Following Saturday's pubic loss, today was the day that I first noticed hair coming out of my head. I washed my hair and saw some falling out...but to be honest, I hadn't washed my hair for a couple of days so I wasn't too surprised by this amount. The one brucie bonus is that my hair is nowhere near as greasy as it had been pre chemo, when I would wash it every day. It had started to become quite dry, so I decided to put on a deep conditioning treatment. I massaged this into my head and then ran my fingers through my hair and then 'Holy shit' that's not normal....I'm scared. As many of you know, the hair loss aspect of this situation is the one of the hardest for me. It's not vanity, it's sanity. Also, I've not felt ill from the disease, so in a bizarre way I don't want to look outwardly sick to others. Sure, I've got my armoury waiting in the wings in terms of the, no sorry my wig, headscarves etc. However, this won't protect me during the more private moments in the shower, in front of the mirror when cleaning my teeth, waking up in the morning. The other person I'm scared of this for is Daniel. I don't want him to see this...he will of course but I would give anything not for him not to. It makes me feel completely vulnerable and there's nothing I can do to control it or prevent it...well aside from the stuff that I'm doing with hair loss sprays and cold caps...but there's no guarantee and the chances are it will go. I'm strangely resigned to this, as well as wanting to fight it. Is it part of the complete breast cancer experience package? A necessary thing to go through. Who knows. As you can tell a real mixed bag of emotions.
In the spirit of of sharing...here's some of what I found in the shower that day...
Photo no.70 - it's starting on top...
Taking a deep breath, it was time to get on with the day. No point dwelling!
What a plonker! Daniel had driven into work this morning, so that he could get to the hospital quickly from London for my oncology appointment that afternoon. This meant I was going to work from home...all fine and dandy until I came down to the study to realise my laptop was happily nested on my desk at work...what to do...blog! Blog away! This was great as it's meant that I'm pretty much up to date. Blogging real time...whoop, whoop!
Having revealed my hand as a control freak, it won't surprise you that I went into the meeting with my oncologist with 3 pages of notes - sides effects, discussion topics etc. Yes, I'm a 'business' cancer patient...detach yourself and it's less emotional. You're discussing the cancer, not you. It's hard to describe but for whatever reason it makes it easier.
This meeting turned out to a positive session. Firstly, Dr Davis measured the tumour and it had shrunk from 3cmx3.5cm to 3cmx2.5cm. Result, the drugs do work Mr Ashcroft! Dr Davis also confirmed that I will more than likely have 6 sessions and not the 8 that had been muted. Result! Boom! We also discussed at length around the use of steroids and how to control them next time to try to mitigate some of the anxiety that had come out in round 1. Overall a really positive meeting...so a good news Monday!
After the meeting, we drove to my office for me to pick up said laptop. It always gives me a boost going in to see so many warm faces and receive a massive heap of encouragement. Arriving home, we both we feeling a sense of relief so decided to take a nap on the sofa. I remember thinking before the nap that I had left my laptop in the car...oh well go and get it later.........
Photo no.71 - stocking up on my vits!
Tuesday 25th March
Song of the day: You're makin me high - Toni Braxton
One thing I should say for this week, is that I've felt really good, 'normal' in fact. It's a strange treatment plan in terms of the three week cycle and how you feel each week. Again more hair was shed this morning, a sign that even though you're feeling good, there is something wrong as that hair should be on my head! Daniel's taken a really positive view to the hair loss, seeing it as a sign that the drugs are doing what they should be. I fully understand the logic and the sentiment but I'd rather it not be going anywhere!!!
Walking downstairs to start working, I suddenly realised that I had never retrieved my laptop from the car....plonker moment #2! I called Daniel to see how far away he was...Hyde Park Corner...mmn perhaps today won't be a working day afterall. Grrr!!!
