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)

@Loubiloo4 given that your DH has advanced cancer and you have DCs, I wonder if your GP could push for an earlier appointment for you. I know you might be reluctant to try and queue jump, but circumstances alter cases.

I didn't even go out today. And I made flapjacks that fell apart and are much too sweet, bah!

Evening lovely ladies!

It was day 2 of my cycle yesterday and my cheeks became so hot last night that I thought I had an infection. My useless thermometer was reading 35C which I knew wasn't right and the disposable thermometers from the hospital were reading 36C so I had convinced myself they didn't work either. My forehead and chest felt normal so I laid on the sofa all night with no heating on except the radiance from my cheeks. I rang the chemo unit who have told me it is a steroid rash, oh the relief! I ordered a Tommee Tippee thermometer yesterday which came today and seems fine so that's good. I also have terrible pains in my groin and down my legs - paracetamol is easing it a bit. Finally a new haemorrhoid has appeared today too - why? Strangely, the nausea and vomiting which I had dreaded the most are completely absent .

@loubieloo4 it really isn't your fault that a poor postal service should mean you have missed your appointment, that is very unfair. I agree with Bridget and would approach your GP in the circumstances too.

@FizzyOrange oh no I wasn't blaming the postal service for anything just trying to explain (badly 😞) how the system is working at the minute. Sorry if I offended you.

@TopOfTheCliff the Kitchen Sink Regime is right! I think I'm on a similar course to you, though I've only just started chemo (surgery likely in the spring, radiation in the summer, with hormone stuff continuing after). FEC-D, so a tiny bit different from your chemo but I guess it's much of a muchness. I'm feeling battered just a month into this, so I can't imagine what it must be like with broken ankle and arm, too! Hang in there.

@loubieloo4 I hope you can get an appointment quickly - that sounds like a terrible stress

@FizzyOrange hope you start feeling better soon. Which cycle are you on? At least no nausea is a silver lining! Also reassuring to know it's not an infection.

@loubieloo4 I'm not offended at all, don't be silly. I think I must have misunderstood, apologies. Really hoping you can get a sooner appointment, the waiting is the worst thing xxx

@backformore only my first cycle and these pains in my legs are quite bad. I may have to get something stronger than paracetamol ( I can't take nurofen as I'm on blood thinners).

Sorry @fizzy orange I completely read your post wrong! That's what I get for reading in the dark (I thought you had wrote it's not the postal service's fault the letter was late 🙈) 😂😂😂

@loubieloo4 oh don't worry, I sometimes read in the dark or mostly can't find my glasses and do the same 😂😂😂

@FizzyOrange while I hate taking anything stronger than paracetamol I did find codeine a complete lifesaver for the bone pain and headaches I got during chemotherapy. Movicol keeps you from binding up completely too. You learn to just take all the drugs to get through!

Hi Fizzy it's a relief when chemo starts sounds like your experiencing similar s.e to me . I'm not able to take codeine as pm sensitive to it but it sounds like that might be worth trying. I accepted eventually that I needed to take the laxatives even if I felt I didn't need them otherwise he constipation would build up.
When the pain was bad I tried to think that it was a sign that the chemo was 'kicking the cancers butt ' and I would run a bath, light a candle and try to let the battle play out. Also make sure you are drinking lots of water.

Bridget it's funny I quite enjoy baking but flapjacks and biscuits in general are my nemesis they always fall apart!

Morning lovelies

I was given Codeine to help with my pain but they made me sick so back to paracetamol.

Still waiting for my first chemo appointment. In the grand scheme of things it hasn't been long but feels it.

Talking about languishing around, I seem to have done this since I found the lump at the end of November. Must make myself move while I can.

Also my Critical Illness Life Insurance claim is taking ages and with not being able to work my bank balance is extremely unhealthy.

Big wave to everyone 👋

Just wanted to check how everyone's weekend is going, and tell you I had my final herceptin yesterday. So very grateful to my doctors for getting me through the last 14 months - just got my "evening up" boob operation to wait for now, and to learn to live with the fear of it coming back, but we had a celebration last night, and it was wonderful telling my 7 year old that my treatment is over.

