Tuesday 9th May
Moving day! It had finally come around...and Shaun put his hands in the air like he just didn't care! I was a bit apprehensive...was this a good idea with treatment just around the corner. Moving out of the familiar and into somewhere new and completely different in terms of moving out of a warm new build into a 16th century cottage...but what we did know was the new place would be good for the soul.
In order to get our sofa in we had to dismantle the bannister so to get it out the same had to occur thanks to DIY D's skills!
Given the circumstances, we decided to pay for a removal company to pack everything up for us, so moving day ended up being fairly relaxed...as I pretty much sat on the sofa for most of the day with 3 pros packing up at the speed of light. If you're ever moving then I'd really recommend WH Cox & Sons...and no, I didn't get paid to say that!!!
Today was also a proud day, as I was featured in the John Lewis Partnership's Annual report with a focus on my secondment at Breast Cancer Haven. I'm so very privileged to have been given the opportunity to have done this secondment - thank you JLP!
There was a lot of waiting whilst the packing happened....DW had gone over to the new house to start sorting stuff out there...then I received a phone call from my healthcare provider saying that I was no longer covered to be treated at The Marsden...my stomach dropped roller coaster style and I felt all of the safety barriers had been removed and the ground beneath me had sun away...there's no need to go into the ins and outs of the following events on this but needless to say another thank you to JLP for looking after me...and a special thank you to everyone at Waitrose and John Lewis Group who pushed this through...especially though to Karen and Yseult...what you guys did meant the absolute world.
Anyway, back to the move...finally at 4pm I got in the removal van with the guys and with a sad goodbye to Rachel and Maddie I left Oldfield Road....I will deeply miss having the Regans one minute away but I know pizza night will remain a firm fixture and will see my favourite Regan girls regularly.
Arriving into the house I was faced with a wall of boxes...little boxes on hillside, little boxes made of ticky tacky....except it was more like piles of boxes in the new house, piles of boxes literally everywhere...where to start!
Thankfully the task force arrived in the form of my parents, my brother and his wife! So we were soon blitzing our way through them...but so many boxes!
After a few hours we stopped for dinner...and only one thing would do...pizza!
Pizza time!
Big thank you to you all helping DW and I face into this mountain! Downsizing is definitely not easy! The next day involved more unpacking and sorting...and trying to do this without aggravating my dodgy back...Plus we met our lovely new neighbours who have welcomed us so much into our new home. We truly feel like Cookhamers already!
Thursday 11th May
Chemo day #2.
Today's chemo buddy was the ever delightful Nic who kept me company and allowed DW some sanity to leave the hospital.
The chemo plan for today was Carboplatin and a new drug called Denosumab...all should be fine...well that's the mindset that I went with.
Arriving home from chemo, we were welcomed by the Welinder Snrs who had flown over to be with us and see our new pad!
Perfect peonies from the lovely Anna Bones...thank you so much lovely.x
I felt fine that evening but just before going to bed, I could feel my back feeling more inflamed...still it would calm down over night, right?!
Friday 12th May
Wrong!!! I woke up and could barely move without pain...rather I mean PAIN. After what felt like a lifetime I managed to move and get out of bed...pain meds at the ready...this will get better. Standing in the sunshine in our little oasis I was chatting to Rachel and all of a sudden there was a gigantic spasm...I screamed and literally couldn't move...more PAIN....
Ok...sit down and relax....this will get better. Somehow I managed to shower and get dressed but knew something wasn't right. The only task on the list was to go to Windsor to have a white cell booster injection. Regina, the angel that she is had kindly agreed to give me the injection...so I just needed to get there.
Nurse Lars reported for duty but despite some careful driving (MW - I know you would debate this!!!), there were some really painful moments getting over to the hospital. Finally we got there and I started to walk to the lift and there felt the most intense pain of my entire life...my back went into one gigantic spasm...I couldn't get into a wheelchair as I felt paralysed. A trolley appeared and somehow I got onto that and got wheeled up to the oncology unit....scared doesn't come close to how I was feeling.
