[@Loulou94]‍  Hi Hun, how are you doing?

Hello!! I'm doing okay I guess! I'm 4/6 chemos down and still hanging in there :laugh: 

How are you?! Did you get the HR2 result back? You had your surgery booked for the end of Jan didn't you, did it go ahead okay? How are you feeling?!

Did you get your gene test results back? 

Sorry haven't been in touch been on a different planet with all the meds!

Hope your doing okay!

Lou x

[@Loulou94]‍ 

Hi! That’s ok I was just checking in! Bless you. Your nearly out the other end now, although I’m sure it feels never ending! 

Im good thank you. But I have caused a few problems :laugh:

my HR2 was boarderline so they decided to send another sample after surgery.

It was booked but I had an allergic reaction to the blue dye while I was in surgery, so it didn’t go ahead. I’m ok now, although I did have to stay in hospital and I’ll have to have tests to see what caused it because it was a bad reaction apparently. Then I ended up waiting another four weeks for a new slot. 

But I had my surgery on 18th feb and it went well. I’m healing nicely. My margins were clear and my lymph nodes are clear too. So really relieved! Still waiting on the pesky HR2. But I’ll be having chemotherapy anyway, so I think I will be starting that in about four weeks. My cancer had grown 4mm in six weeks! So scary they can grow that quickly. 

Hope your ok and the meds aren’t giving you too much of a hard time. I’d love any chemo preparation tips you might have?! 

Take care

xx

Oh blimey!! I hope they get to the bottom of what caused it! I'm so happy you finally got your surgery though! And amazing news with the clear margins and lymph nodes :happy: 

It really is so scary, mine almost tripled in size from biopsy to surgery! It's like they know they've been caught the little chuffs haha!

im glad you are healing well, just remember to take it easy! 
 

I'm doing alright to be honest, had a few low points but keep bouncing myself back round, think it just hits me sometimes what's actually happening. I finally got some meds that work wonders for the nausea and sickness so that's good, although they cause a bit of short term amnesia so chemo day and the day after is like a drunken night out... I know I was there but can't tell you what I did :laugh:

I guess it all depends on what type of chemo you have, I'm on EC which is epirubicin (the Red Devil) and cyclophosphamide. For me I wish I'd known to prepare with senna and lactulose haha, all the anti sickness drugs tend to have that effect! But it can be totally different for each person! Fizzy pop and salt and vinegar crisps have been my go too with the taste changes, I've never been a big fizzy drinker but it just hits differently when you need a sugar hit! Probably the biggest prep would be hair... I was kind of in denial I would lose mine so when it happened it hit me hard, but I left it far too late, there was hair everwhere, all over the house! I wish I'd have taken the shave as soon as it started shedding, but again it's personal choice :happy:

If you want any more info or anything you know where I am chick!

Take care!

Lou x

[@Loulou94]‍ 

Yeah, I guess that’s expected. The whole things a traumatic experience on our bodies and our minds! What’s your support system like? 

Have you checked out Penny Brohn? They do loads of free courses and group meetings online. There’s some really interesting stuff on there.

ugh I bet the sickness is bloody awful. To be honest that’s one of the things that worries me the most. Glad to hear you have been given something that helps though. 

Yeah I never realised how many different types of chemo there are. I think they are going for FEC-T but obviously we all know how quickly it all changes so I’ll just have to wait an see. 

Hear if you need a chat

phili xx

I have a really good support system, my mum has been incredible through this whole process, I honestly don't know what I'd have done without her. She took leave from her job and has been shielding with me (I live with her) think I've done her head it at times but we've shared so much laughter throughout this whole thing. I think that's one of the key things, you just have to laugh and smile. I've got some really good friends who have been so supportive too, it's so difficult with Covid as I can't see them but FaceTime and messaging really makes a difference. Even reading people's stories on here makes me feel close to people I've never met but are going through something similar if that makes sense? How is your husband taking it all?
I haven't heard of it no? I shall have a google! Have you found it's helped? 

Im not going to lie to you the nausea was worse for me than the actual throwing up. But again some people get it bad, others don't. My oncologist said I'm very sensitive to the treatment which is why I've had it so bad. There's so many different types of meds for it though. I've found Lorazapam has worked wonders for me without lots of side effects. Ondansetron is another good one but causes issues with the gut.

Ah I've heard of that one, it's crazy how many there are! Think I spent a full day reading about different type of chemo once, I'm one of those people who has to know all the ins and outs haha

have they told you how many sessions or the cycle you'll be on? Do you know if your having radiotherapy yet? I got my first radiotherapy appointment letter through today, seems to have come round so fast! Have you noticed any changes in your ME since the operation? 

hope your still healing well!

Lou x

[@Loulou94]‍ Hi, sorry it’s taken me so long to reply. Things have been mad busy, but in a good way! 

How are you doing? Really pleased to hear you have such a great support system. It definitely helps! Definitely worth checking out penny Brohn. I’ve found the classes really helpful. There’s so much out there! 

So how many treatments do you have left? Hope it’s being kind to you. 

I start my chemo on 12th so not long now. And I’m having the same as you EC. I’m having three of them then three Dox. And the Herceptin injections. So any advice would be really appreciated, and I’ve taken note of the laxatives :laugh:

loved that you researched everything. I’m exactly the same. I like to know all the ins and outs. I even watched a YouTube video of my type of surgery before having it lol. 

My hubby has been amazing, sometimes I think it’s harder for our loved ones because they can’t do anything to stop it all. I think that’s what he’s found the hardest. 

How are you feeling about your radiotherapy?

Im not sure really. I definitely feel better but I’m not sure if that’s down to the m.e clinic or the surgery. I’m sure my m.e and the cancer are linked somehow but I’ll never know. My cognitive function isn’t quite 100% but there’s been an improvement. 

Hugs to you xx

Heeey! I'm doing well thank you! How are you doing with everything?!

ive finished my chemo now! I had 6 cycles in total, I'm feeling fine about the radiotherapy, still got a lot of side effects from chemo but very mild, main thing is the fatigue! I'm just so tired all the time!! Got my planning appointment on Tuesday so I'll find out more then.

I totally agree with how hard it is on those close to us, we have the physical side but I think it's hard for them to watch us go through it.

ahhh it'll be over before you know it chick! I think best advice is if the anti sickness don't work, speak to your oncologist and try different ones till something works! Like I said it took me till my 4th to find the drugs that worked for me! But yeah your oncologist should be able to supply you with senna and lactulose! Eat whatever you can keep down even if it means lots of crap food! And just rest, if you need to sleep go for it! 
im glad your feeling a bit better! I get the cognitive thing, I feel like I've got full on chemo brain at the moment and it stresses me out because I can't always think of what I'm trying to do or say... I know it's not the same but I can understand how frustrating it can be! 
Keep me updated on how you get on and I hope it's not too harsh on you!

Lou xx

[@Phili1]‍ Hey! I hope your first chemo wasn't too bad!! 

Sending you lots of strength and positive vibes :happy:

Lou xx