The best thing is chemo it helps it shrinks the lump,I couldn't wait to start it I've been on it a year now and the cancer has now gone,so you keep fighting it I know it's difficult but you will get through it all x

Hi 2me,

Have you discussed your clotting issues and chemo with your consultant? There are different types of chemo and some are probbably better for you than others. A number of people have refused chemo at your stage for various reasons. Hopefully, some of them will come along to chat to you soon. There are also many other people like Fifa, who have found it so beneficial.

This is a big decision to take and one that only you can decide on. Ask as many questions of your care team before you decide. 

Whatever you decide, I hope that it's the right decision for you.

Kind regards,

Jolamine xx

Hi Jolamine,

I'm in again tomorrow for the bone scan results,  CT Monday and I've chased them up to get the results from the hospital that took scans last year.  The scans are sent by post!!  I was already aware of cost cutting in the service, when I didn't get a further diagnosis with a chest as well abo/pelvis scan.  If I'd got the chest checked, surely they'd of had more to go on as I found a lump within the week.  As I'm getting further into it, I can see more of the same problems.

So, not ten minutes ago I got a letter in the post asking me for CT of thorax/abdo/pelvis.  Now I hadn't said to the surgery consultant but I did tell the cancer nurse, by text, that I've had tinnitus for the past 2 years.  I'm a musician and could well have stood too near the drums but I don't know and how do they?  Nothing I'd like more here than to know if its gone to my brain because I've a few decisions to make :)

Peter grew his hair long during covid. Clients had been ribbing him about getting it shaved off.  Mine is an inch from my bum and curly; should always have had it like this!! I want to continue performing for as long as I can.  It's my mojo.  I don't want anyone to know. We're getting our heads shaved in the pub with a few tunes.  I'll make the eyebrows a thing...try and figure a not too radical change for people whilst having a full on metamorphisis.

I've never done any social media, imagine never done facebook. I think I'm lucky.  I don't perform under my own name either which has now turned into a double life :) Having my head shaved in public is far more public than I'd like :)  I was always shy and I'd hide behind my hair.  I'm not like that now thankfully.

Peter is doing well, although running round like a headless chuck trying to balance work and our trips to the hospital....which is a bit under 2hrs away.  We're laughing a lot which is always good: must get that brain scan :)

Meeting the chemo doc for the first time tomorrow.  He's the main one til op and then back to him for radiotherapy. Hope we get on!!! So far I've been lucky in there. Will impress on him my need of a brain scan along with the others. Hope he hears me.

Then CT Monday, back to this guy next Thursday and hopefully they'll have got the comparison made to last year's scans; I can only hope.  I want to see the speed of the growth because I've also intentionally lost weight in that time; if the TNBC could be fat fed as I've read, then I want to interprate that too; somethings I might know best.  I already checked out if the weight loss was intentional by having the most wonderful 2 days filling myself on the denied foods and drink.  Had a great time :)  Up 3kg...so that's good? It's ok I'm walking a lot :)

Hi Fifa and thanks for the reply.  That's brilliant its gone and congratulations on your journey :) I'm on for the fight surely :) x

Just got to figure this out. Do I don't I?  One step at a time.  Would like to keep my hair ideally :)

Good you keep fighting,you can use the cold cap but I didn't I lost all my hair but it does not bother me I did have  a wig but now it's growing back 

Hi 2me,

You'll be anxiously waiting for your bone scan results tomorrow - I hope that there's not too much spread.  It seems strange in this technological era, that things are still sent by post between hospitals. I hope that they can shed some light for you, when they do arrive.  When you are so worried about spread to your brain, would it not be advisable to have a scan of your brain too?

What a wonderful idea to have a shave off in the pub - this will give you a complete metamorphous without drawing attention to why you've had this done. It's very brave of you to do this in public and, I hope that it all goes well. I am glad to hear that you are getting the support you need from Peter and that you are still managing to laugh a lot - this is one of the best medicines you can have.

It sounds as if you are going to have a busy week ahead. I hope that you get on well with your oncologist tomorrow - make sure that you discuss all of your chemo concerns. You will find it helpful if you and Peter draw up a list of questions tonight and take this with you tomorrow. Are you allowed to take Peter with you tomorow? If you are, draw up 2 identical lists and give him one. Get him to write down the answers whilst you are asking the questions, as you'll forget a lot of what is said before you leave the hospital grounds. Make sure to impress upon him the need for that brain scan too.

