Monday 12th June
Round 3...take 2...there was still uncertainty if today's treatment would go ahead. Last week's attempt had shown my neutrophils at 0.3 and I needed at least 1.5 for treatment. Even the nurses were reserved as to whether treatment would go ahead or not...so the blood was taken and it was just a waiting game...
Unexpectedly I had a quick follow up with Dr Parton and during this meeting my blood count came in...neutrophils up to 1.74...safe for treatment to go ahead! I felt a mixed reaction, a feeling of relief that treatment could go ahead but also some anxiety about what it may bring. Instead of having denosumab (the drug we think caused the massive flare), I was going to be given Zometa instead on top of the Carboplatin. This drug does a similar job to denosumab. I was in a safe place and it had been agreed for me to stay over so that if there was a reaction I would be in the right place but really to be frank everything started to hit home hard and clearly in an ideal world none of this would be happening...but despite being called brave, there's just no choice but to pretty much lie back (or in this case sit back) and think of England.
A good piece of news today was that my tumour markers had reduced so this is a great sign of the treatment working.
As I was staying over, chemo could be administered in my own room. So off to the Markus Ward we trundled...DW with his overnight bag as well. Today's chemo buddy was the ever wonderful Kim who I love to the moon and back (sorry for being spaced out at times!). Once in the room time seemed to fly by. My nurse today, Alice, was an absolute angel and delight to have around.
DW picked up dinner so noodles were had all round! There is one thing I do have to remember though for hospital stays is to take some pillows...those beds really aren't comfy and neither are the pillows!!!
My bedtime cocktail...
We forgot to take a chemo pic in the room, so I got a hello picture when Kim got home! : )
Overall, I was thankful treatment had gone ahead as it means 3 down...the weird bit is that I'm not sure what will happen for the next round. I will be scanned just before round 4 and based on these results I will either continue with the current plan or move onto a different plan...as nurse Lars says to me 'It is, what it is'...but I'm not a fan of this uncertainty. Still being a fan or not I just have to go with it.
I am so grateful for DW quietly doing everything in the background...my love for him is as deep as the ocean and more. Why we are here I do not know..
Other superstars of today are Kim for being the most amazing chemo buddy, super nurse Alice, my parents for taking daily life pressure off and currently being pain free (with meds for now).
Tuesday 13th June
Not the best sleep for DW or I....his was probably worse as he slept in what looked like the world's most uncomfortable recliner...love is putting up with all of this turd pile and sleeping on that chair. Love you darling.xxx
So I was awake from 6am....potentially also in part to the steroids that are given for the first few days of chemo. During hospital stays we really need shares in Pret for the amount we buy from there but today's new find was a coconut bircher yoghurt...so delicious!
Thankfully I was allowed out for a walk so I made the most of my escape and took a walk in the glorious sunshine. Near to the Marsden are the beautiful gardens next to St Luke's church...despite being red faced from chemo it felt amazing to be out and about.
Lunchtime walkies....
Returning via Pret for their second meal provision of the day I also had an array of meds to be taken...
After an afternoon snooze, I had a visit from 2 special people who I worked with during my John Lewis days.
Introducing Lisa and Meera eating posh doughnuts!
It was so lovely to catch up with them both as I hadn't seen them in ages...good to catch up on my old team and stuff going on in their worlds. I was good and stuck to a non-refined sugar world so the rest of the doughnuts went to the nurses who seemed pretty happy with this result!
Around 6pm, I had the white cell booster injection...fingers crossed no flares please!
Despite turning down doughnuts, DW and I resorted to a local pizzeria for dinner...so not 100% healthy! In fact I ate way too much pizza as for about an hour I walked around the ward trying to burn the pizza off! As DW had had such a bad night's sleep, he drove home. I prefer him staying as I want to be close to him, but we both need to function so a good night's sleep was what he needed and deserved.
I am so grateful for DW being constantly amazing despite juggling and being tired himself, for natters with Lisa and Meera, for chats with Amy who is one of the nurses, being able to walk around in the sunshine, for everyone who checked in on me and for still being pain free (with the assistance of meds).
Wednesday 14th June
Thankfully it was an uneventful night so time to head home! As I was packing my stuff up, I suddenly felt exhausted...maybe relief of no reaction or simply my body processing the cocktail that was in it.
It's rare that DW stops to take a photo but today was one of those days as he loved the silver birch lined Chelsea street....
Arriving home I literally became glued to the sofa and slept on and off all afternoon, evening and night....zzzzzzzz
Thursday 15th June
Today would have been my grandmother's 96th birthday...I hope people will still think of me on 9th June (reminders in calendars!)... ; ) Still no need to be so morbid as many more birthdays to come VW!
Today I still felt exhausted...some of it I put down to being in a steroid coma...I don't think dexamethasone and I really get on...so I took my morning dose but decided to call it quits before the last dose at lunchtime. Today was spent snoozing and napping...I just couldn't wake up...still more energy tomorrow surely?!
Friday 16th June
Beautiful flowers from the Trues in Seattle. : )
Dinner with the Ouarti-Weavers....boys in blue!
Saturday 17th June
I'm feeling mentally weaker today...in some ways I feel like a clown. Trying to be smiling and cheery on the outside but inside feeling quite sad. It's ok to feel this way and I know wobble days are allowed..however life feels so much better on the positivity train...I need to build up my reserves again and hop on that train. I'm writing this entry on 1st July and it's hard to remember that only two weeks ago the temperature was around 30 degrees. Equally I had written this entry whilst in hospital earlier this week but somehow it didn't save so I'm rewriting...no point in getting frustrated, best just to crack on and write.
