Weeks 51-53: Thursday 09 - Wednesday 29 November 2017
Starting with all the best news ever so far, after writing my last blog, my sister had her genetic testing back, and she is negative for the BRCA1 gene... so thankfully no-one else in my family will be at risk as I was. 😀😀😀.
The other thing that happened is that it has been confirmed that everything they took out of me at last surgery (ovaries and Fallopian tubes) have come back all clear of cancer too, so it really is best news all round. 😀😀😀
Really is best news, so absolutely wanted to make sure I paused to reflect actually how far me and my whole family have come in the past year. And it has been exactly a year. (Well technically this is Day 365 lol.)
I write this on Thursday 30th November... exactly a year tomorrow, I sat in the hospital getting mammogram, ultrasound and core needle biopsy. 6 days after I had found the lump.
It truly is amazing that looking back, how much has actually happened.
Some shitty things. Some really good things. But sure as dammit, I am never going to be the same person again. 😜
This time last year, we had the neighbourhood lighting of the Christmas tree, I felt numb right through, and my two neighbour best friends were there by my side. My surgeon (initially introduced as a consultant btw), had told me to take a week off work and distract myself, before going back for the results. Oh the naïveté of innocence.
But, I have never been angry about having cancer, didn’t ever feel the need to vent or indeed to find a reason for having it. I put it down to just one of those things. As it turns out, I did have a genetic mutation, which has clearly taken me down a different route from the one initially planned.
It’s funny as I wasn’t obsessed about the date... it was only when I wrote the date at the top that I wondered when my cancerversary is. I am assuming that is defined as the date of formal diagnosis, in which case that’s actually next week, Friday 8th December.
Anyway, for those who have followed my story, I won’t re-hash everything again. But simply summarising the last 12 months:
- Lumpectomy to remove lump. This was planned day procedure in 23 December 2016, except I kept fainting in recovery. So got kept in and released on Christmas Eve night.
- Good news was that it didn’t spread to lymph nodes, so planned chemo was to go ahead as scheduled. Did however end up with blue boob from the dye used to trace my sentinel lymph node. 😱
- Then I had to postpone chemo by a week as I picked up the winter vomiting bug. Was both relieved and upset - knew it was for the best, but I was terrified of delaying the unknown crappiness which is chemo.
- Started chemo. Six rounds, once every 3 weeks. Told everyone I was going walk through it like a breeze. Was very much mistaken. Ended up in A&E hospital on a regular basis due to neutropenia sepsis and other side effects... potentially nearly died twice. Had to postpone my last chemo too due to illness.
- Along the way, they did my genetic test and changed my chemo slightly. Even worse mix and ended up with frequent flyer miles at hospital.
- Due to genetic mutation, talked through risks and I decided risks were too high to do nothing. Subsequently had double mastectomy with immediate reconstruction from tummy fat on 24 July 2017, 7 weeks after last chemo. Major surgery, some funny stories, and discovered I am not good on any kind of opiates lol. 😱 🤢💩🤒
- Recovery from that surgery meant it took me a few weeks to be able to walk upright; I discovered the joys of using a mobility scooter temporarily, and I got a flat tummy for the first time in my entire adult life 😜. I also had some surgical sites that didn’t want to behave and heal over as quickly as I would have liked, but I learned the medical techniques of debriding wounds, and developed a passing interesting in gore and slime.
- 10 weeks after that surgery, I was back under the knife again, this time for keyhole surgery to remove ovaries, tubes and put me into immediate menopause. And that’s been ‘interesting’ so far...
So... that’s me in a nutshell.
There is no way I could have got through all of this without the love and support of family and friends. And I don’t ever underestimate what impact it has had on all of my relationships... marriage, family, friends, work.
Some things will genuinely never be the same again...
... Some things are like getting the opportunity for a fresh start...
... and yet other things mean I now have a new lust for life, and I want to try new things, and generally celebrate the fact that I am indeed alive.
Through it all, I can only commend the NHS for their treatment of me. I literally wouldn’t be alive if it wasn’t for them. It really always did seem counter intuitive to think I felt fine (barring painful lump), and I voluntarily took poison to make myself better, but I did.
I hope never to have to go through anything like this ever again, and I hope I don’t turn into a melodramatic hypochondriac that thinks that every lump and bump is going to end up being something devastating. However, it’s also hard to be cautious when you are told to report any warning signs.
For my type of cancer, I have a three year barrier to get through before the risk of recurrence is deemed minimal. That’s despite all the risk reducing surgery I have had. Whilst I no longer have my original boobs, there will always be microscopic tissue left.
There is also the very small chance of secondary cancers in future years. This is not scaremongering. This is fact. However I am still holding out that my breast surgeon and oncologist say I have at least another 40years left in me. So that’s what I am banking on. 😀😀😀
I am not going to lie. I know I am not back to full health yet.
