I’m not going to lie, id didn’t want to write my blog this week. I felt like I had nothing to write and have been in the foulest mood. I’d written tiny chunks as and when I’ve felt like it hoping that it will all come together in one piece in the end. My head has been all over the place and I find myself quite often just staring out of the conservatory into space.

What a shitty week

On the 2nd October 2020 Spences mum sadly passed away from a very short battle with lung cancer.

Pat was diagnosed a day before me and told us that she had 4 months to live. She was in the RUH with a chest infection the night I went for my CT scan so Spence was able to visit her for a short time. He knew that she wasn’t well, but I don’t think anyone knew she would only last until the following morning. Pat was only 64.

As if Spence didn’t have enough to deal with already, he now has the added worry of trying to sort out his mums estate. There is so much to do. Again, PA required! They don’t make these things easy for anyone. You have enough on your plate trying to take it all in and grieve and then you have to tell 1000 different companies the sad news as well. I tried my very best to help and do as much as possible to take the pressure off of him but after a few days I just found it all too much. I lost focus on what I was having to deal with and became very tearful and for some reason quite angry. I just wanted to scream “what about me?!” but now was not the time. So I just held it in.

Things that I’d usually be able to just grab by the horns and do with no hesitation, on this occasion were just too much. So I did something that I NEVER do and I just stopped. I stopped trying to do it all and just took a step back. Straight away it was a huge weight off my shoulders and gave me time to focus on what I am having to deal with.

My Hair

I’ve always washed my hair every day. If I don’t I just think it looks greasy and limp. I have so much of it that washing it straight away makes me feel cleaner and better about myself. BUT….it takes aaaaaaaaaaaaaages to dry it as its so long and very thick. I have my Dyson hairdryer which I love and numerous lotions and potions that go on my hair before, during and after the drying process. I don’t know if I should bother now. Before long I wont have any hair. There is part of me that doesn’t care and just think “what the point?” then there is the part of me that thinks I should make the most of it while I have it left and enjoy it while I can.

Another C word

I have no idea what Christmas will be like this year. Usually Spence and I will load up the car with the dogs and head to Gemma’s. We spend most of the day with her, Charlie, Steve, Mum and four other dogs. Its probably the only time of year when we still get together as a family. Gemma always cooks the most amazing meal, mum spoils us with her gifts, Spence manages to rush through my Amazon wish list a few days before Christmas and come up trumps! and Charlie will get spoiled rotten like any child should at Christmas.

We then head to see Spences step mum, dad and other family in the afternoon. Spence will more than likely have another roast dinner and I’ll just pick at the pigs in blankets and stuffing balls. Then we head home to chill out together in the evening. Stick on our PJs, watch a film and have a Baileys. After all the food and drink Spence will more than likely just fall asleep!

No one ever really know what they want for Christmas, apart from the nieces and nephews who have lists as long as their arms! Gone are the days when I would sit with the Argos catalogue and circle the things i’d like then fold down the pages for mum and dad. I honestly think I get Gemma and mum candles and face creams every year! I sometimes feel like i’m just buying for the sake of it.

I feel that most of my shopping will be done online this year as I don’t know if I will be in any position physically or mentally to want to go out shopping. I LOVE shopping, online but also in a store and you will all know that I love a bargain. I’ll spend a pound to save a penny. If anyone ever compliments me on anything I own I cant just say “Thanks” I have to blurt out “Thanks. It was only £1 from WISH” Anything over a tenner these days in Primark and its classed as a “Considered purchase” for me.

My favourite past time is browsing through WISH for things I never knew id needed. I place my order, wait 6-8 weeks and then hundreds of tiny grey plastic parcels covered in a million customs stickers arrive at my door. I get excited opening them to find out what i’ve ordered.

This year i’m going to try and get the few Christmas presents that I am buying from one of the breast cancer charity sites or from sites that donate to cancer charities. I know this wont appeal to you all but even if you just bought one packet of Christmas cards, a Christmas decoration, anything from them or any of the other cancer charity sites it would mean the world to me. It will also help in raising money for some charities I feel i’ll be coming to depend on quite a lot over the next few months. I mean come on. who wouldn’t want some robin salt and pepper shakers for Christmas? (Not me by the way) But seriously, even if you just click the links below and have a look.

https://shop.cancerresearchuk.org/

https://shop.breastcancernow.org/

The MRI

So this was not quite as bad as I was expecting however I was still quite anxious having never had one before.

I was back in Dept B7, Radiology at the RUH. I didn’t have to wait long for my appointment and again, was the only person in there. Spence came with me but stayed in the car to have a nap! New Zealand lady was clocking off from her shift when I arrived, and we smiled through our paper masks at each other.

As I sat down a cheerful rotund lady shouted my name and called me through. I was taken to a small changing room to get undressed and remove all my jewellery. I was told that the whole room was magnetised, and it was important I had no metal on or in me. I couldn’t take out one of my ear piercings and had visions of walking in to the room and getting stuck to the wall by it! I got undressed put on my gown. This thing had three arm holes! But luckily there were instructions stuck to the wall which showed me how to put it on. It was basically like slipping on a jacket then you had to swing the front bit around and put your arm back through the third hole.

I filled out a questionnaire to make sure I was fit to have my scan then off we trotted to the MRI room. It looked very similar to the CT scanner but rather than being the big donut like the last one, this was a tube, and a small one at that! Much to Lees disappointment I didn’t ask how they do MRI’s on really fat people but next time I’m there, I will ask for him.