Chemo and the heat definitely do not mix...the heat was not great for anyone but add chemo into the mix and it's tough, potentially contributing to me feeling low mentally. So I was focussed on the following weekend with temperatures falling to a balmy 20 degrees!!!
Still this evening was an official soirée evening with the Hamiltons and Lawes' and tonight's theme was Greek! Everyone was sluggish due to the crippling heat so it was a more sedate soirée than usual...but still fun. Thanks to the Hamiltons for hosting the Lawes' for bring the food.
Despite feeling low mentally, everyday I ensure I note things I am grateful for...today's are tonight's soirée, the kindness shown by others, watching the goldfinches eat in our garden, focussing on getting better and hearing DW laugh to the new Despicable Me trailer. : )
Sunday 18th June
One day of the heatwave down...let's get through today. Mentally things are tough...I know I'm bottling things up to protect those around me. Really I need a good cry but somehow I can't find the outlet to do this. On top of this my back has been hurting more. This is likely due to the new drug I had this week and the white cell boost. I think moving house has also caused some chaos...not quite knowing or feeling where home is...for now the cottage is an amazing holiday house for the summer so will go with that.
Happy Father's Day to my loving and supportive Dad...a shady happy Father's day drink was held in my parents beautiful garden. My Dad is an amazing gardener, somehow I don't think I've inherited his green fingers...thank goodness he's become our gardener! : )
It was bliss to go into Waitrose today and feel cool for a few minutes, even DW was less grumpy about food shopping today as the air con gave some brief respite from the heat.
The soirée was extended to this afternoon as we headed over to Lawes HQ to relax in the shade and use the pool...I decided against going into the pool as it was in the sun and another chemo side effect is that your skin is more sensitive...so I found a shady spot and smiled whilst the boys and kids played in the pool. It was beautiful watching the two brothers, Harrison and Cuthbert, laugh and play together with Harrison protecting his younger brother at all times. And after many years of DW suffering from the heat I know can sympathise with the feeling of overheating and not being able to escape...sorry DW...you're right...as always. : )
We left Lawes HQ fairly late, as our kitchen is a bit of a sun trap so we knew we'd be heading back to a sauna...the original Sunday night supper plan had been Ottolenghi's paella but neither of us fancied spending an hour making this, so we resorted to plan B...
Tuna niçoise from Around the World in Salads...honestly one of the best salads
My beautiful boy at Sunday night supper : )
Today's gratitude is to spending the day with my family, great friends, surviving another day in the heat and to great new neighbours.
Monday 19th June
Feeling too hot, hot, hot! To get some rest from the heat we retreated to Hamilton HQ where DW and Rob worked and Ces and I took things easy and kept out of the heat. Despite the heat, I'm feeling more positive, due to the lack of moving my back is hurting more so it would be nice if the pain would reduce...one day at a time.
Today, I'm grateful for a good night kiss with DW, our afternoon with the Hamiltons including getting a sticker for bravery from Harrison, talking to nurse Lars and it only being 2 more days until the rain comes!
I've been feeling increasingly isolated...the lack of independence and things to do has really made me feel quite lonely. This evening I was about to text Kim, when I thought, no it's time to pick up the phone and have a conversation. I spent my teenage years, as my parents will know all too well from the phone bill, on the phone to friends after school, so it was time to get talking. I think we're losing the ability to have phone conversations with friends...we text a lot and arrange to meet up but in between there's no real dialogue. So I've come to realise that calling people is one way to feel less isolated and gain some energy...thanks lovely Kim for our chat this evening. : )
Tuesday 20th June
Feeling hotter, hotter, hotter...today's heat escaping game plan was spending the day in my parents garden in the shade. Not going for walks is really causing my back to ache more...come on rain! The only item on today's agenda was physio...aside from receiving a nice but fairly short massage I'm not really sure of the benefit of going, as they are being cautious with movements that I can do. Perhaps one to put on hold for a while.
Nurse Lars was over to look out for me whilst DW went to Luxembourg so he came over for supper at my parents. The plan was to cook with my mum but she got attacked by a bad case of heat stroke so dinner was down to me and....my Dad!!! I think it was the first time he'd ever boiled some pasta. Given the heat and not knowing where my Mum kept stuff in the kitchen, I have to say an rather uninspiring pasta salad was made...
Pasta salad a la dull....saved by adding some BBQ'd chicken from the previous night....
One more day of heatwave to endure...then I'll be back to full operating mode! Thankfully my Mum was better the next day as well, so everyone was affected and it was all everyone was talking about. Arriving home this evening, nurse Lars and I went for a walk along the river and saw the most beautiful sunset on the river whilst swans and ducks were gliding serenely. It was a good opportunity to talk and let out some emotions that had been building up...a counselling appointment is much overdue. Before bed DW called from Luxembourg...I miss him whilst he's away but it's good for him to escape this for a night. I wish I had somewhere to escape too as well....but I don't so need to maintain a smile on my face and carry on. Tonight's chat with DW was one of my gratitude items...it means the world to see his face everyday even when he's in a different country.
Thankfully our house has been fairly cool at night...so fan on, time to sleep!