Regina swooped in and put me in a side room and luckily got hold of Dr Davis (my original oncologist)...who advised not to have the injection as it would more than likely add to the flare....the plan..get to The Marsden...but how...the slightest movement was an issue.
More pain relief and diazepam seemed to be the answer, so whilst nurse Lars and I were waiting I took more Oxycodone (an opoid) and waited for DW to bring the diazepam which would hopefully relax the muscles...
After DW and his Mum arrived, I took the meds and then waited to see if I could move...somehow including using some breathing techniques I got into the car and we were on our way to the Marsden...I can't remember much more about this night apart from that Luca and Moira brought some food and looked after me whilst DW went to get food with his parents....Thankfully my soul mate returned and slept next to me.
The only cause of this flare...must have have been the denosumab, as it was the only change but man it hit me hard.
Saturday 13th May
I spent most of the day in a opioid daze....going to the toilet took all the strength I could muster and I needed a nurse to support me to get there...how the hell did I get here?
Visitors today included my parents and also the Welinder snrs and one VIP...Kim.
At the end of last year, Kim, Leonie and I decided to take on a challenge and do the Moonwalk, a walking overnight marathon through London. Leonie and I had done something similar in 2013 and we both felt like we wanted to do it again...frustratingly this year was not the one for me. A group of fantastic people from Waitrose also decided to join in to show their support and do a half moon...still 15 miles! So whilst I stayed in bed...these intrepid explorers pounded the streets of London town...
A pre walk visit from Kim
Kim, Leonie and Phil....the full moonwalkers!
Juliette, Lucy, Helen, Sam, Jo, Caroline and Su...the half moonwalkers...
The full mooners find a friend on the streets of London...
Sunday 14th May
Morning Sian....the full mooners find Sian who was volunteering somewhere along the Kings Road...
A hello to me from outside of the Marsden..
Mile 26....I can remember the last 0.2 miles being the hardest...
Morning from me...
I rarely eat toast but there's something strangely good about hospital toast when you're not feeling great..blackcurrant jam of course.
Love from Leonie. : )
The next few days consisted of being fairly spaced out linked up to a morphine based pain relief system, complete with a button to press if I needed more...which varied day by day. On Monday evening this was removed and I was moved onto oral medication, the same drug Oxycodone but something that I could take at home. The only challenge with this in hospital is that for top ups you have to press the button to call the nurse, they then have to get the meds and then two nurses have to come and observe it being taken...so it can take a little while. It was decided during this transition that the earliest go home date would be Wednesday to ensure that the pain could be managed. I was relieved...I just knew that it would be too hard going home as I was reliant on the nurses for toilet trips, strip washes and showering...maybe I becoming a naturist in my 'old age' but for whatever reason I didn't mind the showing all! ; )
On Wednesday, Dr Williams paid a visit with the amazing pain specialist nurse, Caroline. The pain was ok but still not fully managed and I had a confidence crisis about heading home...Friday became the new target go home day. This day I took a lot of breakthrough tablets....10 in total over 24 hours...it was no wonder by the evening I felt as sick as a parrot and completely zoned out...sorry Moira!
I had been going for small walks around the ward to get some exercise in and to build a bit more confidence. However, Thursday's challenge was stairs. Believe me, when you've not done them for what feels like an eternity they are scary...so with the lovely occupational therapist and physio I walked from my room to the stairs...shaking with nerves...I started to learn to walk a bit further and attempt what felt like a mountain...Going up was shaky but ok...but coming down I was scared to death about falling, pain kicking in and many other things...I did it...but boy was I glad when my feet were back on terra firma.
Phew...progress was being made.
Friday 19th May
So after a hazy week, where writing a text took me forever....I have some very weird emojis in my favourites section on my phone, the day had come to decide if I was ready to go home. Dr Williams, Caroline and Dr Parton visited...the consensus...perhaps not today but at some point over the weekend. Again I felt relieved, partly as I wasn't sure what going home meant as it was heading back to the new house. DW was disappointed but I just knew that I had to feel confident from within to go home.
