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 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

And....in the hospital car park I thought I heard air from the tyre.  The car said it was fine and thought no more of it. Peter just rang to say he's stuck with a puncture.  If that consultant knew my life he might prescribe medicinal cannabis.....for Peter:laugh:

Nothing to add, other than to say, never lose that sense of humour. I chuckled a few times reading your post. Whether your wit was intentional or not, it's there.

The wife jokes about her cancer and treatment. Had i uttered some of the things me and my wife have said about cancer in the last 3 months prior to her diagnosis, i'd have been mortified. I'd have scorned others. But sometimes you've just got to laugh or the doom and gloom gets you. So aye, just keep your sense of humour.

Hi 2me,

Many thanks for your update. It sounds as if it all went pretty well today. I am delighted to hear that you maaged to persuade the oncologist to include the brain scan along with your other scans next Monday - that makes much more sense. It is good to hear that you got on reasonably well with the oncologist, even if he is a fitness fanatic. I would expect that the 'no to medicinal cannabis' is probably on the grounds of cost more than anything else.

You must have been disappointed not to get any results back from your bone scan yet. I'm glad to hear that you will get them on Tuesday and that you don't have another long wait. You can always ask the nurse whether or not your other scans are back when you speak to her. Most of the complications that I've heard about chemo tend to be more to do with clots than bleeds.

Refusing chemo with triple negative is what I would call a last ditch attempt, when chemo causes so many problems that one decides to choose quality of life, over quantity of life. I hope that you feel a little happier about having it now that you've discussed this? I agree that it's hard to accept this, when you are currently feeling well. Unfortunately, the thing in your back could well increase in size and start to give cause for concern, which is why they want to control it now. It's worth trying chemo to see if it works for you. You can always decide to stop, if it's causing more problems than it's worth.

Our care teams wouldn't be offering it to us, if they didn

Kind regards,

Jolamine xx

Hi Jolamine,

Not having a good day today.  We don't all get good days all the time :)  On top of that just got call from CT department confirming I've no covid symptoms ahead of Monday's scans. 

I checked with him that they received the order for brain as well and they've not.  I've chased up the nurse by text and said I'd confirm with the CT guy later today that brain is going to be done.

Having some control issues in my relationship which have always been very frustrating and stressful when I've done nothing to warrant them.  I made it clear that in my state any lies were just not tolerable....I don't lie.  It was a big lie and he's still doing it....the worst on the brain.

I won't go into it but it means that I can only see people when I'm with him and right now I could be walking a mountain with two dogs chatting to a friend to help sort this out.  Later I could be playing music in a pub with friends, but as it is I'm sat here typing this.  I'd stopped seeing people along time ago because the payback was terrible.  I love being with him.....just not that aspect of his character.  Anyway story of my life only, never had any other sort of relationship. This is the best....think you can imagine the others!

I've only told my Dad.  He's got all told but he's a long way away.  Even had a mass said for me yesterday.  At the same time as 21 kids lit candles in a school having been told by my beloved who I'd asked to keep it quiet.  I was happy enough for him to tell his best friend or two, but he has all the clients told and everytime I come into the room he's getting his fill of "poor me" from people I don't even know.  I don't even know what my life is anymore....whatever people are told about me?  Yuck.

So, today I don't want chemo. I get that's my treatment. Not sure I'm making an excuse of the clotting now there's still no brain scan booked.  I don't think I want the life I might get after all of this.  The thought of sensory problems in my hands, as a musician is terrifying, although I've lived my life to the full and taken way more risks than most :)  I've even considered seeing my GP about pain relief  and no treatment.  It all sounds so dark and tomorrow I might see the world totally differently, but I'm not in bits or anything, my insides are quiet :)

Thought I'd make an appt with my GP for Monday morning to talk through my thoughts on no treatment and pain relief. My beloved can't take me and I've just found out he'll be returning from a 300km round trip to take me for the scans that evening.  He's always late and I'll have 2hrs drive to the hospital worrying I've missed the appt.  That's all weekend worrying.  Where as if he'd let me drive none of this would be a stress. 

He's using the supposed words of people he has told to bolster his position and make sure I'm wrong to think I should have any life but my life with him.  Sounds good but when your being put out of his car, or the house because he's gas lighting, is no fun.  As well as no friends, no money at that moment.  All done for best effect. At least I now have a phone and a few quid in the bank.

I was always so independent....drove lorries, driven abroad, was know to be a safe bet driving to festivals and ....now...  all because me being able to do it stresses him.

He can't even see that in my position in order to do the best for him I need be allowed do the best for me.