Cannula in the arm again, I hate that bit. I gave them my left arm this time as my right arm had had enough for the week. Rotund lady didn’t get it right the first time. I wasn’t looking as they did this but I knew from the “opps, Sandra can you get some wipes for all that blood” that she’d not got it right.

Now then, I hope there are not cameras in these rooms as this next bit was very undignified. I was asked to climb up on to the scanner bench and get on to all fours. At this stage, my gown was opened and I had to lower my body down slowly whilst attempting to line up my boobs in to two large plastic holes. It was a bit like a game you’d play at an arcade “up, up, back a bit, left a bit. Right a bit. Down, down, right. Perfect” Picture the kind of table you lie face down on for a massage but with added holes for your boobs to hang through. Id HATE to think what men might have to do if they had testicular cancer!

I was hooked up via my cannula to some more dye, had some headphones put on me and then I was good to go. I was led face down with my arms by my side like I was about to do the luge at the winter Olympics. As I was pushed in to the machine it squished my arms even closer to my sides. That’s how I could tell how tight it was. I felt my heart speed up a bit with panic at how small this was. I am bloody grateful that I was face down as I would not have liked to have seen how enclosed I was.

The machine fired up and was VERY loud. Hard to explain what it sounds like as I’ve not really experienced anything like it before. Basically, it sounded like a huge magnet whizzing around you thousands of times. Funny that! I had six scans. Four at three minutes and two that were six minutes each. It was boring. I laughed when I remembered mum telling me they could play me some music if I wanted and that when she had her scan she was played Cliff Richard. I was grateful Cliff was not serenading me through this.

I tried to think happy thoughts to pass the time. I thought about our wedding day. I pictured the minute I walked into the room and saw Spences eyes fill with tears as I walked down the aisle. This made me cry. Face down in a hole this was not the best idea. So instead I watched the little bit of dust in the face hole bounce around with the vibrations from the machine and got annoyed that I couldn’t get it out.

Once we were done I was posted back out and able to take my boobs out of the holes. I was quite sore after lying like that for 30 minutes.

The Good, The Bad and The Ugly

Getting the results of my CT scan and finding out about the HER2 results was probably the most anxious I’ve been about anything so far. I felt sick and Spence and I didn’t talk the whole way in the car to my appointment. I didn’t have anything to say. Waiting to find out if the cancer had spread around my body was awful.

We arrived about 15 minutes early for the appointment. There was nowhere to sit in the breast unit so we had to sit out by the main café. Due to social distancing I wasn’t even allowed to sit on a chair near Spence. We were sat so far apart that I couldn’t even hold his hand. I sat and googled Secondary Breast cancer and was convinced that any headache i’d had was brain cancer and the pain I’ve been having in my ankles over lockdown was bone cancer.

Eventually we were called thorough to sit in the little room with no window, on the bed with the paper sheet. Nicky came in “Good news is that there is no sign of cancer anywhere else in your body. This is negative, this is negative and this is negative” I cried. That was one thing ticked off my list. “But”…..oh Jesus. “I’ve seen the MRI scan from yesterday and very briefly discussed it with the radiologist. From what we can see It looks like your lump is one big lump with lots of little lumps around it” )At this point she took her pen out and drew it on the paper sheet on the bed for me) “So for that reason we think your only option for surgery is to have a mastectomy” I cried. Spence held one hand and Nicky held the other.

For quite some time I’ve been getting my head around the operation I thought i’d be having. What I’d look like, the scar, my bodged remake of a boob. But it had not really crossed my mind that I’d need a mastectomy and we had not talked about it much. The focus more had been on the HER2 result. If I was HER2+ I could have chemo first and shrink the lump, have it removed, have a reconstruction and we are good to go. This is now not the case. My cancer is HER2 negative.

As I write this I’m not sure where I am with it all or how I feel about it. I’ve spent the afternoon looking at mastectomy bras and pictures of ladies with mastectomies and I’m not going to lie its not a pretty sight. The bras look shit unless you have hundreds of pounds to spend. I guess I’m not too worried about how I’ll look in a bra or clothes as you get given a prothesis to wear. No one who doesn’t know me will be any the wiser. It’s how I’m going to deal with looking at myself without it. “being flat” as Nicky calls it. How will it feel? will it hurt? Will I ever be able to look at myself in the mirror again? I feel my days of topless sunbathing are going to be a distant memory.

Reconstruction

I can still have a reconstruction, but I’ve been told it won’t be for about a year and a half. I need to have surgery, then approx. eight weeks to recover, then chemo and then radiotherapy as well. I’m not sure why I need this as well, I can’t remember that bit.

I’ve also been told that it can take quite some time to come with the terms with not having a breast as well as having to psych yourself up for the mammoth operation that is the reconstruction. I worry about how mentally i’m going to handle this.

The best reconstruction option they feel for me “The Gold Standard” op as they call it, is called “DIEP flap surgery”. In a DIEP flap Op, fat, skin, and blood vessels are cut from the wall of the lower belly and moved up to your chest to rebuild your breast. The surgeon then carefully reattaches the blood vessels of the flap to blood vessels in your chest using microsurgery. I will have a scar from hipbone to hipbone just below my bikini line as well as significant scaring on my chest. It takes about 6-8 hours to do and can be up to 5 days in hospital with about 2-3 months to recover. Its not something to be entered in to lightly. Its considered major surgery.

All of a sudden, it’s all about about to get very real.

Hot dates for your diary:

  • 15th October – Full MRI results to confirm what my surgeon pretty much already knows
  • Pre op – Date TBC
  • 17th – 20th October – I get Covid tested and then Spence and I need to fully shield until my op.
  • 20th October – My Operation

“She wore her scars as her best attire. A stunning dress made of hellfire”