Cancer support thread 90 - still the best threads no one wants to be on

[LemonDrizzle10]

Last one filled up quickly!

Thanks @RedRosesPinkLilies, I’ve talked about it before, it was pretty unbelievable! I have it all recorded but decided in the end that I didn’t want the stress of going through a complaint, but basically my situation was unusual and I was more up to date with the recent research for my fairly rare situation than she was, and instead of looking through the new guidance that I put in front of her or saying she’d look into it she just got annoyed! They never said anything to me either about the RM letter confirming I was right and finding a second cancer. It’s shocking really but I don’t believe complaining will make any difference at all. It is nice though to have someone else be part of your “story”, whether that’s shocking or routine. My friend was amazing and I’m now paying her back in help after she’s broken a bone.

@SierraSapphire thanks - that Otter app sounds really useful as I don't process information very quickly when I am just told it verbally so being able to refer to a transcription will make a huge difference.

Thanks all for the advice. I did whatsapp a friend earlier asking whether she could help me out with something important on Tuesday but she didn't read the message according to the whatsapp info so after a couple of hours I went back and deleted it anyway. I think actually I will be better able to deal on my own. Like @dotty2 said, having anyone with me will feel like I need to be aware of and care about their responses aa well as my own and I don't need that. I will make sure I have cash on me for a taxi home.

Also @SierraSapphire how horrible that you had that experience - hopefully that kind of response is very rare!

Hi, all. I’ve just discovered this section. I’m dealing with breast cancer. I’ve had it twice a year apart. I’ve had four surgeries and I now am flat on both sides. No chemo. No rads. I’m taking an AI and I’m struggling with hair thinning. I’ve been on it nearly two years. Has anyone got any tips for something that might help?

@HohiyiKozbevi I did take my husband as I was told to bring someone but that was after being told they were concerned and if it was positive, what would happen. So on the day, it didn’t feel like news and more information was needed to decide the next steps. I felt quite numb at that point and but there weren’t many questions to ask. Good luck.

@weegiemum I’m sorry you have another wait, I too was given an indication before the actual results came in and it does make the waiting harder. At some point, I did ask about the danger of waiting for another 2/3 weeks for the treatment to start and my consultant reassured me that it wouldn’t make any difference to the outcome. I assume that they will be testing the biopsy for its type and then potentially its response to hormones etc. Even privately, these tests took two weeks to come back. It’s very difficult, I felt exactly as you do.

My first chemo cycle was on Friday and DH stayed with me, which actually was very helpful to me, I was very nervous. It was ok, I felt so much relief when I left though, I’m not sure what I was expecting! Can I ask, in terms of side effects, does each cycle stay roughly the same? Or at least, from cycle one to cycle two (3 weeks time)? DH has a trip to the rugby planned and I don’t know if I need him at home. I can see how this cycle pans out this week but am not sure if that’s the precedent or not?

@AGreatUsername I’ve been thinking about you and the difficult news you had last week. I’m so sorry, it is just so rubbish. I also have friend who has found success with newer treatments and I am so pleased to see the progress being made. There is hope, try not to lose it, we are all with you ❤️

My cycles were pretty much the same @BreakfastClub80 - I felt slightly more tired towards the end, mine were every three weeks too, but the basic pattern was the same in terms of worse days and better days. It was good to look back in my diary to see the pattern.

@wellandtruly , sorry to be dense, what's an AI?

I was recommended Nioxin system 2 for my post-chemo hair, & it does seem to be growing quite well. And, a friend suggested one her son used to help with his hairline but I can't remember what it was. I was going to message and ask her tomorrow at some point.

No idea if these things work but 🤷‍♀️ it doesn't appear to be having any adverse effects!

My thighs are still soooo tired I'm wondering if they're not shouting at me for Weds night 🤔 I have no idea any more really!

I forgot to come back with my list of meds to ask about too - I'll have to do it tomorrow whilst reading the info sheets again.

Evening all - I’ve been quiet for the last couple of weeks as I deal with chemo exhaustion. Also the nausea seems to be increasing with each cycle.
We had family staying this weekend and just maintaining conversation was shattering!

Welcome @wellandtruly and I am impressed you managed to escape chemo despite two breast cancers. I’ve had two in two years and had two courses of IV and one of oral chemo but I’ve kept my boobies.
Hair thinning may be due to the AIs or it might be worth getting your ferritin (iron) and thyroid levels done as that can cause hair thinning too.
@lucysmam do you mean Minoxidil? Men use it for hair thinning but the effect is only while you are using it.

@Florabritannica time for a nice rest now the visitors have gone. Have you got some domperidone or something you can take for nausea?

@BreakfastClub80 I think the first cycle I had was the worst as I was fit and well and they poured poison into me and my body went into shock. The following rounds were just topping up the poison so not so much of a change. I felt quite well between three weekly doses. Not so easy with fortnightly ones.
I found it quite cosy when DH left me curled up with the TV and books and snacks and cordial for the day.

