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

[LemonDrizzle10]

Last one filled up quickly!

@AGreatUsername I hope the wait doesn't drag too much & it shows nothing to worry about.

That's really interesting about the loratadine. & it's so cheap too!

I'm just doing a couple of wash loads before we head out to see Barbie, and go for cake afterwards. Hopefully the weather brightens up a bit!

Have a good Saturday all 🙂

Thanks for the new thread!

@SierraSapphire I too have read that article about the antihistamine. I’m taking it daily now but mainly because on another forum the ladies there suggested it helps reduce the bone and joint aches. I was wondering how you got your dose of melatonin? My husband, or one of his colleagues, used to often go to the States and bring me some back but they no longer need to travel there now. Do you have a reputable online site?

@AGreatUsername thinking of you during this time. 💐

@Whattodotomorrow I use Piping Rock or Biovea, never had a problem although I guess theoretically you could, they seem to be the two most commonly recommended places in other groups I'm on.

What antihistamine is good to take?
My joints are absolute agony right now.

@LemonDrizzle10 I think different antihistamines work for different people. Loratidine seems to be a good one judging from the thread here. It tends not to work for me - at least not for my hayfever. For joints I don't know. It is sometimes about trial and error to see what works for you. We are strangely different in how our bodies react to things sometimes.
Speaking of unusual reactions (my specialty it seems..), has anyone had a light cough from chemotherapy? Not like breathlessness, coughing, etc. of a kind that would warrant a call to the helpline, but just getting an urge to cough when swallowing something cold or hot, or getting a gush of wind in the mouth suddenly.

On investigating further it seems that loratidine is primarily broken down by the liver, whereas citirizine which I currently take, is broken down by the kidneys. Given my liver function is abnormal I’d better be cautious and stick to my current medication. I’m seeing a liver specialist this week so I’ll see what he says.

It did set me off googling about immunogenic tumours. And I remembered that my oncologist was telling me that bowel cancers caused by genetic mutations like the one I have generally have better outcomes than non-genetic bowel cancers. They don’t know why but the theory is there is some kind of immune response triggered in people with the mutation.

And it might be completely unrelated but did anyone else find their hayfever completely disappeared while on chemo? I am the person that is constantly sniffing, blowing my nose and coughing all year round. But while on chemo I had zero symptoms- except for a runny nose for 2 days after my infusion. I imagine it’s because the chemo attacks inflammation? Now that chemo is over I have itchy eyes, runny nose etc.

Morning all,

Had 2 scans last week and my consultant was supposed to be on 25th. They called this morning as apparently she is on leave next week.

I don't think this is good news. Am a year post treatment.

Oh hello I have found you. I don't have a full diagnosis yet, tumor found in colonoscopy (following blood in stool that eventually got often enough that I finally got around to talking to GP about it) awaiting CT scan to find out how bad. I don't feel ill at all and haven't shared this info with anyone but DH so far. Obviously Mumsnet is the best place to hang out whilst not really knowing what's going on.

Keeping fingers crossed for you @JlL2013 . Try not to read to much into chopping changing appointments, my hospital are a law unto themselves for it.

Cheers @ClashCityRocker, yeah it could go either way at this point I guess.

I had mastectomy in Dec 21 and waiting for reconstruction ever since. Just get a text which says important message from NHS open immediately. Open it and it says if don't respond to this survey can kick you off waiting list. Nice. It asked do you still need operation as you might not now and would you go to another hospital if quicker and what distance. I put yes and shortest option which was 50 miles. But now thinking was that wise. 50 miles includes the whole of London I think and what if ones with short waiting lists are short for a reason. Though they already moved me for first two ops, one to a local community hospital which was like back to 1950 but nice and one private paid by NHS which was great. I'll take that again but would like some say. I don't drive either so would be DH.

Welcome HohiyiKozbevi and sorry you find yourself here. I had breast cancer, a popular choice of cancer on here, but hopefully others will know about your cancer.

@isaxx thanks for the info.

All my achy joints and hay fever disappeared while on chemo @Remaker.
Oncologist said it’s because the chemo is anti inflammatory - I’m now hobbling round like a 90 year old with my sore feet and knees.

Welcome @HohiyiKozbevi - I also put off going to the dr for a long time about my cancer (breast - you'd think a lump would ring alarm bells). Hoping you get some clarity soon - it does help to have a plan, even if it's a tough one.

I am feeling utterly miserable today. DD1 went off to uni on Saturday and is hating it. She's been on the phone in tears every couple of hours yesterday and today. She is desperate to come home, but I know it will get better if she can tough it out. The trouble is because of strikes she has another 2 weeks before things properly start academically so she has v little to take her mind of her homesickness. She was so strong during my treatment (I was diagnosed at the start of Y13), but on reflection I can see that it's made things harder for her. As well as all the worry about me, I recognise now that I over-compensated for being ill by mollycoddling her, as I was so desperate for her not to feel I wasn't still the strong person I'd always been. So she's not as well prepared for looking after herself as she might have been. She has always struggled with transitions and a lack of structure - and she has both in spades now - but I can't help feeling that me and my bastard cancer have made things much worse. I'm feeling totally wretched. (I have posted on the uni starters thread about it as well, in the hope of some sympathy/wise advice there.)

