Cancer Support Thread 87 - everyone here is so supportive.

[LemonDrizzle10]

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Wilson If you are getting delays on NHS, rather than the process is just taking its time, it can be worth putting a complaint in via pals and cc chief exec in, have to guess email but normally same format. Mine moved from 2 month delay to next day with that, phone call within 24 hours. Just saying understand things are really difficult in NHS now but I am a mother of 2 children, 1 with special needs and terrified as cancer growing. Been told 2 month delay type thing. They then also put my 2nd op to private on NHS. And gave me choice of chemo.

Lucy Lots of us on here with breast cancer, I had a 2 for 1 deal as well but both in same breast and did the Pax. Also discovered was a bit vain, never thought I was as never into makeup or hair but the appearance going was one of the hardest things esp when people aren't as nice anymore. There are a lot of options for hats, scarves, wigs or just nothing. You can also get a Look Good, Feel Good workshop free never did but lots do and you get free makeup etc.

Not sure Summer but I had things flag in about 8 places, it made it sound like I was the walking dead when read out but only 1 of them they seemed bothered about. If they are saying a year they can't be worried its cancer. I think kidneys was one of mine, maybe cysts and lungs were scarring and they thought covid. Though there were so many I lost track. Bony Island is the only one am sure of as it was such a weird name, that was a hip thing.

Continuing on from Silkierabbit's post mentioning Look Good, Feel Better, I would only advise doing one of those if you are feeling well.

I went to one and was overwhelmed. The speed and pressure to get through it all was rather stressful, as was trying to open things in plastic with peripheral neuropathy etc. They tried to help us, but lots of us were struggling to keep up.

Then at the end the man told us all to avoid all sugar and make sure we drink lots of water with lemon every day. That was awful, I hate unwanted idiotic dietary advice from non-medical professionals.

Then he asked if anyone wanted a window open. I said yes (immune suppressed) and he joked about hot flushes and another of their team proceeded to fan right in my face. I ignored it and looked away to stop the air irritating my eyes. He assumed I was on oestrogen blockers (I am not).

The workshop was quite long without a break, so again only take part when you feel strong enough.

On the other hand, they tried really hard to welcome us and each participant received a free bag of make up. They tried to match skin tone, and when that hadn't worked for one of the group they quickly solved it in a nice way.

Overall, it's a lovely thing they offer, but be prepared for a very fast pace without a break.

Hi @Silkierabbit

Yes, exactly, I also feel like the walking dead from all the things they keep finding!

Bony Island? That is a very weird name!

The pancreas thing is some mucinous neoplasms that are currently ok, but have cancerous potential so that's the reason for the scanning. They first noticed them on the staging CT when my BC was diagnosed, so now they have several to track. A year does mean they are currently not too worried, but the scans will continue apparently because the type of cancer they can turn into is incredibly lethal, the worst of all. Fingers crossed the neoplasms haven't got that plan.

The kidney fibrosis was found incidentally on the pancreatic MRI. Absolutely, it's not cancer (thankfully), but scarring can also cause serious problems I think, if it progresses. I would just like to know really so I can maybe do something to stop it getting worse. The report did say 'minor' which is good.

Hi all. It's been a while since I posted. Her2+ hormone++ lobular and ductal BC April 20 (3 weeks into lockdown I found the lump). Mastectomy and lymph nodes clearance June 20, 18 weeks chemo, 15 sessions radio, daily tablets, monthly implant and 6 monthly infusions. Delayed DIEP flap reconstruction, reduction t'other side Feb 23. I am soooooo happy with the reconstruction. It's not perfect, and having some revision done & liposuction towards the end of the year. Being honest, the worst part was being under the bearhugger for 15 hours after the reconstruction. Up and walking as soon as they switched the blumming thing off! Happy to answer any questions anyone may have about my reconstruction. Biggest tip - work on your fitness - I cannot describe how much this helps. Nurses & physios on recovery ward would not believe I'd only just had surgery. Also helps with the anaesthetic - 10 hour op for me. Back doing strenuous exercise after 8 weeks (supposed to be 12 - ooops). Reconstruction nurse told me someone else wanted a sick note for 6 months - I was back after 6 weeks (gotta love the NHS phased return!). If I can help allay anyone's fears about the op, please just @ me 🙂

Thanks Icant that's good to know, glad went well for you. I am in mid June to discuss diep following ct.

