Why hello! How have you been? Last week seems a lifetime ago, as this week (7th April) has flown by. Time to update you on chemo round 2. I'm feeling a little bit of writers block, so let's see how this goes......
Song of the day: Smile - Nat King Cole
Off to the PMH then.....no tears this time. I knew what to expect and as mentioned before just needed to suck it up and get on with it. I haphazardly applied some magic cream to my arm and not having the correct plaster to put over the top I resorted to the next best thing...cling film! I'm not convinced it applied enough or that the cling film was particularly effective as I definitely felt the 'sharp scratch' (standard lingo!). We arrived a little late and met Kim in reception. Lovely to have her there as always...then off up to oncology. This time I knew that it was going to be easier to gain access to my veins as the port was in my arm meaning no cannulas in my hand. Phew. Blood was taken and sent off to the lab to see if the chemo could be administered or not. This is the worst bit as you so want to the result to come back positive so that you know that the treatment will go ahead. Thankfully it was a yes! As I had lost quite a lot of hair during the previous week I wanted to try out different cold cap sizes. I had started with blue but this felt too big so settled on the next size down...new colour...red! This was a lot tighter than the blue one and it really pushed on my temples. It also had a horrible synthetic/ plasticy smell which was unpleasant. Still needs must! The first 15 minutes or so with this one were uncomfortable. So distraction techniques were required...Kim was good at chatting for distraction but she went to go and get me a hot chocolate...ok Daniel talk to me shoot....mmn he's not so good with on the spot small talk so thankfully Kim returned swiftly and conversation levels resumed.
Photo no.82 - little red riding hood...someone's not looking to chipper!
Unlike the first time with the cold cap, I had thoughts going through my head of wanting to take this off but knowing that I should preserve. So that's exactly what I did. Bev was brilliant again, spending time answering my endless questions and Regina popped in to make me smile as well. I remember feeling more spaced out this time, but suspect that was probably due to something tightly squeezing my head for 3 hours!!!
Oh yep, just to add further insult to injury my period decided to make an appearance...thanks!
After the chemo had been administered Daniel took his usual requests and headed off to caffe nero.
Photo no.83 - tea and Little Miss S makes a happier V!
It has to be said not having the cannula in my hand made a real difference but as you saw from the photo above I still covered the line in my arm...don't need to see that! Around 3pm, it was nearly time to leave. My goodie back of anti nausea drugs came up from the pharmacy....wait a minute one of the drugs was missing...where's the Ondansetron?! Quite a few people had mentioned that this was one of the good ones so where's mine?! The other reason for asking was that I was keen to avoid taking the steroids as I felt strongly this had contributed to the foggy headness/ anxiety from round 1. Bev was on this quickly and on our way our we collected the Ondanestron, full compliment of cocktail ingredients and ready to go! Aside from feeling spaced out, I wasn't feeling too bad considering my does had been increased. Keep going....
We hugged and said goodbye to Kim and headed home. On arriving home we were greeted by my nurse for the week Mr Welinder snr! We sat down and wrote my meds schedule out for the next few days so it was just a check list. Time to hit the sofa until dinner. I was impressed with my appetite at dinner time. Charlie Bigham makes a mean readymade lasagne so this is what we all tucked into.
Remembering that I had only had one episode of feeling really sick from round one, I doubled the dose of dom perignon (aka domperidone) and took some paracetamols to hopefully prevent the hangover headache the next day....success this seemed to do the trick, as I had a pretty decent night's sleep! Hurrah!
Tuesday 1st April
I pity the fool....
Song of the day.....2 options! Homer's choice - Right On: The Pasadena's. VW choice - Ignition: R Kelly (can I get a toot, toot!).
Wow! What a difference round 2 made. I felt good, thanks to the preventative measures I took the night before. Sure I felt slightly queasy but I knew I could deal with that. So goodbye steroids, you are not coming into my system this time round (suspect they might make an appearance when I switch drugs, so I planned to enjoy time without them!).
Photo no.83 - hair today, gone tomorrow.....
