Monday 2nd June
Song of the day (LH): Nobody to love - Sigma
Song of the day (VW): Kris Kross - Jump
Happy birthday Sammy!
After a night of broken sleep, I woke up feeling fine but a bit tired. Then the adrenalin kicked. Round 5, lets go, go, go!
Something I that I have been thinking about, I wonder if this will ever go, is the long term what if. Will this return, in what guise etc. Of course the hope and the wish is that it never returns but at times it can feel like opening a pandora's box. Is it genetic or is just random? Who knows.....
Anyway, the reason for the ponderings was that due to problems on the M4 but chemo team were running late. Poor them just slowly inching down the M4, it's always so frustrating. In reality although we aim to get there at 10, there's not real rush as it always happens on Regina time!
Arriving into oncology it was a quiet day, with only 3 patients. I've still decided that I want to stay in a room, even though the aim in some ways was to get into the main chemo room. I think because I have my team with me, the room still feels the best option..particularly as we laugh a lot so may disturb other patients. Who knows, the room is where it's at.
Today, it was a new line up for the chemo team. Team member #1 Kim, team member #2 - come on down Eoin Harty! It's great having this time to catch up. The new line up worked really well. I must say for each session it's been fantastic being around such wonderful people. Regina was on top form today and we got some info out of her for once... For the last chemo session, we're going to have an afternoon tea style celebration. Regina even offered to dress up...can't wait to see her outfit.
Eoin was on lunch run today, so found the German bakery and came back with some awesome sandwiches and a good cake selection for later! Plus a much wanted cup of tea!
Photo no.253 - time for tea
Photo no.254 - a new chemo team - Little Miss S had fun!
Thankfully, treatment went well and there were no port issues and no allergic reactions. Phew. The only waiting today was for the steroids to come up from pharmacy for me to take them home. In any case after a big hug from Regina, we were back home by 3.30 and tucking into our bakery treatments. Let me tell you a hazelnut florentine is very, very welcome in my life! Kaffee und kuchen! German teatime basically. Yum.
While Eoin revised (apparently these are the last exams!), Kim's nail salon opened for business with the French open on in the background. Nice!
DW returned from work and the chemo team made tracks back to the big city. It must be hard for DW while I'm on a treatment day not knowing exactly what's going on. Generally, company aside, it's fairly boring but I guess the what if factor must be there and him being on standby ready to bomb down the M4. Lets hope this is never required.
Photo no.255 - dinner courtesy of Charlie Bigham....Beef Cannelloni for a change!
A little bit pale VW, but aside from that potentially the best day 1 so far. Lets hope the rest of the week continues this way....
Tuesday 3rd June
Song of the day (VW): Play that funky music - Wild Cherry
Song of the day (LH): A little time - The Beautiful South
During week 1, I always have a fear of going to sleep. Once asleep I'm fine but there is something there. I don't quite know why. Potentially I feel more vulnerable at night time. Thankfully I achieved around 6 hours of continuous sleep. Not bad.
This week, DW stayed at home with me in the mornings and my parents took the afternoon shifts. It was great having DW at home in the morning, as it meant no alarm going off at 7am, and we could have a relaxing morning/ breakfasts together. It worked well. Plus it meant we got some time together.
Argh...got to mention this now...since being on the new chemo drug, I've been having my nails painted. Today they are too long, clicking on the keys as I type. It makes me almost feel ill...good job I can get them done tonight so normal typing can resume!!!
Back to the plot....my mum and a neighbour arrived at the same time to take over. My neighbour complete with a very purple looking liquid....beetroot and other juices....thank goodness it tasted a lot better than it looked.
Aside from a bit of muscle ache, this could be from Sunday's attempted run, I was feeling pretty good. Time to get jabbed in the stomach!
We arrived into oncology and saw the man who stabbed me last time....oh no, no way was he coming near me with a needle. I decided to seek out Regina to find the hands of an angel. She was in her office and thankfully came out immediately to do my jab! I think she really likes my mum as we managed to get more info out of her...it turns out that she's a ginger wine drinker (the only other person I know of is my mother!) and that she's requesting a walnut cake (no icing) for the end of chemo party. Walnut cake, no icing that's hard. We'll take on the challenge...that's right I need to hook in the best baker, Debbie G! We even got to see Regina in proud mummy mode when she showed us he daughter's graduation photo. A very proud mummy of 3! I must have done well, as Regina even gave me some Ghanaian chocolate....well and that it was good to boost my red blood cells as they were looking a bit low.
Photo no.256 - a new chocolate experience - it was good!
Dinner today was provided by my mummy, Spicy bacon and beans, as you've seen before. It's a good comfort dinner and great that it just needs heating.
