Cancer Support Thread 85 - Hoping for a positive 2023

[AGreatUsername]

Starting a new thread as the old one is almost full.

Welcome one and all, this is a thread for those with cancer and those who are awaiting tests for cancer. We offer support, a place to rant/vent/cry and ask questions without judgement. As always maybe we can do a quick who’s who at the start of this thread for newbies.

Heres hoping for a positive 2023 for us all.

@Mycatispretty I’m a very compliant person too, it’s really out of character for me to even consider not doing what a doctor has told me to do - but I’m terrified of it as I don’t have a great history with anything hormonal. Always had depression on all forms/brands of the pill. Suicidal thoughts on the contraceptive injection which disappeared as soon as I stopped taking it. When I stopped using any form of hormonal contraception I felt so much better, the happiest I had been since I was 18 and went on the pill for the first time - and that’s what made me finally think “maybe I don’t have mental health issues…maybe it’s hormones”….then three years later I got pregnant and almost immediately had terrible antenatal depression which kind of confirmed the theory. I felt like all the joy had been sucked out of the world the entire time I was pregnant, I just wanted to curl up and hide, it was awful. It was so bad I said I wouldn’t have any more children as I couldn’t bear to be pregnant again. The thought of years of that for such a tiny potential benefit doesn’t seem worth it to me.

@WorryMcGee my advice would be to try it and see. You could very well be fine on it. Both my friends also tolerated it really well. I’m really frustrated I cannot take it as I wanted to do anything to prevent a reoccurrence. I’m now just trying to eat healthy, exercise every day and I take vitamin D3 and K2 to help with calcium absorption as I have osteopenia in my spine.
I understand why you are so angry. You’re so young and you’ve been through a lot. My sister had young children when she was diagnosed with aggressive, quite advanced 5cm invasive ductal carcinoma. She was given a 5 year survival rate of 60% but 25 years later she’s very well. She is a law unto herself and coped with her diagnosis by drinking like a fish and smoking heavily. I’m not judging- the pressure she felt at the time was immense and that’s how she got through.She’s stopped all that now and is amazed how she survived especially with her previous unhealthy lifestyle. She has long given up smoking and does everything else in moderation. She has recently met the love of her life and is as happy and healthy as I’ve ever seen her. She’s 66 but looks 20 years younger, she’s a size 8 and now and is a fitness freak. I’m really proud of her

@WorryMcGee yes I get you re the delicate balance of hormones and mental health. I would talk this over with your oncology team. Mine were brilliant with me. They gently encouraged me to take arimidex and when I was struggling they immediately told me to stop. They then said I could try tamoxifen but I didn’t have to and I could stop any time. I attempted both for 3 months each so I’m satisfied I gave it my best shot but I simply couldn’t live like that ie wanting to die because I felt so unwell. I have been off tamoxifen for 2 weeks now and I’m beginning to feel more like myself

I've just received a very good answer to my newbie question earlier so please disregard if anyone saw that. I'm sending love, light and my very best thoughts to everyone here. What a fantastic support and resource. Very pleased to have found you.

Well ive been up all night finally got out of bed at 3 and done some cleaning. Dug out a lovely Neom diffuser I got for Xmas and im just gping to set it up and pray the cats dont drag it down. Ive also got a dry cough now which is irritating. Im also more that aware that this 5-6 am is when I would normally sit outside and have a cigarette, a habit I got right back into as soon as the C word was mentioned. Obviouslt I stopped as soon as the chemo was looming. Its a bloody hard habit to break.

A Neom diffuser sounds like just the ticket @EachandEveryone I always used to be horrified at the idea of burning money but got a ridiculously posh candle for Christmas this year and it's been bringing me so much pleasure I might just be a convert :)

Must have been really hard to stop smoking. Hope you manage to find something else that relaxes you between 5-6am. Sitting outside with a really good tea - like those fancy tea pigs one - might be a good sub. But not really the same, I appreciate.

