Weeks 68-80: Thursday 08 March - Wednesday 06 June 2018 (kind of lol)
Wow! A whole 13 weeks (a quarter of a year!!!) have passed since I did my last cancer blog post... so much has happened!
I apologise... this may be a very long read. Maybe take it to the bathroom if you need to pass some time lol 🤔🤔🤔.
I actually write this from holiday in Sicily. This is not to gloat, but actually it’s so hot here now, that it is good to find a shady spot or an air conditioned room to get some peace, coolness and time to reflect.
It’s funny, I never used to do much reflection. Overthinking and overanalysing everything yes, but reflection on personal life no. But maybe having cancer has proven to be a good thing for me in that regard 😉. (Always seeing the positives in life lol.)
WORK
So... where to start... well I started my phased return to work on Tuesday 13 March after having my back to work interview with my new boss the week previous. The day before starting back proper, I visited my sister, and driving down I had a momentary panic of what I was going to wear to work. I had recycled most of my previous workwear on the grounds of changed body shape, and although I had kept a few dresses, I felt out of place, out of kilter and out of shape.
My sister was about to go and see one of her dog walking clients, so offered to drop me at Next so I could have a look. Well, I am proud to say that 25 minutes later I was standing outside waiting to be picked up with a new suit, 2 tops and a pair of shoes in my bag - and a bottle of wine from Marks and Spencers - hooray! I am not one for shopping at the best of times, but my new shape meant I could actually fit into normal Next-size clothing - and I am not one for mucking about 😜😜😜.
Over dinner that evening, I confessed to my sis that I still didn’t like my hair - it was thin, lifeless, dull and mousy brown - so I had already bought new navy and black skull caps to go with my work outfits. My sister pointed out that she thought I was using them as a security blanket, and that waiting till my hair grew fully back to stop wearing them would be yet another transformation I would have to go through, with people exclaiming over the change. And she was right. (Sis - please note - I do acknowledge when you are right lol!)
I suppose the skull caps were (and still can be) a security blanket when I am feeling vulnerable. I don’t like people staring at my thin / balding hair, and an alien-like high forehead. I feel really ugly and naked - which is really perverse, as I actually really liked it when I had a shaved head! Maybe it’s because the hair has not grown in evenly and I have to brush it forward to hide the bald bits. I also have to get over myself and realise that no one is really ever actually looking at me 🤪.
Anyway... my lovely big sis gave me a solution to that too... “let’s both dye our hair this evening”. So we did. It was actually a purple dye, but given I literally had virgin baby hair, I only left it on for about 10 mins before washing it off. It came out looking great, and a little bit thicker (my scalp was also tinged darker so it gave a false impression of lots of hair lol). All it actually did was give a purple sheen to my hair but it was my first foray into hair dying post-cancer, so I was quite pleased with the results.
The actual best part of the whole experience was when I was dying my sister’s hair for her and confessed I had never dyed anyone’s hair before - she looked at me as if I had committed high treason, or that she was contemplating some kind of murderous thought - I did laugh and say that maybe this would be long awaited vengeance from when she cut my hair with blunt scissors when we were kids... 😂😂😂.
Going into work the next day was really good actually. Occupational Health had been really helpful in guiding my return. Normally my organisation assumes that people are fit to return when they can come back 50% of duties and hours. My programme was very much tailored in relation to getting me into a routine to try and manage the fatigue and ongoing pain management. They even offered to make sure I got a parking space - but I declined that on the basis that if I had to park offsite, the 10 min walk would be good for me 😀. I had annual leave to use up before I returned as well, so as Occupational Health explained, this should be time for me to actually enjoy time off like normal people do (I paraphrase that BTW - they used better language lol!). I also still have 10 days annual leave to carry forward to next holiday year - I get to use that for my next operation I think!)