Wednesday 21st June
It was forecasted to be the hottest day on record since 1976...so what to do...well it might seem crazy but nurse Lars and I headed into London as I had an acupuncture appointment at the Haven. The benefit was being in the car with air con and also in the Haven with air con...we then sought out a lunch place with air con...so far so cool. Due to lack of exercise one of my nurses had recommended going to a shopping centre to keep cool but walk around...nurse Lars is dedicated and had agreed a trip to Westfield but given timing we decided to venture back to the sticks and go to the Institute of Marketing where nurse Lars is a member to relax in their air conditioned lounge area....we walked in and it felt like a sauna...mmn this plan was floored! Instead we went to Waitrose to pick up dinner...nurse Lars looked as happy as eating a fish pie to feel the air con on walking in! Again we retreated to the sanctuary of my parents garden.
Luckily my mum was feeling better so cooked dinner as I was really feeling exhausted from the heat...so a snooze was required!
After dinner I was given the greatest honour...
The first strawberry from my Dad's strawberry plant...they're meant to be the best and it tasted sweet and good...
The first strawberry being picked.
Even at 21.30, it was still 27 degrees...so a trip in the car to pick up DW seemed like a good way to keep cool...DW walked to the car in his jet set style and my heart leapt...to me he's the most handsome person on the planet...I love you so DW. Arriving home, sleep was going to be a long way off given this heat...but tomorrow there would be rain! Whoop, whoop!
Thanks nurse Lars for keeping me sane these past few days. : )
Thursday 22nd June
A day at home with DW in the cool...hurrah! I finally felt as if I could function once more, so blitzed lots of admin including chasing up my disabled badge. I'm still struggling emotionally but thanks to nurse Lars I had a counselling session booked so was looking forward to using this session to talk through the different elements this situation is hitting me with...such as DW's life after me...I know I need to focus on today and I'm wishing everyday for radical remission but still these thoughts are there. I find it hard to talk about the future and think of even lovely things such as potential holidays as I feel that I am stuck in a cruel limbo. Potentially this is exacerbated at the moment as until I receive my scan results from a CT planned for next week, I'm not sure what the next chemo cycle looks like. I'm trying all of the time to employ or rather deploy, it does feel like a war, positive mental attitude but it's hard. So for today I'm proud of the walk that I did with DW today, I'm thankful for the fun I had with the Hamilton's whilst DW was at tennis, I'm grateful for my parents taking care of our house and garden, kisses with DW, planning more activities to feel more social and gain the nourishment I need from others and I need to work out ways to feel more independent (auto spell just added in indecent...I wish!).
Friday 23rd June
Today has been the best day in ages in terms of feeling well, my back hurting less and generally having the most fun in ages. I gained so much energy from everyone I saw today...starting with the beautiful Davinder who is an amazing sounding board. Then Barbara who brought an incredible lunch feast...
A Friday feast - grilled aubergines, ceviche, potato salad and Barbara's signature salad..it was amazing! Thank you so much!
I find it incredible the connects you have with people...Barbara and I have not seen each other since I left John Lewis go to work for Waitrose but it felt like I had only seen her yesterday...some people are simply beautiful and this lady is one of them...thank you so much for coming to see me. : )
A walk day keeps the back pain at bay...DW makes a new friend...
This evening DW was meant to have a boys night and I had planned a girlie evening with Kim...however boys night ended up crashing girls night as Tom was poorly...so it ended up being a fab four evening. A few years ago, Kim bought me a board game for Christmas called Smörgåsboard, a foodie related game...it had yet to be played so tonight was the night for its debut!
The board..
One round was called nudel doodle...essentially Pictionary...despite Kim's best drawing efforts...it was challenging to interpret this drawing as a potato ricer....but we laughed a lot!
Thanks to Kim, Eoin and DW, this was one of the most fun evenings I hd had in ages...the key to happiness and keeping me sane to see people, laugh, love and keep busy....please body let me do this!
And thanks to DW for some of the best hugs ever today. : )
Saturday 24th June
Another good day...a lazy Saturday at home before heading up to see the Putney pack!
Barbara's lunch extraordinaire meant Saturday's lunch was sorted with a very happy DW.
Despite overall today being a good day, I can't seem to escape thinking about what's going to happen...I need to escape but I don't know how. Laughing with friends seems the best route. I'm so, so, sad that my future with my amazing DW has been put in danger...but VW you just have to hang in there for as long as possible and have fun. I think about the why a lot...and why this genetic mutation seems to have presented in me and my cousin and not our mothers...nothing makes sense and it seems if this bast@rd is down to a genetic mutation then driving myself bonkers with diet won't make a difference...Davinder made me feel better by thinking about the 80/20 ratio...
Back pain aside, I still am struggling with everything else...how can it be that only at the beginning of February this year I felt the best I had done in ages whilst a war was being deployed inside my body. In many ways, I'm best off thinking I'm just dealing with some good old fashioned back pain.
Busy days seem to help...help to take my mind off of things and divert my attention. I feel trapped by many things at the moment...the lack of independence, lack of control of my own life, not being able to live our lives that this time a year ago were so great...Things will get easier...I hope. And there's my word...hope.
Look down, you never know what you'll see...
Beautiful colourful tomatoes...quintessentially summer...
DW and the adorable Giulia Achilli....the best of friends. : )
Brothers from different mothers...no further explanation required!
I'm sorry for seeming so down but even when feeling this way I'm still noting the things I'm grateful for...today was the Putney tow path walk with DW, a walk that we did most weekends when living there, evenings with the Putney pack filled with love and laughter, the kindness shown by Giulia and being put on the green light for good behaviour (!), walking for 45 minutes continuously, hearing DW laugh and feeling the very welcome summer rain.