This was just from combing my hair through once with a wide tooth comb...scary doors. Daniel has been an absolutely angel and had stayed with me each time I needed to do stuff to my hair in the morning and evening. During this week, the largest amounts came out. It was constant in terms of clothes being covered with hair, waking up to hair all over my pillow. Operation hair clear up was 24/7. Even at this stage though I was still able to go out and about without feeling the need for a wig/ scarf. It amazed me how much hair there had been on my head. Good job!
Nurse Lars ensured that the essentials were done...temperature taken..check...meds taken..check...rest...yes boss!
In the afternoon it was time for my mum to take me back to the PMH for my immunity boost jab....a stab in the stomach! Regina is still trying to get me to do this myself but aside from really not wanting to stick a needle in my stomach, I like the fact that I go in on day 2 to get some reassurance if needed. My mum commented on how much better she thought I was doing this time round on day 2....I actually felt pretty darn good apart from some queasiness. So much so that I was able to pop into Waitrose for some items and then head out with Lars for an hour's walk by the river. The weather was beautiful so it was brilliant to get out and take some exercise.
Photo no.84 - pre dinner cordial spritzer - hair not looking too bad...
Dinner that night was kindly provided by mama mcf, so it was nice to be able to put something homemade into the oven. I can thoroughly recommend this classic Waitrose recipe from 1994 for a midweek dinner.
Photo no.85 - Spicy Bacon & Beans - crusty bread also works well as an accompaniment.
Overall a good day 2 and I felt I had made significant progress from round 1. Time for bed...my throat felt a bit sore....surely not...tomorrow will be a good day!!!
Wednesday 2nd April
Song of the day: Fast Car - Tracy Chapman
Happy Birthday Emily!xxx
Overnight I had woken with a tight chest, killer sore throat and general achiness. Daniel had had a cold over the previous weekend, so it was inevitable that I was going to get it and boy did I!
I was so frustrated that I had been whacked with something else, as chemo no.2 had been going so well. Ok, missy just ride the waves you know to write week 1 off. Still...grrr!!! A day on and off the sofa was required...I know rest, rest and lets throw a bit more rest in. After consulting with nurse Lars we concluded that a GP visit would be wise, so we took a walk there later in the afternoon. I have said so many times that I feel blessed with everyone and everything supporting me through this but I do have to say have to say that my GP surgery is amazing. This time I met Dr Hunter for the first time. She was incredible running through my list (got to love a list - well I do!) and giving me the reassurance of saying its ok to pop in whenever I felt I needed to....I find this unfamiliar as generally I have thankfully, rarely frequented medical establishments in the past.
My hair felt really alien to me this week. It seemed that it didn't seem my own as the colour and texture were different. Perhaps I'm now coming out of Wonderland and now looking through the looking glass into a world where nothing quite makes sense anymore.
One thing I am determined to do this year is Race for Life. I've done a couple in the past but this year running 5k is likely to be more of a challenge than it's been before. I emailed some of the lovely ladies at work to see if they would be interested in taking part....oh my what a response. I was completely bowled over with the support that came back. Amy Hill you are a legend in rallying the team and also for making me look ahead to my Natalie Portman c.2006 haircut! I cannot wait until 15th June to share a wonderful afternoon with everyone taking part and for the post race picnic with all of our loved ones. Big love.xxx
I can't quite remember what tipped me into tears just before bed on this day...probably something fairly small but for whatever reason I did. Actually, writing to you now is triggering what it was....I was hit with the fact that I'm actually quite ill. I know you all might think this is a rather delayed response but for whatever reason today was the day that this happened. I guess it was having the worst cold/flu and feeling generally run down that sparked this. Even writing this now, I do understand the severity of the illness (my back is aching from bone marrow being produced) but when I'm feeling good I'm lured back into a pre illness world, the world I want to be in permanently. The only reminder is looking in the mirror and feeling like a clown after show time. After snuggling with Daniel, I felt a whole heap better. Sometimes it's just good to let this out....breathe and get back to fighting form.
