Cancer Support Thread 94 - Sweetness and light - the two noblest of things.

[LemonDrizzle10]

@tilllly and Daisy.

@MothralovesGojira well we shall see re: the phased return. As you said before, we are not the same people as we were pre-cancer and can't simply just " slot" back into the system. The phased return doesn't continue after the summer break. According to OH, if that is the case, then I'm not deemed fit for work!
If I find I can't cope, I will have to leave. I did request to drop a day on Friday, but the feeling is, I've left it too late for this year.

Will definitely get the recon pain investigated. God alone knows what it is. CT scan results were in last Thursday and there were no red flags apparently.

I don't blame you for not wanting to go ahead with surgery. What are they wanting to do? Definitely wait until all scan results are in, before making an informed decision.

Wonder what this stomach pain could be? Joint pain is an arse. I get this with letrozole. I'm looking at CBD oil now to see if it helps and also calm the anxiety a bit. I refuse to take any more prescribed meds.

Hope DC has a good holiday and the weather brightens up a bit (currently grey and drizzly here in the NW!).

Keep bopping away, it's what keeps us going!

@KentishMama glad things went well with fancy new oncologist. It must feel refreshing and confidence boosting?

I'm sick of being treated as a hospital number. My treatment to date has been good, but I feel so unheard regarding this shite menopause. It feels like " yep, let's whip everything out because you are riddled with cancer; oh and here are some hormone blockers, get on with it !"
Even the BCN have gone quiet, after the initial " call/ email any time " bollocks !

@Enigma52 after one of my CT scans which are chest, abdomen and pelvis for ovarian cancer, the CNS phoned me with the results which I asked her to read out to me. She said 'the lymph nodes under your arms were clear'. I'm not sure if this is the area you are concerned about but thought I'd mention it in case it is helpful to you.

@Enigma52 Just quickly jumping back up thread to your question on cancer lurking behind your reconstruction: You'd want a PET scan with some of that fancy radioactive tracer that lights up on the scan if it finds and cancer cells. CT with contrast might study work though - they often do CT first and PET second. If you are seriously worried, ask for that.

I do feel better after this appointment. It's odd because he didn't really offer any reassurance re: being so high risk, but at least he listened to how I'm feeling. That's a lot. Having said that, my mammogram is scheduled for 8 July and the Scanxiety is already starting. Sigh

Did anyone here have a PET scan during your initial cancer diagnosis checks?

I was on the cusp of stage IV at 3c (T3-N3-M0) but only had ultrasound breast and underarm lymph, MRI chest, and CT full body.

I sometimes wonder whether I did have distant metastases on diagnosis, but because I didn't have a PET scan they remained undiscovered. Good thing in a way because I believe de novo stage IV is not treated as robustly as stages I-III.

@MothralovesGojira I agree with @Enigma52 in that I also understand why you are not immediately accepting the treatments they want you to undergo this time after having been traumatised last time.

I will be different in future too, should I get active cancer again. I will certainly not be as unquestioningly compliant as I was first time, to then be abandoned to my fate with the appalling suffering I had on the extremely toxic chemos they put me on (including anthracyclines). No, never again. However, I would want treatment, just more on my terms than last time.

I hope there's treatment you feel ready to accept soon; as we sadly know, cancer is an evil piece of work that just keeps marches on.

@londondragonite welcome to this very friendly and supportive thread.

I'm sorry to hear your diagnosis. Her2 positive and grade 3 are nasty things, but for survival, being stage 1 is very, very good as is being oestrogen positive.

Triple positive is the type of breast cancer with the most available treatments because you will get anti-Her2 meds as well as oestrogen blockers.

All Her2 positive patients (regardless of stage or grade) are prescribed chemo because it's an aggressive thing. But I was told that Her2 grade 3 tends to respond very well to chemo.

The time waiting to start treatment is unbearable. I understand how desperate you are to start. I felt that way waiting all the weeks I had to in 2022. I had to wait ages, I hope your hospital moves on more quickly and you can get started.