Overall, a good day 2. My red face from the morning had gone. I felt restless but tired, not the best combo but something I could cope with. A bit of tingling/ pins and needles but that was to be expected. So not too bad. Good work VW!
Wednesday 4th June
Song of the day (LH): A change is gonna come - Sam Cooke
Song of the day (VW): You can't always get what you want - The Rolling Stones
A bit of a restless night's sleep. Still I had rested, so that was the main thing. I left DW sleeping and headed off for a bath. I've got some arnica oil, which smells great but also helps with any inflammation. A good way to start the day.
I had noticed that my chest had become a bit tight, I was short of breath when climbing the stairs etc and my heart was pounding. Take it easy VW, take it easy.
After a relaxing morning with DW, I had an aim of heading up to John Lewis with my Mum to buy my birthday present. Don't laugh when I say what it is but it will make certain recipes more appealing to make now...a spice grinder. I also needed to take a dress back to Asda...that experience was terrible and I will never buy anything from their website again. The delivery was poor considering I had paid for a specific slot and then when I tried to take it back to store, customers services sent me elsewhere, after having queued for 10 minutes and then when I was at the right desk apparently the returns system was down. I would have been pretty annoyed at the best of times, but don't mess with a girl on day 3 of a chemo cycle!!! Breathe........
So into JL we went and oh yep all of the items we went in for are no longer available in store. Yes, yes, I know I can get it online but sometimes, just sometimes an in store purchase is what you want. Lovely Jo Malone cheered me up and I smelt their fragrance...tempting...very tempting...Instead we went and got some cake and tea. My choice, rather unusual my delicious.
Photo no.257 - prune and date cake! Mmn!
Post cake, of course I went back to Jo Malone and purchase said new scent. I'm still not 100% sure about it, so will need a revisit to check it out. On our way out, we bumped into one of my oldest friends, the ever delightful Vicki (Spill) Clark with little Rosie. It was great to see her even though I wasn't feeling quite with and needed to get to my sofa asap. We will have that proper catch up!
On the way home, Jane called responding to an email I had sent. I wanted and needed to know surgery dates. Partly, I wanted to get my head around this and also I wanted to book a holiday as DW needs a break. Jane recommended staying in this country for immunity reasons. I didn't want this to be the case but hey, it's not worth risking the delay to surgery. She also booked in an appointment with Miss Predolac for the following Friday to discuss surgery. Phew. Things were starting to happen and I had a holiday to plan. I knew DW would be disappointed about not going to Lisbon, like myself, but equally we knew it was the right call.
Arriving home, later than planned, I had 5 mins before Debbie popped in for a quick cuppa on her way back home from Odney. It was lovely to see her and it meant my mum could finally meet this amazing lady! Thankfully she came empty handed, so instead I plied her with biscuits!!!
After dinner, I finally got the sofa time I had been craving and I was feeling ok. Sometimes keeping going actually can be a better plan...oh my goodness I can hear the sighs but you know what sometimes I think it is! The only concern for the day was lack of pooping. Sorry to mention this but constipation has to be dealt with quickly. Senna had been taken but no results until around 23.00 when massive cramps kicked in and then a serious of small pooplets took place. This was horrible, especially as all I wanted to do was sleep. It continued for an hour or so, there was a small amount of blood seen, which really freaked me out. Throughout all of this DW kept calm, probably as he just wanted to sleep. After the cramps went, I still felt scared from seeing the small amount of blood. The logic behind it made sense but I was scared as I've never had blood in this area before. It got to 1am and I decided to call the out of hours service. This provided the reassurance I needed and they recommended some more senna.The cramps and toilet visits continued until around 2am, good that DW wasn't getting up at normal time! Thankfully then I slept. Please let this be the scariest thing of this week 1. Thank you.....
Thursday 5th June
Song of the day (LH): Only love can hurt like this - Paloma Faith
Song of the day (VW): Just be - Paloma Faith
It wasn't a great night's sleep. The sleep scared factor must have crept in and I scored around 4 hours sleep. Still better than nothing. The lack of poop turned the other way, which was a relief as better out than in...as Shrek says!
I wasn't feeling great today it has to be said. Lack of sleep, stomach being turned upside down, heart pounding, sore throat, swollen glands....fun, fun, fun! All I wanted to do was sit on the sofa. I know when I'm feeling rundown as my usual levels of enthusiasm dip and my willingness to do stuff diminishes...today was such a day. I felt sorry for my Dad as I had mentioned about going to Stubbings the day before with my mum but I just didn't want to venture out of the confines of my dwelling today. It's hard for those looking after me as it's hard to predict during a week 1 how I'll feel. Today was low. No I don't want to go to Stubbings, I just want to sit here on my own. Instead my dad had the delight of pressure washing my decking...an amazing job done after a rocky start of me not providing the right tools!