For those of you struggling at whatever stage - waiting for results, having tests, chemo, etc, know that this group is a fantastic source of strength and support. There's always someone on the group to chat to, moan to or ask for support. I am so grateful for the hints, tips and many, many handholds and words of encouragement,. You are all amazing! 💖💕

@Zorgothslugofdoom Congratulations on the last Herceptin! That's fantastic news. The celebration sounds lovely, too :)

Flapjack sympathies from all who are struggling - I've also usually ended up with ones that are either far too gooey or solid as bricks! Sometimes there's nothing for it but to mash em up into granola instead... ;)

Apologies for yet another port question, but those who have/had one: if you had your blood tested on the same day as chemo, how did this work with applying the numbing cream beforehand? Did you put some on in the morning, then do bloods, then reapply cream, then chemo? It will be my first time with the port at chemo #2 on Monday, and I'm a bit nervous! Was advised by surgery nurse to leave a fresh dressing on it until then, but I'm wondering how that will work with allowing time for it to be numbed. I called the office and a receptionist told me they usually do bloods via the arm, and leave the port for chemo, but this is very different from what I'd been told (ie., the best thing about a powerport is that you can do everything - bloods, chemo, CT contrast dye, etc - through it). So, not sure what to expect! Any guesses/tips/reassurances would be hugely appreciated...

Congrats @Zorgothslugofdoom always good to hit a milestone and that's a good one.

So much going on with everyone. I'm languishing a bit like you @HumphreysCorner. Meant to be working tonight but I'm self employed so giving it a miss. I may need a kick up the butt!

@loubieloo4 love to you and hope you get in sooner. The waiting is the worst, especially with your DH.

@TopOfTheCliff I think that's a brilliant idea. No idea how you make it happen but happy to help if I can.

Love to everyone and I'm in awe of @Bloodybridget!

I'm in on Monday for my op. I really need to get my bag organized.

Various things seem to be contributing to making my bed feel like a war zone rather than a place of rest. After finally putting hot flashes at night behind me, but after my oophorectomy it seems they are back. Last night it was cold here, but I was lying in bed with no covers begging for a breeze. Not to mention that wonderful thing called restless legs.

I was also fretting about the fact that apparently I will not be able to get the covid vaccine because I have autoimmune disease (ulcerative colitis) and cancer. Either would disqualify me apparently. I am picturing staying in this apartment forever. This is in B.C., Canada. I don't know about anywhere else.

The above lasted for hours. Thank goodness for Audiobooks. I am listening to The Queen's Gambit and enjoying it.

The weirdest part is in the morning I find myself comfortable and drowsy with duvet up under my chin. What gives?

My situation is not as tough as others here. But I think sleep problems are common.

Perhaps we could share our sleep tips? Perhaps this has already been done. I also know that I for one get annoyed by the "sleep hygiene" brigade. But our collective experience might reveal some good ideas.

Mine, which are not working well at the moment, are wearing a cotton nightgown, using a body pillow between my legs to rest on, having fresh air as in a window open even if just a bit, and listening to audiobooks. I have one that I have almost memorized which therefore doesn't hole my attention and is like white noise.

Does anyone have any good tips? Do essential oils help? Which ones? Good sleep meditations?

Hope all are doing OK.

Enouraging news @TopOfTheCliff, good to hear it made you feel the chemo was worth it!

Also in awe of @BloodyBridget - she's like a mother hen to the thread!

Mainly I've just come on to moan! Waiting for chemo is indeed the pits. If lockdown wasn't going on, I could have had my hair cut, visited places & gone out for meals etc to help distract me more. As it is, I'm feeling like I can't prepare properly and have not had a chance for final pre-chemo treats, like a meal out with DP or something other than another bloody muddy walk with the kids! Grrrr!

Covid's also messed up other things. In my pre-chemo phonecall I was told I might not get offered any refreshments or even tea/coffee as they are very short on volunteers due to Covid (most of the volunteers are older people). I'm obviously going to take my own snacks etc but that seemed a bit harsh! Also I can no longer try the scalp cooling due to nebulous "covid pressures". I wanted to give it a try it at least & it feels like something I actually had a say in has been taken away. As if chemo's not anxiety-inducing enough...

@backformore I always have bloods taken on treatment day via the port but have never used / given numbing cream - just a deep breath and rarely feel a thing. It’s over in a second!

All this talk of flapjacks reminds me I do have a recipe I must dig out! Oncologist approved as no refined sugar!

Morning all - another cold frosty day in London Town!
@FizzyOrange I've had that rash/flushed face thing after chemo, it is quite dramatic! The first time it happened, last year, a chemo nurse told me it was from the sun and I should be extra careful because the drugs increased photosensitivity, I realised later that was rubbish, I'd hardly been outside. Sorry you are having leg pains, do you know which element of the drugs is causing it? Filgrastim injections sometimes did it for me.
@HumphreysCorner I hope your insurance cover comes through soon. Having to worry about money on top of everything else is pants.
@Zorgothslugofdoom brilliant that you have finished Herceptin, a big relief for you and your family!
@LoveFall wishing you better sleep - I don't have any tips, I'm hopeless at it, unless I'm on the sofa watching good telly in which case I do usually drop off!
@HauntedDishcloth the sodding pandemic has made everything so much harder, hasn't it? I think they may have dropped the food trolley in my chemo ward, no sign of it last time I went although that was mid-afternoon so maybe it wouldn't have been around still anyway. I always do take my own lunch/snacks though as I am a fussy bugger. And it's a shame you can't try the scalp cooling, as you say one more thing you can't control.
Quite reassured that @Lizdeflores and @backformore also fail with flapjacks. I am otherwise good at baking so this really irritates me.
The dreaded ulcers are starting again, I know I should use Difflam but am so reluctant to have that taste in my mouth (so I haven't mentioned to DP as she will be on my case about it) - I am such a wimp.
Who was it starting a new knitting project, was it @gillmoregirl? How's it going? I am very bored but decided to join my choir's Zoom rehearsals this term, I'm enjoying learning new pieces. Also we are doing a devilishly hard jigsaw, an OS map of the Snowdon area. Basically 1000 pieces of contour lines.