By the way, mine is also Her2 positive, but unlike yours, hormone negative. Stage 3c.

@Enigma52
WTAF! OH said that? Gosh, I feel really cross for you. So you get a few weeks of having it easy then it's all back to normal regardless? That is not how OH is supposed to work - they can't just write you off like an old, blind pit pony - the cockwombles. Can I suggest that you contact ACAS for advice or have a look online? There are no fixed rules regarding phased returns.

I have no idea what the stomach pain is. GP has no idea and blood tests are clear so I suspect an ulcer is in play but it just needs to be confirmed in order to be treated.
As for BC surgery because I'm refusing RT then a mastectomy would be necessary but I would need both breasts removed at the same time as they're really solid heavy and I can't live with one left twisting my spine more than they do now. They've refused this so far and make empty promises about doing it 'later'. They say the alternative is a lumpectomy again which will only temporarily solve the problem because my BC would return yet again in under two years. Herceptin is already off the table because it affected my heart and lungs last time and oncology are not currently offering any alternative. At the very least I'm looking at months and months and months of chemo.....and I don't want that. Oncology here are very narrow in what they offer BC patients. Anyway I will wait for the BC unit to give me my next appointment but I already know that there's nothing until August as appointments told me so when they tried to insist that I don't go on holiday and attend the BC consultants appointment mid- July instead!

Well they want me in today to have my bilateral nephrostomies tomorrow. Wish je luck - I think I'm going to need it!

@MothralovesGojira I completely understand why you don't want months of chemo. Do you know the type of BC that you have this time, is it still Her2+++? How about hormone receptors? Any way you can get to a different hospital and new team?

@Whatevershallidowithmylife Good luck tomorrow. I really hope it goes better this time. Keeping my fingers crossed for you. Let us know how you get on.

@Enigma52 It sounds very tough going back to work while dealing with recurrence of the cancer. Is it your choice to return to work or is it financially the only option for you?

@KentishMama So glad to hear your new oncologist is so much better.

@SummerCycling
Sadly this hospital is the only hospital available which is why treatment is so shite I can't go anywhere. It's a bit of a captive audience really so unless you're a quick simple case then the chances are you will be under treated or mistreated or not treated at all. The breast surgery/ consults are done at a second location and on the whole they are very good but it all falls apart once you're transferred to oncology.
Yes, I have HER2+ BC again. Same type and exact same place but bigger and more advanced this time. I had a CT scan last July and I was clear but my cat started biting my head again in November so I knew it was back. I contacted oncology and was ignored. I had my annual mammogram in February and hey presto! I had BC again.

Ok, so here's today's example of what I deal with at the hospital.
Last Friday the BC unit call me to cancel this week's appointment with the consultant. They wanted to rebook it for 16th July - I'm on holiday and she was very put out that I would not come back for one 20 minute appointment. The appointment booker then said "For God's sake the next one isn't until the 30th July". When I said that the 30th was ok for me she ignored me and talked over me saying that she would have to ask the consultant and would get back to me as there was no capacity.
Today a different person called me to book my mammogram and ultrasound. She told me that I had to come in this Wednesday and I replied no, I can't do that as I am working and it's too late to change now. She then said but you have to have it done on Wednesday so the results will be back in time for your appointment on 16th. I don't have an appointment on the 16th says I. Yes, you do says she. No, I don't because I am on holiday as I told your colleague last week I said.....silence..... Well you'll have to come in on the 16th as we've booked it now she says. And so on it went until she decided to go back and ask someone and they'll get back to me...again. She has, though, booked my mammogram for Friday when I'm not working but I'm still going to have to phone them tomorrow to make sure that the appointment for the 16th has actually been cancelled and try to rebook it even if it's not until late July/early August.

@Enigma52
Did you go back to work today? How did it go?