Sunday 25th June
Another good day....including a lie in! Thanks to the new bed and my back pain getting better these are now a feature in our lives! Whoop, whoop!
Normally Sunday's are our day but today was an exception as DW went to watch the final at Queen's Club with Kim (thanks for arranging K).
Not a bad view for tennis!
I spent the afternoon with the gorgeous Emily Wright....so we were ladies who lunched at Dorney Court. It was amazing to be able to release more of the pent up emotions with Emily...it made me feel less alone and reinforced the BT ad slogan of "It's good to talk....
Beautiful girls under the fragrant jasmine arch...
We then got our afternoon exercise by visiting a local pick your own farm...today you paid for entry but could eat as much as you liked...a lot of strawberries were consumed!
Scrumptious cherries ripe for picking...
A field of asparagus...it was a case of searching for the remaining stalks
Arriving home after a nourishing afternoon (thanks darling girl), I stuck to my new mantra and called Sarah...we've been trying to catch up in person but it's not been working out so a facetime opportunity was the next best thing...it's definitely a great way to feel less isolated and connected with those I love. Thanks S for a fab natter.
And no Sunday would be complete without a Sunday night supper...
BBQ'd mackerel with a herby salad and asparagus picked by own hands!
A refreshing cup of mint tea....
Today provided an extra boost of positivity and I could feel this in body and mind...I clearly get my energy from others and so this mind is solar powered and feels benefit from being recharged...So all ideas and visits are welcome to keep me busy and keep my mind off of medical stuff!
A great day...talking with Emily, shelling the broad beans I picked and feeling their silky lining, talking to Sarah, sharing our days over dinner with DW, having a super Sunday supper and hearing DW giggle throughout watching Despicable Me 2....Here's to week 3 and having a good week!
Week of 26th June
This week has seen a few achievements...one is getting behind the wheel of a car again. It came by chance as we looked to test drive and automatic to see if it would make a difference...initially I was hesitant to give it a go but once back behind the wheel it seemed like I'd never stopped. I then also drove my car, Fiat 500 convertible but manual for a short distance...it seemed harder but ok.
I had Reiki with the beautiful Pascale....it felt very serene and relaxing...I'd definitely recommend it.
Then I found a rash on my leg...it didn't hurt and looked like small red dots but probably worth getting checked out. DW and I went up to the Marsden and it transpired the rash was due to extremely low platelets...there's a first time for everything and Tuesday 27th June was my first platelet transfusion. It's strange knowing this has come from another human being but equally there's reason to give gratitude for everyone who does this. So a thank you from the bottom of my hear for everyone I know who makes time to go and do this.
After the second transfusion, my skin showed an allergic reaction so thankfully after some antihistamine I was ok but it meant the red cell transfusion had to wait until the next day...so an overnight stay beckoned. Hmm....
Thanks to DW bringing my own pillows I had a much better sleep, though still short as I was woken at 6am and hadn't got to sleep until way past midnight...these hospital parties! ; )
Today I wanted to climb the walls of my room as the transfusion was due to take 6 hours...thankfully DW was around and also Sarah, one of my longest friends, popped in during lunch to say hello! This afternoon, I updated my blog...though later it transpired that it hadn't been saving....so frustrating!!!
Later that evening, DW and I went for a walk around the hospital, but actually also escaped the confines of the Marsden and walked around the block...I've felt so cooped up so even just this small bit of freedom felt liberating.
Thursday was a day that I had been practising for a few weeks...it was scan day and based on my previous MRI I was nervous about it. There was some confusion about the extra meds that I could take to help and also if it could be brought forward so that we could head home earlier....thankfully it was a pain free experience but yet isolating...I was wheeled there and then waited in the corridor for someone to collect me...there's a reason a patient is called a patient.
Once back in my room, it was a day of waiting to see if I could go home....after what felt like an eternity I was allowed to go home at 3pm. My blood counts were still low but for now rest was the name of the game. It was great to get home...even though in some ways it still doesn't feel like home...I'm not sure where does right now. But eating dinner at a table, picking some fresh mint for a tea, watching TV from a sofa, sleeping in my own bed were much appreciated...sometimes it's the small creature comforts that make all of the difference. Oh and finally my blue badge arrived...something that I never thought I would need but now have the flexibility to park in disabled places. I feel fraudulent at times on good days but then I'm reminded that this is something to take advantage of when you need to and no need to feel bad...sometimes I wish I had a badge that explained the situation, rather than looking normal when often that's far from where I feel.
After a long sleep, it was time for my first counselling session in a few months...I cried through it...it was good to let things out that had been bottling up...to voice things aloud...frustrations, loss of independence, cruelness on DW and I, sadness for life having been taken away (I know I'm wishing for a radical remission so that's not going to happen but can feel like it). It was very therapeutic so a big thank you to V for today's session.
Seizing the moment, I drove back home...it's a case of building confidence on this front...so a few more sessions with DW before I head out on my own and feel like I've just passed my test again.
Additional therapy today was pizza night with the Regans...I miss living near Rachel and just being able to pop over. Even though I'm 10 mins away, it's not the same as just walking round. We were all super tired so there wasn't even time for a game of Crazy Cuts (pictionary but cutting objects out rather than drawing).