Later that afternoon, my mum picked me up to take me to the hospital for what been dubbed a small procedure. My hands are pretty small and the medical team were concerned about the impact of the chemotherapy drugs on my veins. The suggestion was a port (basically a plug socket for the teams to take blood/ administer drugs, which is linked to a tube which goes into a vein) to be put into my arm into of my main veins. This would be mean that there would be no scrabbling around to try and find a vein in my hand and also reduced the risk of the smaller veins in my hand/ arm being aggravated by the drugs. Weighing up the benefits and risks, it was clear this was not really something to debate. Sure, I didn't want it but effectively I just had to suck it up. Due to the operation involving quite a few x-rays my mum wasn't allowed in the room, so the poor love had to wait outside.
A familiar face greeted me, it was Carol who had assisted with the ultrasound on my spleen. Then another friendly face walked in and it was Kirsty who had done my MRI. I didn't like the look of this room...an operating theatre with an x-ray machine. I had my trusted magic cream with me, so Carol applied this. Why this is not standard for all adults I just don't know. Ok, I can hear you all saying, we're not all babies like you...who cares it reduces the pain factor! Carol ran through the procedure and then I asked the fated question...how long will it take? Usually 20-30 minutes. Ok, that sounds fine. Dr Naji then introduced himself and the procedure once more. Anymore questions, no, ok away we go.
I don't know what I had expected from this procedure but it turned out to be the worst medical aspect so far. I was covered in surgical drapes in a sterile room with someone next to me who was about to cut into my arm...I'm not a celebrity but I want to get the hell out of here...oh right that's not an option. Fine. Breathe and think happy thoughts, well that's easier said than done. It was clear Dr Naji was having problems getting the tube into a vein. One tried, lets try the next one. No, you don't want to play ball either. Give me a break, come on veins! It was extremely uncomfortable, local anaesthetic kept being administered but I could feels pushes and pulls...then oh my god!!! Dr Naji touched a nerve. My lower arm felt a huge electric shock...when will this be over. Two veins tried and no luck. Dr Naji asked if I had had surgery or injuries to my right arm but the answer is no, I've never had any problems. I tried to remain calm, breathe slowly and most importantly will my veins on. Third time lucky - bingo! There was a huge sense of relief from everyone in the room. I had been thinking about the what if they can't get it in...but they did. So rather than 30 minutes later, it was 1h 30 minutes. I was a bit frustrated as this felt like it had been an ordeal for me and there was no takeaway leaflet on the aftercare, aside from something similarish. I need things written down, to remind myself but also to let Daniel know what is and isn't right. My mum in the meantime had got through a good chunk of her book!
Getting in the car I felt teary. The lyrics from Bruce Springsteen's song Street of Philadelphia spring to mind...I was bruised and batter and I couldn't tell what I felt. I wanted to talk to Daniel but he had sent a text saying he had gone into a meeting. I tried calling anyway. Voicemail. He then called back and I burst into tears...it was terrible. I felt bad crying down the phone knowing he was an hour away but in this instance I had to let it out. My mum was brilliant and I really appreciated having her there, I just wanted Daniel. We drove home and actually by the time we got back I wasn't feeling as terrible. A cup of tea and a couple of biscuits later I had almost forgotten the trauma from the previous couple of hours. It's amazing that the brain works in this way...plus it's good it does or you'd never go back!!!
By the time Daniel arrived home, I was feeling a million times better. Onwards and upwards!
Photo no.72 - snuggle time on the sofa - feeling a little fragile.
Wednesday 26th March
Song of the day: Wifey - Next (yep, Homer's my R&B man!)
