Cancer Support Thread 89 - the best thread that no one wants to be on.

[LemonDrizzle10]

New page

@Lisdeflores that's beautiful! Have a lovely time!

I’m off to the hospital later on for my second blast of radiotherapy. The nurse told me to moisturise the skin but wouldn’t say what is best to use. Any top tips? I’ve got bio oil and aloe Vera in the cupboard currently.

@LemonDrizzle10 I used Aveeno cream a couple of times a day ( though you aren't meant to put it on too close to your actual radio appointment). I also bought a tube of aloe vera which I kept in the fridge but I never needed as I had no skin reaction to the radiotherapy at all.

@TopOfTheCliff thanks for your reply. That’s really useful to know what the protocol is in the UK. I had a 5mm tumour left after the chemo.
No immunotherapy prior to chemo. I think it’s very expensive here but the oncologist seemed to think it would be made more available soon.
Im post menopause (surgery) and have stopped taking hrt. So are bone metastasis more likely if you are post menopause.

Have you had genetic testing Top?

I hope i can get to a point where I’m not constantly anxious about something else happening.

@Lisdeflores that looks wonderful!

@LemonDrizzle10 I used Zerobase emollient cream which was one of the ones recommended by my radiologist. I just ordered it from Amazon. There were several other options they suggested including Aveeno and also Aloe Vera gel. I was told to try and moisturise 3x per day but not before the radiotherapy session. I only had 5 sessions but they were quite intense but no skin reactions apart from a bit of redness and tingling. They also said to drink loads of water.

As an aside, my surgeon told me that radiotherapy would put my breast into a state of suspended animation and it would remain young and perky compared to the other one. Perky is not a word I have ever used to describe my boobs and I'm not yet seeing any evidence that she spoke the truth!!

Made me lol too as know peeps from round there and sums it all up perfectly. They came to see me in South East London and were visibly shook re the area!

@LemonDrizzle10 any cream will do but wash first and don’t apply the cream till after treatment. I treated myself to some Liz Earle organic 72 hour moisturiser and had no problems with my skin. @Atreus after a couple of years breast no 1 is not exactly perky but less droopy and occasionally swells up and gets tender. Luckily the other one now matches after cancer no 2.

@FairyWren7 the Zolendronic infusion works better on older women but the incidence of mets is the same I think. I paid for a genetic test as I was too old and white to get one on the NHS. I used Color.com in the USA and paid £300 for 30 cancer gene and 30 heart disease tests. All negative - I’m just a freak of nature luckily.

Tired out this evening as I spent an hour weeding on the allotment and foolishly walked up there and back. Feet are still okay luckily. Ten weeks to go till I finish this drug! I’m counting down now.

@mowly77 I hope your DDs 5th birthday and your wedding go well.

DH went to France yesterday for his Mum's 90th birthday. I have just booked a trip to Mauritius for DD and I for a few weeks time in lovely hotels with lots of watersports included, Sugar Beach and Long Beach hotels, we swap half way through. DD is 17 so not sure how many more holidays there will be. I wish DS and DH would come but DS still won't leave house and DH said for us to go. DH seems to be quite looking forward to the week anyway. I am so glad to be getting away.

I had counselling assessment, I passed or should that be failed, but its a 5 month wait for 6 sessions. Though now I have learnt just to keep going even if distressed or anxious just keep carrying on through it. Things are much better for me now, DD and DH are great, it's DS now but I have so many meetings to help. Still swimming 3 times a week around a mile each time and that's helped so much.

I was feeling quite pleased with myself yesterday. Managed a 7km walk without my feet complaining. I’d been doing so well with my recovery that DH decided to go away for work for 2 nights. DD17 got home from school and said she didn’t feel right and within half an hour we were in an ambulance to hospital with her failing all the cognitive tests (couldn’t remember her birthday or our address) so I was freaking out. We spent about 5 hrs there, not too bad in the scheme of things. Had some scary moments where I was envisaging brain tumour, and so was DD. However in the end it turned out to be a migraine. I had no idea migraine could cause confusion like that. They got her dosed up on painkillers and anti emetics and discharged her. She’s slept all night so hopefully a day off school will sort her out. And DH managed to grab the last flight home and picked us up from the hospital. That’ll teach him to leave me unsupervised LOL.

