Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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I also found that really interesting and helpful about endurance vs resilience. So true, and yet I'd never thought about it. I will try to remember that: endurance.

@Greyandrare123

Thank you so much for all that information. How great you lifted weights, had lunch with a friend and generally had such a good day.

Interesting how brilliant you felt during the 7 weeks off the treatments; like you said, it does show how toxic the side effects are. Such blunt instruments still in many ways.

Great to hear that Enhertu protects the brain. I read that 50% of HER2+++ BC metastases are in the brain, so it's clearly really important something can help the brain because I know most other treatments don't cross the BBB (is that the right abbreviation? sorry if not!!!).

So sorry you were de novo, what an enormous amount to have to deal with all at once. It sounds like the radio helped your bones a huge amount from that starting point on diagnosis? No pain, that is truly great and I hope that continues for many years.

You made me laugh with the idea of Sarah Beany / other random cancer patient celebrity waiting for hospital transport. How about waiting in the waiting room (standing due to no chairs free) for 3 hours for her appointments. Or all day in a tiny room waiting for blood tests. Or over a month for a biopsy. I think I read Sarah Beany had her biopsy the day after finding the lumps... I agree with you, I can't face watching celebs sharing their cancer treatment; I'd prefer documentaries in an average hospital with everyday people who go through what other non-celebs go through, otherwise it's still another universe really.

I love how you are pushing weights. I need to do more of that.

@lucysmam

I can't help re the matt of hair, but I hope you have a great time having breakfast out with your dad!

I think you were mentioning about your DD prom preparation, nails, hair etc and when to arrange draining the ascites so you could go with your DD. I know it's a completely different thing, but when I had the weekly seroma draining, I did get appointments booked in advance (arranged with the surgical team doing the draining, actually when I was there arranging the following week), which was extremely helpful and reassuring. In your situation I'd definitely phone up and book in now to make sure there's a space when you need it, if you're allowed to book in like that.

It took five months between me first going to the GP and having my hysterectomy, and then another three months after that for chemo to start. I was talking to a friend about that today, I think people think things happen much quicker than they actually do. The two week wait was the only quick part of the process, the GP blood test that took a while because of Christmas, then a scan that wasn’t completed properly because it was the end of the day, so another scan meant that three months had already passed before I got the 2WW referral, then a delay for the results, then 8 weeks to the hysterectomy because there were too many bank holidays in April and May apparently. And I think that was before things started to get even worse. My 3-month follow up was just at 5.5 months. I spent so much time on the phone and crying and trying to make things happen. I also complained to PALS too, but even they are too slow to be very useful.

@LarryStylinson tentative improvement! Still swollen and sore and I can't walk far at all which is frustrating but it is slowly getting better, so I'm reassured I'm doing all the right things and just need to be patient.

The injections aren't too bad - I literally wake up and get it over and done with otherwise the anticipation builds up too much! You'd have thought I'd have got used to needles by now but I swear it gets worse.

Last chemo today too which was a relief! Hopefully last two radios Thursday and Friday and then on to brachy. I think I will cry if I can't do brachy as that means ten more external radios.

Welcome to new joiners and hugs to those who are having a crappy day.

I found the Sarah Beeny doc really helpful but I think that’s because my diagnosis to treatment journey mirrors hers (diagnosed Nov 2022, should be done Aug 2023) although I don’t think we have the same cancer (and I do think the programme missed a trick in highlighting how different the different breast cancers are) but for me the main thing was seeing someone with all the resources and a massively supportive family still struggling at times. Cancer is hard no matter who you are.

@SummerCycling yes, I was fretting about when to call and ask them to book for another drain.

There are 3 people who can do it in our trust, so we're pretty much at the mercy of when they (or one of them)is available to do it but I haven't got it booked yet & the closer it creeps towards next week, the more likely it is to be at the very end of the week, or beginning of prom week. & dd's nail appointment has been moved to 9am on the Monday 🙈 My best friend will accompany her (and pay for me to pay her back) if I need her to, but I'd rather it be me.

Out of interest, I've been measuring how round I am on a morning & it's a steady 29" waist so isn't seeming to be filling much at all. I'm expecting at this point to be told to see if this next dose of pax has any effect, as they' ve said it eventually will.