Given that I had actually been off work for 15 months in total, I had an overall 10 week phased return, with the following pattern (for anyone who is facing similar after their treatment):
- Weeks 1 & 2: 4hrs/day for two days per week;
- Weeks 3 & 4: 4hrs/day for three days per week;
- Weeks 5 & 6: 8hrs/day for two days per week;
- Weeks 7 & 8: 8hrs/day for three days per week;
- Weeks 9 & 10: 8hrs/day for four days per week;
- Week 11: Back to full time.
Of course, I did try and stick to the plan. My work family were very good at chasing me out of the door when my allotted time was up. The first month really was all about getting up to speed with things, but I had a growing sense of frustration that 4hrs a day really wasn’t enough time to get anything done! It’s also hard to return to a job when the organisation has changed significantly, your job has been done by someone else, and the workload has never really stopped - and in some cases got even more frenetic. And in truth, I was also battling fatigue, pain and proper brain fog. 😕
The first couple of weeks I came home and slept. And sleep on the days off in between too. I was trying to continue going to the gym as all the research says that maintaining fitness evens out the peaks and trough of fatigue. But by god was it hard.
Being at work required so much more concentration than I had anticipated, and I was trying so hard to be like the Linz I was before. But everything felt a bit like my brain was wading through treacle. Actual processing of information took a whole lot longer than normal - my brain is normally like a spider cobweb full of about 20 different scenarios and consequences for every single thing I do. Those first few weeks back at work, I was lucky if I could identify polar opposites of a scenario. 😟😨😔.
I took a lot of notes, and thankfully was not really a key decision maker in the organisation. I listened a lot, and contributed where I could, based on my historical knowledge. But I hated it. To the point where I genuinely thought there would be no point in me continuing in the job .
I am not used to not being a leader, or a team player, or a strategic thinker, or a do-er. As one of my close colleague’s describes me, ‘Linz 3-brains’ was literally running on empty.
I have a very strong work ethic, and my core values are all about public sector and not wasting money. So I contemplated jacking it all in on the basis that there was no way I deserved my salary for being ineffective. However, by about week 6 I then had another discussion with my line manager and we agreed what I could move away from re-inducting myself in the organisation and resume line management duties for my teams. It was a great turning point for me, as my energy levels were better, my bone and joint pain was under more control and my concentration was better too.
I was quite flattered during this time, as I had had a couple of approaches from big organisations asking me to apply for some quite big jobs around the UK. And that’s even when I did speak to them and advised them that I was just returning to work post-cancer. I think the thing to take from that, is that having cancer does not define you, nor ruin your ability to continue with your career. It also shows that there are employers out there who really do seek to make sure there are no barriers to employment.
DISABILITY OR NOT?
This does take me down an interesting road though nowadays. Supposedly having had cancer, it is technically deemed a long term illness in terms of equalities legislation. So application forms now ask 2 sets of questions... ‘do you consider yourself disabled for the purposes of using the Guaranteed Interview Scheme’, and ‘do you consider yourself disabled for the purposes of equalities monitoring’?
To me - I don’t feel disabled in any way - but what should I tick?
On an employment basis - how do employers really feel when they see the two tick applications? Are they truly assessed fairly or are they seen as a nuisance against a bundle of potentially high flying candidates? (Based on the fact that if you meet the essential criteria, you should be offered an interview.)
But then again, if you don’t inform them, what happens if you have long term impacts at work? For me personally, I need to get bone infusions every 6 months for the next 18 months now. I am generally ok, but will need the day off. I also have more surgery to face. Do I declare that and hope that any new employer is sympathetic? Or hope for the best and hope nothing happens very soon?
The other aspect is if you don’t mark down that you are technically classed as disabled, do you skew the equalities monitoring figures?
Anyway, I digress. As you can see, my mind is back to functioning on many levels lol.
Suffice to say, I am now fully immersed in work, not quite restricting myself to the 35hr a week - but I love it. I love the problem solving, I love the workload balancing, I love all the interactions, I love seeing the bigger picture and knitting everything together, and last but definitely not least, I love being surrounded by people and having a purpose. Work in the wider sense may not be perfect, but I get a positive vibe about the future.❤️😀❤️.
