Cancer support thread #77 - newbies welcome

[InOtterNews]

I couldn't see new thread so here we go...

Welcome friends old and new, to the most supportive thread on Mumsnet. Everyone is welcome whatever stage you're at (fears, diagnosis, treatment). Introduce yourself and say Hi

Good luck to everyone having treatment this week. Hugs to all - especially if you're feeling rubbish (physically, mentally, or waiting for results - ugh)

@MrsPnut scary business. I get fevers and chills for a few days (especially at night - I suspect it's the injections that really set it off. It had me back in hospital being checked out 3 days after first chemo and I used to take my temperature constantly. I hardly bother now - even though I feel very hot or chills - there's nothing to see.

Nights are hard yes. Fever, chills, and yes - restless legs. I keep painkillers and water by the bed. I swear by antihistamines (Clarityn) to knock back some of these effects as they are part due to inflammatory response. I've had to stop them in the last week though in an effort to get this wretched chronic port incision wound to heal. Dr thinks it might just not heal while on chemo but I've stuck a hydrocolloidal dressing on it hoping it will do some good before blasted with chemo 4 tomorrow.

My bloods are done in the arm - I don't have power port. But one of the reasons I didn't bother with one was that I heard it was hardly ever used for routine bloods. I was quite obsessed with the timing wrt emla cream and waiting around last time but now I don't think we probably really need it in any case. Can you confirm whether bloods are via port - then time your emla, and take it with you in case you need to reapply?

@TopOfTheCliff great news for you - and for me as a fellow Her+

There is a lump vs mast debate in my team. Surgeon favours lump (he's confident it will make no difference) but onc and nurses prefer mast. I am terrified of surgery so swayed by the simpler lump - but then again, I don't want to do it twice. All nodes are going either way. How did you settle this, fellow breast people?

Feeling relatively well as you do near to next chemo - yet feeling curiously dispirited when I thought I was coping quite well. A mid-treatment slump perhaps - so far from either shore. Not so much a fear of mortality - as that it's not really worth it.

@Bloodybridget what did you think of your therapists - I'm still dithering?

Hi all,

I feel a bit of a fraud as my cancer (infiltrating BCC) is right down at the bottom of the list in terms of seriousness, but FWIW... I had a BCC removed from my face back in October, and then had a call some 6 weeks later to say that it was infiltrating and they'd not got all of it. I had the second op' on Friday and hopefully they have it all this time. Am now spoiling myself on the sofa with hot water bottles and naughty food and Panadol.

Very best wishes to all of you, whose situations are more difficult

@Acinonyx2 I have chemo 3 coming up a week tomorrow and feel pretty gloomy about it, even though I will then be halfway through. Can't let myself entertain the possibility that it won't work. Let's hope we can both get through the next few months with some cheerful times! You asked about therapists: it was easy to choose one, as it happened: one had no availability for a while, one was a bit too head-tilty for me, I felt very comfortable with the third. Have a session booked for Tuesday.
@SpudsandGravy as it says on the tin, anyone with cancer, or a scare, or waiting for results, is more than welcome here, that includes you! I'm sorry you have had to have more surgery and sincerely hope it's all taken care of now. I guess they look at what they've removed and the surrounding area to see if there's anything else to do? Do stick around as long as you want, take care of yourself as you recuperate.

@Acinonyx2 I can well imagine it's tricky to make a decision when views are split in the team. No issues with that for me as my initial MRI showed the cancer was in various parts of my breast with a "strand" (?) or stands away from the tumour - apparently not changing prognosis but meaning they want to take all the breast tissue they can to try to be sure all cancer is removed. The bit I'm less clear about is how they decide how many lymph nodes to remove. Hopefully I'm only 2 or 3 weeks off a discussion with the surgeon now, when all may become clear!

Thanks @Bloodybridget x Yes, that's what they'll do.

Very best wishes for your upcoming chemo

I take magnesium to help with restless legs and sleep, obviously check with your oncologist if they are ok to take during treatment.