Hi I've just been looking up some information from crohns and colitis UK regarding covid vaccines and IBD and they seem to be to united in their recommendation that people do get the jab.I'm not sure if that would change if there is a diagnosis of cancer and people would need to discuss that with there gastroenterologist/oncologist but I don't think that we would be ruled out of the vaccination programme.

I was starting a new knitting project and after many attempts I have admitted defeat. It was knitting in the round which I 've never done before and I found it like knitting with a fidgety snake. I have found another pattern more suited to my skill level and I plan to start that.

Morning, I’ve had a bit of a scare this week. Felt ill on the way home from chemo, very cold and shaky even with the heated seat on and went to bed when I got in.
I woke up 2 hours later with a high temperature and very thirsty. Had some ice cream and retook temp when he had dropped slightly.
Next morning my face was red and swollen (think tomato skin) and my temp was still raised. I took an antihistamine and paracetamol.

I went into the chemo team when I went for radiotherapy and my face had gone down a bit but they did a load of tests and got a doctor over from the hospital to have a look and it is one of those things. The only new part this week was the herceptin flush on my PICC line.
I’ve also got the skin breaking down in my vulva from the radiotherapy too which is sore and painful. But on the plus side, only 7 more fractions and a chemo to go before a break for a week or so.

I have ulcerative colitis as well and I was under the impression that the Covid vaccine was fine with the condition.

@LoveFall sounds like my nights and I haven't started treatment yet. My audiobooks are Stephen King as I'm a huge fan.

@HauntedDishcloth when did you get your diagnosis? Mine was on the 17th December and I would really like my chemo to start by the 17th January. I've bought a new non leaking flask to take my beloved Twinings tea in.

@MrsPnut how worrying and horrid. Hope it settles.

Me and DD2 have a 3000 jigsaw on the go but the dog has chewed one of the pieces and last time he did that I replaced the whole puzzle as the OCD in me can't cope with imperfect pieces. Not this time though, will have to put up with it. I also knit clowns and do cross stitch, have lots of things started so now is the chance to get on with them.

I've been up a while but nobody else in my house is up yet. 💤

Have a good Sunday. Hoping the postman will bring chemo appointment letters tomorrow and other important things for us all.

backformore I was never even offered numbing cream (feeling hard done by now!😂) - just as someone else said, deep breath and over in seconds. One thing I always found strange is when they did the saline flush, I could always taste it (very weird!). Not everyone does, but if you do, I found sucking a mint helped mask it - it's not horrible, just odd!

Someone asked about hospitals - always take an extension cable! I had one in my bag so I could easily charge phone, ipad, etc, as they always seem to have stupidly short cables.

Ooh @MrsPnut that sounds horrible and quite scary. Hope it settles down soon, and vulval soreness.
@Lizdeflores yes it was you I was thinking of with knitting, of course. Have you found a simpler pattern you can use for the wool? I have never even attempted circular needles, I find the concept baffling!

Happy Sunday folks. I am bored trying to do nothing with my right arm after the lymph node clearance. I’m binge watching Cornish fishing documentaries and have learned a lot about sardines and anchovies. The armpit swelling is stable and possible localising. Last day of antibiotics today. Tedium!
@Zorgothslugofdoom that chemical taste is so weird isn’t it? They kept saying it was just saline but it must have had EDTA citrate in the flush to reduce clotting.
@MrsPnut I hope you are feeling better. My temperature always seemed to go up at midnight leaving me with tricky decisions whether to rush into A and E shouting Neutropenic Sepsis or take a paracetamol and roll over and go to sleep.
Talking of sleep @Lovefall the good things are: taking painkillers and a mug of Horlicks an hour before bed, and the Calm App to listen to. Bad things were: steroids and caffeine and anxiety. If all else failed I would either listen to Pachelbels canon on a loop or get up and move to the spare room and watch TV.

Best wishes to all. Top