Week 8: Thursday 12 - Wednesday 18 January 2017
Have just been looking back at previous entries, and really now understand that I need to change my opening lines... 😀. An effective writer I clearly am not.... unless I make "So...." my trademark 'thing' lol.
This week has been really strange for me. For the first time since this whole thing has kicked off, I am properly knackered.
I get that that is probably because having waited so long to get all results from surgery, now that I know, my body probably just screaming for some rest.
Also, the antibiotics have made me sick at points (possibly linked to lack of food at appropriate times), and to be honest, the pain in my arm gets to the point where actually I had instant tears from the shooting pains that just appear every so often.
(As an aside, I discovered that clutching the broad area between my chest and shoulder and crying in pain at lunchtime, does not give a subsequent restful night's sleep to my husband... oops!)
But I have been falling asleep at the drop of a hat. Sleeping almost all overnight, as well as mid morning, afternoon and early evening!!! And then I wake up grumpy, out of sorts, feel like a layabout, and can't get the motivation to do anything...
TV / movies seem rubbish, couldn't be bothered writing, iPad games bored me, can't concentrate to read, and even when I tried to see friends, I was literally yawning after 2hrs and couldn't concentrate. I am definitely not used to being this inactive and restless. At this point, it does not bode well for when I am going through chemo 😔.
On the upside, I am finally getting to have the odd gin from my xmas advent calendar - even if I am a month behind schedule lol.
I started doing some more research - turns out that triple negative breast cancer is actually relatively rare. But the good news is that it's an area of high interest for clinical research and trials - so if I am asked to participate in research, then I think I will. If I can contribute to something that can help other people in the future, then why wouldn't I? Anyway will see if that's an option.
Funnily enough, the only thing that I physically can't bring myself to research is the heart test I mentioned in my last post. Every time I start, I get all queasy about the thought of radiaoactive dye being injected into my heart. But to be fair I am not sure if it just actually goes into a vein... but I am too squeamish to actually find out. How weird is that, given everything else I have looked at???
Anyway I have also joined a few forums relevant to my own type of cancer - have never joined a forum before so was not sure what to expect. It's actually quite good to hear about the ups and downs of other people's experiences... even if some of it does sound bloody scary!
There are lots of support mechanisms out there, and I absolutely have the best friends and family that anybody can wish for... but there are times when I really do feel quite alone and isolated. Even when I am surrounded by people, sometimes I drift off into my own wee world. Don't get me wrong, this is not depression. I think it's just my brain just processing everything - there's been a lot to take in lol.
I think it's because I have done all the research, and I know what the possibilities may be... trying to explain that to others does make me sound really morbid. But I just have a feeling about certain things. On the upside, if anyone reading this is supporting friends or loved ones through their cancer, the Macmillan Cancer website has information and forums to help you too, to deal with the narky cancer patient in your life 😀.
I think the other thing that I am struggling with, is that I normally do everything at 100mph, multitask, survive on very little sleep, and have an active social life. And I miss work. I know that makes me sound like a complete dork, but I am scared in case I forget stuff, get left out of loop, and generally feel redundant. Possibly in all senses of that word!
I returned to work on Monday of this week, and it was great. A little surreal, but still great. I really miss my teams, and the work, and the banter... and I like being able to keep on top of things, and also to get some projects that I can work on from home. This week also about catching up on various meetings in order to make things move forwards - I think the key thing here is that I felt like I am actually being useful.
I know that this return to work is only really temporary whilst I work round all my upcoming multiple appointments, and until I start chemo... but my plan is to attend as much as possible - if nothing else, than to keep a sense of normality in my life as much as possible. (I realise that whilst I am still having post surgery pain I need to take it easy, but I definitely need this to keep me sane!)
In terms of where I am pain wise / other updates this week...
- Boob is still blue. Even after 3 weeks. And constant washing in the shower lol.
- Leakage is lessening, and reduced back to clearish / yellowish fluid.
- Tumour scar on breast actually starting to look almost healed (apart from small hole and leakage lol). I can actually look at it without wincing.
