Since my last blog the world has, thankfully, opened up a bit which is what I, as many people, have been longing for for so long.
I’ve enjoyed catching up with so many of you and so many yet to see. Not sure I’ve ever had such a full social calendar and I’m loving every second of it. I forgot how much I love getting dressed up and going out and laughing and not feeling bloody ill for a change.
I bloody love hearing how many of you have read about this horrific journey I have been on It makes things a lot easier for me if I’m honest hearing “oh yeah, I read about that in your blog” saves a lot of time explaining it all from scratch. Not that I mind telling anyone about it who wants to know.
What has become clear to me is that there are still a lot of unanswered questions from you inquisitive bunch. So I thought I’d try to address some of these with a “Frequently asked questions” blog. So hear goes…
“How are you?”
You know what… I’m actually ok. I really am. I have my moments when I’m sad and down like anyone does, cancer or not. But I’m genuinely loving life right now and loving being in the midst of what I think is a mid life crisis. But im embracing it and loving the more outgoing/don’t really give a shit, me that I’m finding was in me somewhere.
I stay up later than I should, drink more than I should, drive around like a boy racer listing to VERY loud music in my new car, want to do everything and get involved in it all. My very dear friend Dave said to me the other day on a night out “you’ve gone from being a 3 to a 7” not quite sure what that meant but I’ll take it as a back handed compliment. If not a bit disappointed I was originally only a 3!! Cheers Dave!
The hospital psychologist and my counsellor both said to me that its quite unusual to come across someone with such a “zest” for life after cancer. Apparently, most people take a very long time to want to integrate back into society and get out an about. They have both advised me not to do anything to “rash” like buy a new car. opps! And to not “burn out” which I am guilty of. I try hard to do all the things I could do last year but my physical fitness is nowhere near what I need it to be. It will come in time and I know I just need to be patient.
I started back at the gym a few weeks ago. It was so nice to be back and to see some of the ladies I’ve been doing classes with for years.
As I was waiting to go in the instructor approached me “Not seen you for a while. Any new injuries or illnesses that I should be aware of?” “well…Funny you should ask” I explained about my op and the limited movement in my arm and she very kindly adapted a lot of the moves so that I could still so them during the class.
I hid at the back out of the way. Sian very kindly helped me get all my kit out and I managed to lift about 10kgs for the whole hour! Pitiful effort compared to what I used to be able to do but better than nothing and have to start somewhere. After crying for the first ten minutes, not sure why, I really enjoyed myself and it was great to be back.
“Can we hug?”
HELL YEAH – I want to hug anyone and everyone, for as long as possible. so will be disappointed if you don’t. Human contact is something that I’ve really missed and can’t wait to get back. So if you see me, be prepared to hug!
My immunity was only low while I was undergoing chemo and stayed that way for 10-14 days. But now there is no reason not to hug me so bring them on!
“When are you going back to work?”
Im back! I started back just doing just mornings on the 14th June and will do so for a while, while I try and train my brain to work again and my fingers to type. Its great to be back and having some sort of routine but I do get very tired by the end of the day. Just need to learn what my boundaries are and what I can and cant do for a while. Using my brain is proving to be pretty knackering.
“Are you all clear now?”
No. This is a hard one. I will never be given the “all clear”. Its not how its portrayed in social media unfortunately. All of the treatment that I’ve had was to remove the cancer and zap anything that might have been left in my body. If you recall from my blog after my op I was told “The cancer is out. We have removed all of the cancer and got clear margins” and that is obviously great news but there is a but…… There’s no way for doctors to know that all of the cancer cells in my body are gone, which is why many doctors don’t use the word “cured.” If cancer cells do come back, it usually happens within the 5 years following the first diagnosis and treatment.
I could maybe say that im in “Complete remission” which mean physical exams, and scans show that all signs of the cancer are gone. Some doctors also refer to complete remission as “no evidence of disease (NED).” But that that doesn’t mean you are cured.
If there is a tiny little cancer cell that is floating around in my toe there isn’t a scan or machine in the world that can pick that up. Its just one of those things that only time will tell.
Having had cancer I am at a greater risk of suffering with a recurrence. This wouldn’t necessarily be in my breasts again but could come back in any area of my body.
So maybe when people ask me this in the future I will just answer with “Lets hope so”
“How do you deal with the fear of cancer coming back?”