Saturday 1st July
The arrival of Roarrghy from South Africa! Thanks Helen.xxx
After Roarrghy's arrival, things calmed down as I had a wonderful meditation and Tai Chi session with the beautiful Annet...we have a really strong connection so it's just wonderful having this session with her. Namaste.
We had a day of sorting things out in the house to feel like we've moved in a bit more....I went through some old boxes and found these...and also a fairytale story that DW wrote for my 18th birthday...let's just say that the fairytale did come true and despite the ring given for my 18th birthday not being an engagement ring...I was very lucky 9 years later to receive the real thing from my prince...I just wish that the current story was different.
My first birthday card from my Grandma...
A 17th/18th birthday card from Alicia.....you all now know why I hate short hair!
A sixth form event of some kind...I always have my eyes closed! Sarah, Eoin and Leonie are still very special people in my life.
Fancy dress party...with my girl Leonie...I also know this is the first night that DW and I kissed and have not been apart since...must have been the outfit!!!
Something inside has changed today and I'm feeling more optimistic and positive, I need to retain this for Monday's scan results and positively visualise a great response.
As you know I miss my long walks with DW but today I managed an hour's walk...this was a big achievement for me. DW's got his new power walks that he does and I wish I was part of this and discovering new walks but I will get there!
It was this evening that I discovered that all of Wednesday's writing had been lost...after a bit of frustration I simply just moved on...no point getting stressed but twas somewhat annoying!!!
This evening we went to visit Felicity and Neil...Felicity is one of my best uni friends so it's always nice seeing them and catching up. Tonight was great to see their house project looking so fantastic. It seemed that their 2 littlies also wanted to play as neither Amelie nor Scarlett wanted to sleep...despite having been settled 30 minutes before we got there.
DW left holding the baby....slightly awkward!
Soon they were friends! : )
Despite not being able to have proper chats with 2 small ones, it was so lovely to see them all and hear DW really laugh.
As DW is my chauffeur, I looked at the book of face on the way home and did one of the silly name games that comes up...this actually was pretty darn funny!
Today was all about days with DW involving nature and spectacular walks, making a new home with DW, seeing friends and inspiring others...more on this to come!
Sunday 2nd July
A beautiful summer's day...not too hot but just warm enough! Leonie came around for coffee...we talk a lot and one of my fears is not being remembered for the person I am...but someone who is ill and not the character I once was. Leonie reassured me that this wouldn't happen...this disease can feel at times it's taking some of your identity so it's good to voice this and gain reassurance from those around. Love you Wonechen.
We haven't been to Hambleden for ages so today's Sunday walk was through the fields...in our very fetching hats! DW you handsome man...a panama really suits you sir! It was today however that I noticed that the left side of my face looked somewhat swollen...one to mention to Dr P tomorrow.
Arriving home, I spent time rewriting my lost blog work and then it was time for Sunday night supper. As my brother was away, my sister in law, the amazing jazz musician Natalie came over for Sunday supper...it's rare to get an invite but as DW has travelled with work a lot I know what it feels like to be on your own and Sunday night is definitely not the time!
Sunday night supper cooking....
Steak to help with my red blood cells!
All served with a Greek salad.
As you know everyday I write 5 things that I'm grateful for...today's are chats with close friends (Wonechen), Hambleden walks with DW, 'It's the bus' banter with DW (long standing thing between us...which is basically when we drive to Hambleden if we see the bus we say...'It's the bus'!)...silly I know but makes us smile, doing some driving to start building confidence, dinner with Natalie and for spending over half of my life with my soul mate.
Tomorrow I receive results of my CT scan...an important meeting to which I'm nervous and calm about the same time. Positive future statement writing time!
Monday 3rd July
A busy hospital day planned - first blood test, then Dr Parton, then a test using nuclear dye to see how my kidneys are working and finally as it transpired a platelet transfusion...so the bit you're probably wondering about is the CT scan results...
The great news is that the scans show that the chemo is working. My largest tumour in my liver has halved with many other locations all reducing by a third and some of the smaller locations have reduced so much so that they were barely visible...phew. I felt DW literally crumble into a pool of tears onto my as Dr Parton talked us through this...I had tears as well, as it means the hard work is paying off. It was the best we could have hoped for and mentally really, really encouraging.
My cell count was low, too low for chemo so a platelet transfusion was planned for later that day post the blood test. The other change is that I will move onto weekly chemo to hopefully allow my body and bone marrow to tolerate the carboplatin more easily and to avoid any further delays...fingers crossed!
We talked about ways for me to gain weight....it seems a non refined sugar, dairy and alcohol free diet has led to me losing a stone in weight which is too much...so we talked about things I could introduce back into my diet. Diet is something I can control but clearly there are limits....at one point chips were mentioned and DW liked the sound of this...but Dr Parton turned to him and said "No, not for you!"...so funny!!!
I showed Dr Parton the giant spot on my face...for those of you who like Family Guy I was feeling that the left side of my face was looking like Quagmire...so antibiotics were prescribed...another drug...still again just do it!
We walked out of Dr Parton's office feeling so relieved...knowing in this myriad of shit that at least the drug was working. It means also that the cancer is almost certainly due to the genetic (BRCA) mutation. A very good start to the day and week!
Next stop...nuclear medicine to have some dye injected and then hourly blood tests to see how it was being processed by my body. This was until 4pm, then it was time for platelets....so finally at 6pm we got to leave the hospital...but at least we got to leave! Hurray!