My bone pain from chemo side effect has got worse since onset of surgical menopause. Basically my body has gone into shock from everything it’s gone through and immediate stoppage of hormones, leaving me at real risk of osteoporosis. I will get bone infusions every 6 months for the next 3 years, and I have to take bone strengthening drugs every day for next 3 years too.
Some days are better than others. Good days it’s a dull ache which I think will be the new normal for me. Other days I feel like I have either cracked bones, or red hot pokers going through me at different joints.
This may or may not be permanent damage. But it’s manageable. I just don’t like taking lots of painkillers!
I also have pretty awful fatigue. I am trying to even out the peaks and troughs of tiredness by getting regular movement and exercise, but menopausal night sweats also wake me up, as does bone pain so it’s a bit hard to control at the moment. I have no idea how long menopause will actually last... just have to ride this one out too for the duration 😜.
But I am also pretty stubborn, and nothing can keep a good (or bad) woman down. So I am trying to increase all activities in my life by visiting work, going out socially and also keeping my brain active in different guises.
Different friendships have come and gone, and new ones made. It’s an interesting time, but I don’t suffer fools gladly any more, and I am even more blunt than I was before. But equally, I have made several new friends who are going through similar cancer experiences and ‘get me’, whilst other friendships have really deepened as a result of many heart to heart conversations.
I still don’t know what I want to be or do ‘when I grow up’... but I don’t see this as a bad thing. Merely an endless well of opportunities to try new things. 😀
But I do want to do something where I can make a difference. Make a positive impact on something, someone, somewhere. So watch this space... who knows where life will take me 😀😀😀.
Anyhow, having marked the almost year part, it’s funny to look back at photos pre-diagnosis, and then different ones throughout the year.
I am not a vain person by any means (I don’t have to look at myself lol), but I never used to leave the house without washing my hair. I can’t stand greasy hair, so had to be washed every day. Then I went through baldness, with different scalp care required due to the chemo, then to baby fuzz, through to it’s just about at an elfin crop stage today. It’s darker than I ever had naturally before, although I still think I look a bit like Tin Tin with a front quiff currently. But along the way I got to (and still will) play with various wigs and skull caps. Some out of necessity (its cold being bald!), and others because they really are good accessories!
It’s nice to read people’s comments on how I look... it’s actually very flattering. Albeit I am not very good at taking compliments. But it has also brought home to me that actually we do all get hung up about what people look like. Fundamentally I am still me. Bald, long hair, fat face, thin face, beetroot coloured... I also get that actually people who know me are generally just pleased that I am looking so healthy. But it’s when strangers stop me to tell me I look gorgeous or sexy on nights out that makes me think .... how do they know? They are judging me purely on looks.
And that then got me into whole conversations about friends who are on Tinder / Match (other dating sites are available I believe lol). People are initially judging on looks alone. And I know that these sites genuinely work out for some people, but wow. I just think that that is sad reflection on where we have got to in society. But am going to stop there. I am now sounding like I should be in a rocking chair, with a banjo, possibly some knitting and a bag of chewing tobacco... 😀. And that’s really not the purpose of my cancer blog... (I may however return to this topic via my other blog lol!)
Anyway... the past 3 weeks have flown by, and I have managed to get out and do loads.
I have been a bossy daughter once again, and marshalled dad into going to various medical appointments. (Sometimes standing in front of the receptionist desk wearing my skull cap and explaining that Dad had various ailments and we were concerned because we both had had cancer is a really effective way of actually getting past the dragon receptionists who control the diaries of the most favoured GP’s...)
I have also attended another 2 cancer charity nights. One for Rainbow Valley, and one for my local oncology unit. The nights were very different but completely amazing in their own rights. 😀
The Rainbow Valley one is huge with over 500 people in attendance for glitzy dinner, all night entertainment and disco, with auctions, goody bags and lots of glamour. Fantastic night, but again, I found it to be quite emotional in terms of the lived experiences of some of the speakers. I am not sure if everything is still very raw for me, but stories of people living with stage 4 cancer is both heartening, but also quite upsetting. But I was thankful to have my friend Fiona there with me to make sure I was not going to be reduced to a bubbling wreck.
It was an interesting table of ladies that we sat with. Not known to either of us, but certainly an eye opener when it came to some of the conversations, the dresses and the drinking habits. 😀😀😀.
It was also a great night for people watching in general, and given the state of my joint pain at that point, it was good to be able to sit down all night, listen to the music and relax.
(However I also now have insight into people smuggling in alcohol via Capri sun containers!)
The second night was a local disco with an 80’s fancy dress theme, for about 30 of us. Very low key, but very funny, and just a good night all round. Lots of dancing to 80’s music, and family friendly, but an unfortunate adult humour comment when drawing the raffle promoted the cutest little girl to ask through the microphone... “does anyone know what a scrotum is?”