Welcome @HohiyiKozbevi this is the worst but waiting for a plan. Try to stay off Google and rant away all you like here.

@JlL2013 the secretaries have no idea of the agony they inflict on us. I try to tell them every time I have contact with them.

@dotty2 how agonising for your and DD1. Is there a freshers week she can get involved with to keep her busy and make some friends? Has she a hobby she can look into pursuing at Uni? Anything would help right now.

All quiet here. Flood damage below us but we are on top of a big hill. I went to a talk by a cosy mystery writer and now I’m reading all 20 of her books. They are a pleasant distraction.

You were right @ClashCityRocker and @TopOfTheCliff. Got the one year all clear. Why they couldn't tell me over the phone but am not going to dwell on that!

@JlL2013 that’s brilliant news!

Thanks @LemonDrizzle10 I was so surprised

@JlL2013 Wonderful news, mazel tov! 🎉

Ooh @JlL2013 we love celebrating good news! Coffee and cake needed
Does that mean you get a break from Cancerland for a while?

I had a revelation just now. I was on another forum for a healthy eating project and listening to people wittering. No lives are at stake there it’s just for good eating habits. The number of people who get themselves worked up wanting to know what will happen in the future exactly is weird. If they just wait two days they will get that information in a routine message but no they want to know now!! It seems to cause lots of angst for no good reason. Then I realised this is normal for many people. Will my train next week be delayed or not? Will my child be in a tutor group with his best friend? So when these people get a suspected cancer they go into overdrive. It’s no good saying “be patient, the universe will unfold as it should whether you have prior notice or not”.
If you are somebody who NEEDS to know the future then examine why that is. Is it your anxiety needing managing? Things will turn out the same whether you have a few days extra notice or not. That’s not to say that waiting isn’t excruciating but it’s the wait that is hurting you not the content of the news. I think this knowledge has made me more Zen and relaxed even though there is a small corner of my brain still fidgeting away wanting to know When is the Bone scan and What will it show and Have I got secondary cancer?
Back to our mantra Don’t borrow Tomorrow’s sorrow. Stay in today. What will be will be. Etc…

@JlL2013 fantastic news, so pleased for you!

@dotty2 that must be a worry, but remember your daughter must feel so close to you to be able to call so I don’t think you should feel your illness has made it worse. I’m sure many students are having trouble adjusting especially if the courses don’t get started quickly. Are there other students around her that she could meet with? Or could she try and meet others on her course? I think things will be very different once her course starts so the main aim is to make sure she’s there for that. Could you visit maybe?

@HohiyiKozbevi welcome, I just joined last week with breast cancer and the waiting game is a special place to be! I hope things move quickly for you.

@LemonDrizzle10 if the chemo can sort my feet out I’ll be happier than I thought for a few months….silver linings eh?

I’m waiting for confirmation that I’ll start chemo on Friday so had my flu jab this morning and have booked my Covid booster for tomorrow.

I’m also waiting on news on our hearing dog puppy. He’s been with us since Nov 2021 when he was 8 weeks and has recently qualified as a Hearing Dog. Was matched last Christmas but the recipient now isn’t sure if they want a Labrador so we’re watching that space too. He’s so lovely but he is a big puppy at times and along with our own dog, will be more work when I’m not feeling quite the thing.

Hi there, I posted on the end of the last thread.

I've got my breast clinic appointment for this Friday which is exactly 2 weeks. I'm pleased with that. Dh has taken the day off work to be with me. He's a GP and will be able to interpret the doctor speak and ask the questions I'd not think about. He won't be able to be with me for every appointment (he's single handed and his patients also need him, though his nurse will hold the fort on Friday and if there's anything important he can go in in the afternoon) but for the diagnostic stuff he can be with me.

I also told my parents last night, my amazing stepmum had BC 10 years ago and recovered, but she understands the fear and has offered to come to any treatment appointments like Chemo with me if that turns out to be needed. Not a small ask as they live 60 miles away!

Thanks for all your replies. I feel like I'm in a safe space.

@TopOfTheCliff you're so right. I am a bit of a control freak but realised that when I had to do ivf so I think I’ve learned to slow down. It is the mental load of the waiting I need to find ways to handle now. It’s at the front of my mind a lot and I know this doesn’t help so I must try and change that.

@weegiemum that’s good news and I’m glad you DH can go with you. My DH has been very supportive but had to leave the room last week when we started talking about ports and pick lines as he faints when listening to stuff like that. I find there’s only so much I can deal with, never mind take in but I find this thread very comforting x

@BreakfastClub80 my DH is the same. I only ask him to come for big occasions like results days. Otherwise he feels sick and upset at how much he hates hospitals. It’s a good thing it’s me with the cancer not him or he would probably have died by now. I quite like going in by myself - you have good conversations with people that way, and everybody is very kind.