It will be easier when you start to get on with things and don't have to wait on all these tests before you can decide.

Always here for you.

Kind regards,

Jolamine xx

Thanks Jolamine, you were seriously helpful again.

I'll do everything I can to get that brain scan added to the others, when I talk with the oncologist tomorrow.  I'm thinking if something shows up or not, let them do the chemo.  And if it shows up something that increases the risk of a bleed, then no. Surely I shouldn't really have to ask.

You were again so helpful because this time I'd been so focused on scans I'd put the clotting issues to one side, when right now I could do with my game on.

Thank you for for the help! You've shortened the time of me thinking about it and increased my fun time :)

And at that, my brain gets a rest from it for a while :)  Think I'm doing good....which is made easy when I feel well. x

Hi 2me,

I would have expected a brain scan to be routine when they are looking for spread. Perhaps your consultant is waiting to see what your other scans show up first, but it would be much easier for you if you didn't have to wait for even more results and could get the rest all done at once. I'm sure that your oncologist will have chosen the type of chemo carefully, given your clotting issues, but make sure to ask about this tomorrow.

Fingers crossed for tomorrow!

Regards,

Jolamine xx

Hi, just home.

2 and a half hour wait this morning.  That's over two hours driving to the hospital and because appt was at 10am, we caught rush hour everywhere.  I cope, but Peter had put off work until the afternoon and as I write this he's driving a near 150km round trip to do the job now.  Does nothing for stress.

I liked the consutant, although he's one of those super fit people and I've never really got them :) He made it clear I wouldn't be getting medicinal cannabis.  I'd seen it had been approved for the likes of me if anti sickness meds don't work.  He made it very clear they'll work.  No doubt that's a money thing.  I'd rather go natural myself.  I didn't ask him outright just got the feeling he was making his position on such things known.

I explained the bleeding and he listened and got it.  He doesn't want me off the blood thinners and is more concerned about clots than a bleed.  I'm still concerned about a bleed upstairs. He asked why I wanted the brain scan and I asked why didn't they want to give me one? He replied they'd order it to be taken with the others on Monday.  I'm still confused why it wasn't routinely given for TNBC.

No news on spread.  Nothing back from the bone scan yet and nothing said about last year's scans.  I don't even know if they've received them.  The worrying part is that I won't get to see him again until after chemo.  He said 12 weeks and the nurse said 20; Peter heard it too:)  I'll read what they gave me.  My results will be given to me by a nurse next Tuesday and next time I see someone will be when they're administering chemo.

It would seem no chemo is just not an option.  I understand that's the way of TNBC, and I've done all I can to explain my bit.  This thing in my back which is probably lower left lung gives no pain but it's a constant sensation.  Feels like someone left a golf ball in the back of the chair.  That needs stopping because I've felt it get bigger over the last maybe 9 months. 

I wish there was some sort of living will I could make that would allow euthenasia if I had a bleed/clot and was in a vegetative state. I wouldn't recover to where I am now, I'd simply be too old, but life can be hard even as it is!!  My friend is off to Switzerland to finish his MND life which to me makes good sense.  Wouldn't want to be left in limbo!  All very morbid I know....sorry. 

My hair....yes that's going to be some shock.  Red and black and down to my bum curly to new pure white coming through....hope my teeth do ok.  Hope Peter still looks at me the same. Think the pub shave is the only way.  I don't dry or straighten it so I'm going to do lots of that for the next week or two :)

The last nurse said chemo would start next week.  Today's nurse said she'll book me in today.  I'm not sure where best to get it done so they've put me down for two and I'll let them know which one by Tuesday.  If it's a matter of getting a slot then I'm going to let the two run and see which one comes in first. I'll ring the first nurse and see which one of them is the boss :)

So I'm with them.  Chemo and cross fingers all will be well with the clotting.  Bit of luck and all will be well and I'm on my way to being cancer free.  Sucks that I feel fine, living very happily with no constant pain and I'm about to poison the bejesus outta meself!! That I find hard to wrap my head around...until I feel the crawling in my back. x