Week 20: Thursday 06 - Wednesday 12 April 2017
So a bit of a mixed week this week... after telling everyone my bombshell news last week, I then wrote my blog and actually explained how I had had 2 weeks to process stuff on my own so I genuinely was ok... but realise this came as a shock to everyone else.
But genuinely I know it's all for the best, and I know everyone just worries about me. All the messages of support have been lovely, and work mates are now embarking on massive fundraising drive for the charities I have benefitted from... that's just an amazing thing to do... and this is on top of my 2 fantastic neighbours who are doing 5k run in my name for Cancer Research at end of June!
Been a busy but mainly good week this past week... with hindsight yes I may have done too much lol... Thursday I managed to go and see my friends Lou and Michelle briefly and got to see 2 gorgeous babies followed by my family over for dinner... but no karaoke... 😥. (My chemo tiredness / grumpiness kicked in and actually I could not face singing by me or the kids... bad auntie!!!). Mum and dad took kids away after dinner, and I effectively then slept for 20 hours straight ... so maybe I don't feel so bad lol 😀.
Once awake, Friday night I got to see long term bestie Phil and caught up on a gazillion things whilst stuffing my face with Italian food - salad option was definitely good choice to battle against the few pounds I have put on!
I lasted a couple of hours again before coming home to bed to sleep for a bit... but woke up on Saturday with bundles of energy again 😄😄😄. (Must have been the spinach in that salad lol!)
Saturday my parents came over for impromptu BBQ and arranging the family sweepstake on grand national. Despite dad teaching me how to read racing form week previous, I had absolutely no success, and instead I just got slated for reading racing guide for 30 mins! 😆😆😆
Either way though, it was just lovely to sit out in back garden, wear my shorts and children's factor 50 sunscreen and sun hat, and generally just enjoy peace and quiet 😘.
Sunday was new day, back at sister's new place for BBQ and gardening... made mistake of wearing shorts again but it turned out to be freezing down in Gala, so ended up wearing brother in laws trackies instead...
However, despite my best intentions, the pesky fatigue took over so I basically did my usual and took over one of the beds upstairs whilst everybody else slaved their guts out!! I even slept through sawing, drilling and barking puppies!
Pesky hip pain also returned with vengeance that night... realised at that point it was maybe time to see GP! (I knew it was really bad when I couldn't get off couch, red hot poker feeling and I couldn't put weight on my leg at all.... 😱)
So.... that meant that Monday I ended up practically living at doctors surgery... 3 appointments!!! First was chemo bloods - in and out in 5 mins. 😀
Then an initial phone consultation with GP, who asked me to return asap for physical exam of hip.... ("given my history...!")
I had only just reached Morrisons to get the weekly shop... so turned back and got all kinds of exam and pressure points tested instead...
Good news is that it is def not bone pain so no fear of cancer spread... and she is going to refer me to physio as well as prescribing different anti inflammatories and omeprezole to protect my stomach... probably bursitis - inflammation of fluid sack around hip joint.
She also checked how I was doing generally, commiserated with all the side effects and also congratulated me on decision to have the future surgery... she was quite interested in what I did for a living, but I am not naive to think this is general chit chat... I know this is part of the assessment of my cognitive ability and ability to make life changing decisions... which is good, as it does show that I am of firm mind and am doing what's best for me 😄😄😄.
Third appointment of the day was physio... originally recommended by chemo unit without me knowing... last chemo I couldn't straighten my arm due to cording... basically my veins and nerves going into flight mode lol. Anyway, my lovely GP had managed to let him know about my hip, so we discussed that too ... for arm pain I have gentle pressure stretch... but for my hip, turns out it might be either my back or my hip causing the pain!
So initially stretches for my back... tightened muscles possibly caused by sitting too long when I am tired in a slightly slouched position with my knees curled up... who knew???
He did point out that this is only affecting me as I have no resilience at the moment, and as I am more sedentary my muscles are not getting enough correct movements ...
Anyway... feel a bit like a hypochondriac as this is clearly self induced... but he thinks it will be simple fixes 😄😄😄. And if it's not my back, he will change to hip exercises when I see him in a fortnight.
Of course, small downside with chemo brain is that by time I got home I had forgotten the exercises... but remembered them through overnight insomnia lol.😄
Tuesday was another trip to oncology at St. John's hospital.
Basically it appears that following my case conference, my surgical team were split on benefits of changing planned chemo. So it then became my choice! (Scary biscuits as what do I know about cancer drugs???)
Anyway, I signed up for extra chemo drug which is experimental in my condition, alongside a slightly lesser dose of the harsh doxataxel. Both have side effects of lowering white blood cell count, but the tummy jag I have to do on Thursday should counteract all that.
Other side effects... much more fatigue, potential loss of feeling in fingers and toes (which may or may not become permanent), and greater joint and bone pain. Oh and possibly severe allergic reaction...
But on the upside... NO VOMITING! 😄😄😄😄😄
Mum asked some really good questions about success rates and how long new drug being proposed had been around... it's been used successfully in other cancers for 30 years, and for in some cases of my cancer for about 3 years.... basically it's been proven to work on reducing tumour sizes prior to surgery so there is a belief that it makes chemo more effective... so although I have had my tumour removed, given my mutant status, there is a belief and 'some' empirical evidence that it may be added belt and braces approach for me. (Later research by me also explained it is good for targeting ovarian cancer - which links to my genetic mutation... real belt and braces approach!)
He then also asked about my hip pain (as I had spoken to breast cancer nurse week previous, who referred me to GP). He did say that as long as pain got better in next few weeks then that was fine, but I was to let them know if it continued or got worse... I was offered a bone scan to put my mind at ease if I wanted one, but to be honest if it's not bone pain I am not going to worry before I give physio a try out!