Tuesday 4th July
The Welinder seniors arrive bringing DW his favourite Swedish chocolate...it's basically their version of a Rolo!
Gratitude today for tea in Eoin's garden (come Sept I'll have known him for 24 years!), Lisa B calling to catch up, an inner belief that somehow this will all be ok, hugs from the Welinder Snrs and big smiles from Giulia when I called to wish Greta a happy birthday....the small things. : )
Thursday 6th July
Today was a weird day...my first time of going to a hospice for me. The reason was for some counselling and complementary therapy...but nonetheless it still felt very alien and the sense of how the hell did I get here being at the front of mind. The decor was definitely geared to an older generation, which is why I love The Haven so much...it's neutral.
My counselling session was good...in the past few months there has been a lot of grief, loss and change and so it was good to recognise this and acknowledge it. I can't see an end to counselling at the moment but that's ok as well. Reflexology was pure bliss...if you've never had it before then I would really recommend it unless you're super sensitive/ ticklish on your feet!
To keep cool on this stonkingly hot day, the Welinder Snrs and I headed to Dorney Court for lunch to seek some solace in the shade. Following Dr Parton's advise, I ventured for a cheese and chutney sandwich and felt sheer delight in eating it...try it if you're ever there!
Before the b*tch came back we had planned to celebrate Maggie's 70th birthday in Paris. She lived there when she was younger and we had planned to surprise her by being there and also take her to a favourite restaurant. Sadly this plan is currently on hold (we will do it!) so instead we had...a 70th birthday celebration for Mrs W Senior at The Astor Grill at Cliveden...she'll probably now kill me for mentioning her age! Förlåt!!!
The amazing architecture of Cliveden house...
The Cliveden clocktower at night...
Friday 7th July
It was back to the Marsden again today for blood tests to see if chemo could happen on Monday...The count came back and it was not high enough...so another delay. There is an element of relief as no one wants to have chemo but I know treatment needs to continue so an element of frustration as well as this determined individual wants to get chemo done.
Pigeons dancing in the water to keep cool!
Friday traffic coming out of London was horrific and it took us 2 hours to get back but despite feeling exhausted it was a quick change as I had been waiting for this night for weeks! Chaka Khan at Henley Festival!
All aboard the Audriana II
Mr Hamilton - cheeky tortilla chips and dips!
Boat buddies...
The boys...
and the girls...gatecrashed by one boy!
Fireworks!
The river at night....
Thanks so much to the Hamiltons and Lawes for an amazing evening! And a special thank you to Rob & Ces for sharing the boat with us, we're so lucky to be able to come and experience these special evenings!
We were doubly lucky this evening as on the way home a large deer ran in front of the car...I had made the call to drive but thankfully I stopped and so did the deer in the nick of time...not what you need when building driving confidence back up!!! It'll soon be time for a solo drive. : )
Saturday 8th July
Today did not begin so well I was sick...in the past few weeks when this has happened I then feel fine after it but not today. Annet came for our meditation/ tai chi session and I started to feel slightly better after this but a bit later full nausea and more sickness occurred....this is not the way I wanted to spend my Saturday! Nausea is one of the worst things, as it takes over your whole body and focus...I tried ginger ale, napping but nothing made it better...I decided to call the Marsden...due to my blood count being low the day before they wanted me to go to A&E. This is the only downside of the Marsden is that their inpatient facility is limited...A&E was the last place I wanted to go but equally I wanted to stop feeling sick. So instead of a Saturday supper with the Welinder Snrs, we packed an overnight bag and headed down the M4 to the Chelsea & Westminster hospital to get checked out. The reason for going a bit further afield is that their links with the Marsden are strong so if I needed to be transferred then it would be easier from here.
The nurse at the Marsden had assured me that my case details would be faxed across but arriving at A&E the receptionist didn't know anything so it was more like a cold call. However, I was soon in a triage room shortly followed by an isolation room, as there was a concern that I might need IV antibiotics if my immune system had completely fallen. Thankfully a quick blood test later confirmed that I didn't need this but some anti nausea medication was given...I started to feel better pretty quick and after 2.5 hours was allowed to go home. Phew...neither of us fancied a night there.
Today I'm so grateful for DW always keeping calm on the surface, laughing with DW even when things aren't rosy, my session with Annet, to Ces for offering advise, love and support.
Sunday 9th July
Eurghhhhh....another day of nausea....and sickness. The heat definitely wasn't helping and the anti nausea medication I had at home wasn't helping. I contacted a few people and the conclusion was different medication was needed...it was just how. Another call to the Marsden and thankfully a prescription was sent to a local pharmacy to be picked up for the medication that I was given the night before...phew...I must say aside from a couple of very short walks, which I had hoped to help take my mind from the nausea, I lazed about and felt pretty sorry for myself...sorry DW/ Welinder Snrs. Dr Parton called and said that the likely cause of the nausea was antibiotics that I was taking for an infection on my face...time to reduce the dose. DW made sunday night supper and I did manage to eat a little bit...tomorrow will be better. Please!
Monday 10th July
Happy 70th birthday to a certain someone!!! : )
Another nauseous start to the day....will this ever go. My parents came over to say a post holiday and hello and get to back on their household duties (thank you super duper amounts)! ; ) But I was pretty useless and to coin the phrase, I still felt as sick as a parrot. As it was a normal working day I contacted my nurse at the Marsden to see if there was anything else I could do...the advise was to stop the antibiotics as it seemed as if the infection had cleared up...now to wait for the antibiotics and their nauseating effects to leave my system!