- Nipple (where they injected blue dye) still sore. Feels like this may be bruised for a while 😔.
- Scar from lymph node actually looks almost fully healed - I can now spray deodorant without fear 😀.
- Feeling starting to return to under arm... but actually just in a sore way.
- My upper arm still feels bruised and tingly - having issues unscrewing some jar lids with my left hand as it requires too much effort. 😝
- Bad sign - the free movement I had with my left arm is starting to tighten up, despite me doing daily exercises. Supposedly this is normal, and it's the tendons and nerves in my arm tightening up and 'cording'. Basically after the 6 weeks recovery time I might get shown special massage exercises to help disintegrate the hard knots, but some of the people on the cancer forums talk about hanging off tops of doors and deliberately 'snapping' these chords.... 😂😂😂 (that will not be me as that just sounds way too painful!!!)
- Am having generally less hot flushes... now I am mainly absolutely freezing all the time, so I end up wearing multiple layers both during the day and at night.... (have previously been a cold person, but supposedly this is a key thing for people who have cancer? ) Oh well, either way I think my heating bills may indeed be on the increase.
The best thing though is that my two puppies are great. I always knew that, but they don't like being separated from me just now. It's like they know. They come up and give me a gentle nose/nudge kiss on the cheek, and then they settle down sitting / lying beside me, and we all fall asleep. I am pretty sure I don't snore.... but the two pups do! Either way, they are great to curl up with, and turns out there are proven medical benefits of sleeping beside your dogs 😀. Think it's based on creating a soporific effect and a calming influence. Even if they occasionally make bad smells from their bottoms lol.
I have had time to reflect on some of the other funnies that have been told to me in last few weeks.... like I should give up Diet Coke, as it causes cancer. Well, to be fair, I think that ship has already sailed.... 😜😜😜.
Other things include about the benefits of drinking green tea for the antioxidants (multiple people have recommended)... the only downside there is that I have drank green tea for the last 10 or 12 years and clearly that has not worked for me...
And... yet more people have suggested taking (smoking???) medical grade cannabis to deal with the pain.... well, I won't even go near that one lol. Aside from lack of interest I wouldn't even know where to start lol. (Yip, I know I am a generally law abiding, middle class nerd 😜.)
On a different note entirely, I also have to stop and acknowledge all the cards, best wishes, texts, calls and presents I have had from so many people in the last few weeks - I actually am really touched, and so many from diverse sources that I didn't think that anyone would know from my wider working life, that it really cheered me up.
The funniest one to some extent was a card from elderly great aunt and uncle, wishing me speedy recovery and enclosing some money to treat myself when I am better. It was so lovely, but so unexpected as I don't think I have heard from this aunt for maybe 5-10 years. Maybe goes to show that blood thicker than water when things like this happen.
I also have to confess to being a complete narky cow to my husband. To be honest, I am like that even when I don't have cancer, but I am guessing I am worse now. The only reason I write this, is because first of all it is true, and secondly, I know that there are other fellow cancer patients out there reading this who need to know that it's ok not to pretend to be perfect when you go through this crap.
Don't get me wrong, even before my cancer there were definite times when we irritated each other beyond belief (what marriage honestly doesn't lol), but when he has come out saying he has a cold/ fever and then separately complaining of a sore back, I have been quite harsh and said things like "buck up, I have cancer, so that trumps whatever you have".
I have also told him that he needs his own support networks, as I can't deal with whatever he is going through at the moment. (He claims he does not need anything... I disagree... surprise surprise 🤔.)
And... I have also failed to appreciate the fact that he has gone out to get the food shopping, done the laundry, hoovered, walked the dogs, and made dinners.
(But given I sometimes feel a bit narky, I felt compelled to point out to him that every time he gives me a list of things that he does, it makes me feel like shit and that it kind of sounds like he is a martyr... plus... when I do get sick with the chemo, then I won't physically be able to do a lot of these things for a few days at a time... however, he sees it as giving me a list of things which have been done so that I don't have to worry about doing them myself. Clearly I really am a narky and ungrateful cow 😔.)