He then asked me about clinical trials to which I said I would be keen... and then breast nurse asked if I wanted to delay my appointment with the breast surgeon planned for following week ... to which I said no.
I gently pointed out that given I assess risks and take hard decisions all my life at work, I would rather have that initial chat, see what's possible and get things over and done with as soon as possible. I only want one period of sickness and get back to work as soon as possible and re-start all areas of my life.
(Again this is all assessing my rationale and behaviour... breast nurse was lovely... but also taking copious notes lol.)
So that was all fine.... oh and I finally remembered to ask what type of cancer I have. So I already knew it was grade 3 (aggressive), stage 2 and triple negative tumour... but I didn't actually know where in breast it was actually located... So I just asked.
For info, I had 'Invasive ductal carcinoma (IDC)', also known as infiltrating ductal carcinoma, which is cancer that began growing in the milk duct and has invaded the fatty tissue of the breast outside of the duct... so there you have it 😄.
On my way out, had to stop in for a new ECG reading... they need to know how the old ticking heart standing up to chemo! (It's still there and working thankfully 😜😉.)
The clinician there was asking how I was doing and applauded me on taking decision to have risk reducing surgery... she works a lot with oncology team and knows people who have done same thing as I am doing with great success.
So... good that everyone is interested and has positive opinion... and agrees with me lol 😄. (Don't get me wrong... I am still bricking it, thinking about going under knife... but it's still a no brainer!)
Mum and I then popped for quick tea and scone for energy boost before mum dropped me off and I headed out for lovely lunch with some special peeps, who always have the ability to make me laugh... even if I do get told I look good but tired... 😜. (Knew I should have worn that special make up lol!)
Only downside on Tuesday was coming back to house to find puppy poo literally everywhere in lounge and hall... not sure what had happened but mum and I had a lot of cleaning up to do... just as well I love my pooches, but one of them definitely had upset tummy 🤢. Maybe it's a sympathy thing for me lol.
Tuesday evening got to have an amazing night with my sister.. out for Italian (lots of small bundles of food today... but have to build up stamina prior to chemo... honest!)... although technically 3 courses tonight... what an oinker I am lol!!!
Had lots of serious and funny chat before coming back to chill with gin (Angie) and flavoured water (me) lol.
Wednesday I was anxious... proven by having about max of 3hrs sleep overnight. Although with hindsight I had forgotten I had taken evening steroids in advance of chemo... no wonder I was as bright as a button!!!
New chemo, I really don't like going into the unexpected health wise... which is a bit ridiculous given that in all the rest of my life I rush in where angels fear to tread FFS!
Need to remember to paint nails in a dark colour varnish to stop chemo oxidising through nail beds, resulting in potential loss of nails 😱😱😱. (My sister was quite disgusted at thought of touching my feet... but genuinely I hardly have pigs trotters... on a good day I even think my feet could be deemed quite attractive 😄😄😄)
Anyway... that brings us on to today and chemo day... we started off by going to McDonalds for a calorie laden breakfast as I am supposed to eat before chemo... then into the hospital in plenty time to get car parking space.
Chemo session started with me cooking my arm in hot water to open up my veins and getting a vein flush... it then took the pharmacy almost 2hrs to deliver my actual drugs!!! My big sis was not impressed at the inefficiency...
However we did play cards, read side effects of new drug and she also did my pedicure and manicure (delicious dark purple colour!)... which was really funny as the look on her face dealing with my trotter feet was just too hilarious... all the other patients and their companions on the ward were watching with interest, but all companions were busy shaking their heads and said they would not be doing that for their friends / significant others lol 😄😄😄.
The chemo went surprisingly well... after the nurse hovering about to make sure I wasn't going to have any nasty reactions, I then had a wee snooze because the room was really really overwhelmingly hot... and my arm was wrapped up in a heat pad too!!! It was only time I felt partially queasy and it wasn't even chemo related 🤔.
The other thing about chemo today is that it was full of alcohol... so no driving for me today lol...
Before I left, the nurse came up to ask me to get my bloods checked at the GP's weekly from now on... the 2 chemo drugs combined really quite likely to deplete my white blood cell count, leaving me at greater risk of sepsis... however the oncologist had actually removed my tummy jag from the prescription! But she wasn't happy with that either so I have to pop in to the chemo unit tomorrow for jag just to be on safe side given my hospitalisation for sepsis 8 weeks ago... 😱... (upside is I don't have to do it myself with one eye closed and staring squint eyes at my tummy fat lol 😉.)
Came home and more or less went straight to bed... lack of sleep last night and the come down from adrenaline hit... so had a few hours before getting up and having dinner and watching a kids movie to chill out. Just about to head back to bed despite the additional insomnia-inducing steroids I have had to take.
Hope my runaway and overthinking brain doesn't go into overdrive tonight... but equally I have come across a few things and a few people who seem to be bull shitting me... so currently trying not to overreact and it may just be time for me to reassess what I am going to believe and who I remain in contact with... I may have cancer and facing multiple changes in my life... but I am still not a mug to be taken for a ride! 😉
(Rod of steel does occasionally come out lol!!!)
So this next week will be mainly dealing with any fatigue issues (sleeping!) and then the big surgery consult next Wednesday...
Hopefully all goes smoothly and I can see more of my sister's family prior to them going back to Cornwall on Tuesday... oh and must remember to do physio exercises... and more shaking my hips to Shakira... 😜
Till next week... have a good one everybody 😄😄😄 x
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