Younger Women with Secondaries Together - Bristol

This weekend I was privileged enough to be able to attend an event in Bristol organised by Breast Cancer Care for women aged under 45 specifically with Secondary Breast Cancer. I have actually been on one of these awesome weekends before in November 2012 in Brighton when I had my primary diagnosis.

Whereas in 2012 I was pretty apprehensive about going to the event, this time because I’d connected with most of the ladies going on this one via my YBCN Facebook group I was more excited! We’d all chatted in advance and worked out where we were going to meet etc so my planning side felt pleased 😂

Channelling a French vibe:

I made the mammoth train journey down to Bristol, jumped in a taxi and headed to the lovely Mercure hotel. As before in 2012, everything about the weekend was funded, the hotel, meals, speakers etc. As soon as I arrive to check in, I was met by a huge sweeping hug from Mairi. Had never met the lass in real life before, but everyone’s Facebook connection is so strong it felt like I knew her already 😊

I went to my room, dumped my stuff and headed to the bar. Spotting my girls, we all hugged and started to chat, it was awesome to be with them all for real! Hugging Pilar, Nina and Lisa after chatting for so long was incredible. I also met some “newbs” who weren’t part of the YBCN group who I recruited into the fold. We all got to know each other very quickly and our sense of humour matched perfectly. I knew I’d made lifelong friends when I hugged Bubbles, laughed until I couldn't breathe with Bev, Dom, Steph and Myra, talking about Elmer Fudd & Popeye 😂, Boo's cider shits, our tits, nothing off limits - I think I got to bed about 2am!

The next morning I headed upstairs for the official start of event. I was given a name badge that was immediately adjusted to Lily by Bev! The night before Bev was convinced she had met me somewhere before, she couldn't work it out until about 4 hours later when she shouted Lily Allen at me 🤣

We were called into the main room where the running order of the weekend was explained, there were a few general sessions about treatment, trials etc and then various break-out groups which we had specifically chosen as of interest to us. After a chat about medical advances and other topics we headed down for some lunch. My afternoon breakout group was about Palliative Care and the misnomers about what this is. Other options could have been:

• Adjusting/adapting to a life-limiting illness
• Relationships & communication

Mine was interesting and clarified a few things in my head, however it was a little Bristol-focussed. I understand as they obviously could not cover all areas in the country, and different areas have different levels of care etc. What was good was the explanation that palliative is not literally as you are dying, it’s everything they can do from right now to help.

I also then did a session on exercise and what was possible with my mets, and as a result I have bought some resistance bands.

We then had chill time so Lisa, Boo, Bubbles and I got some snacks and drinks and relaxed in Boo's room. Then I went back my room, got ready for dinner and had another wicked night full of fun and giggles.

The next morning I got ready into a pretty dress 🙂 Lisa loved my priceless £2 watch and ordered it in about 3 colours, good old Amazon from China 🤣

 

We started in the same large room where we had an interesting session on clinical trials. If anyone would like the presentation on this, please get in touch and I will happily share.

We then had our breakout groups where the options were:

• Talking with/supporting children - sadly obvious not one for me 😪
• Adjusting/adapting to a life-limiting illness
• Sexuality and intimacy 

I chose the life-limiting illness session. It was interesting but felt a little more like a group therapy session rather than actually getting coping tips. It was very helpful though and I got the chance to speak about this blog and how cathartic it was which was very cool. 

Then we had lunch and the event was over! It went so fast but it was so good. My heartfelt thanks to everyone at Breast Cancer Care for making the weekend happen. I got some amazing information but the best thing by far to come out of it was connecting to people and making amazing friends.

The Bristol Bitches Mascot is living with Boo  😂

04/08/2018 - I can't quite believe this. RIP Mairi. Shine Bright. I don't know how the fuck this happened so fast. I am in shock. You were so well at Bristol and the first person to hug me. Fuck you cancer you utter utter bastard 😓

End of Cycle 1

At the moment it feels like I'm having non-stop hospital visits. It's so draining and I just want some normality back in my (and Rob's) life.

It feels like Groundhog Day. We went to Guildford hospital, I had my bloods done again, had an ECG done again and then met with Avril. We talked through my symptoms and about how sad I feel. I just really feel low. I need to pull myself out of this pit of sadness but at the moment it just feels like I'm wading through sand. I told Avril about my tooth pain and she said I was to keep an eye on it. She also checked my last bone scan and there were no mets in my skull or jaw which is a good sign. It doesn't explain the pain though, perhaps I have been clenching my teeth in my sleep but it just feels really localised.

Anyway, after an hours' delay, we met with TC. My QT rhythm was normal so I'm back on the largest dose of ribociclib - 3 pills. I'm bloody nervous of this but I have to try and trust that they know best.

I asked TC about the dependence on zopiclone and he said not to worry, if it's helping me sleep then just to carry on with it and prescribed me another month's worth. I hate how it gives me a metal taste in my mouth though and also that I just don't fully sleep still. Everything I have read about it says that it's addictive, you shouldn't take it for more than 2-4 weeks (I've been on it for about 2 weeks now) and that you should only really take it if you can guarantee 7-8 hours sleep. I definitely am not getting that, I wake up all the time with night sweats. I'm struggling to know what to do!

We then had to wait around for 3 hours(!) for the next cycle of prescriptions to be dispensed and eventually we drove home.

I'm on the trial!

Today I had an appointment at Guildford hospital with my trial onc TC and my research nurse Avril. Avril told me that the bloods I had done last week were all within the range for the trial protocol and then she sent me off for an ECG.

I last had an ECG back in 2012 to check my heart was okay for chemo. This time I went in to the room, took off my tshirt, the lady conducting the ECG put about 8 sticky pads on me and attached clips to each of them. She turned on a machine, it beeped and less than thirty seconds later she took the pads off and gave me my printout.

We headed back upstairs and I gave my printout to Avril. We waited for about ten minutes and then were called into a room with Avril and TC. It was then I learnt that I'm on the trial! So although it's all very unknown and therefore scary, I'm on what TC says is "the best treatment on planet earth right now" for my kind of cancer. Thank you everyone who has had their fingers crossed since June 14th!

Unfortunately the results from last weeks scans weren't back, but based on my PET scan results TC was happy to go ahead. We asked him to go through the PET results in more detail, so I now know that (in addition to the lower lumbar region that I found out about last week), the bastard is also in one vertebrae higher up and my pelvis. At least this explains the pain. It does upset me as he originally told me it hadn't spread, however, TC said these mets may have been there all along and at the start of this shitty journey, I hadn't had a PET scan. I.e. The mets would not have been picked up on just a CT and bone scan, it needed the more detailed PET scan to spot the buggers. The other thing he mentioned was a slight "something" on my lung. This frightened the hell out of me. However, he said the PET scan shows cancer through cell activity taking up glucose and this 1p sized area was not doing that, which makes it unlikely to be cancer. So scarring from a previous infection or something similar. Obviously, having been dealt blow after blow, I want to believe what he says, but it is still scary. Now I'm on the trial, I will be monitored fastidiously, so if this area does turn out to be suspicious, at least I'm having scans etc that will keep an eye on it. TC said he wasn't concerned about it, I just have to trust him.

We then had to wait for over 2 hours for my meds to be dispensed. Apparently because its trial medication, it will always take this long. Eventually we got my drug stash and had another meeting with Avril. She went through how to take them and also gave me a tick chart to ensure I mark off having taken them every day. This really satisfies my Jo-CD. Lastly she gave me a card which I have to carry at all times. It contains details of my trial and important contact numbers. If you are ever with me and we have some sort of medical emergency, please ask for my card!

We then drove home and I took my first dose!