I decided around lunchtime that a visit to the GP wouldn't be a bad move. Thankfully an appointment was available, so later that afternoon we headed down to Rosemead. It's always hit and miss how long you're going to wait....today even the receptionist gave a 30 minute warning. Who was this new doctor? 40 minutes later I met him. He was a lovely chap but I think he needed new specs as he was having trouble seeing the computer screen, so my appointment took 40 mins. I can't complain he was extremely thorough and went through my list of complaints methodically and explained everything. I came out slightly worried though as he had requested that I go to hospital first thing the next day for a series of blood tests/ ECG etc. I know it was precautionary more than anything else but still.
A trip to Boots to pick up the various prescription bit and bobs and a short Waitrose visit for dinner items. That was about all I could manage.
After a dish of Luca's pasta, despite being tired I thought it wouldn't be a bad shout to go for a short walk, just to get my muscles vaguely moving. The aching feeling had started but nowhere near as bad as last time thanks to taking anti-inflammatories from day 1. DW agreed so we headed to Bray and had a short stroll. It did the trick, I was feeling more relaxed than I had all day. Some TV time and it was time for bed. Please let tomorrow be better.
Friday 6th June
Song of the day: I'm coming out - Diana Ross
70th anniversary of the D-Day landings. Lest we forget. It was truly humbling watching the footage of the remembrance services. We are the lucky generation.
Wow, what a difference a bit of sleep makes. It was the best sleep I had had all week. I knew that I needed to head into hospital but I was thankful for a good night's rest. My mum took me over to the hospital for the morning of tests. I bumped into a Jane and she asked if I was ok, ok I was but just needed a few things to be checked out. Regina time! I was concerned Regina was going to say come back on Monday for the blood tests as this was the date we had originally agreed. Thankfully this wasn't the case and I had a morning in oncology with my mum and Regina. There's a feeling of security when you're in hospital, perhaps this is what made my heart stop pounding as typically when the ECG was being done my heart was feeling normal. Grr! My leg was also ultra sounded for DVT, which meant I saw Dr Moreland. She's absolutely fantastic and walked me through the ultra sound so that I could see that the veins looked absolutely normal. Phew. The good news was that my blood tests came back and they were ok. Haemoglobin levels were slightly low, white cells were fine thanks to the immunity jab on Tuesday but my platelets were really low...so Regina said no cuts allowed! You know as soon as someone says something like this you will cut yourself when cooking/ fall over...thankfully so far I haven't but I have minimised my flip flop wearing!
The best part of this visit was Regina showing me her favourite gospel singer on you tube...at one point the lyrics mention something about being victorious...at this point Regina pointed at me. I thought I was going to melt into a pool of tears. I was so touched. She is one special lady. I will never, ever forget the time and care she has given me and my loved ones.
A few hours later we left PMH, feeling reassured things were ok we went on our way.
On the way back we went to the butcher as I wanted to get some chicken for the BBQ planned for the next day. For people local to the Maidnhead area, I would really recommend the butcher at Moss End Garden Village...I know I've mentioned this before but it really is worth a trip. I also managed to finally get rid of the Asda parcel, via a collect plus location. Success!
I was then ordered to relax. It was such a nice day, we put my lounger in the shade and hoped that a snooze was on the cards but sadly we had got back at the same time as school finishing so it was trampoline time for the boys next door....I headed in. They were just playing but it wasn't overly relaxing. I know you all think I'm a grumble weed but actually kids playing is pretty loud...not sure if I made an equivalent noise it would be welcomed! Grumpy old lady rant over.
I enjoyed a Great British menu catch up and then around 18.00 felt my heart racing. Temperature check VW. 37.8 degrees...uh oh! This is not good. I came downstairs and sat on the sofa in the study as it was much cooler than upstairs. I kept doing temperature checks and it was fluctuating around 37.6-37.8. Please come down, please. I called DW, he was on his way home. Calmly he mentioned about taking paracetamol....yes of course. Good idea. This slowly seemed to have the right effect, as gradually my temperature came down. DW arrived home and we decided to order a curry. It's strange even at moments of medical stress you end up doing the most banal things but we needed to eat. After dinner my temperature had thankfully come down to 36.9. Phew. Again we took a gentle walk. It seems to help. Fingers crossed for no hospital visits this evening. It's scary how things can flip so quickly. I snoozed on the sofa under the watchful eye of DW and then headed to bed. Another day done, another day closer to recovery.