However, a change did occur, the hospital needed my room back so I had to move to another ward. I think this semi move did me good to see how it felt to move from my room to another location. Though somehow I had accumulated many bags so it took a while to send all of my stuff across! The new room was smaller but somehow better as the ward was less busy...so I was happy in my new home. Plus a familiar face was looking after me that evening...Caesar. Caesar had looked after me after my first operation nearly 3 years ago, so it was great to see him again. When asking him where he lived, 3 years ago he answered St. Reathem....in other words Streatham! It's been a standing joke with DW and I over the past few years so it was fun remind Caesar of this! (Sarah MacG - you can borrow this one!!!).
Saturday 20th May
Finally time to go home. I was still feeling unsure but sometimes you just have to bite the bullet and go for it...though due to various waits for discharges and pain meds we didn't get on the road until late afternoon.
From the bottom of my heart I want to say a huge thank you to everyone who visited me in hospital over this week...especially the food deliveries that saved me from hospital food. Sorry to have missed a visit from Mike and Jen whilst they were over from Seattle but a huge thank you for the flower delivery.
Most of all the biggest thank you goes to DW for sleeping by my side most nights...you kept me feeling sane and safe even though I know like me you were scared. I love you super duper amounts.
: )
And then we arrived home...well back to a place where I had spent a couple of nights amongst boxes before my hospital stay occurred. But thanks to the Welinder Snrs unpacking further, I actually walked into a place that really did feel like home.
I also saw the previous evening's delivery of equipment to help me around the bathroom...one toilet surround and one perch stool...and yes I do feel like a ninety year old! Shower chair to arrive.
It took a while to get used to walking around the new house and finding my step, including regressing to being a child again and having my mum help me in the shower but slowly, slowly day by day I've made progress...my movement has improved, the pain has been controlled and I'm showering solo...sure there are painful moments but overall things are moving in the right direction. But it's good to be home, somewhere that feels good for the soul and that's what's important now.
Plus it's been wonderful to welcome people into our new home...so a big thank you to everyone who has visited, it's been a great boost to see you all.
A massive thank you to my parents as well for cleaning, gardening and generally looking after us. You've been absolute superstars!
Here are a few pics from Cookham life from the past few weeks...
Beautiful tulips...from the Lawes'
Feel good fish pie made by the incredible chef Emily Wright...it certainly did make us feel good!
The shower chair...super handy when needed to shave one's legs!
Just one Cornetto....
A special arrival from the Biscuiteers for a very special lady. : )
A room with a view...
Beautiful Cookham garden...an oasis of paradise
After a week of being at home I had cabin/ Cookham fever so we ventured out for some dinner at the Dog & Badger...a very happy DW with his burger. : )
Despite my tastebuds holding strong, I've not drunk any coffee for weeks. This morning DW was making coffee Swedish style...it smelt so good I decided to have a cup...and boy did it taste good!
Welcoming Mr Potato Head and Slinky to their new home
A visit from the Pattinson-Jones'...the boys with the beautiful Amelie.
Finally, a week after arriving home....I made it to the river from our house. Only 10 minutes away but it had seemed a world away earlier in the week.
Oh yes...and I have a stick...the old lady equipment list keeps on giving....it's partly for security as well as support...but I may have to buy this boat - 'Vicky Baby'...
A sweet treat from Cutsie Cupcakes....dessert for a special evening with the Hamiltons.
Time to feed the ducks with some stale bread...oh wait we only have ciabatta... : ) The Thames side ducks were definitely not liking this style of bread!
A Sunday night supper with Kim and DW...BBQ'd monkfish with DW's favourite sauce...cherry tomatoes, capers and parsley (lots of garlic), samphire, BBQ'd asparagus and Jersey royals...Tonight was the first night that I've missed having a glass of wine...but I stayed true and remained on some sparkling water...#cleanliver
We're still clearing out the old house and I found these, which should have been framed years ago...
A bank holiday Monday stroll...my longest walk of the week...probably around 1.5 miles...slowly, slowly getting the mileage up.
Bank Holiday Monday supper...grilled mackerel, wild rice and herb salad with kohlrabi and chive salad...Omega 3 levels high!