Migraines can be terrifying @Remaker - I’m glad it was nothing worse. Good news about your feet too!
I’m lying awake obsessing - of all things - about my echocardiogram next Monday and what to wear to chemo. I know that wearing proper clothes will help to keep my spirits up but I don’t know how much I should compromise for comfort. I don’t know either how the chemo is being delivered. I have tiny veins so on balance I’d rather have a PICC line or portacath, but just don’t know.

Do you get any input @Florabritannica or will they just decide whether you’re having a PICC line or portacath? I have a portacath and that has worked well. Apparently the chemo I had is very painful when delivered via the arm so I was just told this is the best option and that’s what I got! I bought some lovely soft flowy black pants with a soft waistband and I live in those. With the portacath I wear a t shirt with a low neck so they can access it easily and then I take a soft cardigan or hoodie and put that over me like a blanket. Someone usually brings me a heated blanket as well (I’ve had all my chemo during the Australian winter). So I don’t look like I’m in my pyjamas but I am very comfortable.

What chemo did you have @Remaker? Flowy pants sound a good idea and I have a nice cashmere hoody from my hip replacement back in March. Perhaps I’ll go with a drapy shirt so I feel a bit more dressed.
I don’t know whether I have any say in delivery. I’m still in Italy and have inevitably lost the card the nice breast cancer nurse gave me.

I had Oxaliplatin @Florabritannica.

@Florabritannica I’d get the pic line booked in right at the start if you know your veins might be tricky. I didn’t have any issues for the first few weeks but then it got harder and harder to find a spot. It was the most stressful part of the chemo on several weeks for me them trying to get a vein. It also slows the time down as they soak your arms in hot water etc to make the vein more accessible all of which takes time.

Best wishes x

Second what @Remaker says about clothes. Comfy trousers and layers - you may get cold sitting still and you may also flush so a cardigan or hoodie are both good. I also took a huge scarf with me some weeks, also Australian winter so that helped to make me feel rugged up as I didn’t like the white hospital blankets and couldn’t be bothered to take my big furry one in with me.

@Florabritannica I have a portacath and apart from being a little bit sore when they first put it in, it's been no bother at all and seems to be much less hassle than the other options.

I just wear a loose V necked T shirt/vest and a baggy loose necked jumper so the port is easy to access. There have always been blankets available if I've needed them too. I did learn early on that wearing button jeans with a belt is not the most sensible idea when you're navigating going to the tiny bathroom whilst hooked up to a drip (even via the port) and with all the cold cap paraphernalia on. Loose elasticated trousers that you only need one hand to pull up and down was much much easier!

Love the recent pictures - especially the sunshine! We seem to have some here today finally but I'm spending the morning at least at the hospital 🤦🏼‍♀️ I've got a consultant appointment at 10 (hopefully, he's on call) and then they may drain my tumour because it's squashing my kidneys.

I've been a teacher for 10 years and just left the profession. This is my last long summer holiday and definitely not how I wanted to spend any of it! Been taking the DC to anything and everything though. Daily swimming lessons this week so DH is taking them today. They can't swim but they're becoming less scared at least!

I’ve been to A&E a couple of times with DD @Remaker with the same, she gets numbness as well, so we thought it was a stroke to begin with! I get migraines with aura too, in fact, I just get the aura and no pain. I’ve never been completely confused, but sometimes I can only speak in quite simple sentences. I’m not sure anyone else would notice, but I do! There was also once I was in the middle of a Spanish class, and I could only say Spanish words that I already knew, I couldn’t pronounce any words I’ve never seen before, even though normally it’s really easy in Spanish as it’s a very regular language. It was fascinating! It has caused ongoing issues for her with contraception for her, though, as she had to come off the combined pill and doesn’t get on with the progesterone only contraception. Though with my experience of endometrial cancer, I am actually quite glad she’s not putting hormones into her body, and as she pointed out, now she is 20 she will never have a teenage pregnancy!

Someone on this thread recommended elasticated trousers for chemo - so I have a few pairs from Fat Face. They’re thin material- but hospital is often quite warm. So that’s ok

I take a poncho with me - as it’s like a blanket - but stays on and they have access to my arms. It might work with portacaths etc - as can easily lift up or put on and off.

The day I saw the oncologist for first time - and he was somewhat brutal in his communication - that was bad enough.
Till my youngest went into severe anaphylaxis (cause not clear yet). We have a family history of allergy in the kids - but this time was impressive in a bad way!