The chemo unit where dh is treated don't have any volunteers to do hot drinks at the minute, which is a pain as the chemo he has stops him from drinking, eating or touching anything cold and he hates tea in a flask!

I don't know if it's a good thing being an 'insider' whilst waiting for my appointment or not!

Hello! Gosh I seem to have missed loads over the last couple of days!

@Bloodybridget I think the thing I am struggling with is that I don't like relinquishing control and saying I am not up to stuff. DH is very supportive but I hate asking him to do stuff and feel "lazy" if I am not doing things around the house. This round has definitely hit me harder. I keep a chemo diary and last time I felt better by day eight. I am now on day ten and still had two naps today. I just can't stay awake!

V interesting to know that restless legs might be an effect of the chemo - they've been driving me mad! My sleep tip is buying a silk pillowcase - it is lovely and cooling and supposed to be better for avoiding face crinkles.

I wasn't offered a choice between lumpectomy and mastectomy. My consultant said he preferred the former as it was less "mutilating" which I found extremely brutal language, tbh. In the end the lumpectomy wasn't entirely successful and I had to go back for a second "scrape" which finally got it all. (I do think they could find more pleasant ways to describe these procedures.)

On the subject of Emla, I bought some for my post-chemo stomach injections and it has been brilliant - so much so that I got my consultant to prescribe a massive pack for me as it is expensive to buy. I have found the trick is to leave it longer than one hour before the injection. It is a godsend as I am v squeamish with needles.

I also have UC and thought I could have the vaccine. I have been asking the chemo nurses about it but they know nothing. However, as we are classed as ECV on chemo, I thought we were actually a priority for receiving it.

So sorry to read about yet more delays and cutting back to cancer services. I originally didn't feel too bothered about Covid but I am starting to feel v scared about how it will impact my treatment. These are scary times.

Reassuring to hear that some have managed fine with no Emla. My problem with tomorrow is the incision site is still covered with steri strips (which nurse has to remove), so I can't cream it up in the morning. If I want it numbed for bloods, they'll have to remove the dressing, cream it, wait, and then do the poke. I can imagine some of the less patient nurses getting huffy about this, but hope I'm wrong!

Sorry to hear so many others battle with restless legs! I've had this all my life. Had to get up halfway through an MRI because I couldn't keep one leg still enough - so embarrassing. And typical that it hits at night (this MRI happened at midnight, so classic timing). Haven't noticed any worsening on chemo yet, but hey ho - something else to look forward to! I second the pillow between knees at night idea.

@Acinonyx2 and @Bloodybridget I'm one round of chemo behind you, I think, and definitely feeling the slump, too. It still all feels pretty new and even the halfway mark is still three weeks away. Solidarity tomorrow!

Meant to say: I'd heard that cancer patients here (Canada) might be higher up the queue for the vaccine - but who knows how long the wait will be. @AlbertCampion I agree - my family and I were sailing through Covid last year, but now I'm much more worried. Youngest started a runny nose this morning and DH and I went into full isolation panic mode. It's such a mindfuck on so many levels...

On the subject of Covid vaccines, I contacted my GP practice to ask if I would get further up the queue because of cancer/chemo; the doctor who replied said he had asked for me to be upped to 4th in line, i.e. with over-70s, but he didn't know if it would work. Anyone else had any communication about this?

I hope I have not unduly worried anyone about the Covid vaccine. I am only going on what it says on out public health website in B.C. There is even a frequently asked question about when a vaccine would be available for people with autoimmune diseases. The answer is hopefully soon.

Today I saw on the BC Cancer Agency website that the vaccine risks are not known in cancer patients. Kind of like the issue with pregnancy is my guess. Not tested on cancer patients. It does suggest that you can discuss with your oncologist and if the risk of the vaccine is overridden by the benefit you may get it.

I don't know about other jurisdictions.

Yes, this is scary. I was counting on the vaccine to help me get my old life back, as are we all.

Thanks everyone for the sleep tips. Not much better here, but I am going to try the silk pillowcase for sure, and the magnesium. Restless legs are a curse.