Sunshine sunflowers from Jackie & Andrew....thank you so much.
Tuesday 30th May
I finally brought myself today to start writing again in my notebook...so a more detailed account will now occur! For some reason I've not been able to bring myself to write properly until now...some of that we can put down to being spaced out on meds/ being in pain and some it is potentially good old fashioned writer's block.
A teary day but we're all allowed a wobble right? I don't know why I felt like this. Perhaps DW going away to Luxembourg bubbled everything to the surface...but it was only one night. Or perhaps it's my ovaries shutting down again through chemo that is causing hormonal changes...or a sudden realisation of what's been going on the past few weeks. Who knows but I felt very teary and extremely overwhelmed with the world. My parents were luckily around to support but I hate them seeing me cry...guess being brave is also showing your vulnerability at times.
However, on a more positive note my Dad and I had a good trip up to Breast Cancer Haven for my acupuncture session. I miss my independence but am so lucky to have amazing people who enable me to do the things I like to do. It was wonderful to finally show him this special place that he's supported through various fundraising events and a place that has supported me through good and bad times. I find having acupuncture strange compared to other therapies...as once the needles are in you're left to your own devices...maybe too much headspace...but perhaps I'll book in a reflexology.
What I will say for acupuncture is that for me it seems to really work as I didn't get my usual 6.30-8pm backache...in fact with my parents I managed my longest walk to date. Keep tracking the positives VW. : )
The other positive of the day was seeing all of my friends at Breast Cancer Haven and getting the warmest hugs from everyone.
So today's gratitude is for my Dad driving me to Fulham and back, doing the longest walk to date, feeling the sunshine on my face, for my Mum cleaning the house and helping in every possible way she can and for Little Miss Sunshine being my bedside companion whilst DW was away. Plus for my parents babysitting me overnight so I wouldn't be on my own...thank you super duper amounts, as I know the Lux trip gave DW some escapism time.
Wednesday 31st May
Bugg@ar!!! Somehow I slept through my 8am meds alarm...so the next thing I knew it was my 9am alarm (sorry early bird peeps) going off...so I needed to take my meds...wait 20 mins or so before I could really get going and I had a 10am appointment, thankfully at the house! Darnnit!
My appointment was with Karen, a Macmillan nurse from the Thames Hospice...how the bloody hell did I get into a position to be having this conversation?! I was still feeling pretty emotional from the day before, so when she started asking me questions that felt more invasive such as about faith and then about DW...Niagara falls started. Anyway the positive is another support person...so we'll leave it there.
Next stop physio...I'm not sure of the benefit at the moment but I'll take the lower back massage for now...but it did mean that I could go and say hello to Regina to show her I could walk once more! It was so lovely receiving a Regina and Jane (by Windsor breast care nurse hug).
Thanks to the brilliant parental pair, next stop was home for lunch extraordinaire delivered by the amazing Yseult Caroff-Richeux! Ottolenghi style lunch...the best food I've had in weeks...the lunch menu has been set high!
Après lunch was chatting in the sunshine....so a truly wonderful way to spend the afternoon! Thanks YCR for an amazing feast!
Next stop....Waitrose to buy food for my dinner date with the ever wonderful Leonie Cormack-Cook, or as she'll always be in my heart, Wonechen. It's always great to catch up with someone who you've grown up with and talk about everything...including today's topic of what could I have done to prevent this menace returning...the conclusion was relatively little...well Wonechen in fact ruled out everything...but sometimes I just can't help wondering...but then I just have to stop...as nurse Lars always says...you are where you are and just go from there...so listen here you pesky mets, it's time for you to go as you're not welcome within my body, or anyone else's for that matter!
Around 10ish I heard the key in the door...DW was back....it was so lovely to see his handsome face return and to some degree a feeling of relief that my soul mate had returned home.
Today's gratitude is for my parents looking after me, for a super star lunch with Yseult, for sunshine on my back, for dinner chat with Wonechen and most of all a goodnight kiss from DW.