Ok I'm waffling, NB must get brain scan :)

Hello 2me

I'm so sorry to read that, on top of dealing with your recent diagnosis, your relationship dynamics have left you in a very difficult position. 

What you've described in your posts can be defined as coercive control. Obviously, this is an incredibly difficult time for you but if at any point you feel that you want to reach out for support with your relationship, then there are services available that can help you. 

I'd really encourage you to talk this issue through with your GP as well at your appointment on Monday. Regardless of what path you choose to take with treatment, the health care professionals involved will be better able to support you if they have a full picture of what's going on for you. 

Keep in touch 2me. I'm sure the community will do their best to offer any support that they can. 

Best wishes, 
Jenn
Cancer Chat moderator 

Thanks Jenn,

I know it's coercive control; think I could write a book on the subject.  Still seeing you tell me still jolts.  I suppose I see it as his illness and I've done my best, but now, his behaviour just seems way too cruel for me to comprehend.  I wouldn't have done any of the things that have happened to anyone and certainly not to someone in my shoes. I'm finding it hard to find an excuse for him.

I'm lucky, I'm going to take me head away from this by playing some music.  With sunny glasses on I can make our relationship heavenly.  I just wish he'd help me help us.

Hi 2me,

I thought that you sounded almost too calm these past few days. I am so sorry to hear of your current situation. Has this always been the case and, how long have the two of you been together? Are you sure that he’s become more controlling, or is it just the way that you feel at the moment? Most of us feel that our lives are taken out of our hands at this stage and, that we are losing control – I certainly did and, I made life a nightmare for my poor hubby. This was totally unintentional. I knew that I was doing it, but I still couldn’t control it. It was as if I was blaming him for my loss of control, when he was being very supportive. I put this down to fear of the unknown and, the fact that I am a very self-sufficient person, used to running my own life. It sounds as if you are too?  Fortunately, as I gradually began to claw back control, I became more liveable with again.

It sounds as if you have been most unfortunate in your previous relationships, but this doesn’t mean that you have to put up with this current behaviour. Have you tried to explain to your partner how you feel?  It sounds as if the two of you need to have a long talk with no holds barred. Chatting to a friend would be a great help in sorting out your feelings. This is such a difficult situation and, I really feel for you.

I am glad to hear that you have made an appointment with your GP to discuss your thoughts. I see that our moderator Jenn, has already advised you to discuss your relationship at the same time and I would strongly advise this too. Having bad days is all part of the rollercoaster that is our cancer journey. It is not at all unusual to feel up one minute and down the next, so don’t let this worry you. Just hold on tight until a brighter day comes back again. It doesn’t sound as if you have really made a decision about chemo yet, but this is all healthy. You are looking into all of the possibilities and, this is just what you need to do.

Did you manage to chase up your brain scan today? I do hope so. I shall be thinking of you on Monday and hope that all goes well – you could certainly do without the additional stress of wondering whether or not your partner will arrive home in time to make your appointment.

Kind regards,

Jolamine xx

Hi 2me,

I thought that you sounded almost too calm these past few days. I am so sorry to hear of your current situation. Has this always been the case and, how long have the two of you been together? Are you sure that he’s become more controlling, or is it just the way that you feel at the moment? Most of us feel that our lives are taken out of our hands at this stage and, that we are losing control – I certainly did and, I made life a nightmare for my poor hubby. This was totally unintentional. I knew that I was doing it, but I still couldn’t control it. It was as if I was blaming him for my loss of control, when he was being very supportive. I put this down to fear of the unknown and, the fact that I am a very self-sufficient person, used to running my own life. It sounds as if you are too?  Fortunately, as I gradually began to claw back control, I became more liveable with again.

It sounds as if you have been most unfortunate in your previous relationships, but this doesn’t mean that you have to put up with this current behaviour. Have you tried to explain to your partner how you feel?  It sounds as if the two of you need to have a long talk with no holds barred. Chatting to a friend would be a great help in sorting out your feelings. This is such a difficult situation and, I really feel for you.

I am glad to hear that you have made an appointment with your GP to discuss your thoughts. I see that our moderator Jenn, has already advised you to discuss your relationship at the same time and I would strongly advise this too. Having bad days is all part of the rollercoaster that is our cancer journey. It is not at all unusual to feel up one minute and down the next, so don’t let this worry you. Just hold on tight until a brighter day comes back again. It doesn’t sound as if you have really made a decision about chemo yet, but this is all healthy. You are looking into all of the possibilities and, this is just what you need to do.

Did you manage to chase up your brain scan today? I do hope so. I shall be thinking of you on Monday and hope that all goes well – you could certainly do without the additional stress of wondering whether or not your partner will arrive home in time to make your appointment.

Kind regards,

Jolamine xx