A blast of radiotherapy

I didn't think I would write in this blog again as I just didn't want to write about the cancer anymore.  However, a friend said to me yesterday to maybe write again.   So here I am, Wednesday evening almost 7 pm.   I was on my way to bed with my hot water bottle and saw the computer still on so ...... 

Since I last wrote in January, i've had many hospital appointments for blood tests, two scans, chats with consultants and I've started the two lots of medication and monthly injection.   .   

The medication Letrozole has a side effect of making ones joints painful, and they weren't joking when they told me that.   So i'm taking pain killers for that ....which I don't like doing but I am doing it now and i'm just left with discomfort ..... extreme discomfort.   

At one chat with the consultant at Derby, I thought I was going to discuss having the radiotherapy which was supposed to be a "mop up" of anything else lurking.   However, when I arrived, I was asked "have you brought anyone with you".   I knew by that question that something nice wasn't coming.  During the appointment with the consultant I mentioned about the dull ache in my left arm (operation side) and i'd had the feeling before, a few months after surgery but it had gone away.   This time though, it wasn't disappearing and was accompanied by a new lump in my chest near armpit.   I was examined and after coming back from the curtain sat down with consultant.   She said it's possible the lump is the lymph node which she informed me was growing and would need 15 rounds of radiotherapy at a higher dose than normal.  This higher dose could cause nerve damage to my arm.   I got upset as I was expecting to get a schedule of appointments for the "mop up".   I recalled being told during chemo that the growth was shrinking so I was confused but too upset to ask any more questions.  I was offered a cup of tea, which I initially said no it's ok thank you and "are you sure" said the consultant "because I'm having one" and off she shot in her trainers to her brew.   I meanwhile was taken into the crying room awaiting my tea and sympathy in the shape of my radiotherapy nurse Sarah.   

Since that appointment, I have been overwhelmed with more feelings, and my mental health in slowly declining and I've been reluctant to discuss it or ask for help.  My head daily thinks about death, dying, my finances and doing a power of attorney (which i did start doing long before I had cancer.... but never sent it off as it was £80!!, feeling forgotten by people, feeling disconnected from people, feeling disconnected from myself, and I'm eating not great food which I just can't stop.  I keep saying no to going out, going for a short break somewhere.   I have funds for an updated camera, but no interest in getting one or taking photos.  My head is saying "there's no point doing anything".   I don't want to tell people how bad I feel and partly that's because I don't fecking want anyone saying "ooooh just do this" or keep it in the day because I know what would be good for me as I've been practicing it for a good while now.....but I'm in a place where I am struggling to do what's good for me.   I feel like if I don't get some of this shit thinking out of me, don't tell people actually I'm not ok, if I keep disconnected, I won't have the ability to do what I am managing to do which and will just not get up.   I had a few days with mom and Les last week and it's better when I'm around people, but I can still feel disconnected and detached.   

Having a dog for the week was amazing in the way that I had a living breathing thing to look after, feed, toilet, walk, and hug hug hug.    My calendar this month says " EVER LOVED SOMEONE SO MUCH  YOU WOULD DO ANYTHING FOR THEM?".   YEAH, WELL MAKE THT SOMEONE YOURSELF AND DO WHATEVER YOU WANT".   And having Tia stay, wow if I could just treat myself like I treated her (going out looking for belly rubs, flopping at peoples' feet with my legs in the air, being in the moment, only eating 1 healthy meal a day !!).   

I think a lot of people will identify with being able to look after others really well, but when it comes to self it's a lot harder.   I read on a cancer support group yesterday about people who were working through their cancer treatment ...... dear God how could anyone do that other than to distract themselves from what's going on.   But momentarily I thought ooh shit maybe I should have kept working.... but the reality is my body was fucked with the chronic fatigue before cancer arrived and I was already off sick. 

So starting Monday 21st March, I have 15 days of radiotherapy.   monday to friday for 3 weeks.  I'm a bit fearful of it making me feel even worse however I'm assured that tiredness is generally the only side effect and maybe a Red Titty.    E45 is all ready to be applied.     

So, just by typing this post, i'm thinking ok what am I (what can I) do:

tonight, make the hot water bottle and go to bed, listening to a podcast 

tomorrow, get up and have breakfast.   have a shower.   brush my gnashers.  go to a support group meeting on line at 2 pm.   then go for my last session with Zella the shetland pony and see if she can help at all !!!   Breakfast is already made and in the fridge.   Lunch is also done or should i say bought and is ready to open.

Despite feeling how I do, I do know that I have a lot of things to be grateful for like not thinking of a drink to sort me out (because it won't), my warm flat, running water, hot water, hot water bottle, food, bills are paid, support via macmillan and breast cancer now who I can ring without making an appointment, I'm not living in a war zone, I have good friends who will help me (if I ask!),  to name just a few ....   