DC will not have a lovely warm sunny holiday as they're going to Iceland! They will be staying with their girlfriend's family but if the volcano goes off again then it may warm up a bit 🔥😅

Hey @MothralovesGojira
Tomorrow is the big back to work day!
I was feeling nervous, but today I thought, crikey, I'm 53, have dealt with a shit load of shit last year and this and will be going through it for a long time yet! Fuck knows what I've got to be nervous about, in the grand scheme of things! I've discovered CBD oil. Even without the THC, it puts me in a happy place! 😆

Iceland, wow!! I've never been. Hoping a volcano isn't due to erupt?? How long are they out there for?

What a carry on for you at the hospital! So you need to rebook for late July/ early august now? Did you have a lumpectomy first time ( yes you did, just read your other message!) If you have a mastectomy, you would want the other breast gone I'm sure; particularly if it causes problems. Looks like that's the only option? Why can't they do both at the same time?

@SummerCycling yes returning to work is pretty rubbish. I'm claiming PIP for the metastatic cancer, but also need to work for financial reasons. Will see how it all goes I guess. Wish I could just retire!

@Enigma52

Good luck for tomorrow! Hope it goes okay.

Good luck tomorrow @Enigma52

Glad you new oncologist listened and was kind KentishMama That makes a big difference. I have a lovely one, currently signed off from as got 2 year all clear but she was an angel and listened to all my worries and let me have a lot of say in my treatments. Hope Tamoxifen is better.

Good luck for op Whatever

Best of luck today @Enigma52 and @Whatevershallidowithmylife

Sorry to hear that you're not much further forward @MothralovesGojira If you do opt for mastectomy having had a single one I can see that recovery from two single surgeries may be easier than having both sides done at once - I found my arm function quite limited to start with on the surgery side but it wasn't really an issue as I could use the other one. It wasn't painful I just couldn't move it much to begin with, it's fine now. Anyway I really hope you can find a solution soon x

Apparently they 'just don't do that' at the BC unit. No reason given but even if I had the dud breast removed and reconstructed then they still wouldn't do them both at the same time @demivolte . It just doesn't make any sense and I really would prefer just one surgery as I react badly to GA's and ended up in resus last time. I also have breasts that weigh 5-6kg each (my cat weighs that & he's a chonky boy!) and I will not cope with the heavy weight on one side as my spine will twist. BCN has already admitted that a weighted insert will not be the same and my spine could crumble.

And now the BC unit have called & cancelled my scans for this Friday that they said were urgent and had to be done this week

@MothralovesGojira So sorry to hear how the hospital is messing you around. Did they say why your scans were cancelled this Friday?

I'm sorry the hospital ignore you. Open Access ignore me, they're nurses who we are supposed to contact at our hospital, but they're worse than useless. I've heard other patients say Open Access are basically there to gate keep and prevent us from getting scans, treatment etc. I've had scans, but via other dept consultants.

@Enigma52 Sorry to hear you have to work due to financial pressure. Is there any chance of early retirement due to ill health and getting your pension? Have they indicated it isn't possible? It's horrendous someone with stage IV cancer has to work I really am so sorry.

I was struggling with working again, so have taken another few months off - and I haven't (yet) got a recurrence of the cancer (am very, very high risk so it's often on my mental radar). I completely understand how much of an overwhelming struggle it can be, let alone when stage IV. It just isn't right that you have to work. We are financially worse off with me taking time off now because my year's sick pay ran out ages ago, but we are ok for a while. I do at least get contribution based ESA. I'm not confident I will ever manage my previous work ever again due to the effects of all the chemos and MABs. Cancer takes so much from us in so many ways doesn't it.

@SummerCycling yes I wish I didn't have to work, but ill health retirement isn't an option unfortunately. I have a small teaching pension but can't claim that until I'm 60, along with a tax free lump sum. My local government pension isn't much at the moment, so need to keep working to build it up. and my state pension doesn't start until 67. All I can do is see how things go. I won't be able to work as hard as I gave been ( I'm a TA in s SEN school) and if it gets too much, i will have to leave and survive on PIP. I trained as a teacher years ago, but left with burn out and then got sick with primary BC. I never found a job which paid anywhere near the same salary and as a consequence, my pension provision is rubbish. I keep wishing I had stayed in teaching because by now, I would be retiring on a decent pension. Hindsight! If stage 4 takes me, I won't be able to work anyway! Cancer is an absolute arse!