He is fine now. Waiting for immunology- he has a known hazelnut allergy - but it could have been a banana that caused this episode

So I learned things can always get worse! And that I’m still needed as a mum/ ex Dr. DH wasn’t much use

@SierraSapphire DD had the numbness down one side as well. It was so scary! She’s been taking the pill for a year due to very painful periods. She has an appointment with our GP next week so we’ll discuss all the options. When she’s off the pill she’s out of action for a day every month vomiting and writhing in pain. There just doesn’t seem to be a good answer.

I went to have a blood test today, really hope it will show improvement in my liver function. My bestie bought me a bottle of vintage Tattinger champagne so we can toast the end of chemo in style. But I don’t want to drink alcohol until my liver is back to normal.

@Florabritannica i wasn’t given a choice re pic line, I was just auto booked in for it..

Lots of sympathy for the migraine sufferers. I used to get horrendous ones from late primary into my teens, thank God they settled as I got older. Also had my poor DM thinking I was having a stroke once when I went numb down one side! Hope your DD is better @Remaker and not feeling too wrung out afterwards.
@SierraSapphire your experience speaking migraine Spanish sounds crazy, that must have been scary! I am not usually emotional but have burst into migraine-induced tears on random acquaintances (now good friends thankfully) and an old boss once, for no reasons other than the migraine. They are weird weird things.

@Florabritannica dunno if this helps but I just rocked up in jeans and a vest top without having given it much thought 🤣 mine is a pretty quick chemo though. I took a big warm shawl and a thick cardi so I could layer. I also have a portacath and it was really bruised when they first put it in, but fine for the first chemo session.

Thanks you @LemonDrizzle10 @FairyWren7 @Lisdeflores for the encouragement and ☀️☀️ yesterday. I made it through work. And did the washing up in the evening! Hopefully onwards and upwards today.

Crikey @Remaker, that sounds scary! Glad to see it was 'only' a migraine but must have been so worrying nonetheless.

@Crimsonbow what will you be doing now you're no longer teaching?

@Florabritannica have you had an echocardiogram before? I agree with everyone saying comfy is the way to go clothes wise. Although, I tend towards my softest & most well worn wide leg jeans. Think they're a bit 'comfort blanket' ish, I feel out of sorts not in jeans. I take dd1's bigger than mine hoody too, in case I'm chilly, it does as a shawl.

I have my consultant appointment today, with CT results. I've felt fine about it til this morning but am quite nervous now! The girls are coming with, for ice cream on the park afterwards. They're going to wait outside though for my actual appointment - just in case.

I discovered last night that I've done 2 rows of my crochet project wrong - following the smaller pattern 🙄 It's really starting to frustrate me but smaller projects that I can bit-and-bob at seem to be the way to go at the moment. I'll crack on with the tree tops tonight/tomorrow rather than frustrate myself again 🤣

Have a good day all, hopefully the sun's out where you all are 🌞

Good luck for your appointment @lucysmam

@Remaker cross post, again sympathy for your DD, hope the doctors are helpful and have some good suggestions. Happy to share my similar experiences if you ever want to PM. (But practically everyone on MN has advice on periods 🤣🤣) Also, does your bestie want any additional besties?? 😁

Hope the appointment goes well @lucysmam.

Sounds scary @remaker and hope she is feeling better today. Anything medical is sending me into a tailspin at the minute so I can only imagine how worrying and stressful it was for you both.

Lovely day at the beach yesterday with lots of walking and a good night's sleep after that sea air. Nice to see a bit of sunshine for a change. Going out with a friend today who I haven't seen since before treatment so that will be nice. Energy levels definitely improving.

Back to work in two weeks, just part time initially. I'm looking forward to getting back and into a bit of a routine again but a bit worried as I definitely don't feel as 'sharp' as I used to!

@remaker - long history of endo and migraines here so can sympathise. They put me on a progesterone only pull in the end called visanne which really helped.

@Crimsonbow I left teaching in the UK after six years and went overseas but am now considering a return. Not sure if I would go back into it. Are you having a change because of health primarily or had enough?

Still got the drain in here today at 40ml and it needs to be 30ml. I’m praying tomorrow might be the day. I’ve had to cut down walking with the dog as the nurse says it’s causing more fluid. But I’ve been taking him to the dog park and sitting in the sunshine instead!

I’m still do up and down emotionally. Spoke to the volunteer counselling service this morning. Good to chat to someone who has got through it. I hope the numbness starts to lift soon as it feels so odd and I’m back on endone for the discomfort.

Hope everyone gets some sunshine today. I’m being checked again at the surgeons rooms tomorrow. X