Can I have some advice about who to call in this situation please...

I had 2 ascitic drains over the last two weeks, & my consultants said the chemo would eventually stop it filling back up - it looks to be filling up a bit again so probably needs a third. The only numbers I have are the "if you feel unwell during chemo" number, or the breast care nurse (or gynae who gave me hers in the first instance). Or, I have a call scheduled with one of my consultants on Weds.

So, do I wait for Weds & speak to the consultant, or do I ring one of the other ladies, or the unwell number? The consultant did say they'd keep an eye but I don't want to wait too long and end up carrying about a toddlers worth of excess water again - that was quite possibly the most awful I've ever felt in myself & the strain was horrific 😢

Definitely chemo line ASAP with the LucysMam Generally in chemo you can call them about anything esp at start, they preferred to be called and that sounds important to get sorted.

My breast care nurses were more normal working office hours and days so not weekends or bank holidays and you called them about surgery and general stuff. In chemo you call chemo line. In radio there was another number again.

I hope you can get that sorted quickly.

Brilliant, thanks very much. It kind of threw me a bit that I'm not unwell with it, as such, but obviously can't let it just do its thing as it wants to.

My chemo line said they want people to call with issues straightaway and when people say start to get quite ill with temp at 2am but don't call until 9am that's when they can end up having to admit them whereas if had called at 2am they could have sorted it. They are lovely. Hope they can sort it for you.

Today is a crap day. I don't have many of them but I know my hair has got to go sooner rather than later. I've got my wig and it actually is better than my normal hair so that's rather good. Yes - the soreness does feel like too tight pigtails! Someone mentioned the look good feel good session and I've got that a week tomorrow. I'm hoping that will be helpful for make up tips for days when I don't wear a wig if I'm at home. Just one of those days I think.

@mowly77 sending you hugs, that sounds so shit. I hope you can get some sunshine where you are this weekend. 💐

@lucysmam ☹️ good luck hope the chemo line is helpful.

I am twiddling my thumbs this weekend waiting to hopefully get a treatment plan at my appointment in a few days. The DC have so much going on at school atm and I also want to get them booked into summer clubs, plan when they can stay with family etc, and just... can't do any of that or promise that I'll be at a school play or performance, because I have no idea what treatment, when or in what order. I send out work emails saying "we'll be sending you x work by y date" with no idea if I'll actually be around to do it. Very unsettling!

@Icantfindanewname

You are very inspiring! Amazing 😊You are doing so, so much better than I am.

Can I ask, how old are you and what stage was your cancer? Did you have any pre existing conditions or effects from chemo? Your 18 weeks of chemo, did it include EC chemo?

As you are HER2+ do you mean positive as in +++, or low positive? It doesn't sound as though you are on Trastuzumab or Pertuzumab?

Well done, though, you are doing so great!

@lucysmam

As the others said, I'd personally call the chemo hotline for that.

I hope they can get it sorted quickly for you.

Aaaaaargh just typed a long post and poof it's gone 😤
@SummerCycling
Apologies, Her2-
46 at time of diagnosis, unfit but nothing pre-existing
3 lymph nodes had it in, but 22 removed
Initial lump 35mm with satellites to 110mm
EC and packlotaxil - would have been docletaxel but I couldn't tolerate the white blood cell boosting injections. Apologies for spellings.
Lost hair as cold cap didn't work (bonus, no shaving legs or pits for a while)! I have a couple of lovely wigs in my wardrobe.
Slight nausea a few nights, sorted with metroclopramide. I used to drop kids at school, go for chemo, then go and collect (2 at primary and a husband who works 12+hour shifts)
Had horrific pins and needles about 3 months after chemo treatment but it was soon sorted by 3 weeks of low dose amitriptyline. They were a nice surprise as no one had mentioned it may happen! Still got slightly brown and thickened toe nails.