Well. Suffice to say the room just burst into laughter for a quite a long time... 😀😀😀
On the medical front, I had to go to see my GP about my bone pain and other stuff linked to menopausal symptoms. Unfortunately she couldn’t give me anything without referring it to my oncologist, so unfortunately after 2 weeks I am still waiting for some feedback. In the meantime, she has put me back on co-codamol for the pain, but it makes me woozy and upsets my stomach. So I am back on merry go round of trying to weigh up benefits of some tablets, and trying to manage side effects by taking other tablets. It’s a bit crappy some days. Other days I just prefer to live with the pain.
She did however refer me for an x-ray, as it appears I may be coughing too much with the cold. So I toddled off for an x-ray to be told they don’t normally check for cracked ribs, but they were being uber cautious with me because I had a cough... (more than the GP explained btw). Anyhow... I should get the results after 10days...
A week later I was actually back seeing my plastic surgeon who has basically said no more operations for 6 months in order to give my body a rest, and for things to settle down. I actually do have some flattening out of my breast tissue, so think I will end up needing revisions in due course, but this was always expected so I am not too fussed about that. But on positive note, everything healing well in relation to scars and suchlike.
(I have very little sensation on breast and tummy area nowadays, but really not an issue... just glad to be alive lol... although I have tried out the newly purchased vibrator on my scars to promote scar thickening... it’s certainly an interesting sensation lol... but all on medical advice remember 😜.)
Whilst seeing plastic surgeon, I asked him about X-rays and he confirmed no fractured ribs. However because of the pain, he now thinks there may be cartilage damage. So he is now arranging for an ultrasound for me.
(I am tempted to leave it till it all gets better, but it is good they are being cautious. I just don’t want to be seen as a drama queen hypochondriac!!!)
I can almost guarantee that it will be something similar to what I had before... Tieze syndrome.
I had this way back when I was at university, and it’s basically inflammation of the cartilage in between the joints. And back then I had it in my rib cage area. But I know, I know. It’s better to be safe and get it checked.
However, unlike the joke my sister has made a few times, it is NOT the same as having Tourette’s. Despite my occasional colourful language... 😀😀😀
Although... having also got my flu jab recently, the numb arm afterwards maybe had a few people querying that last statement...
I have also been out to a few comedy gigs in the last fortnight, as well as a few social nights out with various friends. I think I am on a mission to show that I am in recovery, I can have fun, and that nothing keeps me down. Truthfully I think I realise I have been ill in my bed quite a lot on the last year, and now it’s like I genuinely have a new lust for life and because to be frank... I now appreciate life is for living. And time is precious. So... am going to have as much fun as possible. Of course, I go out, have fun and then potentially sleep the next day... but you know... I just need to find the right balance.
But... for anyone that knows me.... when have I not done things at 100mph? I think this is just me starting to get back to full strength 😀😀😀.
I know my mind is still not quite as sharp and as focussed as it used to be. I can’t read a book quickly anymore, as struggling to keep focussed and remember the plots. I go to the kitchen to make friends tea and coffee and forget what they just ordered. My timekeeping is still pretty poor as it takes me longer to get ready in the mornings. And sometimes I forget where I am supposed to be. (Of all things, timekeeping stuff upsets me more!)
So I write down lots of lists. And put stuff in my calendar. I struggle to remember stuff, and chemo brain really is a real thing. My teenage nickname was Dizzi. I think I may be returning to that...
I also do a good impression of claw hands. The joint pain is definitely worse overall in my hands. I guess it’s like an arthritic pain. But holding pens to write is hard, and actually typing out stuff on my phone, or even this blog, now takes a lot longer to do. I do a lot of finger curling exercises to help with pain. And wearing gloves. Or holding hot cups of tea. Some days definitely harder than others. But still not complaining. It’s just going to be my new reality. I am stubborn. I will adapt 😀.
Trying to think what else I have been up to... visited work a few times. 😀😀
It’s been great to see everyone, and got to meet my new boss too. Over next few weeks I will hopefully organise an Occupational Health appointment to discuss my return to work, and take things from there. I know I must be genuinely on road to recovery, as I am bored, frustrated, and itching to get back... and I will be returning to a completely different landscape from the one which I left. So, interesting times I think.
Also been swimming twice, danced around the house to have fun cardio workouts, and helped friend move some stuff around (I am seeing that as resistance training with lightweight bags lol). The dogs are benefiting from daily short walks too... it’s not tiredness that gets me, it’s the freezing cold!
And... I have also decided to organise my own 40th birthday celebrations for next year. 😀🍾❤️
It’s not so much to have a party for my birthday. That’s just a convenient date. It’s more of ‘I am grateful to be alive party’, combined with a thank you party for all my friends and family who have got me through the last year. So, currently looking at venues and add ons. At this rate it’s going to be bigger than my 2 previous weddings.... 🤔🍾💋💃.
Other than that, not much (ok, that is slightly tongue in cheek 😀).
The next wee while will be caught up in Christmas festivities, going for ultrasound, trying not to be a menopausal Godzilla, and continuing to try out new things. This weekend I am trying snowboarding. So, assuming I don’t end up in a full body cast, I will write about that next time!
Until then, keeping with the positive vibes 😀😀😀 xx