BECOMING A MODEL
Aside from work, I have been busy in my personal life too. I was persuaded to apply to be a model for Breast Cancer Care Scotland Show in October this year, and attended the information day recently at the Daily Record / Sunday Mail offices in Glasgow..
I hadn’t realised that so many people apply to be a model - 2 of the gorgeous ladies I met at a BCC course last March after my second round of chemo had been models last year, and told me it was such a great thing to do after the end of treatment and it was a chance to boost self confidence and raise funds too!
Anyway, there are going to be 24 models for The Show in October - there are 2 sessions where we get to strut our stuff - an afternoon and an evening show. We are being fashioned by a wonderful stylist called Ian Tod, and the outfits we will be wearing will be based around a number of themes. I think we get to wear 3 or 4 outfits, and I can’t wait to see how the themes develop. The photos from previous years are fantastic!
Ian was lovely when speaking to us and getting our measurements, as he was asking us to describe how we each wanted to feel on the catwalk. Answers ranged from confident, to sexy, to full of fun. Whatever happens, it promises to be a whole load of fun and drama 🤣😇😜.
The rest of the models are all wonderful ladies who range in age from approx 26 - 80, and their stories of diagnosis and treatment are both harrowing and heart lifting. There are people who have fully recovered / no evidence of disease, some going through active treatment, and others who have stage IV and are incurable. It was such a moving set of introductions, that we all genuinely have a bond together - ‘people like us’.
Part of the day was also spent having a photo shoot done by the award winning AMAC media. First off, we had numerous beauty artists doing our hair and makeup (my hair didn’t take long lol), and then Alastair had us posing in our pink BCC t-shirt, and then our ‘going out on a Saturday night’ clothes. It was then over to Jenny the journalist, to interview us for our wee profile bio which was going into the Sunday papers. (Link below!)
Going forwards, we are all being encouraged to contact our local papers for more coverage as time gets nearer to the event - West Lothian look out lol...
I could never underestimate the amount of time and effort which goes into organising this event - Dawn, Clare and volunteer Kim put monumental effort into this flagship fundraising event - it literally raises thousands for BCC - a charity which I have benefitted greatly from in relation to Younger Women Together courses, research and information material, and the general helpline when I had various ailments linked to chemo.
The next stage now is to have a couple of lunches with the models to get to know each other more, and then meet up the day before the Show to try on outfits, learn how to walk on a catwalk, and generally have fun before we strut our stuff on Thursday 25th October. Mum, Dad, Sister and Hubby have already booked tickets for the evening show - my nieces are gutted that’s its over 18’s only. My nephew not so much lol 😂 😂 😂.
SOCIAL LIFE
Aside from all of the above, I have managed to catch up with some friends, made two different birthday DVD’s for my mum’s 60th and my neighbour’s 50th and attended a Shine Cancer weekend in the Yorkshire Dales. I actually wrote another blog about that for their website, but won’t repeat verbatim here. Basically that was a weekend where people like me (but with various different cancers, but aged between 20 and 50) got together, chatted, had the opportunity to have beauty treatments, drank lots of fizz in the spa and visited the town where ‘Last of the Summer Wine’ was filmed. (And no, I did not adopt the Nora Batty look!)
(For info, Shine is another cancer charity where I have benefitted from speaking to people going through different experiences and helping put perspective on life 😊. For anyone following me who is/has been through something similar, Shine are on Facebook, Instagram and Twitter; and offer various conferences, meet ups and events to socialise and meet up with people who have gone through similar stuff.)
IMPACT ON OTHERS
It has also been interesting over this time to reflect on how my cancer has affected those around me. My husband has stood by me through all this time, and I don’t suppose it has been easy for him at times either. Me being sick did not stop us falling out about various things, and he did say that cancer was not a special club just for me.