Inspired by my visit to the allotments yesterday I have cooked a veggie chilli stew and made some borscht with all the veg I have stashed. I feel very virtuous as I am following the Zoe quidelines and having seven colours of food a day and 30 plants a week. I haven’t had my results yet but it won’t be too long now. I’m fascinated to see how chemo has affected my gut biome. I think my energy levels have gone up a bit too.

Sending strength for the week ahead xx
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@wellandtruly welcome to the thread. I’ve had breast cancer and a bilateral masectomy - my hair went with chemo but I’m taking biotin supplements and it’s growing back really well. Best wishes :)

@TopOfTheCliff not in the Nioxin that I could see - maybe in the stuff my friend recommended though. In which case, it won't be any use. Would the hair just come out again? I'm mildly curious now 🤔.

Your stew sounds tasty 😋

I’ll be interested to see how your microbiome is @TopOfTheCliff - mine was good in mix between good and bad bugs but not so good diversity three months after chemo. Though I think they’ve just changed the scoring and I’m no longer a member. Tim Spector said at the end of the most recent podcast that the microbiome was the most important factor in whether immunotherapy works for cancer, I know they’ve found that with the Akkermansia bug, it feels like it’s all coming on at a fast pace. Microbiome Medics had a series of three podcasts on the microbiome and cancer, the last one had an NHS consultant I think from Cambridge talking about their approach. I find it fascinating!

@wellandtruly I am taking AIs and another long term drug which can also cause hair thinning. However I also lost it all with chemo and had it bleached as it started to grow back and the texture is very different so it’s difficult to know whether it’s thinner or not. I had long wavy hair before and now it’s short and tousled. I’ve had loads of compliments and people saying I look younger. Maybe they’re just being nice. However I’m going to keep it this way as it will work better with thinner hair long term. Can you talk to your hairdresser about options? I’d never dyed my hair before but mine said some dyes soften your hair and give an impression of fullness? I know it’s not easy to accept you might need to change a look you liked because of the bastard cancer. So I’m sorry if that’s not helpful. Maybe it’s a bit easier for me as I was starting from bald, if you see what I mean.

@dotty2 I think you have summed it up well there. Losing all your hair and growing it back feels different to coping with thinning hair as you feel grateful to have any hair at all. I was looking at old photos with DM last week and I went from a full on Anneka Rice blond bombshell at 20 to Clare Balding severe short crop at 25 ( because of a controlling boyfriend!) Since then my hairstyle has wandered from shorter to longer and back again. It’s hard to say which suited me the best. I think I’m going to grow out the curls and go longer just because then it doesn’t look like a cancer style.

My hair loss seems to have slowed down but that may be because I’ve now got so little to lose. I’ve got my last EC cycle this week and then it’s on to Paclitaxil (?) which I gather is more aggressive on hair. So far I’ve kept my eyebrows and eyelashes which is a comfort.

This is mine now. I lost it all and chemo stopped end of July. It used to be thick long curls but I dont think it will be this time.

In my appointment today, surgeon started by saying, "so you're on oestrogen blockers?" I pointed out that my cancer is hormone negative, Her2+++... I have been treated there for this cancer since June 2022 and they still don't seem to have noticed it's ER and PR negative.

The two nurses kept chatting to each other while the surgeon (locum from the Marsden) and I were trying to talk. I found it immensely stressful, uncaring and disrespectful. I don't know what nurses they were, whether they're from my local hospital or Marsden. They weren't CNS MacMillan nurses, they were wearing a different colour uniform plus the CNS nurses have always listened in, never chatted amongst themselves.

Surgeon and one nurse also had coughs. I am still rather immune suppressed so hope they didn't infect me with anything.

I feel like never going back to the damn place.

Surgeon did actually tell them to stop talking in the end, that she couldn't concentrate with them constantly chatting.

Surgeon told me that nobody reads an End of treatment summary, so don't worry that it was full of mistakes and that the nurse who wrote it is lovely and wouldn't have deliberately made those errors. If I want it corrected, contact the nurse who wrote it. I emailed the nurse. They weren't minor errors, they were about what parts of my body had radiotherapy, the number of days, and it didn't mention lymph nodes anywhere, despite me having multiple cancerous nodes. Loads of other mistakes too.

I am so fed up with the NHS.

@Florabritannica

I lost all my body hair on EC chemo but it started growing back at the end of paclitaxel / Abraxane. Could be different for other people.

@SierraSapphire

Sorry that oncologist was so awful to you. I can easily imagine it though, unfortunately.

@HohiyiKozbevi

If there's someone who you'd like to have there with you, then I'd ask that person. If there isn't, then I'd record the appointment.

I've been to loads on my own, and some with my husband. I don't think it matters, it's simply what feels right for you.