But overall... basically, I am just human. And living with me through cancer I think is going to be difficult for both of us. Plus my extended family too. But rather than beat myself up, I will try to be a more civilised person - but when I feel like crap I know I will turn into a moody she-devil, whom I am pretty sure that dreams of being 'under the patio' may become a deep desire for my husband. Especially when the chemo brings on the menopause too - oh that will be like a double dip rollercoaster!
(On that note, if I suddenly stop blogging and disappear, then please send a forensics team to my back garden lol 🕵️)
Anyway... the key thing this week was really my chemo consult. In a nutshell what they confirmed everything I listed previously, but also advised that my overall Stage of cancer was a Stage 2 cancer. This is just a categorisation system which takes all the risk factors into account, and is used to identify the relevant treatment plan.
So... just for the avoidance of doubt, I have "triple negative breast cancer, Stage 2, Grade 3, with basal like cells".
Before anyone googles that - there are a lot of scary things online which says that prognosis can be poor given the high chance of recurrence of cancers going elsewhere in the body, and overall life expectancy. Don't overanalyse everything available online as everybody's experience of cancer is very different 😀. I intend to be around for a very long time yet lol.
Apart from the fact the oncologist looked about 20 years old (OMG I am definitely starting to feel old!), he was very good at explaining why I am being recommended for chemo treatment, and basically it's because the cancer type is quite rare, it's aggressive, and has a relative high chance of recurrence without the chemo.
He also explained that chemo itself has risks including causing potential heart problems in the future, and in itself, may also have a small risk of causing other types of cancer in future years.
He then also asked me if I planned to start a family, and if so, did I want to consider freezing my eggs.... well to be honest that was probably the easiest discussion to have as the simple answer is no... (I love being an auntie, but equally I don't want any delay in actually starting treatment just in case... plus that would mean more potential surgery or needles or whatever...!! Anyway... I have my two pooches lol 🐶🐶)
One of the crappy things I learned is that whilst the chemo may bring on the menopause - which I had dealt with just fine in my head - the oncologist then informed me that that menopause may only be temporary! OMG that means I might have to go through it twice?!?!?! Was so not impressed with that shit. 😝
Other great things I have to look out for include the loss of sensation in my fingers and toes, and also issues with mouth ulcers and loss of taste. (These things may or may not be permanent btw - deep joy lol.)
He then went on to explain that as I would have no immune system going through chemo, it would be really good if I could go to my GP and get both the pneumococcal and the flu vaccinations by the end of the week. He also stressed that during treatment I will be given a list of things to look out for / test... like increase in temperature.
Basically if I have any issues, I have to phone the 24hr line and then probably go straight to the hospital... what I can't do is be a martyr and think I will get better, as he left me under no misapprehension that time is of the essence in these things and that any infections or illness could potentially be life threatening. So that was a bit of a sobering moment. 😨
He also said that he would see me at the halfway mark through the chemo cycles, and then again near the end to assess how things were going...
So that bit was relatively straight forward, and I then asked about the scary heart tracer scan.... turns out I was getting an ECG that day at St Johns (not scary), and the nuclear / radioactive thing was going to be at the Western date tbc. And unlike in my imagination where I was imagining some kind of huge hypodermic needle being shoved into my heart... it is 2 radioactive isotopes which will be injected into my veins in my arms, 15 mins apart, and then my heart will be monitored for up to an hour.
(I am now singing "the red car and the blue car had a race..." lol)
Basically this is to see that my heart valves are working effectively, to see if I have any underlying heart conditions, and that I am strong enough to take the chemo. I was laughing though, as the result will come out as a percentage. Not being funny, but I am quite competitive, so basically, like exams, if it comes out as anything less than a high class pass mark of 70% then I am going to disappointed quite frankly. 😀
So after I finished with the oncologist, I then got shown where the chemo treatment will happen, and I had a session with the breast care specialist.... this is where I got lots of information leaflets, my wig prescription, dates for chemo intro to meet the team, chemo start date, date for the heart tracer test, and also an appointment for the 'going bald' counselling, and a letter to take to my GP's surgery asking for the vaccinations. On top of that I was asked to make sure I followed up with the genetics testing appointment.
