Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

Hi @Chocolateismyfavourite I've got my first chemo tomorrow as well. I hope it goes smoothly for you. My appointment is showing as 8 hours 40 minutes long so it is going to be a long day with travel as well. I have to admit I'm a little nervous but I'm hoping it will get easier every week when I know what to expect.

How are you feeling?

@bodiddly wow that's a long time. Are you having anything specific that means it takes that long? How are you feeling? They told me around two hours for the actual chemo, but allow extra for whatever else it is they have to do / running late etc. Feeling nervous. I want to have the chemo to get the cancer gone -or start it on its way at least. But I'm dreading how it's going to make me feel. And worried about how my four kids will react when they see me getting ill because of it. Hope it goes well for you tomorrow xx

Sorry just re read your message, I'm hoping the same, at least when I've done a few weeks I'll know what to expect

@fant and @Thymeout thanks for the replies. That is a relief. I feel a little less worried now as over the course of the afternoon the ache is now my whole back so maybe I’m simply coming down with something or paying for sitting in the hospital waiting room for 5 hours yesterday.

@Chocolateismyfavourite i wasn’t on any pre meds for my first session I just turned up. I’ve only been on premeds since having a reaction so don’t worry about that. As long as you’ve had your bloods done and your weight for the correct dose prescription you’ll be okay. Good luck, don’t be too nervous. Think of this as the test run, you’ll know how you feel then. And they normally run to the same pattern so note down your symptoms day by day. Make sure you drink lots and lots for the first few days to flush through the drugs asap.

There's usually a blood test before chemo, but if you haven't had it yet maybe they were planning to do it at the hospital. I had a pre-chemo telephone call, but it mainly told me things I knew.

My third chemo today, drugs delayed for two hours again despite me asking the consultant yesterday whether that was an issue and her assuring me not although apparently they have to be signed off by 4pm the day before for a 9am appointment, and when I spoke to her it was 4.20. That's three times out of four they've not been ready (I was sent home the first time).

I know it probably totally depends on the type of chemo you are having but do people find they feel rough/symptomatic straight away or does it take days to kick in?

@Chocolateismyfavourite my first one is really long as apparently one of my drugs causes major reactions in most people so they do it v slowly and stop and start it. It's a 4 part chemo so 2 sets of tablets, an injection and the infusion.

@bodiddly I’ve done 2 sessions. The day of I always feel fine. The first time I felt fine the next day and then went downhill a bit mid morning on day 2. The second session I did feel nauseous from day 1 but did still feel fine on the day of.

I think the damage done to abdominal muscles during surgery can have a rebound effect on a persons back. It’s why people who have problems with backache are told a strong core can improve things.

Interestingly enough I got over my surgery relatively quickly physically but two years on I do feel older and I honestly don’t know if it’s because I am older (65 in April) or if the whole experience aged me despite not needing chemotherapy but having a complete and utter mental collapse instead. Yet on the other hand when I was coming home from the supermarket after I’d been at the cinema this evening I was walking across the car park feeling great, I had such a spring in my step, but tomorrow morning it will take ages to get going because I’ll be as stiff as aboard and feeling as dopey as hell - then I’ll go to the gym at 10, work really well and think to myself just who was that in your bedroom at 6.30 this morning and all the other mornings.

Good luck with your scan, although I hate saying good luck. So it’s probably better to say we’re thinking of you and understand the terror. X

@Chocolateismyfavourite good luck for tomorrow. Don’t worry about taking meds in advance. They may want you to take an anti sickness tablet on arrival but all the rest go through the line. When you leave you will have a goody bag full of stuff and some may be the next cycle’s course of anti sickness pill called aprepitain.
I am a bit puzzled because my next chemo is on 4th October at 1500 and I’ve received an appointment with the consultant for review at 1630 the same day. I think the review is meant to happen first so I shall ring and query tomorrow.

Latest news from Tops Towers is MIL 89 had a fall and fractured her hip in the garden. She dragged herself inside, cooked the tea and put FIL 89 with dementia to bed before phoning DH. Poor lady was in agony but boy is she stubborn! I see where DH gets his determination from. He is staying up there with FIL while we get things sorted out. What else is going to go wrong? It’s never ending it seems.
I am fine, had a lovely delivery of Sainsbury ready meals and treats today so I am happy.