Whilst I beg to differ that point on points of technicality - after all, I was the one who was sick, got surgery, went through chemo, nearly died... - I have to admit he has a point. And actually, I also saw what my Mum went through when supporting my Dad through bladder cancer a few years ago.
People with cancer are told to put themselves first - and rightly so. There is a unique perspective for those who are going through it. And there can be a real possibility that you may die from cancer itself, or the treatment. It’s a tough and shitty gig at times. But, rather than being brave warriors or fighters - to be honest we are at the mercy of how our bodies react to chemotherapy and radiation basically. There is no war to fight. And being positive can only go so far.
I have met people who have the most positive attitude in the world - yet they still die. Medical intervention can only do so much.
There is much research that says if you are healthier in general and have some form of exercise regime it lessens the effects, and stops recurrence. To be fair, I completely get that exercising keeps you healthy and a good diet is not to be sneered at for anyone. However, there is no truth to the fact that certain things can either cause or cure cancer. Certainly not the genetic type that I have. So when I see stuff in the media, it really irritates me. The blunt fact is if you are healthy and exercise your body may be able to recover from surgery and some medications quicker - but sometimes it literally is just in your DNA whether you are going to be ok or not.
But I digress... cancer not only being a club for me. What of those family members who support us?
As I said, my husband stayed by my side throughout - despite some very dark days and me telling him to leave me alone and go get a better life and a better wife. (Honestly, I can’t believe he never took that ‘get out of jail’ card! 🤪😂😀).
Actually to be honest, there were times I just told him to fuck off and never come back too. I am hardly a saint. Whilst I didn’t have many chemo rage (or now menopausal rage) moments... he has stayed. He reminded me that he made marriage vows of through sickness and health. And arguments too.🤔
Throughout my treatment I insisted on him keeping a ‘normal life’ - ie going to work, having friends over, taking his mum on holiday. That’s partly as I didn’t want to feel guilty about spoiling his life, and actually because I needed solitude and peace. That’s possibly a little selfish of me, but its not nice to be around someone who is constantly groaning like a zombie and vomiting everywhere.
But he had a tough time too. He initially refused to speak to anyone (friends, family or professionals) about what he felt about my cancer, or the effects on him. Many people asked him, and he always replied ‘fine’. He went through taking on more responsibility at work, which he enjoyed, but never told me, as he didn’t want to bore me supposedly. I had been quite blunt to him too, as I had initially counselled everyone about dealing with my cancer - but told him he needed to get his own support network as I could not deal with his stuff. 😟
After some ups and downs and me nearly throwing a plate at him one time (in a previous blog), and once I was on the up healthwise again, we had a proper talk for the first time in the 15 months since diagnosis. I then started to understand how my crappy cancer affected him.
For any spouses or carers following... I finally understood that he had been through grief about losing me, concern about the practicalities of me living and dying, rage that it happened to me, apathy when things started to overwhelm him, and feeling inadequate that he could not take the cancer away from me. He also thought that I was never interested in him, and actually, given that I was upstairs in separate bedroom being sick... he was also lonely.
He saw me go out to meet up with friends when I was on my ‘good weeks’, and took the brunt of me when I was at my shittiest. 😔
And to the same degree - my family felt all of the above. My mum took early retirement to help look after me, because at times I just wanted her there. She tended my open wounds after surgery, took me to appointments and chemo. She also cleaned up my vomit when I had been sick in public.
So yes. Whilst cancer itself does impact on me directly and its me that went through the physical stuff, I can’t ever underestimate the emotional impact it has had on those closest. That’s why charities like Macmillan and Maggie’s Centres offer support to family members too. Again, for anyone following - access all the support mechanisms possible.
MEDICAL UPDATES
Ok - doom and gloom and serious bit aside now, I can also talk about medical updates and boobies. 🤣😝😊
During this last 13 weeks, I do continue to have neuropathy pain in feet, and joint pain in knees and hips. I can take me a little while to not walk like John Wayne in the mornings until the drugs kick in lol.