   

Love Titty and Tracey 

   

Chemo is over ...................living with secondaries and thank yous

I haven't updated the blog since November as I just had to deal with getting through each day, feeling those pesky uncomfortable things called feelings.   One day at a time, whatever came up, I went through it.  There was no where to run.   

So, I had my last chemo a week ago.   I'm struggling now to even write about the last session as I still gag thinking about it.    So I'll just thank God that's over.   

It was 5 months of what felt like living out of a bag, going to stay with friends initially, but then to mom's to recover from said chemo.   So when I got home last week from mom's I unpacked my bag knowing I wouldn't have to be going off anywhere again until I choose to.   And do you know I have no desire to be even going on a little holiday ..... yet.

My cancer journey isn't over though yet and won't ever be.   Although chemo has shrunk what was left after the surgery, it also spread it's wings and journeyed to the bone in my spine where it is apparently awaiting oestrogen to make it active.   I got told this in December and it blew my mind that I was no longer in the curable category, but now in the manageable category.  It felt like a death sentence because we discussed timescales of how long people can live with cancer and manage it.   But all I could hear was it's still in there.   

Just over a month on I had a conversation with another Consultant.   I asked why we couldn't do radiotherapy on the bone cancer and she replied because we don't need to, it's dormant.    I was quite stunned at this as I understood when I was first told in December it had spread that meant it was running rampant around my body.    Also no.   

So off to the Consultant I went yesterday to see how I am going to live with the cancer.   Apparently people are doing it all over the globe.  They even go to work still with it.   For me at the moment there's not a cat in hell's chance of me working.   And that's a relief.   

The plan now to keep the oestrogen away from the cancer is: 

Letrozole tablet daily 

Palbpciclib tablet daily 

(Denosumab) injection once a month - this is for the bones - fabulous side effects include getting painful joint !  

1 blood test per month 

1 scan every 3 months 

I have to say I don't relish the thought of all this, however it's better than planning my funeral.   

Constipation 

One of the joyous side effects of chemo has been a change to bowel function.   Having been a regular on the toilet for many many years and not having any difficulty emptying one's bowel, it's been a bit of a shocker.   I started getting pains on the one side of my head and I've been taking paracetamol for about a month or so.   I even ended up having a head scan just to be sure cancer hadn't taken residency up there.    Alas no, it appears that 5 months of chemo have caused me to have a backlog that I thought Dynarod might be called out to.   After 3 days of laxative and 2 suppositories, movement has been slow.   The reason I share this is because I had no idea how poorly a constipated person can be.   I'd been feeling sick as well and put it down to the chemo so was popping anti sickness tablets which it turns out can also contribute to the bowel changing so I was making it worse !!!   

Anyway, be warned.   Eat your fibre and drink shit loads to keep regular.   Constipation is not something you enjoy.  Apparently it will take about 4 to 6 weeks to get back to normal.   

So i sit here typing this update, and it may well be the last one as I don't know if I want to continue with it.   As you know I've also used my creativity, be that photography, drawing painting textiles, writing to deal with life's opportunities for growth.   But this has been different.  Initially, yes it was a focus for me but I just don't feel the same about continuing to journal about it.   Maybe it's just been too raw and still is.   I've lived it and although I create to inform and impart knowledge about subjects not always talked about openly, I feel the need to retreat now and just start living with the cancer.   Getting a new routine, moving to nearer my family, getting my long talked about dog and who knows what else.   

This last 8th months and the gift of cancer has actually led me to rethink what do I want, how do I want to spend my days and surprisingly some of the things I thought I wanted I actually don't.    

I do know that none of us knows what's going to happen in the next moments, days hours weeks.   We may think we do because we've planned it and we're determined and focused and I'm going to live forever ....   But the reality is at any given moment our lives can change like mine did in June last year.  I said then nothing had changed, but everything had changed.   And it continues to change.  I'm much more living in the day than I've ever been.   I'm more willing to sit through/discomfort, pain, fear rather than escape it.  My default setting will always be avoid pain where possible.  But we grow through pain, and in avoiding it, growth is stunted and we remain in that place of safety, fear and fantasy.  Today I'm in reality. 

I'll end this post just by saying how amazing my interactions with so many people at Queens Hospital Burton has been from diagnosis through to yesterday's consultation.  From the out of hours chemo team reassuring me, to Macmillan who are amazingly supportive in all sorts of ways from equine therapy sessions to just being at the end of the phone, also my local pharmacy, the car parking peeps at the hospital, and of course my friends and family who have gone through this with me and who I have cried with, snapped at (or as my mom put it "you're a bit sensitive at the moment") !!!!!  and spent more time with.   

Love Titty and Tracey