Thankfully as the day progressed and after a walk with DW I started to feel better.
One aspect of the current scenario is days sometimes feeling like groundhog day, so I'm working on ways to keep my grey cells occupied whilst not exhausting my physical cells...tricky! This will get better as I gain back some independence but phone chats are a positive way of feeling connected with people so it was wonderful to catch up with Kim and Rachel over the phone this evening. : )
Tuesday 11th July
The rain finally came! And with it some much welcome coolness....I still felt nauseous this morning but luckily today was the first day without any sickness...long may this continue! Since 2015, I've set up a run, based on the principle that I could set up my own version of a Race for Life event, to raise money for different charities. The first year it was for The Haven in support of our Sahara challenge, last year it was for Alexander Devine Children's Hospice Service. This year after much thought, the chosen charity is Coppafeel! They are a charity that look to educate young people (both genders) on how to check your boobs! It's a great charity and also supports my friend Vicki Clark who is doing a big challenge with them later this year.
So a task for the grey cells it was today to set this up! Email drafted. Email sent...then I got an email from a John Lewis colleague saying it had been blocked due to profanity...the profanity being that I had used the word boobs!!! Uh oh! Take 2....It really gave me a sense of achievement setting this up and creating a poster for promotion purposes...more tasks like this are needed!
If you're interested in taking part then drop me an email - victoria@welinder.com
To escape the cabin...yep cabin fever had increased, DW and I escaped to Dorney Court for lunch as my nausea had thankfully subsided....and all I wanted was that cheese and chutney sandwich again...it was the first thing that I had eaten that really tasted good...fingers crossed on the road to recovery!
A beautiful artichoke flower in the Kitchen garden at Dorney Court...
Despite my outing, how ancient does that sound, I was still feeling restless so took my flute out of its box and played for a while...it felt good to play and definitely is therapeutic, as I felt so much better after 20 minutes of playing. I am meant to be playing in a concert in September, so perhaps this should still be on the agenda so it gives me another focus...why not VW?!
Tuesday nights are tennis nights for DW but due to the endless but very welcome rain tennis was not an option...DW normally plays with Rob so that had been the plan and for Ces and I to have a girlie chat...but instead we all caught up which was a great way to spend a rainy Tuesday evening. Thanks for being so close guys.xxx
And a big thank you today to DW for keeping me sane...I know I was being a grumpy monkey. Love you so, so much.xxx
Wednesday 12th July
Happy birthday to Sarah! : )
Today was the best day that I've had in a while. It started with a visit from Karen my Macmillan nurse in which I decided to set myself some goals and targets to work to. A walk each day, which to be fair I'm mainly doing and also a drive a day to try and build my confidence up. I then had a good old natter with the ever wonderful Felicity...it's true that the phone is next best thing and is keeping me sane during this challenging time. I had another counselling session and felt really positive coming out of the session (thanks so much V).
DW and I had one of the best and longest walks that I've had in a while, managing to achieve around 45 minutes. Not too shabby! Then a long chat with Yseult oner the phone and to top everything off DW cooked a super yummo dinner...
Luca's pasta - a great sauce which will always be called Luca's pasta as it was made for the first time for us by Luca Achilli...grazie!
After dinner Rachel and I went for a drink, my rock n roll life meant this was a fresh mint tea for me! Again it was wonderful to have some girlie time and escape the cabin...I'm missing Rachel being 1 minute away but we've got plans on how we're going to see each other more which will be fun. : )
So a relatively busy day and a busy day makes a happy VW! I achieved driving to and from my counselling session, albeit with DW in the car...but still a good start and a long walk in my current predicament. I'm so grateful for my new counsellor, today's session was great and for DW to take the time to walk at a snails pace with me even though I know he'd like to speeding off. And a big thank you to the weather for keeping relatively cool...if you could just stay like this for the summer it would be much appreciated! : ))
Thursday 13th July
An earlyish start as today was a Marsden day...bloods needed to be checked to see if chemo could go ahead on Monday. Aside from having bloods taken there were no plans to see anyone else medically. Daniel bumped into Diana who recommended staying near the hospital until the results were in....so off we went and I decided today was the day for a Chelsea bun...when in Chelsea! : ) So we took our baked delights and sat in St Luke's Churchyard - if you're ever in the SW3 area and fancy a picnic I'd really recommend this park...it's so beautiful.
Diana called and I could tell by her voice it wasn't quite the news we wanted so we headed back to the Marsden. My haemoglobin and platelets had increased and despite being low would be ok for chemo but my naughty neutrophils were at 0.3...nowhere near the ideal 1.5 they needed to be. So it was all a bit frustrating as there's not really anything that can be done on this front. There is the white cell booster injection but this can cause a negative impact on other aspects of my blood so suspect there is some reticence....so a waiting game and an 8.30am appointment on Monday...now that is going to be early start! Diana also mentioned that there might be a chance of changing to a different chemotherapy...paclitaxel...anything with taxel in the name generally means complete hair loss...so this opens up this can of worms again as to whether to cold cap or not...hmmm...life was much simpler this time last year.
I had wanted to go trainer shopping after my blood results but Diana advised against this with such a low neutrophil count...so we did what I was told but it's so hard as I'm increasingly feeling like a caged animal.