The good thing I did find out though, is that because I can't be given hormones or drug therapy, my chemo treatment is relatively straight forward. It will last about an hour, and I should be able to drive myself there and back, and I may only feel slightly queasy that one night 😀😀😀. So that's what I am hoping for.
The drug treatment I am being given is referred to as FEC-T - it's the initials of the drugs which are far too long to write here. Basically I will get 3 x cycles of FEC, and then 3 x cycle of T. They have different side effects but not everybody gets them, so I will see what happens to me lol.
So after a quick duck back to reception where I got my ECG (took longer to put on the electrodes than it did to take my heart reading - and yes, for those cynics out there, I do actually have a heart lol 😜), I then had to drop by my GP surgery to arrange the vaccinations.
Given my experience last week about getting dressings, I was not quite sure how well a request for immediate vaccines would be received. However, there is something about the magic word 'cancer' which gets everybody treating you like a VIP 😀😀😀.
There were actually no appointments this week... but I am getting slotted in, in someone's lunch hour... so I may get stabbed with the vaccines as opposed to gently inserted into my arm, but at least I will get them in a timely fashion lol.
Anyway, then got home to find the genetics letter waiting for me... it was definitely all happening!
So after sitting down with cuppa, and about 20 different bits of paper around me, I had a bit of an "oh fuck" moment. (Apologies for the excessive swearing, but actually on certain occasions there is no other way of expressing it!). Again, this was one of those moments where I just got completely overwhelmed about it all happening so fast, how was I going to fit it all in, and how much can I actually take....
Anyway, practical Linz took over, and I phoned up to make the genetics appointment, the wig appointment, confirmed back to the Orthotics department about what supplier my wig prescription was to be confirmed to, I phoned to cancel my contact lenses as they are going to be useless for the next wee while, and also my insurance company to see if there is any possibility of getting insurance cover to assist with mortgage (they need me to fill in forms so they can assess me!)
I then sat with my wall planner and started plotting everything in - looks bloody scary seeing it all marked up on the calendar.
Anyway... in summary, this is what my life looks like for the next wee while 🤔...
- got to get flu and pneumonia vaccines on Thursday this week plus my dental check;
- a nuclear heart test on Friday;
- chemo centre visit on Monday.
(This is all quite inconvenient for my plans to work for next 10 days but I will work when I can, just to keep some normality in my life as much as possible! 😄😄. Work = sane and normal = I must be a weirdo after all 😱😜😘)
- I have my 'real hair' wig appointment a week on Thursday;
- then the next again week I will have blood tests on the Tuesday;
- then chemo the following day.
The week after that I have a couple of counselling sessions plus genetics testing... so the list just goes on.. and I am going to make a great pin cushion clearly! 😄😄😄
(Remember my big phobia of needles!?!?! 😜)
Anyway... decided to also write a wee article for LinkedIn last night. First article I have ever written, and I don't intend to become a cancer campaigner, however I just had a strong compulsion to do something to highlight what appears to be the taboo subject of cancer in the workplace.... I am also genuinely interested in generating some lively professional debate 😀.
If anyone interested in reading it, is is accessible at link somewhere on this page lol.
I may or may not write more articles, or actually maybe I will start doing more creative writing just for fun. I did actually have a laugh with my teams that maybe I could write 'SPA: The Musical', complete with dancing over the desktop a la the chimney sweeps in Mary Poppins (I am obsessed with Mary Poppins lol) and including some big band numbers... maybe even utilising a barbershop quartet 😀😜😇👌. My brain does indeed work in mysterious ways lol.
Some key things I need to think about in the next week or two include when/if getting my head shaved, and also when to tell my nieces and nephew. But also looking forward to my Irish best friend coming over and going to a Burns' Supper... life goes on....
I am a control freak and bolshy fighter.... all will be grand whatever happens. And I am truly blessed to have so many people who want to help me.
I love my life ❤️ x
https://www.linkedin.com/pulse/when-personal-professional-worlds-collide-lindsey-mcneill
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