Cancer Support Thread 93 - The Thread for the Dread and the Not Yet Dead? Everything you need to know about Cancer but didn’t want to know

[LemonDrizzle10]

Shiny new thread.

@Enigma52 If it makes you feel any better, I’ve wept through an entire MRI scan & was desperately trying to keep still when sobbing. Last week was my 3rd week of treatment & I wept through a few different appointments. I think it had really started to hit me, I’ve had some personal stuff going on and they are also blasting my ovaries with the radiotherapy.

We’re human. I’d prefer not to be crying but, shit happens and I do my best not to beat myself up about it. I did have an appointment with the psychologist at Maggies last week and that has definitely helped me feel a bit more in control for treatment today.

Ok I've found my twin!

I've cried at every chemo. Im the only one I've seen there crying. Other people are so grateful for the chemo and I'm totally repulsed by it.

I even cried at a line flush in the community in the mobile unit. They put the curtain round me as I was in such a a state. ( I've developed mental health problems around my treatment cos some of my care has been so poor). . The other patient there was a man who was born in 1938. Poor man with me 6 inches away sobbing!

@MothralovesGojira

I know someone who has been left with persistent chemotherapy induced alopecia. Have you heard of that?

tothelefttotheleft · Today 21:55
Thank you for your comment, it’s horrible isn’t it. I wasn’t too bad at the chemo, I managed to hold it together. But I feel for you. It’s the scans and waiting on the results that I can’t cope with. I have just finished chemo in December for colon cancer. Now they found a mass in my chest. I know I’ll need to get it out soon and another round of chemo for that. They are watching and waiting just now. More scans. Im waiting to see a physiologist, but really it’s Valium I need. 😩💕xx

It’s so overwhelming 💕💕xx

Waiting for scan results is unbearably awful. The stress of it is enough to almost cause a breakdown (in my recent experience). Hugs for anyone waiting atm xxx

I cry too, but it's a natural thing to do so I'm not ashamed.

xxx

@MothralovesGojira

Your GP sounds uncaring and possibly ignorant saying that about at your age having to put up with chemo induced arthritis. What does the hospital say about that, have you seen a specialist? There might be something someone more knowledgeable than your GP can do to help. I hope so.

I'm sorry to hear about your hair. I have far less hair generally over my entire body than pre-chemo. It's a good thing on my legs, but thin eyebrows & eyelashes aren't so good. It's acceptable on my head, but pre-chemo my hair was extremely thick and long which is certainly isn't any more (it's ok short, but it could look thin if I grew it again). Can you request a referral for this? To a female consultant - not sure what it would be dermatology(?)

I don't think you can predict about being able to work or not on treatment. I couldn't and I'm taking a break again now after having tried part time recently. I didn't have the necessary brain power any more / yet so will try again in a few months' time. I suppose it depends on the treatment plan they give you, how your body reacts and also on what your job involves.

Keep us updated xxx

I edited the post above to delete the quote, but it didn't let me. Sorry about the huge quote! I couldn't remember what @MothralovesGojira had said otherwise with my non existent memory 🙄

@Yorkshiregold how did the psychologist help you? Did they give you coping strategies? Maybe I need to see a psychologist, as feel I'm truly going mad. Don't want to go to my plastic surgery appointment today, largely because I'm tired. Also because I probably need to ring the Christie hotline and get more fluid drained ( can't face that either!) Now I've got to wait for scan results ( the waiting is just hideous!). Just want to hide in my bed!!!

@Enigma52
One thing at a time 😙

@Tilllly yes. I've always been crap at one thing at a time. 🙈

@Enigma52 It was just an initial appointment so I talked through everything that is going on in my life that I’m struggling with at the moment. Before the appointment I had felt a bit like I was going insane but it’s definitely helped me think a bit more clearly.
Some of her comments made me realise that I had been feeling quite powerless about everything. Since then I asked for a meeting with the radiotherapy nurse to discuss my bladder filling strategies (as a few times I’ve not been able to have treatment straightaway despite following the plan), it sounds small but it had really been stressing me out.
I think I was also feeling really bleak about everything, I’m 4 weeks into daily radio/weekly chemo. & I’ve just given myself a bit of credit for what I’ve done so far.
I have another appointment with the psychologist next week.
Maggies were really good & I had a cancellation appointment in a few days.