One of the things that has not really been discussed with my medical team is counselling and support for the emotional side of things. I decided to take this into my own hands and do something about it. Dr Ford had given me a leaflet for someone locally who specialises in meditation, yoga, counselling and CBT. I hadn't done anything with it, but mentioning it to a friend at work, the person turned out to be her yoga teacher who she thought was excellent. So I decided to book a session and it was for this morning. I've been really open with everyone about this disease but you do keep stuff in, mainly in my case to protect loved ones. As predicted my 90 minutes with Davinder turned into a tear fest. It felt good to let out inner most thoughts to someone who wouldn't react to them but just guide me to understand why I thought them or how I could deal with them. The ones about hair loss, I've written in the post for Monday 24th March and perhaps some of the others will come out along the way. I came out my session feeling exhausted. This I saw as a good sign and I also felt cleansed. Cleansed to let out some of the thoughts that I had been holding onto....I had passed them on.
Despite feeling tired, I was determined to haul ass and get into work. So that's exactly what I did and completed 3 hours of work. Daniel was out that evening and I had meant to be seeing Tom and Sonia but Tom was poorly so best to stay away! I'm trying to not be too anal about this type of thing so I'm using Daniel as my sense check. What he says goes! I had made a massive batch of tartar sauce on Sunday, so old lady dinner for me of fishcakes, peas and tartar sauce! I then face timed with Tom and Sonia as a good second best, which was great to catch up with these lovely people! We will see you soon, promise!xxx
Photo no.73 - selfie with Little Miss S!
Photo no.74 - reflective selfie with Little Miss S!
≈
Thursday 27th March
Song of the day (courtesy of Wonechen): One day like this - Elbow. I always think this would make a good song to walk down the aisle to. Maybe for our third wedding we'll try this!
Photo no.75 - what is this?!!!!
And there was much more....Daniel is truly the most wonderful person as soon as I touch or do anything to my hair, he's there to support me and pick up the many hairs that are making their escape. Naughty hairs!
Early start at work today...11.00am meeting, which I managed to be late for due to spending a while finding a parking space. The person I met is not important to the tale but the message is one that I find myself hearing over and over again...my problems (other person) are nowhere near as bad as yours (me). I understand the gravity of my illness but I still think your own worries are huge whatever the issue and we all deal with them in different ways. So to everyone out there, don't refrain from downloading on me. A problem shared is a problem halved. And to the person I met, I hope you've booked in a coffee with you know who! : )
I felt back on track today regarding work and had a great day. It was made all the better when Christian mentioned he had read my Sichuan prawn entry...so people are reading this. It's really lovely when I know. Plus Sichuan prawns are part of the recipe share club that predominantly consists of Christian, Debbie and myself...we need a catch up!!!
At 5pm, it was time to go...I'd done a long day afterall! ; ) I drove over to Twyford to meet up with the one and only Rebecca Brookes.....no, not the ginger one, the very talented and caring Becky Brookes! It was fab to catch up with her, she's so full of life and laughter despite her cat's best efforts that day to put a dampener on things by puking in a few locations! It was short catch up over a peppermint tea (we'll have to do it again soon!) and it was time to head off home.
Daniel was out (again - I hear you say!) for dinner. It's good that he keeps doing normal things during my good weeks and make the most of things. Sure, I'd love him to be home all the time but that's not healthy and we both need our own space. This evening, I was cooking supper for Kim. Simple supper of asparagus, pesto, lemon (juice and zest) and spaghetti. It's probably not the healthiest supper but boy does it taste good! I also let Kim sample a Swedish drink called Svagdricka, literally weak drink. I absolutely love this stuff and we concluded the best way to describe it is a shandy made with coke and bitter. It sounds grim but is so good.
Photo no.76 - modelling Svagdricka!
As always with Kim, we had a top evening full of chatter and laughter. We had planned to watch a movie (and often do) but it never happened, as we were catching up on the events of our respective weeks. I was also consulting her over my hair wash schedule...should I wash it on Friday to get benefit before chemo of 3 days or wash it Saturday to leave it another day....Friday was decided upon, so before heading to bed that night I doused my hair with conditioner. Apprehension was building as to what would happen.
Friday 28th March
Song of the day: I'm still standing - Elton John (boy did I need this to boost me). Though I do love Kim's song choice of My baby just cares for me - Nina Simone. The piano interlude allows time for a good amount of dancing!