Wishing you all well
Top xx

Sorry to hear about your DM, Top, mine broke hers 3 years ago at 86, climbed upstairs and went to bed for 4 hours before she decided an ambulance might be needed, even then she was telling me it was "just a strain". Threw me into chaos though as I was back and forward to hospital plus having to look after my disabled DF as social care were hopeless, then he ended up in hospital too with pneumonia ((50 miles away from my DM) and died, all whilst running my business and supporting DD to start 6th form. I do wonder whether that period of extreme stress was what fucked my immune system and left me with cancer.

Sorry MIL not DM.

@bodiddly ahh ok that explains it.

Well I'm rather hoping someone can talk some sense into me. Because I am incadescent with rage. I was at yoga, so left my phone home and husband answered it. Was the consultant so she'd only tell him a little, and oh my chemo isn't going ahead tomorrow as planned. Because they're waiting for something from cardiology. W.t.a.f!!!!!! I am so so so fucking pissed off. Why!!! The reason they didn't do the heart surgery last week was so the chemo wasnt delayed. I was told it was still going ahead. Reassured by my consultant. No on has fucking rung me until 630!! My appointment is at 10am.
And I have a useless picc line in that now needs flushing and changing as it was done last Thursday and I have no sodding appointment for that.
Sorry for all the swearing.

Sorry too Chocolate, I know the feeling, my first chemo was cancelled in the morning when I turned up, I had had the telephone call the day before to prepare for it and had to drive into the hospital that afternoon for steroids, which I taken, and I'd also been fasting for two days, apparently it was just administrative error and they hadn't prescribed drugs so it couldn't go ahead. I've had so many problems with the hospital including dragging out the time between surgery and chemo because I questioned their treatment plan and basically got chucked out of an appointment, a missed diagnosis that was spotted by the Royal Marsden as a second opinion, and I completely lost it, the nurse who was sitting with me was very nice and it obviously wasn't her fault it was a consultant hadn't prescribed it, but I was howling like an animal because everything had got on top of me finally. The buildup to chemo physically, psychologically and emotionally it is awful, especially the first time when you don't really know what to expect, I'm so sorry it's happened and I hope you can get things sorted out. I've got a big list of things for a complaint once I'm through this lot of chemo.

@SierraSapphire wow that sound horrendous for you. I am so sorry that happened to you. I'd definitely be complaining. They completely mess with your head don't they.

Oh gosh, that sounds horrendous for both of you @Chocolateismyfavourite and @SierraSapphire . I'm so sorry - the last thing you need is administrative crap on top of all the unavoidable crap.

I've been lurking on some of the Breast Cancer Now forums too, and have found lots of useful, practical tips. But one of the things I am really struggling with is that there is a prevailing narrative around how marvellous the care is, and how you just have to let go and 'trust the medics, they know what they are doing'. I have two problems with this - partly just a personal thing in that I like to be in charge and in control, so I find the idea of blind trust difficult. But also - objectively - things do get missed and messed up, and things go wrong, so you can't just let go and trust. As your experience shows!

@dotty2 this is exactly my trouble too. I like to be in control too and this has seriously thrown me. Hoping to get a call back soon as have left a message.

I don't not trust them exactly, but I don't trust them either - I do my own research and work out whether they are trustworthy. But the way the NHS operates to a strict medical model and they know very little about other things that you can do outside their protocol such as diet, exercise, supplements, stress reduction etc. and are often hostile, and that means that the way things are at the moment I'm always going to be out of step with them. Stuff like exercise, I've seen research that indicates that exercise can reduce recurrence by 50% - much less harmful and easier to administer than chemo but no one has encouraged me to do that (I exercise anyway but lots of people don't).

They also stick you into a big category with population-level statistics, but my issue was that I identified that I was an outlier in that category and the treatment that they were recommending was overkill - the Royal Marsden agreed with me but why wouldn't my consultants enter into a more sophisticated conversation than "you're this stage, this is the treatment?

The other problem is the silo mentality, all they seem to want to do it to get rid of your cancer despite it possibly affecting other conditions you may have, I'm worried that the chemo could exacerbate a cardiovascular condition that could kill or disable me before the cancer gets me (if it ever does) but I don't seem able to get a satisfactory answer about that.

It's bloody exhausting though, it feels like it's distressed me more than actually having the cancer when you don't feel anyone's really got your back. And they get even more defensive and closed off when they've made a mistake to not accept liability.