@MothralovesGojira it makes no sense not taking both breasts at the same time, particularly as you need GA each for each surgery. Why are they cancelling your scan appointments?

@Enigma52
How did you first day back go?

The pension situation bothers me too. I have a civil service pension which I can't access until 60, Retirement Pension accessed at 67 and I have no pension with my current job as I don't met the earnings threshold (like 75% of our retail employees). I may check the CC one though if I can find details to see if I can claim earlier as I have a rolled up, old style Teflon plated one. It's the government Retirement Pension that really bothers me - all those years of NI contributions buying you a pension that's going back to the government just because you're unlucky enough to snuff it before any pay out. My dad became ill with a brain tumour the week he retired at 65 yrs of age and was dead 14 months later and all that saving was for nothing as the only person who benefited was the wicked step-monster!
I'm only continuing to work now so that my DC/DP get a death in service pay out. It's so utterly shit.

I have no idea why my appointments keep being cancelled and they won't say.
I feel as if I'm being punished for not being more grateful. The fact that I now question everything, pushing back at their assumptions that I will do everything that they want me to, seems to irk them enormously. I suspect that I'm on the shit list.
The hospital called me back this afternoon and rebooked my scans for next Monday. I asked them about the consultant appointment for the 16th (had yet another text confirming it at lunchtime) and yes, it is still booked but they are apparently 'looking' at a new date. I told them that I can't do the week after either as I'm now having a small procedure done (camera into stomach thing) but anything after that is ok at the moment. So I will just have to wait it out and hope that I don't get an angry call from the consultant demanding to know where I am while I'm feeding giraffes at the wildlife park on the 16th. I've called them three times now to sort it so I will leave it with them. DP is very unimpressed with them as he's moved work stuff twice now to accommodate my appointments - he didn't have to do this last time as I always went on my own but he's defo had his eyes opened to how shit it all is here.

Does anyone have any good news to brighten up our evening?

@MothralovesGojira first day back was okay. Once all the pleasantries were out the way, the reality of working again hit me. The reality of living with metastatic shit, whilst being surrounded by seemingly healthy people, caused a slight bitterness and I had to escape for 10 minutes to gain perspective.

Yep the pension thing worries me too. What is done is done now and will have to deal with that, when the time arrives.

The NHS don't know like anyone speaking out, that's the problem. We are meant to be eternally grateful for all that they do. Same with the oncologists. I tell them how the menopause is kicking my arse and they don't want to know! Well they did ask and because I don't say " yeah all fine thanks" I get the evil stare and then the " Mmm.. yes.. well maybe see your GP!" Fuck it.. I will suffer then! Bought some CBD oil and will down that each day! 🤣

Good news?? It's going to be warmer next week! ☀️🌞

@Enigma52
I think that they don't like people like us because we fuck their stats up 🤔
Asking questions & pushing back cuts into their time target stats. Not agreeing to exactly what they want to do cuts into treatment schedule target stats. Not getting 'cured' completely screws their survival stats up and if you dare to not have chemo until your body & spirit are broken then you're looking at getting discharged from oncology without a nary wave.
And as if cancer wasn't shit enough you can look forward to losing your name and becoming patient number, surname, dob every time yo contact. Sorry I sound a bit bitter but the consultant wrote to my GP back in May telling them that I was being '' a problem " and could they have a word with me

My only good news today is that youngest DC has done a bit of tidying of their bedroom and with help from college has finished their CV! Yay 😁

@Enigma52
I'm glad that your first day back went ok. I hid in the toilet when I returned to work in May so you're not alone in finding it overwhelming. People don't know what to say I think.