Oh, and, while we've been glittering her leavers shirt ready for tomorrow, dd has really casually told me that her best friends mum has a cancerous growth on her spine, but it's too small atm for them to treat at all!

@lucysmam I remember having a matt of hair as being a particularly low point for me during my first lot of chemo. I hadn't been brushing out the loose hair daily so I made sure I did after that, even though it was distressing to see it come out. I had to partially cut the mat out - ugh. You could try putting lots of conditioner on it & combing it out gently. Good luck!

Ah, clearly avoiding brushing it for a few days is where I went wrong @HauntedDishcloth. It came out ok with just a brush thankfully & what looked like masses of hair but was, in reality, maybe three days worth. It's still looking ok though...I made dd check for patches & will again before heading out tomorrow.

Crikey! I haven’t read the thread for a few days and there are so many posts to catch up on. Very jealous of those who have seen Harry Styles…there’s just something about him isn’t there?!

My thoughts on the Sarah Beeny programme were mainly disappointment - I found it far too superficial. I actually like her as a presenter and agree with @SummerCycling yes she must have gone private to have her op at the Royal Marsden otherwise we’d all be there! However, I think breast cancer now encompasses such a huge range of treatment and level of severity that people are in danger of thinking it’s ‘just’ breast cancer. I’m pleased for her that her cancer was early and very treatable, but there are many others who are left experiencing a far more severe diagnosis. That just didn’t come across.

Welcome @Greyandrare123 it sounds like you have experienced so much. I’m undergoing chemo at the moment for hr+p+ her2+++ so it’s good to hear there are more drugs becoming available. Lifting weights is on my radar to investigate when I’m feeling stronger - sounds like you are benefitting from it.

My hair is def coming back! I’ve still one more round of Docetaxel to go!! However, because I couldn’t face touching or looking at my bald head, my scalp is in terrible condition. Does anyone have any wonder product suggestions?

Do chemo people have silk pillows? I bought a couple and avoided any matting, though I combed every morning too. I still use them now. I treated myself to proper silk but DD has special hair (v curly!) and uses cheaper satin ones.

I have no idea who Sarah Beeney is, but what ground (?) my gears was Julia Bradbury going on and on about her breast cancer trauma and fight for survival and the forlorn shots of her 'post mastectomy' and how she's now still fighting through a whole foods diet, acupuncture, mindfullness and positivity, and more walking than she was already doing. Far as I can make out she was DCIS only, found on first routine mammo, and had surgery/recon - done and dusted in 8 weeks or whatever. I get its perhaps public service for her viewing audience that hey, here is this fit active woman and she got cancer (its pre-cancer but whatever) so you know, go get your mammograms, but it felt highly unrealistic to those of us far younger who have to fight to get past the 'too young' label and get symptoms taken seriously and end up with far later diagnoses. Also unrealistic that oh you just have this surgery and thats it. Um, no.

@Greyandrare123 I was also diagnosed almost 4 years ago as de novo Stage IV, with bone mets (hormone positive). Currently dealing with a hip flexor issue that oncology think is related to cancer, PT and I think is related to overzealous swimming. I hate having to walk with a cane again (at diagnosis I was such a mess with a massive sacral met I was on crutches for 9 months) and you really understand how difficult it is to move within London if you have an impairment. I still work, but never went back to the office as Covid started right after my treatment started and there isn't a reason to go in (especially not now!). Its not hard, never busy, and I do my own stuff on the side as well. Besides, work covers my private health insurance. Frankly I feel more or less retired and even though Im not 'out' at work on my situation, and try to make the best of the situation, its tough to let go of wanting more out of my career.

Resilience to me means riding the waves of something you have little to no control over. There was a big push at work on this and im sorry, but I dont see being resilient to terrible management decisions and sucking that up as a life skill and management totally should be called out on bad decisions. I do see with the juniors a tendency to blow a lot of things out of proportion, but then I figure I was probably the same at that age too. Get cancer, kids, then realise none of this crap matters!

@SierraSapphire a silk pillowcase sounds lovely, but no, I just have bog standard cotton ones. I'll have to google!