@Enigma52 off course you're feeling down, being the entirely simplistic bean I am. You'd be jolly weird if you weren't.
This is not a fun place to be, it is no fun at all. There are things that happen that appear funny because they are bizarre
I vE become a bloody tap at times.

I parked the car outside one of the DC Saturday activities as had mentally put a note in diary. By self have good cry in carpark .
Carpark empty, DS sent on his merry way.. all ready for some serious and well needed wallowing.
Bloody car parks beside me.. right beside me!! Why on earth.... Entire park is empty not one other car
I couldn't stop myself, so bless her she must have been wondering ..wtf?
Felt a lot better for a bit after. I'm letting it all out. I'm tired of pretending to be brave. I'm not .

@nappybrained your " empty car park" experience made me chuckle!! I mean, WHY would you do that?

Reminds me of my late sociology lecturer. She also parked next to another car In an empty car park ( and I think she hit said car on leaving!!) 🙈

I'm not brave either. I'm not going to pretend. Well I have to keep my spirits up for DD19 as she is at uni and worries terribly deep down. I've apologised to her and she just cries.
DS16, is maturing ( slightly!) Keeps applying for random apprenticeships which he can't get to independently or isn't interested in. We need to have words!

Another day. Menopause is being an arse. I'm crying at THE most odd things. Went to see One life with Anthony Hopkins last week. I was a blubbering wreck! What a hero.

@Yorkshiregold it sound to me like the session with the Maggies psychologist was productive.
I too feel as though I may be going insane. I feel frustrated. I'm
meant to be looking for better paid jobs, now that I've had my hysterectomy. Instead, I can barely muster the enthusiasm to get up some days. Ribociclib makes me feel grim, letrozole the same and the fecking menopause, I need to get a grip on that pronto! My body just isn't getting the message that there is no oestrogen to be had.. zero/ zilch/ none!! It feels cruel, but the cancer mustn't be fed!

I think if we can take back some power/ ownership of our bodies, then psychologically it can make us feel better. Small things can fester and balloon into overwhelming situations. I'm probably talking crap. Just trying to find a way through the mountain of treacle.

@SummerCycling
No worries about the long quote - sometimes it's good to see it as post-chemo brain makes me forget whatever I wrote in the first place 😆

Ok, so the consultant phoned me this morning to ask why I had refused my appointment for this Thursday.
I haven't refused any appointment at all. Last week she told me that she would see me again when the CT and bone scans were done but if they hadn't BOTH been done by today then the appointment would be moved to next week. So when admin phoned me yesterday to confirm my attendance this week I repeated what the consultant had said and said that I hadn't had a bone scan appointment through yet & asked was it best to change the appointment to the following week plus could they get a BC nurse to chase the scan up? Ok says the admin person and that they'd get back to me.
This morning, last week's consultant phones me asking why I refused this week's appointment. I ran through yesterday's conversation with admin and reminded her what she had said the previous week about needing both scans for staging purposes and reiterated that at no time did I refuse the appointment. Silence. Then she says well we're not doing the bone scan as the CT scan is clear so do you want this appointment or not? I have of course taken the appointment but then she says a different consultant will see me now and they are going to operate on me next week! I just replied ok I will discuss it on Thursday and left it at that.
So CT is clear so that is good but cancelling the bone scan I'm not sure about. Her justification is that if your CT is clear then you can not have cancer in your bones so a scan isn't necessary.
They plan a mastectomy on the left breast and have said that they'll do the right later as my breasts are dense and heavy I can't be left with the one. I'm not interested in reconstruction. I hate them and just want them both gone now.

My case is up before the MDT this Wednesday so at least I will know what they think the plan is but I will NOT be having surgery next week even if they think that I am. Youngest DC has an important medical appointment next week which has to be attended in person and as I'm their carer I must also attend it so there is no way surgery is happening next week. I have told the consultant that I definitely refuse RT though. I just can't do it - I can't.
I feel that the situation is descending in disorganisation & chaos already and it's been less than a week. They made errors last time and then rushed everything through to cover up their mistakes and I feel like it's happening all over again. I want to know if they think chemo is definitely on the plan. Last time they lied and said no and later confessed that chemo/Herceptin was always going to happening. Unfortunately, I also have a period of six weeks in the early summer that I can not be in treatment or recovering from surgery. It's an unmoveable set of events that I must do and may be a bit exhausting (no, I'm not in the Olympics!) and tbf I don't want to cancel anyway. I also need to hide all this from DC for the next 9 weeks until final exams are done.