Photo no.77 - output of hair wash.....well a snapshot
Looking at the photo now, it's a lot of hair but what I guess no photo can convey is the scare factor of when you're combing your hair and it just sheds. It doesn't hurt as the follicle has died. It's just simple unpleasant and terrifying as there's nothing you can do. Mr W was great and helped me clear up. He also did a sterling job washing my hair. Where the port had been inserted into my arm was covered in a bandage that I couldn't get wet for 4 days...so back to the good scenario of Daniel washing my back and in this instance my hair. It was horrid being sat in the bath being surrounded by hair but it was speedy wash and I was out. Clearing the plug hole was also grim. Still another thing done.
I planned to head into work after my physio session, so remarkably my laptop was actually at home (!) so I cracked on with some work....after I had some dancing in the kitchen time to cheer myself up. My neighbours must think I'm bonkers if they can see in.
The physio session was to try and get rid of the cording that has built up since my biopsy. It's been slightly frustrating as it's felt the same for a couple of week but today Diana's magic fingers managed to snap two of the cording strands...progess! After this and a brief chat with Bev about how the IV drip would work with the port and should it feel like this type questions, I headed into worked for a thoroughly productive afternoon. I felt the best I had in ages and my brain was operating at a higher capacity! Yay! I could have stayed for many hours but knowing I had to be in Chiswick for 7pm meant trying to leave at 5.30pm, which turned to 6.00pm and I finally got in the car at 6.20pm...this was going to go two ways, either I had timed it brilliantly and would fly down the M4 or I'd be stuck and super late...thankfully it was the former so I was fashionably only 10 minutes late. The journey flew by as I was good natter with the wonderful Laura Deutsch. It was the first time we've caught up since Lana was born and I had been 'poisoned' (ok, I know it's making me better!). So it was full of good chat. I only wish we loved closer to one another but we'll meet up soon for sure.
The Duke of Sussex is a lovely pub, opposite Acton Green. I discovered it when Emily and Kim lived two streets away and really like the atmosphere. We were meeting Stuart and Jasmin. Daniel worked with Stuart in Saudi Arabia and they've remained in touch ever since. We're absolutely delighted about Stuart and Jasmin's upcoming nuptials and are looking forward celebrating with them.
Photo no.78 - lobster paella...yum!
Around 10pm, I was hit with a wall of tiredness, lame on a Friday night it has to be said. Though that didn't stop me getting through an amazing Crema Catalana (citrus Creme Brûlée). We headed down the M4 and were home in under 30 minutes so a speedy journey.
Photo no.79 - a tired lass but still a small smile even though I needed to hoover up hairs from the bathroom floor at midnight. Ah well. Good night!
Saturday 29th March
Song of the day: Beautiful day - U2
A day of fun with my favourite person...I slept ok but didn't have the much anticipated lie in that I was craving. I guess some of the apprehension of Monday was starting to kick in. Still up and at them. As my personal chef is not coming over next week, I needed to plan the meals to make Daniel's life a bit easier. So I dropped Daniel off at the gym and I carried onto Waitrose for a mega shop...I say mega shop as normally I only buy a couple of days at a time. I think shopping this way there's less waste and I only buy what we're definitely going to eat. But hey new circumstances mean change. After the shop, we got ready and headed up to London. The motorway gods were not kind as there had been a crash on the M4 which meant a lengthy diversion to the M40 and reduced our time on Regent Street. I wanted to head to Liberty to look at some headscarves. Thankfully once diverted our quest to Regent Street was swift and we had ample time to look at all of the beautiful scarves on offer. It's a definite must for any travellers to London!!! I ended up buying a beautiful pink peacock feather design with the endorsement of my man! Good times.
We then hurried back to the car, as Daniel was having his haircut...yep, you know the place. Apparently this is pre pre show cut...he's off to a big aviation show at the end of May and must look his best, to the point of planning haircuts in...bless! I understand that other colleagues are doing the same so this must be a big deal!