I have had a prescribed sleep med in the past and I am thinking of asking my GP for something again, as this chronic exhaustion is tough.

It is 7:20 pm here and I hope you are all asleep, and that you wake up feeling refreshed at least a little.

Good luck with all the chemo. After way too many failed attempts at restarting my IV in hospital before Christmas, and the huge bruises that resulted, i hope the ports are all working as they should.

No news about the vaccine yet but hopefully with the opening of mass vaccination centres today things will start moving. My husband is getting one this week( he works in supported living).

My GP confirmed I'm in the 4th priority group with the over 70s too @Bloodybridget - I believe this will apply to anyone having active chemo as we're counted as extremely vulnerable.

I haven't heard anything further but hopefully that means a vaccine by mid Feb if the uk government hit their target. I've no concerns whatsoever about having it. As I understand it, it's efficacy could be less certain for eg chemo patients because it relies on an immune response and ours might be less effective, but I'm happy to take any chance of some protection I can get!

Now that schools are shut I'm much less worried about catching covid because pretty much the only place I could be exposed is the hospital cancer centre, but I'm still really worried about surgery cancellations.

I'm not at all worried about getting the vaccine, I'll take it like a shot (no pun intended, but laugh if you want ). My oncologist said a while ago that there didn't seem to be evidence that chemo patients were more likely to get very ill with Covid unless there were other risk factors, so it's all v confusing.

My oncologist said the same thing! My main concern with covid is that it would delay treatment... i guess there are so many unknowns with it all. Let's hope we can all get through this winter without any issues xx

Random question: has anyone's hair started growing back while still on chemo? I've got two Paclitaxels left to go but suddenly seeing my hair start to sprout (not much on top of my head still sadly!). I'm delighted to be getting my eyebrows back but having read that chemo has the same effect on hair as cancer cells it's also making me feel a bit perturbed. I'm being daft aren't I?!

@lubballoo my hair started falling out after my first chemo last year so I immediately got my head shaved, but I did have a short fuzz before the end of treatment.

2 calls from the hospital, one to rearrange my liver MRI from the 29th January to 5pm today. The other is to book an appointment with the oncology nurse tomorrow at 9-30am. Will have a Covid test and chemo will start 3 days later, she said could be Saturday or Sunday. Nervous but so pleased to get started.

DH's oncologist has said he can have the vaccine during chemo but it has to be the Oxford one (I'm assuming due to the Pfizer one being frozen and interacting with his oxaliplatin) and to have it as close to chemo as possible. The gp has said he should get it by the end of this month which will be just before chemo #17!

Two other random restless legs thoughts from last night: it's always worse if I have to pee, for some reason. Nothing like a quick trip to the loo to somehow reset the legs. Also, exercise. I'm sure mine have been worse since I've been less active recovering from last week's little surgery. (Exercise is something I'm trying to prioritize now, anyway - apparently 3-5 hours a week during chemo can reduce recurrence by 50%??)

Have tried cal-mag in the past, but not sure it made much difference.

Medical resident here told me the same thing about Covid not seeming to hit cancer patients especially badly, barring other issues. I'd like to believe that! But my anxiety about it is still high...

Vaccine is available to all residents here (DH has had the Pfizer one) - but I’m waiting to see my oncologist next week as have had conflicting information from the nursing team as to if / when can get!

I think the Oxford vaccine is preferable due to it not being a live vaccine - so like the flu vaccine (which I had on a chemo day!). Unfortunately not sure if the Oxford one is available over here (all the others are!!). Pfizer seems to suggest not enough research yet re cancer patients I think? I so want a vaccine before returning to London!

Well, I'm sitting in hospital and the kidney and it's hitchhiker is gone. So far, so good. Thanks for all your support.

@seizethecuttlefish that is fantastic news, what a relief that must be! Hope you're feeling ok, how long are you likely to be in for?

Have seen the oncology nurse today and first chemo is on Friday. Having Taxol/Carbo for 12 weeks then EC every 3 weeks for 3 sessions so 15 in total. Thought I was only having 6.

Having my Covid test this afternoon.

👋