Yes its difficult with the treatments as you just want life pre cancer back. Also they start you on Tamoxifen often after chemo, at radio and at first you have effects of chemo, radio and hormone tablets together and its hard to tell what effect is coming from what. They told me chemo effects can peak 3 months after chemo and radio effects can be delayed as well (though didn't have much from radio). In my case Tamoxifen has about a 10% benefit over 15 years and about 8% over 10 years so its a big difference though there was some overlap with chemo benefit. Its worth looking at the Predict Breast model online for the exact data or asking oncologist as mine is low over 5 years like 2% but jumps. And benefit I checked just means being alive at that point.

I've not had weight gain with it or much hair loss, hair is a bit stuffed from chemo but would say Tamoxifen its maybe 5% less than pre chemo if that which is not visible. On some days I notice maybe 2 hairs come out but on most days nothing. Weight is same as before. I got very worried by stories of people putting on 4 stone in cancer treatment but did not put any on, I suspect some of that will be comfort eating and not adjusting calories to a more sedentary lifestyle. But there is a balance, if say its a cost benefit thing. I also waited until after radio to start mine and I would say that was good as I had a lot of side effects after chemo which I would have assumed was Tamoxifen but clearly wasn't as I wasn't taking it then. I also found one brand much better than another. I don't get joint pain but you can take vitamin D and calcium (or have calcium in diet) which helps with that. I did turn down the abeb... drug for 2 years as that seemed like it would make me so ill I would be unable to look after DS / exercise even though some people say reduces reoccurance by 30% but the data also looks quite unclear to me as well. But exercise cuts it 50% so if you are stuck on toilet and can't exercise its completely counterproductive.

I think psychologically I also had to tell myself I wasn't doing things and then in the end I did. I said I wouldn't do chemo, I said I wouldn't do hormone tablets and then when it came to it I did both. I think I just could not mentally cope with the thought at the time. But I can lead a pretty normal life on them, swimming twice a week, out to restaurants, looking after kids so for me the benefit is worth it but its an individual choice.

@Silkierabbit you've been through so much and are doing so well! I also read the stats on exercise and tamoxifen made me into this limp, fatigued person I no longer recognised so I thought it was counterproductive for me given the difference it made to my 5, 10 and 15 year survival (0.3 for 5 years and 0.7- 1% for 15 years).
I stopped taking them two weeks ago but I’m still suffering from nausea but the fatigue is easing. I was sleeping my life away and that’s so not me. Like you say, it’s an individual thing but it’s good to discuss on here

@WorryMcGee I declined Tamoxifen. So far, I don't regret the decision and the consultant has said that the option is always open to me. I can't really explain why I declined it, I felt irrationally angry at the prospect of taking it. I'm just recovering from breast cancer and get my biopsy results for suspected pancreatic cancer next Thursday. I'm in a mess at the moment.

Im not great tonight. I think its because I havent slept for two nights and I was just going and my brother and a friend turned up. Ive never had anxiety ungil now. I had my hair net on and my sickness bands and am so flushed. I wanted to scream. Im also not turning down the temperature on my drinks etc as I hate luke warm and I feel im going to wake up with a mouthful of ulcers. I need to ring my gp tomorrow.

Hope you get all clear Not

Each With the Pax I took a coolbox and ice lollies each session and escaped the ulcers. If you can't then GP or chemo line will be able to help.

Cat I can understand turning it down on those odds.

Our good luck continued today - 2 punctures on way to see DS in hospital so had to have a recovery truck home and abort and had already paid for that nights hotel which then could not use. See breast surgeon tomorrow but now no transport so will need to use village bus or taxis.

Morning everyone, and sending positive thoughts to everyone waiting for results or treatment this week. @TopOfTheCliff - hope your surgery goes ahead as planned.

@EachandEveryone I had lots of mouth ulcers on my first chemo cycle and used both gelclair gel and manuka honey on them. The honey was poo-pooed by my oncologist, but there have been some small scale trials to suggest it might help. They certainly cleared up pretty quickly but obviously I realise they might have done that anyway. On subsequent cycles, I've used mouth wash as much as I can and although the dry mouth has been horrible I haven't had many ulcers. Alloclair tastes disgusting but has aloe vera in it to coat your mouth and seems to help.

I have chemo no 5 this week (out of 6) so while I can't exactly see light at the end of the tunnel, yet, I am starting to see some faint glimmers in the distance. I am also worried about hormone treatment, and like others up thread am not prepared to be a shadow of myself for a small % benefit, but I am parking that in the 'cross that bridge when I come to it' category.