@dotty2 I belong to several international FB groups and find the American approach very interesting. They research their options and see several different specialists before starting treatment. They often have bilateral mastectomy for an early stage cancer with no spread and are now being given biological therapies first line with neoadjuvant chemotherapy ie before surgery. This is a much more radical approach than we have here. No doubt if the evidence is there that it helps long term outcomes then the NHS will follow. The bilateral mastectomy doesn’t happen here without a faulty gene as the outcomes are no better so it is seen as cosmetic not therapeutic. The whole approach is much more questioning and demanding and exhausting.
I am lucky in that my oncologists have been very open with me on how much treatment they think I need, and in both my cancers it has been to throw the whole book at me. We are keeping quite a few options back to use if I get secondary spread in future. The new young consultant I am seeing now is lovely and I trust her understanding of the latest research on TNBC. I was a GP so my medical understanding is good but not my specialist knowledge. I am happy to trust my team and let them got on with things, along with a bit of poking when appointments need chasing.

not sure why the font changed there!
Have a good day folks x
Top

@SierraSapphire I just saw your comment about your cancer unit and exercise. I am amazed they haven’t picked up on this trend. The evidence is that starting lifestyle change on diagnosis helps with tolerating treatment as well as better recovery and outcomes. There is a National movement called 5k Your Way against Cancer and it encourages cancer patients to join a monthly park run to walk run or stagger round. I am going into a trial of yoga and strength conditioning after my next operation. There is lots of evidence that resistance training with weights helps prevent and treat Lymphoedema too.
If exercise was a drug it would be prescribed for almost every condition including heart and lung disease, mental illness and neurological disorders. Can you tell I am a fan?
Top

I started running after cancer/covid I love it it really helps my mental health. When I started 30 seconds running was daunting now I've done a 10k and I'm considering a half marathon . I do my local Park Run regularly and I love it, it is such a supportive community. Park Run are starting up park walk which will encourage people to complete the course their way.
My feeling with exercise is that if I can be as healthy possible it will help me if the cancer comes back. Not entirely logical but I was never known for my logic!

I also run. Marathons/ Half's etc etc. I swim, do Pilates, and mainly yoga everyday, including, usually when having no picc line, inversions and arm balances.

Had a phone from the consultant. The two cardiologists from the two hospitals needed to agree it was safe for me to have the chemo. They have now and, allegedly I'm booked in on Monday morning for chemo. One of the cardiologists wanted me to have the heart surgery I should have had last week. They're saying now, I'm not allowed to drive or swim ( can't anyway as have a picc and don't drive) and no running, but at least I have my yoga. Though no inversions with the picc. I probably won't feeling like doing those anyway

Apologies for not personally replying to other people's pairs at the mo, when I'm stressed I find it hard to think clearly so posting a coherent reply wouldn't be happening.
Really thank full to have you all hear to vent too.

Chemo 3 done and dusted. Halfway there. I had no reaction to the Abraxane thankfully so had the full dose of both drugs today.

PET scan tomorrow. Just hoping it doesn’t show anything! I’ll have results on Tuesday.

In the US ladies are almost universally tested for genetics on diagnosis, its just part of the process. Here its almost impossible on the NHS unless you already have an existing strong family history which means you would have likely already been tested. Had I stayed with the NHS I would have missed an entire treatment line because I wasn't tested and well, Im a statistical outlier in a lot of ways.

I worry too when I see people on BCN board just surrender themselves to the BC meatgrinder process in a bid to not think about what is actually going on and processing it. I insist on being involved in my care and doing what I can to help myself and my treatment team. Pretty sure there is a study somewhere showing better outcomes with involvement. Its your body, why would you not question people messing around with it?

BC meatgrinder is perfectly put @HerbalRefreshment. I’ve really struggled with my oncologist who is really unilateral & has made decisions about my chemo without consulting me, and the NHS system in general. It’s massively ‘computer says no’ or rather NICE guidelines say no, as in, you can’t have X treatment until you’ve tried Y treatment and Z treatment, even if X treatment has been proven to have better outcomes than Y or Z. Absolutely would not switch me to Abraxane etc. Feeling like the medics do not have my back & my oncologist does not listen to me is absolutely disempowering at a time when I am the most vulnerable I’ve ever been in my entire life. I have a good general medical knowledge & understanding & research skills so I’ve questioned a whole bunch of stuff, backed up by the Royal Marsden too. It’s such a PITA & massive stress & timesuck. Top, you’re lucky! Erm not to have two separate breast cancers — but to feel supported by a good team and oncologist!

I’m supposed to have 3 more weekly Pax starting tomorrow & I'm absolutely dreading it as still sick from the last round I had 2 weeks ago. Then 2 weeks off, then onto the next line of treatment. And Scanxiety inbetween. I’m intent on switching to the Marsden when I’m done with IV chemo & feel well enough for the travelling. I read some good advice once about stage 4 cancer: go where the science is. It ain’t in my crappy hospital trust I tell ya that.