I'm also going to look further into biotin & the nioxin that was recommended for re-growth, as well.

My dad's just messaged that he has sent me a parcel from amazon that I'll like. I'm now wracking my brains trying to think if there's anything I've mentioned when we've been talking over the past few days..🤔

I have studied resilience, and it is clearly largely a property of your childhood experiences, and your adult ones too to a lesser extent, and the support that you have from your family or other social group, not something that you get from sitting alone at home being berated by management! There’s also evidence that in children who are considered resilient, there are physiological strains such as high blood pressure. I’m somebody who probably would be considered resilient, I’ve had loads of crap happened to me in my life but managed to be relatively successful, but here I was with cancer which I think was connected to carrying on and carrying on beyond what my body could cope with because my mum always told me I was a “coper” - as she was when she put up with my dad’s lack of emotional regulation. So definitely, eye rolls from me when anyone talks about resilience!

I am another who can relate to endurance as a concept during my treatment. I just have to get on with it, there’s no alternative. And any ‘positivity’ is mostly down to sheer luck that my side effects haven’t been as bad as they could have been. DH and I have a little in joke where he says ‘you know what you’ve got? Bouncebackability!’ It’s stupid but makes me laugh.

I had my 3rd infusion of Oxaliplatin yesterday. And discovered why the morning appointments are so prized. There was a tea and biscuits trolley, a lunch trolley and an art engagement volunteer. I politely declined the last one as I’m not very arty and I had my book and DH to keep me company. For afternoon appointments you get nothing apart from a paper cup of water. I’m booked into the morning for my 4th (and final) one! I’ve started my Capecetabine tablets today so the diarrhoea should kick in tomorrow or Saturday. I saw my Oncologist’s registrar yesterday and she had a panic over my diarrhoea and was recommending delaying my treatment but my very sensible Oncologist overruled and said I was fine to carry on which I agreed with. Endurance!

@SummerCycling I think I mentioned before that I started in the NHS system in a big specialist London hospital and how arduous and terrible the process was. I had scans at four different hospitals in at least two trusts, with a progressively weakening leg and increasing pain. Not one person in the THREE MONTHS from GP to treatment starting said hey you know what, that looks pretty bad maybe we should deal with that. Someone finally noticed when I couldnt bear weight for a week after my first zoladex injection and I called it in, then I got yelled at for not calling sooner and using crutches that hadn't been prescribed. After a year of seeing the drift of things I said screw it and went private.

I am at the Marsden now, more in order to have regular consistent access to a top oncology researcher than the amenities - this is long game, I need a tactician with trial knowledge on board. That's what insurance is certainly paying for, otherwise its more or less the same pills/treatment pathway at the moment (although they were able to run genetics the NHS wouldnt). I still end up waiting in the day room, or at the pharmacy, waiting rooms are busy for private patients too, there aren't enough complementary services, I wouldnt say you get THAT much more time, and the hospital itself is really quite small and more NHS-y than private (unless you go to Cavendish Square for day treatment and then its like a hotel). Post surgery was, Ill admit, pretty primo though - the food is all fresh made on premises and the room was nice once I got to it, they had/have a bed shortage too so I got parked in critical care unit for two nights instead of just one.

I've just realised my posts are all very "me, me, me" and mostly image related. I hadn't realised these things were as important to me as they obviously are!

@SierraSapphire that would track with my life experience as well. However my mother had just as many challenges in her life (including a sick mother dying young) and she's never been ill (although she and my uncle are both extremely particular about eating and exercise). She's pretty resilient and just 'deals with things' and moves on, although does have extreme aversion to hospitals which is understandable I suppose. The message I got growing up was well, no use complaining, the only way out is through so just go do it. Its served me both well and poorly I suspect!

@Remaker I start cape on Monday evening and fully intend to ask for some loperamide as part of my party pack. Big D is one of my side effects for everything, and goodness knows the price of Imodium these days is insane! Could you check back in with how things are progressing over the first few weeks? Ive got creams, bland food, popsicles, squishy shoes, hand and foot gloves, and a cleared schedule for three weeks to get this dialed in before I have summer fun commitments!