In the spirit of sharing positive news as well as the difficult stuff, I have just had a lovely couple of days away by the sea with friends which made me feel more relaxed than I've felt since my diagnosis back in August. I had a gorgeous early morning run by the sea just as the sun was coming up and the waves were slightly pink - magical.

Oh - and less positively my annoying chin hairs seem to be growing back, but my eyebrows are still thinning. How can that be?

That sounds like a wonderful break, pay day tomorrow and I’ve looked and seen that it hasn’t dropped this month and has still got done unsocial hours so that’s good, I need to buy a big cardigan preferably not wool but the only ones I’ve seen are in Hush and I’m not spending £79 on chemo clothes. If anyone has seen anything top wise please let me no. I’m totally paranoid about knocking the line.

now I haven’t BO since Friday should I be worried? Do you go to your regular gp for meds or go through the CNS who never seem to answer the bleep? Is there anything you recommend over the counter?

So I had my appointment at the breast clinic today. Nothing official until a week Friday, but it doesn't look great. The Dr is "worried", and wants the mass removed even if it doesn't come back as cancerous.

I had ultrasounds, then mammogram, then more ultrasounds then biopsy with the clicky needle that gets tissue out. I had the biopsy done three times in the lump, and once in my armpit on the same side because the ultrasound picked up an enlarged lymph node.

As soon as the Dr said about the lymph node my stomach dropped. That would be a hell of a coincidence, benign lump and a lymph node flaring up.

I'm terrified of needles so the nurse made sure I didn't see them and held my hand while I cried and babbled hysterically about my Uncle dying of cancer at a similar age (my earliest memories involve Uncle S being "different") and joked that I don't have time to have cancer because I'm job hunting and have 3 young kids. I must have sounded like a lunatic.

The anti sickness meds make me really constipated too, and my oncologist is annoyingly non-interventionist about it. He kept telling me to eat dried fruit. I am mainly veggie and my diet is veg/pulse heavy anyway, so if I haven't been for 5 days, I don't think a prune is going to solve the problem. I just followed the advice on laxatives on the NHS website which recommends starting with the bulk forming ones and working up through the osmotic ones etc and that's what I did, but I found the stimulant ones gave me bad stomach cramps. I take fybogel each cycle now, before I even get constipated.

@EachandEveryone try Vinted for a cardi - I’ve replaced my entire wardrobe using it as all my clothes were brightly coloured/had necklines that don’t suit my new shape/had no sleeves so you could see my armpit scar. I’ve found some lovely things for a fraction of the new price and some still have tags on!

@dotty2 your beach run sounds magical. It’s one of my favourite things. You’ve inspired me to get up early and go down to the coast as soon as this god awful joint pain goes away, I thought taxol was supposed to be easier than EC?! I’m certainly not finding that, I was awake until 5:45 this morning because of the pain in my legs and “down there” 😑 I was doing long bike rides and lovely runs on EC ☹️

Thank you to everyone who replied re tamoxifen. I have decided I’m going to have a break after radio, go on holiday, celebrate my daughter’s first birthday, hopefully do Ride London 100, and when I feel like my body and mind have repaired themselves enough I’ll make a decision then. I don’t want to go straight into another load of side effects. I had a difficult pregnancy and a c section before this, I’ve not felt “well” since August 2021 and I just need a break ☹️

@incognitodorrito I’m sorry I never responded to your replies…I’m blambing the chemo fog…thank you for the info. I’ve decided to keep the Royal Marsden appointment as any further info has to be of use. Good luck for the start of your treatment!

Wow @dotty2 for your beach run! You sound phenomenal to be able to do that during chemo. I’ve just had my first dose and feel like I’ve been hit by a bus and if this is my life for the next 6 months. Stories like yours give me hope.

I hope everyone else is doing ok.