Honestly I’m not sure. You just do. The sad fact is that we are all going to die at some point. I had no guarantees in life before my diagnosis, none of us did, and I have none now so im not really in much of a different place if you think about it. Ive just had to think about my mortality sooner than maybe some people do.
Had you asked me this question five months ago when I was crying in a heap on the bathroom floor I’d have told you that I’d never live with it. I’d never come to terms with it and it was going to ruin my life forever. But you do. After all it might never happen so I can’t live my life thinking that it will and “what if”. I just need to enjoy what I can, when I can and make the most of my health while I have it. I do keep saying to people all the time that I might get hit by a bus, but its true! People don’t spend their entire lives not going near buses for fear of getting hit by them do they?
Some days are easier than others. I’d describe it very much like grief or the breakup of a relationship. Over time it really does get easier. When you are in the thick of it, you can’t possibly see a way out or any light and you think that you will never stop feeling this way, but as time goes on, you think about it less and less. I have triggers that set me off, but these are not all there all the time.
Any ache or pain or lump I get I think “Its cancer” first thing that comes to mind and probably always will be for me now. Hurt my knee the other day. “Knee cancer for sure” have had an Xray, just waiting to hear the results. I think I’ve just twisted it and need to rest it.
A couple of weeks ago I found another lump. This time in my right armpit. My world fell to pieces thinking that cancer had come back. I spent most of my time reassuring other people that it was nothing but not sure in my heart of hearts that I believed that myself. I rang the breast unit at the RUH and they got me in to see Nicky, my breast surgeon straight away. She gave me a very thorough examination and was confident it was benign and nothing to worry about but was going to get me in for an ultrasound and biopsy “just to put my mid at ease” as soon as she said those words September 2020 came flooding back to me when I was sent to the RUH to “put my mind at ease” and look how that turned out!
Long and short of it all is that the lump turned out to be ok but this was one of those moments when I had flash backs of being diagnosed, chemo, the whole shitty period of my life I NEVER want to see again. Nothing to worry about in fact I don’t even think its there any more. I just need to be aware of my body and any changes and get them checked out if I notice anything different. That’s just how my life is now.
“Are you going to grow a beard?” (Think I can thank Jaz for this one)
As part of my treatment, I have to take Tamoxifen for 5-10 years. This stops me producing oestrogen, one of the things that was feeding my cancer, and joy of joys, has brought on early menopause.
I was dreading the menopause. Like everything in this unwanted journey I’ve been on, there is a lot to read on it and not many positive stories. But to be honest, its not been so bad so far. The first few weeks of taking my tamoxifen I was absolutely buzzing! I was bouncing off the walls and on a real high. It was an amazing feeling. That has calmed down a bit now and I cry at the drop of a hat for no reason! Some people might say that im a bit more snappy sometimes but I disagree.
I get REALLY blooming hot all the time, especially in bed at night and my sleep is a bit disturbed but other that that, I think so far, touch wood, I’ve got off lightly. My breast care nurse told me that if I were to have any more “complications” I would have had these by now so everything crossed there are no more nasty surprises to come.
But to answer the question, nope. No beard.
“Has your perspective on life changed since having cancer?”
Yes. It has made me think a lot about what is and isn’t important to me.
I’m not planning on selling my house and travelling the world, although that would be amazing, but I do want to do stuff and make memories, rather than have stuff.
Don’t get me wrong, I love my 120 pairs of shoes, collection of Mulberry bags, wardrobes full of clothes and draws of crap I’ve ordered from China but it really doesn’t mean anything at the end of the day. The material things are not what got me through having cancer. It was you guys. Every single one of you who read this and reached out to me, who sent me flowers and texts in the middle of the day to let me know you were all thinking about me, just checking in or just telling me about your day and what normal life was like. The floods of obscene cancer humor cards that came in the post (mainly from Tash who I think must have shares in Moonpig) Those of you who turned up with food when I couldn’t cook, who walked the dogs and took Spence out for the day. And those of you who contacted me after years of not talking to each other to let me know you still care and I was in your thoughts. Ive been blown away by that and I hope you all still continue to stay in touch.