With some time on my hands, I took advantage and explored some shops in Putney. After Mr W had had his locks styled by Stephan, we took along the river. It was a beautiful evening as indeed the day had been. I love the riverside in Putney, it's such a wonderful mix with the river and the rowing clubs. There's a fantastic atmosphere and we love it. The dream would be to have one of the houses backing onto the river with a glass dining room on the back.......you can but dream!
On my travels around Putney, a shop was selling bubbles.....aha! Who doesn't love blowing bubbles? There was only one thing to do....blow!
Photo no.80 - never too old for blowing bubbles!
After our riverside promenade, we headed down the A3 to Surbiton to see Felicity and Neil for....no not pizza night.....Mexican night! Arriba!!! Nachos followed by an awesome chilli con carne, what's not to like! It was a truly fab evening (complete with a Zumba demo by me - I do miss it and will be back soon!), even though Neil was distraught by some of our song choices to listen to. As the clocks were springing forward, we made our way home at what felt like early doors but by the time we were in bed it was 2am (new time)! A great Saturday night, thanks to the Pattinson-Jones' for their warm hospitality and for Tink staying out of the way for most of the evening (she's a tiger!!!).
Sunday 30th March
Happy Mother's Day!
Homer's hit factory today recommends the appropriate Mama - Spice Girls
Despite the fairly late bed time, I was wide awake just after 8am. I tired my darnedest to get back to sleep but no chance! Grrr! So, I got up and blogged so that going into next week, I'm up to date! At last!!! The downside was that as I was writing, it seemed I was getting covered in more and more hair from not even moving that much. Sigh.
I had woken up with a sniffly nose and sore throat. Daniel had mentioned the evening before that he thought he was coming down with a cold. Thankfully mine seemed to turn into hayfever but Daniel seems to have had a combo of both, poor thing. Fingers crossed he's feeling better soon and that my white cells hold up for tomorrow!
To celebrate Mother's Day we hosted brunch. My parents, Luke and Natalie came over. It was a good way to start the day and who doesn't like a pain aux raisin or a croissant with some Nutella (Natalie?!). Luke and Natalie both had been hard at work and brought some homemade cupcakes over, which were fab. It was good to all get together.
We then had the afternoon to ourselves, which was brilliant to relax on the terrace in the sun. It makes you feel so good to have the sun shining on your face. Needing to get some exercise in we headed off to Hambleden for a stroll along the Thames. We took a longer walk this time and it was utterly glorious. So here's my pic of the day!
Photo no.81 - in the field of gold...daffodils, my favourites (but has to be said not my favourite photo)!
So how am I feeling about tomorrow? 25% more drugs....ok, I did 75% before so that should be fine. How's it going to feel using the port line tomorrow? I don't know but at least I know there's a line into me and no one should be messing around with my hands. Winner! Is there any point in using the cold cap? I think so, at least I know I gave it my very best shot and as Daniel said earlier I should be rocking some fab short styles later this year...I don't want to but hey focus on the positives. I'm happy that Daniel and Kim are coming tomorrow. It will make it so much easier. Of course I'm apprehensive about the side effects but at least I know a bit more of how to handle them. I'm happy my chemo mentor is on his way. I've also got time planned in with my parents, which is great. Some gardening with my Dad at the end of the week, I bet he can't wait! ; )) I just hope and pray that the chemo fog does lift within the same timeframe as last time and that the anxiety feelings are minimised. And finally, I'm not going to beat myself up so much about the need for getting back on my feet asap (I'm listening Debbie!). Next week is recovery time. What I do feel is great love for everyone in my life and I wish you a very happy week ahead, kicking the start of April off!
Right...it's Sunday night...you know the score. Time for me and Mr W to have our dinner!!! Next time we chat, it will be the chemo chronicles part deux (I suspect with far less hair on my head)! xxx
No comments:
Post a Comment