@EachandEveryone I suffered with horrendous constipation when I was on my first chemo. The best thing to take is Laxido, it comes in sachets which you dissolve in a glass of water. It tastes quite bad so just slug it back as quickly as possible and have some plain water next to you to swallow immediately afterwards to take the taste away. Also, make it up with really cold water as that reduces some of the taste. You can buy it over the counter but you have to ask for it. It really is a juggling act as to how many to take a day but I would take 3 a day until you've been. I got my GP to prescribe a box of 30 sachets at a time and have it on a repeat now as I still take it daily with my maintenance chemo. Your GP is the one to approach for things like this, they are really happy to help and will be very understanding about it. As an aside, make sure you have applied for free prescriptions as a cancer patient as these extra prescription costs really add up, one week I had 12 items!

I’m back from Cornwall and gearing up to go into hospital tomorrow. Sadly no running on the beach for me but I had a fun time with my friends.
@EachandEveryone another vote for Laxido shots here. Take two to get a clear out then one a day as needed. I got a box each round of chemo in my goody bag so I have a useful stash now. Also keep drinking lots of water.
@WorryMcGee I found Paclitaxel hurt my joints awfully. A little man with an ice pick set about me and moved round everywhere in turn. I couldn’t sleep or sit still for the pain. The best thing was a course of gabapentin with each round of chemo.

I’m a bit downhearted about how far I have to go to catch up with my fit friends to recover from all this. But if I can get to NED again that will be a gain. Patience is a virtue!
Sending strength to all. When you are going through hell just keep going!
Top x

I'm terrified of needles so the nurse made sure I didn't see them and held my hand while I cried and babbled hysterically about my Uncle dying of cancer at a similar age (my earliest memories involve Uncle S being "different") and joked that I don't have time to have cancer because I'm job hunting and have 3 young kids. I must have sounded like a lunatic

Dont worry about sounding like a lunatic. There’s only room for one of us here and I got here well before you 😜

In fact its only a week since I surpassed myself when having a knee replacement done and I had one of my ‘episodes’🙈😊 when having a cannula fitted prior to going off to theatre. It’s like a switch goes on in my head and I start yelling stop it, it’s hurting, etc etc, even when they’re just holding my hand. My knee is the most painful thing I’ve ever experienced yet 5 days post op when my cannula needed replaced and my epidural was coming out I refused to let them replace the cannula and insisted on oral painkillers. I knew it wouldn’t cover my pain as much as something through the cannula but I’d had enough and I just didn’t have what it was gong to take to get the cannula fitted again. It’s given me a lot to think about and I’m now gong back to seeing someone to try and get over the terror I obviously still have lurking away inside me. And it’s really strange because the epidural didn’t phase me at all, neither did blood tests. But that cannula just finished me off despite not being concerned at all about the surgery.

Im due a routine 6 month check up on the 12th of Feb and I’m seriously thinking about having it delayed as I’ve heard inflammation can increase CA125 results and after my episode last week I don’t think I can handle the possibility of a raised result even due to inflammation. I just don’t know what to do next apart from try and see my Dr knowing full well she’ll only say - you really should have the blood test. And I don’t want to.

This terror we must all feel at times for various reasons is torturous.

@Top thinking of you tomorrow , hope it all goes smoothly and you're home resting very soon Xxx.

Ive had the worse news today, brain mets spread from ovarian cancer untreatable excpt maybe a bit of radiograph at local hospital which might prolong things a short while but give me bad side effects. Hospice bod been today and to say Im scared is to underestimate. Ive still not rehomed my dog.Its all a terriblle shock as I only went to private ENT for balance problems as no input from GP and indeed still nothing at all from them even though Oncology have made them aware. Im afriad some of the NHS is beyond help; Sorry about typing due to brain mets, cant be arsed to correct everything. Thanks for all the support and I wish you all the very best with your treatment and outcomes.

How awful @thereisonlyoneofme - I am so sorry to read your update. I hope that you can get some support from the Hospice. Sending you love and caring wishes. xx

Good luck for tomorrow Top - hope it all goes well.

Oh goodness @thereisonlyoneofme, no wonder you're scared. All of us on the thread are giving you a virtual handhold! I hope that your hospice contact will be able to address all your worries & fears as they do have the experience & knowledge of how to deal with people in all manner of similar circumstances. So sorry you have to say goodbye to your dog. Maybe there will be scope for visits if the rehoming is relatively local.