Arriving home, I went down to the Odney Club to meet my friend Louise for an al fresco drink. Louise went through treatment three years ago so understands my frustrations and fears...she's also helping set up the Spe(e)dan 5k so it was good to have other things to talk about....plus as DW was heading off to tennis it gave the opportunity to go for a good walk around the Odney grounds.
The great thing about living in the village is that everyone takes parcels in for you..this evening I had 3 parcels to pick up from various neighbours, one of whom I had not met before. This is so lovely to say hello to new people but also feel a real sense of community. I don't think I've ever experienced this anywhere we've lived before so it's been a real treat to be here...I just wish I could be more involved...but in time I will be!
Tonight's dinner also deserves a showcase - it was made for me the previous week by Maggie and I so enjoyed it I wanted to make it for DW...
Sesame salmon with an asian style salad...
A big thank you to DW today for being there for me but staying calm and asking the right questions...I'd simply be lost without you. Thank you for giving me the strength to be brave enough to drive back from London (major achievement!) and for being my absolute best friend int eh entire world. I love you so, so much.
Friday 14th July
Wow such a good sleep...whilst having the nausea earlier in the week I hadn't slept well at nighttime due to daytime napping, so last night was the best sleep in a while...I even slept in.
Compared to the previous couple of days, today was very relaxed and I wasn't bothered about having little in my diary...I spent a couple of hours with my new neighbour, Jazz, nattering away and learning lots about the Cookham foodie scene...I will make my debut at some point!
Another Odney walk this afternoon, this time with my parents. Wild flowers are so beautiful so it was wonderful to come across this patch of wild flowers...Maggie W, it reminds me of your wedding bouquet.
This evening Kim came over for a curry...I seem to be eating a lot of curry but it's yummy and relatively healthy, right?! It was so good to see her as it felt like an eternity since I last saw her. I am so lucky to have her as a friend...thank you for texting me daily and making me laugh so much. I love you so much you beautiful girl. Despite being a chilly evening, DW was determined we'd sit outside in front of the chiminea...I wrapped myself up in a blanket with some fresh mint tea and enjoyed a summer's evening with DW and Kim...a great Friday evening. : )
Saturday 15th July
These cooler evenings are encouraging more sleeping...which is no bad thing so another great sleep achieved! Whoop!
My Saturday mornings currently start with meditation and Tai Chi with Annet. I'm so grateful for these sessions as they are super relaxing and it's wonderful to see Annet and feel the positive energy exude from her.
DW and I realised we didn't have anything at home for lunch, so decided to head out. It's tricky to know what to do with super low immunity. There is an element of cocooning away and not seeing anyone but this would drive me, well us both mad, so we decided to escape the confines of the house and found a table away from most people.
Once home, we logged into FaceTime and had a much overdue with our amazing friends Mike and Jen who live just outside of Seattle. It was also lovely to say hello to their daughter Maggie for the first time and also get a tour of their new(ish). We so wished you guys lived closer but we must chat more often as we love you so much! xxx
Tonight was a family BBQ at my parents...I had forgotten to take my back pain meds earlier in the day so decided to wait until nearer the next dose time...but by the time it was dinner time my back was so achy I had to cave and reach for the meds. Still it then meant I could enjoy the lovely dinner and engage in the conversation. Another fairly chilly evening so blanket at the ready and I was fine. In Sweden it's common for all restaurants and bars to have blankets on offer so that people can sit outside for most of the summer...we should adopt that here as summer's evenings really are the best.
Sunday 16th July
You may remember from 3 years ago about how much hair loss was really difficult for me. This time, it's been gradual but with the potential prospect of switching to a chemo regime that will cause hair loss I decided I needed to do a couple of things, things that are in my control for now. The first was get my own hair trimmed...if I use the cold cap this will potentially make it more effective and thus having a better chance of retaining my own hair. The second was getting my wig cut to be more akin to how my hair has been for the last year or so...so a bob. Despite leaving plenty of time, which I know is unusual for us, the M4 conspired against us so only the first could be done. Despite hair falling out everyday, I'm so lucky that Charlene was able to make my hair look half decent....
The best hairdresser in all of the lands....
This wonderful lady is going to look at my wig and cut over the course of this week so I can go back when I'm feeling ok to pick it up and have my armour to hand. Charlene, thank you so much for supporting this element...you truly are a super star and I'm so very lucky to have you. : )
Walking around Putney DW spotted this beautiful passion fruit flower....
And a Sunday would not be complete without a Sunday night supper...
Aromatic Asian steak with a broccoli, cucumber & radish salad
Writing this entry tonight, I'm feeling slightly lost, as I do not know what tomorrow will bring. I'm hopeful that my bloods will have picked up so that weekly treatment can finally start so that DW and I know what the next few weeks will start to look like. The sooner chemo is over, the sooner (fingers and toes crossed) that I can move onto a maintenance plan and a more normal way of life can be lived and enjoyed. I know patience is required but at times it can feel like living in a horrible limbo where you don't know what move will be played next. I will be writing positive future statements for tomorrow and keeping my chin up. This is definitely a long distance endurance event. Thank goodness I will have my handsome husband by my side. I wish more than anything else in the world for a medical miracle (if you know one of one please put the answer on a postcard) and for the pesky cancer cells to evaporate and allow me and my wonderful boy to lead our lives together...you never know miracles do happen so I have to keep on being full of hope and above all else determined. Oh and if you're ever looking for a chat then give me a call...we need to talk more. : )
All my love to you all....until next time...which will be sooner I promise!
Vxxx