Can I ask those who've had a mastectomy - how long was your recovery period for just one breast being removed? Did anyone have both done at the same time and how long was the recovery for that?

Sorry to have just splurged all that out in one go. I'm currently feeling very anxious & cross. Not because of the actual cancer but that I'm not going to listen to or will be lied to or forgotten about again or that I'll get verbally berated again for not doing exactly what they want. I sometimes get the feeling that 'they' feel that I'm not grateful enough or compliant enough.

@MothralovesGojira It is really difficult sometimes to make yourself be seen as human and autonomous. You absolutely shouldn't have to accept treatment completely on the medics' terms - you need to have an equal say in how and when your treatment is delivered. I do also see how difficult it is for the medical staff in the NHS to provide good patient care with the way things are at the moment. So many of them are trying so hard in really difficult circumstances, and unfortunately it's us patients that get the raw deal in the end. Ideally we shouldn't have to advocate for ourselves as much as we do.

I find it's a bit of a game sometimes. You need the medics on your side, so you have to be careful not to come across as being too difficult or contrary but at the same time stick up for yourself. It's a tricky balance. I find myself saying "yes I understand, but..." a lot.

Do you have one oncologist or are you being passed around? Can you build a relationship with one person, get them on your side, tell them factually about how you have been made to feel, why you have little trust in the decisions being made about your care etc? From what you've said it seems as though something needs to change and building relationships with good people might be a first step?

@Enigma52 You are absolutely categorically not talking crap. You feel how you feel. You are going through what you are going through. Your lived experience is real and valid.

I've started actually rolling my eyes when people tell me I'm strong, or they're pleased to see me 'fighting' the cancer. I point out that I'm not strong nor am I fighting - I have a choice to take the treatment offered to me or not, that's all. There's no fighting, and limited strength, and a lot of tears.

@SewingBees Thankyou once again for your kind words, I'm very appreciative.

I too get sick of hearing the words "fight" " "strong" " positive mindset"
Oh and " you've got this!" Really???

I do indeed feel how I feel.

You’re so brave. Look how lovely and strong your hair is coming in. You’re always cheerful that will keep the cancer at bay. It just goes on doesn’t it? I’m flipping exhausted in bed at 9 every night. Work have been a nightmare 10-1800 four days a week it’s exhausting.

tbh I couldn’t see myself delaying treatment or questioning everything it’s just not me. I just want action as soon as possible so I can crack on.

@EachandEveryone you are doing better than me re: work. Until I've got this pleural effusion under control, I've no hope!

Are work not being supportive?
I think my employer wants shot of me'

Just venting.

Gah. My mother. I got a breezy letter from my surgeon after a rather dour appointment with my oncologist last week. I think 2 different ways of saying the same thing but I found comfort in it nonetheless. my mother happened to ring, I mentioned it and she quickly shat on it by saying how surgeons like to wash their hands of a patient as soon as they have done their bit, and consider their work a success. I don't care if this is true. It made me feel more positive and made no material difference as he hadn't said anything untrue and I will be undergoing further treatment anyway. Last time I tell her anything.

@SewingBees
Last time (in 2022) the only person that I saw more than once was my breast consultant/surgeon. I never saw my named oncology consultant and saw a different oncology doctor every time I went who then all said different things. I rarely saw the same nurses in the chemo unit more than twice and in fact the only people I got familiar with were the nurses who did the blood tests. It was always so confusing as the doctors never seem to read my notes and rarely followed what the previous doctor said.
Having had some thinking time and having read your excellent advice, I think that I'm going to ask to see oncology before I agree anything. Where I live breast care and oncology are in separate hospitals and BC generally have no idea what oncology is doing with their patients.

Now have some weird kind of rash on my hands.
Apparently it's a side effect of chemo.
Cancer,the gift that keeps giving ffs!

Me too. I give excellent advice that I am in incapable of taking.