At the core I'm super positive about getting through this and hope you see and feel this. But in order for me to be true to myself and let you into the full experience, I want to show you the lows as well as the many highs.
Photo no.86 - teary selfie...
Thursday 3rd April
Oh lordy, lord I feel dreadful......big croaky sigh. I had to try and feel better as Emily was coming over in the afternoon and I had been really looking forward to seeing her, as I hadn't seen for ages. So guess what..more sofa time. I called the Janes as well to see if there was anything else I could do to feel better but nope it was a case of paracetamol, rest and temperature monitoring.
Although I still felt fairly tired when Emily arrived, I was getting back on track. So it was great to have an afternoon catching up with her and for her to tell me to rest while she worked. Yes mam! I think if I wrote my feelings about Emily on the blog she might kill me....but what I will say is that she's one of my closest friends who supports me during the highs and lows, she gives the best hugs and tries her darned hardest to fill Daniel up! Love you chicken.xxx
Photo no.87 - makeover time courtesy of Emily Wright. As you can see my hair at this stage was getting extremely thin...it makes me facial features look gigantic to me...clown V!
Photo no.88 - hug time (and no I'm not taking this down Miss Wright)!
As a treat that evening, we decided to get takeaway burgers from The Crown in Bray. By the time they arrived Lars and I were ravenous and leapt on Daniel as soon as he walked through the door. The burgers were good but not worth the price tag, still fun to try. It was over dinner that I started to feel quite cold. My temperature was looking ok, so no need to worry. Around 22.30 I was shivering all over and could not get warm. Don't panic. I took my temperature an hour later and it had reached 37.5 degrees. Earlier that day Jane had said if my temperature was constantly 37.5 degrees for two hours or more and or it reached 38 degrees I needed to make a call to the hospital. So Daniel and I decided that I should take some paracetamol and review. We both were awake until 00.30 with my temperature still at 37.5 degrees. We decided to set an alarm for an hours time to review. I fell asleep and was woken by the alarm we had set. Bad times, my temperature had now risen to 38.1 degree....danger zone time. You're probably wondering why this is so dangerous. The reason is that my immune system is at an all time low, so any infection can take hold very quickly and temperature is a good indication of what's going on. In the case of infection I need to be treated asap so that it doesn't develop into anything worse. So what did we do. We kept extremely calm. It's at times like this I realise that we are a dream team (don't throw up!). Daniel called my oncologist's out of hours number and explained my symptoms. We were then told they would call us back with what to do. The phone rang...come in asap, we want to take blood tests and potentially start IV antibiotics. Scary times. We flagged that normally I go to the Princess Margaret for treatment rather than where the out of hours hospital is based. Ok, we'll call you back to let you know what you should do. Phone rings. This is Debbie from the Princess Margaret. Again, Daniel ran through my symptoms. Thankfully by this time by temperature had started to come down. Debbie's advise..more paracetamol and sleep. Mmn...this rather contradicts what the on call oncologist had advised. I had some antibiotics that I had previously been prescribed but not taken during round 1. Should I take these? Oh yes, that shouldn't do any harm. I was getting slightly annoyed so ended up talking to her as well. If my temperature hadn't been on the decrease then I would have challenged her more but as it had come down to 37.4 degrees, we decided to stay at home and go to PMH in the morning. During these few hours, I drank nearly 2 litres of water...hydration, hydration, hydration. Writing this in hindsight, I should have just gone straight to the hospital in Reading and this is what we'll now do. So around 4am we both finally went to sleep for the night. Thanks darling for being so amazing and calm throughout the whole thing. I love you.xxx
Friday 4th April
Song of the day: Something about you - Level 42
So what happened today? Well, a first in my relationship with Daniel....breakfast in bed. Yep, it took this much for it to happen! ; ) Actually I'm not a lover of breakfast in bed, more a cup of tea kind of girl but today this was very welcome. We both managed to get a bit of sleep and thankfully my temperature had come down to a normal level. However, we both felt we needed some reassurance after the conflicting advice in the night so we decided to call Jane and say that we wanted to come. I felt dreadful, so really wanted to have the once over to ensure we were doing all that we could. I got slowly got ready and we headed into PMH mid morning.