Have I missed anything? If so, or anything else, please just shout up x

I finished Ride London 100! Shambolic event and I wouldn’t recommend it (started over a hour late yet they wouldn’t give us that time back, no water from mile 25 to mile 73 as they shut the 63 mile welfare point despite the late start…plenty of marshalls there and water but they wouldn’t let us have any of it) BUT 12 weeks post chemo, 2 weeks post radio and I finished my 100 miles in 8:01:47. AND the best bit is I never have to do it again 😂

Hi everyone I posted on the last thread but now can’t find it and reply to everyone, sorry! Thank you to all who replied and I think I do need that rage room as I am feeling half angry and half despondent. If it wasn’t for my small kids I seriously would debate whether to even bother with treatment as I feel like my life is just going to be worse going forward…will be having a stoma in the next few weeks (anal cancer plus Crohn’s) then will need chemoradiotherapy as well due to the bastard cancer spreading into a couple of lymph nodes. I’m sorry for everyone else going through this shitty disease, sending you all good wishes on a sunny bank holiday.

@Brunonononooo I have Fallopian cancer (stage4) I also have Crohns when I went into surgery I fully expected a stoma I was even measured up for one before the op. However the operation was completed without the need for a stoma. I don't want to give false hope and obviously we have different cancers but sometimes it's not until the surgeon's start the operation that they see the full extent of the job that needs doing. I haven't been able to restart any meds for my Crohns but have been very stable Gastro wise, this may sound like small comfort but unstable IBD is a miserable existence. I hope it doesn't sound like I'm trying to minimise your situation and I fully understand the need to break things in the rage room.

Congratulations @WorryMcGee that sounds like a great success in the face of terrible race organisation. X

Congratulations @WorryMcGee What a fab achievement (but a shame it was such a shambles).

Well done @WorryMcGee thats amazing! My DSD and her partner rode it too and took 9 hours despite being fit young and energetic so you should be very proud of yourself. They said the organisation was diabolical too.

@Brunonononooo sorry to hear you are struggling. I think if I have learned anything from my interminable struggle it is not to look ahead but just to stay in the moment as much as you can. Things you were dreading turn out to be easier and unexpected new challenges pop up and derail your plans.

I am being knocked sideways by fatigue due to Capecitabine. I have so much energy usually and so many plans that to be drained and lifeless is a real shock. I was up on the allotment weeding and planting spinach and found myself lying on the ground unable to get up at one point. Luckily nobody saw my ridiculous writhing as I got onto hands and knees. I am having to seriously reduce my ambition for the summer which is making me a bit miserable.
Today I have some bedding to plant so will aim to do that for thirty minutes then have a coffee. Small gains!

@Lisdeflores thank you - I have already had confirmation that it will be a ‘defunctioning’ stoma before I can even start the chemoradiotherapy as otherwise I won’t be able to tolerate the treatment. My Crohn’s is worse in the rectal area with loads of scar tissue, then apparently radiotherapy causes worse problems with strictures so that’s definitely happening now. I appreciate your help though! Really glad to hear you have been stable gastro wise though that must be a relief when you’re dealing with the cancer!

@TopOfTheCliff I think you’re right but I am even finding that hard because I have no symptoms, feel totally fine and can just carry on as normal (for now at least) but will be putting my body and family through hell to get rid of the cancer and end up with probably a lot of awful side effects, it all seems backwards. I am sorry you are struggling with fatigue - really hope that improves soon and you can get your bedding plants sorted!

Yeah I remember struggling with that @Brunonononooo, it’s really difficult to get your head around.

I forgot to come back and update yesterday - the chemo line said I was absolutely right to call them to check (so thank you for pointing me in the right direction), but that they're unlikely to drain again at this time as the hope would be the plicataxel would stop it & resolve it. I'll mention it to my consultant on Weds just to be 100% but that's sort of what I expected to be told. And, tbh, I'd rather deal with it that way if possible as the first drain was so uncomfortable.

@WorryMcGee that's fantastic and very inspirational!

@Brunononono this was something I struggled with before starting chemorads for cervical cancer - I was feeling totally fine and healthy and the treatment is/was going to make me feel worse. I also felt guilty about the worry and stress it was causing my family, the way we couldn't plan much because we just didn't know how it was going to be.

I'm heading into my third week now and so far physically so good - I still wouldn't even know I was ill or even having treatment if I wasn't going every day so so far im getting off lightly. It's a cumulative type of treatment so I'm sure I will start feeling worse but at the minute I'm taking each day that I still feel relatively normal as a win. I know you've got added complications with the Crohn's and stoma but I guess the old adage about buying trouble before it's on sale is true. So far worrying about the impact of treatment has been worse than the actual treatment for me.