I also have continuing pain (dull ache and sore when pressed) in my ribs / solar plexus. I am pretty sure one GP thinks I am a hypochondriac, because he has dismissed it as a fatty lump that everyone gets. The fact that it is still sore since beginning of February is neither here nor there. I feel like I should maybe give it a name or something seeing as it has taken up residence in my body lol.
I had went to the GP around the beginning of April, and he started off by saying I should stick to seeing one doctor as they doesn’t have time to read my notes each time I come in. He then gave me a row for not going to see the doctors often enough - I have been 3 times in 15 months since diagnosis...!
I have to say at this point I was a little ticked off. I mean, I thought I was being good by limiting the amount of visits and not wasting their time? And I only ever went to the GP that was allocated to me when I rang up. However I wasn’t in the mood to argue that day - I actually only wanted to ask for increased pain killers as I had developed an agonising pain in my shoulder which I had kept or 4 weeks by that point, but was definitely at the stage where it had kept me awake for 4 nights straight.
Anyway... he examined me, told me about the fatty lump, prescribed me Amitriptyline to basically knock me out to sleep, and sent for a same day x-ray. So I trotted off to hospital where I found that he had actually commissioned a wrist x-ray as opposed to shoulder one.... oh, how the radiographer and I laughed.... 🤪.
After a 4 week delay, it turns out nothing of note on the x-ray and I am supposed to go back for a review of medication. The GP had already indiated that it might be rotator cuff damage, or a trapped nerve, and I might need physio. But not bothered going back to see him, as I didn’t really like him. And I came off the Amitriptyline after 4 nights. It was horrible and gave me a hangover feeling in the morning. NOT a good thing for driving to work!!!
On the upside of all of this, I have also now seen my Plastic Surgeon about follow up work to my reconstruction. ❤️😉😍😊❤️
My appointment was on 22nd May, and basically within the next 12 weeks, I am going in to get some tweaks done on my breasts (balancing them up and doing some liposuction to even them out), he is going to clean up the scar tissue which was caused by some wound healing problems, he is going to create my nipples, and he is also going to take the excess skin away from my hip scars too. And its all going to be done in the space of 2 hours ☺️☺️☺️.
I will be booked in for an overnight stay given my history of fainting post-op (and clearly because I love hospital food lol), but I should be back to normal life within about 3 days. This is just amazing, and such a tribute to the skill of the surgeons for the original procedure, and his continued skill to ‘finish the job off’.
After this, I think it is another 3-6 months for any tattooing to be done, but I am really really excited. Looking back now, the last 18 months has sometimes been a turgid slow painful process... and other times it has gone in a flash.
I already have my pre-op assessment on 20 June, and actually, to basically give me peace of mind, my Plastic Surgeon has also referred me to get an ultrasound on that pesky fatty lump. (Even if I do feel like a hypochondriac, I would rather it was confirmed by using a machine, which produces evidence 😂 😂 😂).
FINALLY... COMING UP NEXT
So, aside from medical stuff, I am also going on another cancer retreat this weekend coming in the Yorkshire Dales, courtesy of ABCD After Breast Cancer Diagnosis.
This charity is run by an amazing woman called Jo Taylor who is passionate about cancer advocacy and is a leader in her field. The retreat will give us professional advice and support to run 3 miles, bike 3 miles, do some yoga, and then some Nordic walking - all over a weekend! I am excited and also a little nervous as this is going to be pretty tough despite me doing gym work. But it is all linked to be exercise to build everyone up after diagnosis.
Other than that, can’t think of anything else immediately on the horizon, so the next blog may be some time away, as and when I get my next op.
As ever, thanks for bearing with me - I still really only write this blog for myself to document everything I have gone through, and as an outlet for my buzzing brain. However, if it interests or helps others, then that’s a bonus.
Till next time peeps xx