I went to the Royal Marsden privately (no insurance I just paid) for a second opinion because I thought my team had got something wrong, which the RM confirmed that they they had, but I got the impression they were really stretched, and it was really difficult to get any follow-up, I don’t know if that’s a general experience or whether I was just unlucky. I asked if I would get any thing different, threw them in terms of treatment, and I said no, but like Herbal it was the knowledge I was after, the woman who I saw was involved in writing European guidelines on the treatment of my cancer, which my team at home refused to engage with.

I've got my very first 'friends just don't get it' post. I've had 2 lots of cancer/treatment in the last 3 years and I'm now on tablets that will hopefully keep it at bay for a long time, but God knows what they will do to my poor battered body.
I try very hard to live with my stage 4 diagnosis but I do know my limits. A group of friends have organised a hen night for another friend. They started organising in February when I was going through chemo and could hardly see the end of the week let alone 6 months ahead so a lot of the planning went over my head.
I thought it would be a nice meal, a few drinks and a laugh with old friends. But it seems a full on weekend has been planned with much drinking and festival style antics. The lisdeflores of old would of been all over this but I'm not the person I was and I don't think friends should expect me to be and maybe some understanding of what I've been through would mean more than all the ' brave warrior' shit.
I'm knackered looking at all the what's app messages I just can't do it. When I expressed my concern about keeping up all I got back was 'You'll be fine' based on the person I was. I'm really upset at not being able to be there for my friend and feel very excluded people don't understand chronic illness.
Sorry for the rant, has anyone got any advice? I want to explain this to them without sounding passive aggressive. I want understanding not sympathy x

@HerbalRefreshment of course, no problem. The first week of my cycle it’s a bit hard to unpack whether it’s the infusion or the tablets causing side effects but the 2nd and 3rd weeks it’s pretty clearly the tablets. I wasn’t going hard enough on the Imodium so I will step it up this time and take 2 capsules at the first sign of diarrhoea and another one every episode after. They said if I get to 6 capsules without relief to call and they’ll admit me for IV fluids and stronger anti diarrhoea meds. Hoping to avoid that. I could only get a pack of 20 Imodium from pharmacy for around AUD$9 (£4.50). My oncologist prescribed me 120 capsules which was $30 (£16) which hopefully will last for the rest of my treatment. I eat a reasonably bland diet due to having most of my colon removed so I can’t handle fibre or spicy food (yet!). Gloves and bed socks are essential (bearing in mind it’s winter in Australia). I didn’t get any pain on the soles of my feet until the 2nd cycle and it lasted about 4-5 days. I checked my symptom diary for last cycle and I had diarrhoea day 4-8 and on and off day 14-21. Day 9-13 I had bad back pain when pooing but that could be related to my surgery not the chemo. I’ve had no cramps with the diarrhoea. HTH will update any changes as I go.

@lucysmam I just woke up from a nap and DH said ‘umm your face?’ raced to bathroom and I look like I’m sunburned! Bright red. And my chest too. Glad I’m not seeing anyone outside the family today!

@Peppapigboresme welcome (again). Grade 3 invasive ductal and lobular stage 3, strong hormone positive, her2 negative here. Mastectomy and lymph node clearance almost 3 years to the day ago. Just a mention about the MRI. Nobody told me what to expect, so I was looking round for candid camera. They had me tape cod liver oil tablets to my nipples, and in the rough area of the tumour. Apparently it makes them stand out more on the scan. Now, am I being unreasonable, but if you are reviewing breast scans, perhaps you should be able to spot a nipple? 😂You then lay on a bed,(tray) with a head support like you would have at the beauticians, and your boobs dangle through gaps in the table. The radiologist (?) will then furtle under the table to get your boobs in the right position. Told my husband this, and he's considering a change of career! It may not be the same everywhere, but thought it was worth mentioning 😀

@Whattodotomorrow For scalp problems, Moogoo do a scalp care cream. I haven't used it but did like many of their other products. They usually do a discount if it's your first order with them.

Hi all. Just got results of pre-surgery (pre any treatment) full blood count and I have very high neutrofils and a very high neutrofil to lymphocyte ratio. Also somewhat high WBC. Has anyone had such results pre- treatment for breast cancer? I am triple negative. From googling, a high NLR is a bad prognostic factor..