Oh yeah, I should mention at this point what I had planned to do this morning was some gardening with my dad. I had been really looking forward to this, so was really annoyed that this had to be put on hold. C'est la vie!
On arriving at PMH we went straight to oncology, which was thankfully empty. Regina took really good care of us and we talked through all of the symptoms of the last 24 hours. I was then seen by a doctor who I'd not met before. Both her and Regina felt that I just had a bad cold and that I should keep taking the oral antibiotics. No comment was really made about the conflicting advice in the night. Towards the end of the conversation with the doctor she asked if I was happy with the advice given, which to all intent and purposes I was but the one thing I pushed for was a blood test. This would put both of our minds at ease. They were happy to do this, so at least it wasn't a battle to get it done. Regina is a complete angel when it comes to sticking needles in and without my magic cream I barely felt anything for the blood test...all good. She had someone watching how to take blood through a port and this nurse was really lovely and friendly, though I had feared that she was going to do it and be guided by Regina but thankfully this was not the case!!!
I felt up to doing my physio appointment so Regina said we could be her guest and stay in oncology while we were waiting for the appointment, we were even provided with some sandwiches. Result! At this point my mum came over to take over from Daniel, as for whatever reason he was keen to go to work. The physio session was good with Diana and we managed to snap some of the cords that were still present in my left armpit...it's such a strange sensation when it happens..literally it's like a guitar string snapping inside you.
We went to pick up some food and though I was exhausted it was good to be able to do this and not feel reliant on others. Though my mum needs to register for quick check as it felt like an age to get her through Waitrose!!! Arriving back at home, my Dad had come over as well. We waved at him to get him to move his car so we could park but he started to mess around and pretend that he wasn't going to come....for whatever reason this caused me to blurt a few load expletives out in the car. My mum is amazing. She kept her calm and said don't get agitated, Dad was only joking...I think I had had just enough for one day and this just caused something in me to snap...lack of sleep, stress of working out what was going on with my body, wanting nothing more than just to relax on this sofa. Once out though I felt a million times better and more relaxed...so better out than pent up! Release and breathe!
I was greeted by a flower delivery box...this made my day! Thanks Sarah for such a lovely thought, it really did put a smile on face, particularly you message. Lots of love to you and we will eventually meet up! xxx
Photo no.89 - a beautiful bouquet from a gorgeous girl!
I gave my Dad an update and then headed upstairs for the much needed sofa time. I wanted to snooze but it just didn't happen, so after a while I headed downstairs and laid on the sun lounger while my mum read and my dad planted some chilli seeds for me (more to come fingers crossed!).
Daniel arrived home around 7pm and it transpired he'd not gone into work in the end...he just needed some time out on his own. Fair play, it had been an intense day. After a quick pizza dinner we both retired to the sofa and switched off with some Friday night TV.
Throughout the evening I had been monitoring my temperature...one could say slightly obsessively but hey it was just my time. Then a reading came shortly before bedtime that I did not want to see...38.2 degrees.....shit. What shall we do? Daniel was fantastic and reassured me to keep taking the paracetamol and try to relax. Had I been alone I think I may have made a call to a hospital but Daniel installed confidence to just take it easy and try and sleep....so that's exactly what we did.
Saturday 5th April
Song of the day: Get down Saturday night - Oliver Cheatham. This has to go on record as one of my favourite songs of the day....#homerpulleditoutofthebag and a happy birthday to you! xxx
Two words to describe today...sofa Saturday. Rest, rest and more rest...bizarrely I wasn't getting cabin fever so I must have been feeling pretty ropey or else I would have been climbing the walls. Another toast and raspberry jam breakfast in bed from my darling husband.
