as DW stays inherently untouched!
Again, moments of feeling normal this evening...then horrible wake up calls which I deal with silently...this will get easier but Wonderland is hard to navigate at times.
Today was full of kisses and hugs from DW, hearing from friends I've not heard from in a long time (Barbara/ Sarah Young), inspiring culinary creations (thanks Barbara!), sunshine though perhaps I need to be sat more in the shade and feeling good late at night...this seems to be my best time.
Sunday 11th June
Thankfully the lovely family with small children next door were away last night, so no early morning wake up calls! In fact I decided to set my meds alarm for 10am to have a proper lie in for once....result!
I purposefully cancelled all plans today (sorry Sharon, Lesley, Christine & Emma), as I wanted to rest, relax and have a normal Sunday with DW today and that's exactly what we've done. We're still getting the house sorted so chores do kick in, though thanks to my parents cleaning, gardening and laundry are covered...but we were determined to go to Hambleden today for a walk...and walk we did...including a 15 minute stop on my favourite bench (yes I know the old lady comes out), today I managed a 90 minute walk through the fields in Hambleden without my stick...slam dunk! Though hayfever you need to stay away!
Beautiful fields of wheat....
Look no walking stick!
My boy brushing his hands through the fields of wheat...barley sounds better (ref Fields of Gold lyrics)
Coming home roof down in the Fiat 500, life felt pretty good...we were lucky to catch watching Nadal win his 10th French Open, which was hugely humbling.
And so we reach Sunday supper time...thanks to Emily, a new book has entered my repertoire, The Medicinal Chef Healthy Every Day (of the Feel Good Fish pie fame) so here's tonight's supper...
No-stress pesto cod with green beany mash (mine became more of a purée), Jersey Royals (I'm a bit obsessed with them at the moment - even though I know their sweet potato cousins are healthier) and a tomato salad...a very green dinner!
Today I'm feeling more confident about what tomorrow may bring....of course there are thoughts of will it, won't it happen...but what will be, will be...and if it will be then I'm channelling all positive thoughts into a pain free reaction...as in no reaction! My pain is still being managed by opiates and paracetamol but as you can see this cocktail means I can do things, especially the ones we enjoy. I'm lucky that DW will be my side and staying in the bed next to me and tomorrow's chemo buddy is the ever wonderful Kim, a lucky charm so let's see what happens. Ding, ding, round 3...take 2...bring it on!
DW thanks for everything you do. I know you're getting the lows as well as the highs...and there have been quite a few grumps in between as well. I appreciate every little thing you do, even though it may not always seem like it; but you laughing is my favourite thing in the entire world...so please keep doing this. Love you more than you will ever know.
To you all...I wish you all the love, laughter and happiness in the world for the week ahead. Signing out for now but will be back soon. All my love, Vxxx
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