Thursday 1st June
Tired.com this morning...perhaps yesterday was a bit too jam-packed...but this girl can...but this girl also needs to pace herself better...
I rushed to meet Rachel and Amelie for a walk around the Odney Club in Cookham...on the way to meeting them I realised it was my first unaccompanied walk...you can do this and do this I did! In fact this morning I felt the best I had all cycle.
So good in fact our sunshine stroll broke my walking record and got me to nearly 2 miles...still low compared to my regular 6 miler walks but I'm getting there...the nattering and laughter definitely helped!
Girlies walks in the sunshine...
After lunch however I crashed...a nap turned into 3 hours of snoozing and then just as I was about to eat dinner I had to be sick...what is this?! Ah perhaps called exhaustion...or realistically just an act of random sickness...still frustrating given the morning's vitality!!! And lesson number whatever number to myself...more rest m'lady.
DW wanted to play tennis and I was determined to pop to see another Rachel for tea....and I'm so glad I did. It was so relaxing to sit in her garden and have a chat in between getting some black labrador love from Tess...
Today's gratitude is for DW from every kiss to mundane acts such as unloading the dishwasher, you're the best husband and friend I could have ever wished for. On today's list is also the sunshine stroll and being able to walk that far, to both Rachel's for your love and support and for feeling like myself this morning...it's the small things for sure that we need to all treasure.
Friday 2nd June
A very happy birthday to the decade twins Sammy and Xanthe! : )
After a more relaxing Thursday my energy levels seemed much better this morning. DW and I headed over to our old house to sort out more stuff...it is feeling like an endless job, even with my parents doing a lot of the work...we will get there but then we found out that our buyer had blimin' pulled out...grrr!!! Still it buys more time to sort stuff out...no need to dwell or go into details but grrrr! I could feel my back niggling away so I knew a time out was due....and thanks to the wonderful Debbie Grierson, lunch was prepared and served...
Maxi dress chef creating and serving a tomato & pesto tart followed by a coffee & walnut cupcake....
I should mention at this stage that I think there might be some lunch making competitiveness with my Wednesday chef...as diplomacy is my middle name I'm just feeling very privileged to have had two amazing lunch dates this week...I'll leave you to fight it out amongst yourselves/ vote! : ) Thanks so much D for a wonderful Friday lunch date and a cuppa in the sunshine. xxx
Pretty peonies...from the beautiful maxi dress wearing lady. : )
As a tag team, Debbie departed and then Eoin entered...and also enjoyed a coffee & walnut cupcake. Congratulations were to be given as Eoin's just completed on his new house - can't wait to see it! So a lovely tea time date in the sunshine and a good catch up on the world and its wife. After Eoin left I knew it was rest time...yep, you heard right I realised it was rest time and time to STOP! So some French Open tennis was required and I tried to look out for Kim as she had voyaged over to Paris for a day of tennis! Thankfully, due to the fabulous Emily Wright we had more Feel Good fish pies in the freezer so dinner was an easy task as I really didn't have the energy to cook...so thanks lovely for the supply of these as they are super yummy and come in handy on low energy days...
It perked me up to give me energy to head over to Hamilton HQ and have a much needed catch up with Rob and Ces...DW and I love these evenings with you guys...a great end to the week with a lot of laughter. : )
As DW has taken the role of chauffeur on as well as many other things he definitely deserved his late night glass of red under the vines...
Today I'm grateful for seeing amazing friends...Debbie, Eoin, Rob and Ces but also for friends who text on daily basis, Kim and Ces, for watching the birds dance around the garden, hearing DW laughing at The Simpsons and something most of us take for granted but being able to walk. CH you're completely inspiring me with your determination...you're one incredible lady. xxx
Saturday 3rd June
On a gorgeous day like today, there is only one thing to do and that is to walk by the Thames. One of the main benefits of the new house is being able to get to the river in a relatively short time, well it's getting quicker each day....DW even praised my speed increasing and I'm telling you that type of praise is hard to come by!!!
A little bit of paradise...