That evening we were seeing Rob and Ces for dinner at their house. It was just what we needed, an evening with two wonderful people. I was feeling really self conscious about my hair. It was a bit greasy as I had applied lashings of argan oil to add some moisture so not a great start but I felt that I had lost quite a lot of hair even from Thursday, so this was the first time of publicly showing the current hair situation. Deep breath, it'll be ok. Walking to the car I could feel the wind blowing my hair and going directly to my scalp. To all you gents out there I really sympathise and to Rob's point his sympathy is limited with my hair loss as mine should be temporary...! Should be...lets hope so! We had a lovely relaxing dinner at Hamilton HQ. Ces and I coughing in unison drove the boys slightly crazy..what can you do. We headed home fairly early doors and went to bed for a good night's sleep with thankfully no temperature in sight.
Sunday 6th April
Song of the day (Lee Homer): Secret Garden - Bruce Springsteen
Song of the day (VW): Survivor - Destiny's Child (appropriate given the last few days)
Having a good night's sleep made the world of difference, it always does. Sure I still felt a bit washed out but I was definitely starting to feel better. Time to get on with some normal stuff...step one...buy food.
Remembering the cold headed feeling from the night before, I decided it was time to don the wig to keep my head warm to avoid any further chills being caught. Putting it on was quite a shock as there was a lot of hair compared to my now natural state, so the comparison felt humongous. I also felt nervous about this initial trip as partners in my local Waitrose recognise me so this would be a change of appearance, albeit for the better. So feeling pretty self conscious I got ready and went.
Photo no.90 - a nervous girl heads off to Waitrose for the first time in her wig.
So how was it? Better than anticipated but I felt that my peripheral vision was lost, as when wearing the wig you can't tuck the hair behind your ears. But overall...not a bad first outing. I know I've worn it in public before but that was when I had a full compliment of hair underneath, so this was different. The one bonus was that with less hair, the wig felt far more comfortable and I didn't have the feeling of needing to get it off as soon as possible. Always look for the silver linings.
Deciding that we should bimble around the house, I decided it was time to bake. Yep, you can tell I was feeling better as I didn't need to be glued to the sofa. For the past couple of days we had some fairly ripe bananas so I decided to make some banana bread. Not just any banana bread, the one that my grandmother used to make. Something that I have really fond memories from as a child. So much so that I've wanted the recipe for ages and it was only over Christmas last year that I asked my aunt for it. She kindly gave me a photocopy of the page but this meant more to me, so I decided to track down a copy of the book. It's called The Times Cookery Book by Katie Stewart and was first published in 1972. I learnt the reason for my grandmother buying this was when she was visiting some friends she wanted to make them Spaghetti Bolognese and didn't have a recipe with her, so she bought this book. My grandmother is one of the reasons I love cooking so much. She often baked, made the most amazing chutneys and pickles and every Sunday when I visited her, she would make me a perfect ham and chutney sandwich. Very fond memories. I managed to track down a copy in Canada and yes the postage cost more than the book but it was worth it. So here it is! All my love to my grandmother. xxx
Photo no.91 - baking time - wearing the wig: banana bread!
The other activity of the afternoon was having a much overdue catch up with Eoin. He's currently working hard in intensive care, so has made the call to stay away until he's finished this rotation. It was great to catch up with him and I can't wait to see him in May for joint birthday celebrations!
Of course, I had the responsibility to deliver a Sunday night dinner...so here it is!
Photo no.92 - Sunday night dinner...Bill Granger chicken curry.
The wig had to be taken off for curry cooking, as I didn't want it to smell like an Indian restaurant...taking it off my hair was looking not its best so I decided it was time for another first...wearing a bandana!
Photo no.93 - bandana time...first time. And the beer is non alcoholic before you ask!
So in summary, how did chemo round 2 go? I thanked my lucky stars that I had avoided the foggy head and anxiety attacks of round 1. So I'll be following the same regime regarding no oral steroids for round 3. It was frustrating that I had been hit with such a bad cough/ cold as otherwise I would have been back to normal much sooner. Still it was a good test to see how Daniel and I would react to an out of hours scenario. Overall, good job D&VW! As always my thanks and love to everyone who played their part during this week, it's through your enduring support that I am making the progress I am. So big love to you all! xxx
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