I want to spend my money on eating out, going out dancing and laughing, holidays, spending more time with friends and family. Making memories with you all so one day, in many, many years, when I am gone, you can all look back and think of all the amazing things we have done together. Don’t get me wrong, my shoe collection needs a lot of credit but that’s not all I want talked about when i’m gone.
Must just add in that much to the disappointment of some of you ladies, i’m not getting rid of the Mulberry bags yet (Sorry Tash!) however if anyone is a size 6 and ever needs to borrow any shoes, let me know!
One thing that I do know is that I need to focus more on the things I can control. Not spend time worrying about things I cant. I guess this ties in with dealing with the fear of recurrence too. Whilst I can do things to minimize the risk of it coming back, if its going to happen, its going to happen. There is NOTHING I can do to stop it so lets cross that bridge if and when it ever comes to it. Whilst changing my perspective on control after thinking this way for the past 38 years, is very hard for me to do its something that I find quite refreshing when done successfully.
I find myself being kinder and more accepting of people and the battles they might be fighting that you cant see. Maybe even a little less judgmental of people and especially their appearances. I don’t look like i’ve had cancer but I can assure you I have and i’m reminded of what i’ve been through every single time I look in the mirror. It takes A LOT to put on my brave face sometimes.
I quite often say to myself “I actually don’t give a shit” Not in a mean way and I still care, but there are some things now, some dramas that I may have been dragged in to before that actually do not interest me in the slightest now and im better off staying away from. I want an easy life. One with a lot less stress.
“Do you think life is too short now?”
Not, not necessarily. Who knew how long it was supposed to be anyway? None of us know that. Its precious though I know that much and we shouldn’t take our health for granted.
“Is your treatment finished now?”
Yes and no. My last radiotherapy was on the 18th May so no more “physical” treatments, but my hormone therapy will continue for 5-10 years to try and prevent any kind of recurrence.
“When will you have your boob done properly?”
This made me laugh. What I have now is “Proper” it wasn’t just chucked in, its just not a permanent solution. And I knew that when I decided to go ahead with it.
Whilst it looks fab and no one can tell the difference and despite the fact I’ve become quite attached to my new “foob”, it is quite uncomfortable at times, and expires in 18 months so will need to come out.
I had a meeting with my plastic surgeon at Southmead on Wednesday. We discussed the options for permanent reconstruction and decided that the best, most natural option for me would be a DIEP flap construction. This is where a section of my stomach is removed with a blood vessel from behind my stomach all and moved up, attached to a blood vessel pulled through from behind my ribs!!! (ouch) and made in to a boob! Crazy stuff but amazing what they can do. It will involve an eight hour operation, four days in hospital, six weeks of no driving and doing VERY little and then 3-6 months until I’m completely back to “normal” health and fitness. And a few scars chucked in along the way for good measure. And yes, I do get a free tummy tuck as part of this but not quite what its all about.
“How is Spence?”
I could probably answer this at a guess but if you want to know, in the nicest possible way, maybe just ask him. Despite being crap at returning calls or texts he’d probably love to hear from people or go to the pub for a catch up as much as anyone. And it gets him out of my hair for a bit!
“Do you have check ups all the time now?”
No. Unfortunately not. I will have yearly mammograms now until I am 50 but other than that there isn’t really much to check me for. Not to mention you don’t want to be having scans and xrays etc all the time as they are not great for your body in the long-term.
I had a summary letter in the post the other day which details all of the symptoms and things to look out for in terms of a recurrence in my breast or any other parts of my body and the emphasis is really on me to know what is “normal” for my body and what isn’t. ANYTHING that I am concerned about I’m able to call the breast care team at the RUH. They will be on hand for me now for life and I am always under their care.
“Who keeps an eye on you now?”
You guys hopefully! Everyone who has taken the time to read this and been beside me through all of this.
And me. I need to keep an eye on myself. Do all I can to prevent a recurrence. Healthy diet, exercise and less or no stress. The only few things I can do.
“So I take it you didn’t have HIV?”
Should have cleared this one up months ago and totally forgot! but no. Thank god. Despite all the symptoms of my last infection from the chemo being the same as HIV, I don’t have it. So any of my ex’s reading this can breathe a sigh of relief!
Hopefully I have answered some of the things you wanted to know and the questions I get asked a lot. There is so much I could tell you all about if you wanted to listen but ill save it for when I see you in person, if i’ve not done that already. Lets book something in soon xx