At the end of the walk I could feel a niggly sensation...time to stop...and get in the car as today was nails and haircut day! If you're ever in the SW15 area and in need of your nails being tended to, then London Grace is the place to go...enough of the selling front!
However, the superstar of today is Charleen my wonderful friend and hairdresser....she's supported me through the pain of regrowing my hair and now is supporting me in this next stage whatever this stage is...my hair has definitely thinned and annoying it's on top...so trusting Charleen implicitly we went for a short bob...it's not what I wanted but she did a great job given the circumstances! Thanks so much for being my hairdresser but also my friend...I love coming to see you for our catch ups.xxx
When in Putney there is only one place to dine and that is at Casa Achilli with Luca, Moira, Giulia and Greta...
Boys in blue eat charcuterie....
I love Luca's passion for food...he's inspired me many times over the years I've known him and tonight's dinner was fantastico (as he's favourite Italian chef would say....ok L, I know how much you hate Gino D'Campo!)...
Sundried tomato & olive cod en papillote avec asparagus and roasted sweet potato
Tonight was filled with love and laughter...two very special girls in my life are Giulia and Greta, it's wonderful seeing them change each time we meet and I can't help but to laugh when Greta hits my ass if I'm bent over (then struggle to keep a straight face when Moira is telling her not to as I've got a bad back)...hugs and kisses with them make me forget the enormity of the crap...not to mention their very special parents who are supporting us every step of the way. Grazie mille to the Putney pack for a wonderful evening. : ))
A very good day and boy what a difference 2 weeks makes. Today I'm grateful for riverside walks with DW, feeling almost normal (aside from my walking stick, which I said was for a bad back, I didn't tell the nail lady about my life so in a way it was a form of escapism), DW just being DW and making me laugh, Charleen for going above and beyond, the Putney pack for their unconditional love and support....as I'm writing tears are streaming as I feel so very blessed with everyone in our lives...goodbye mets...some people need me to stick around for a long time.
Sunday 4th June
Another family visit to the old house...my Dad to mow the lawn that has become a meadow and my Mum to hoover the dust field that had been sitting behind furniture....DW and I were sorting more things to throw out/ head to a local charity store...Luke and Natalie popping in to tell us about their Portuguese adventure (Lisbon I am coming back...just keep a seat for me). Real life tasks, which horrify DW...take him around Waitrose on a busy Sunday afternoon and you'll see a rabbit in the headlights! But another walk around the beautiful Odney club...walking stick there as a just in case measure...a visit from the Hamiltons to welcome them to our new home (C, know this was big effort so thank you) and finally no Sunday would be complete without a Sunday night supper...
Tonight's is Malabar prawn curry from Dhruv Baker's book Spice...he's a genius with spicing and between DW and I we made a pretty good team to create this...
And who needs alcohol when you can have Ginger & Lemongrass cordial with some San Pellegrino?!
As you can see it's been a pretty full on month, hence my blog's radio silence. The month of May has been manic for many reasons but I'm so grateful to be in June and to see what it will bring. I have good and bad...well let's call them challenging days. I'm currently in debate as to whether to change my diet further...you read of radical remissions and I hope (being my word, yes I own it) to have one...will a diet change aid this further...no one knows...so we'll see. Certainly it seems refined sugar is one to cut out....hmmm.
Today I'm grateful for life, love and laughter...for everyone who has made me smile, sent a supportive text, provided food, lifts, gardening, washing...essentially everything...and above all else my soul mate DW...I couldn't do this without you. I love you beyond words right to my very core.
Tomorrow is Carboplatin round 3...I'm nervous, resigned and up for it in equal measures. Nike tell us to 'Just do it'...so I will, as the other choice available is not an option! As a precautionary measure I'm staying overnight in hospital tomorrow in case of a flare but we're hoping that this round will be less eventful in time to celebrate my birthday on Friday! Fingers crossed for no surprises or add ins from Dr Parton tomorrow morning and perhaps we will understand the next part of the plan in terms of scans/ any amends to future treatments.
But for now, I wish you all the love, laughter and happiness in the world...and I'll try to be back in touch a bit quicker this time round!
All my love,
Vx
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