I knew I had cancer several weeks before they finally gave me my one-stop appointment at hospital, so it wasn't a 'you've got cancer' moment anyway, but I was taken aback at the extent of it, and how they were saying I'd need a lot of support etc. Also when they told me it was hormone negative because I know people with hormonal breast cancer have a much better prognosis. Even so, I didn't need anyone with me - as long as the staff are humane. My surgeon on diagnosis was lovely.

Good luck, I hope things go ok for you. Let us know.

@EachandEveryone

Your hair is growing really quickly so soon after chemo! Mine was your length after about 5-6 months.

That’s terrible @SummerCycling - I had two midwives complaining about work over me when I was in labour and, surprise surprise, my baby got stuck. I think my consultant forgets I had ovarian as well as endometrial cancer and I have to keep reminding him. It’s bad. Luckily I’m on top of the research myself, but how much must get missed where patients aren’t. It’s not good enough.

Gosh, thanks, all, who responded about hair. I’ll have to take some time and get to know your usernames! For those that asked, I didn’t have chemo, because chemo has no effect on my type of breast cancer. I think I’ll look out for biotin.

@SummerCycling That sounds terrible with those hospital errors. I’ve had lots of hospital and GP errors, wrong information, poor communication, etc. It does make me have no trust in anything.

@SierraSapphire

Good grief, I'm sorry to hear that. It certainly isn't good enough, very far from it. Poor you and your baby, it's so awful if it was in a TV programme you'd think it was unrealistic. And your consultant forgetting your cancers is a complete disgrace, such total incompetence.

I'm still stressed out that those two nurses were chatting throughout my appointment and the surgeon didn't tell them to be quiet for ages. I burst into tears at one point, I just couldn't stand it what with their attitude and the mistakes in my end of treatment summary. Of course then the surgeon asked if I was on anti depressants for my anxiety. Ok, so put it all on the patient then, as if it's nothing to do with their own behaviour / mistakes 🙄I am indeed anxious, but would be at least 50% less so if they produced accurate documents and didn't stand around chatting in an appointment.

@wellandtruly

Exactly, it makes it impossible for us to trust them doesn't it. Sorry to hear you also experienced so many errors.

Surgeon was actually ok, did try to help me with everything I needed, just not about the end of treatment summary. Simply saying nobody reads it anyway and if I want it corrected then contact the nurse who wrote it - sort of excusing it by saying the nurse is lovely and the mistakes weren't deliberate, is depressing when you think our lives are literally in their hands.

I think the people in the NHS are so used to serious errors they don't even consciously notice them any more. So even patients dying due to errors - ignore or cover up, then move on asap.

I so wish I had private insurance. I doubt there'd be two nurses chatting throughout an oncology surgeon appt with a patient in a private hospital. It was horrible. It's the only time I've experienced it so hopefully it's rare.

Urgh!

I've been off HRT for 2.5 weeks now and today has been a horror of hot flushes and peri menopausal rages.

I know that this is better than bc but it's not very nice today and I've cried a couple of times too. I think the last couple of weeks are catching up with me!

So sorry - and horrified - to hear of people’s experience of incompetence, unprofessionalism, and lack of respect.
And v impressed with your hair growth, @EachandEveryone!
I have some good news today which is that I had an appointment with the oncologist who examined me and said that the tumour has shrunk significantly. Am booked in for mammogram/ultrasound next week which I hope will confirm this.
Still exhausted though.

On errors, it happens in private hospitals too. I am on my partner's workplace health insurance and going through the process privately. There have been some errors on summary letters, which I have asked to get corrected. As a patient, one has to keep on top of things unfortunately.

I have also had treatment and am being followed up for other conditions on the NHS (which are not covered by insurance as they were pre-existing. My partner only signed up for health insurance a year ago - fluked it for this cancer diagnosis). The main difference I have noticed so far between NHS and private is time. You wait a lot less privately. Appointments and scans are booked more quickly. Also, you get to see consultants mostly. I have had some dreadful experiences with less experienced doctors in the nhs (reading the wrong notes, not being able to access scans, inability to answer questions, etc.) but also some very good ones. When it comes to consultants, it is generally the same ones that work in the nhs. All of the consultants I have seen privately are also nhs consultants. So, if you see them on the nhs, they are no doubt just as competent. In terms of record keeping though, I do read everything very carefully because they can miss things and record things incorrectly. Always worth being clear, repeating important points and double checking summaries and letters.

A disadvantage of health insurance is having to battle with insurance companies to pay for certain things. It is an extra hassle of having to get every single thing pre-approved. Standard things tend to get approved, but anything more experimental or expensive can require some insistance against insurers trying to get themselves out of it.

@Florabritannica that's good news! Brilliant to see 😊

@SummerCycling there are several minor errors in all three of my discharge summaries from the ascitic drains. I queried the first two & pointed out the errors in the third but all the responses were a bit meh 🤷‍♀️

Makes you wonder what other mistakes are being made reading all your experiences!

@weegiemum I have just had a lightbulb moment reading your post - I wonder if my amazing moods of the past few weeks are hormonal! I've been stomping about muttering away to myself 🤔