Saturday 7th June
Song of the day (LH): Sex bomb - Tom Jones
Song of the day (VW): I see you baby - Groove Armada
Another tired.com day. The breathlessness and heart pounding were the scary bits. Needless to say life continued so I was determined to get to Putney for the scheduled wig wash. However, this was not to be. It was the first weekend of the Hammersmith flyover closure so it took us an hour to get to Chiswick and then we were stuck in gridlocked traffic. Every which way we turned there was a queue. I called Chez Stephan to explain that we would not be getting there anytime soon, so I rearranged and we decided to stay in Chiswick for lunch rather than turning around and heading home. Daniel had his first Bill's experience and we had a nice walk around Chiswick. An afternoon not wasted.
Photo no.258 - lavender love
Arriving home it was time to assemble the skewers as my family were coming over for a birthday BBQ. This time it was for me! I decided assembling the many veggie skewers it was a sit down job...I think it still took 40 mins to assemble them all but they turned out to be the most popular item!
Just before everyone arrived my temperature decided to spike again. This time only 37.6 but still on the warmer side of 37.5 that I didn't want to be at. Thankfully I managed to control it with paracetamol again but it put a bit of a spoiler for me on the evening and DW as he had to be put on potential driving duty. Normally, I say normally, as if this is normal. But normally, by day 6 I'm pretty good but this round it was not to be. Still it was a fun evening and great that Kim came along as well!
For dessert I found a childhood favourite...it would be better if it had been Ice Magic but this stuff does the same job and tastes good!
Photo no.259 - chocolate sauce that freezes on ice cream....and the bottom of your bowl for extra chocolatey-ness!
I don't like the temperature spiking nature of the last two days, so please, please let this be the end for this round. I don't want to go into hospital. Over the course of my diagnosis and treatment, people have been protecting me from their worries/ concerns. Sometimes, just occasionally conversations are had when people don't think I'm listening, even if I'm not it can just be the look of worry on someone's face or them glancing over at me mid conversation. I know you all care and I'm sorry for the worry that this is causing. I also feel trepidation with DW of him seeing me bare headed. Some days I don't mind too much but on the whole I feel scared of what he's actually thinking. Probably best not to know really.
Fingers crossed tomorrow will be a better day.
Sunday 8th June
Song of the day (LH): Summertime - DJ Jazzy Jeff & the Fresh Prince
Song of the day (VW): Circle in the sand - Belinda Carlisle
Foolishly I had booked a manicure for this morning. I really did not feel like going but do you know what afterwards I actually felt much better. It just goes to show you that embracing doing things can have a positive effect! Who knew! ; )
I was still feeling breathless with my heart pounding. Time for this to stop please. We had a relaxing breakfast together. After I got back from food shopping, yep normal stuff still happens, we went for a short walk. This in itself was a bit of a challenge as I just felt rubbish. Bluergh....I want to feel 'normal'!
DW had his own plans for the afternoon, so I relished in the fact that I was going to have a few hours to myself. Lounger time in the shade...complete with a snooze would be nice!
Photo no.260 - lounger time!
Photo no.261 - the view from my chair!
You know what's coming....I just couldn't relax or settle into a snooze. I texted Rachel to see if she was around. She was...so a walk into Maidenhead was on the cards. Rock n roll! Frappucino's here we come. Maddie came with us and had excellent coffee shop etiquette! I felt a whole heap more relaxed when we got back. Regan therapy complete it was time to head back to the lounger. I felt much better and conceded to the fact that perhaps sleep wasn't on the cards for the that afternoon, so just read some magazines and relaxed. Sometime, just resting is needed and actually with that mindset I find that the body then relaxed and you never know some shut eye may happen.....
Returning back from a hen do up north, I had a great catch up with Ces, who also provided some reassurance. Combined with my blood results the breathlessness and heart pounding were signs of anaemia. Just knowing this made me feel a whole heap better and feel less worried. Iron is the name of the game. Good job, I planned to eat a steak the following night. I'm so grateful to have Ces supporting me through this, chats like this are invaluable. So a big thank you Mrs Hamilton!!!
The real pressure as you can imagine was cooking the Sunday dinner. We had a visitor today as well as Lars was over from Sweden. To make life easier, an Asian supper was on the agenda.
Photo no.262 - Stir-fried prawns with chilli & tomato, exotic mushroom stir-fry with brown Jasmine rice.
You can tell I wasn't feeling on top form, as I stuck to San Pellegrino rather than sipping the white wine that was on offer. I think your body tells you when to and when not to...this was a when not to evening. I'm not sure the prawn stir-fry will be repeated but it's always good to try something new!
So a tough week. One that I was glad to be over. At least it meant I was nearer to the end goal. Please let next week be good! As ever big thanks and love to everyone who has helped, supported me and DW through the week. DW thanks for looking after me, I know it's been a tricky one. I love you.xxx
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