I could do with some ideas too! Have got frozen pineapple chunks and mango in the freezer and they help...some boiled sweets in the car....but I am struggling too! GGx
Thanks Galligirl. I've had a quick look at the Macmillan site and I don't think I'll qualify. As far as I can tell you have to have real issues with mobility and/or looking after yourself to qualify. I don't have any problems with any of those, but at least I've checked it out.
I'm loosing my sense of taste again today and getting that horrid metallic/musty taste instead. This seems to happen most weeks on day 2-3 after the treatment and is even worse when I have Carboplatin (i.e. next week - yipee!), when it seems to last for 3-4 days. I really like my food and find this one of the most annoying SE. Pineapple and very spicy curries seem to be the only thing that can overpower or at least reduce that awful taste, but I haven't found any really effective way of dealing with this. Anyone got any other tips?
There were some discussions recently on the Macmillan site I remember seeing...it might be worth a look.
Aley: I had a bone scan as well, but I think that is because I am triple negative and they wanted to check out absolutely everything before I started on chemo. Luckily all my scans were clear.
About PIP: do we qualify for this automatically because we've got cancer, or do we have to show that there are mobility/other issues that limit what we can do? I've checked the government website, but that doesn't provide any detailed guidance, though it does seem to imply that you have to have limited mobility and/or problems with everyday tasks to qualify. I guess I can just phone their helpline to find out, but wondered if any of you know more about this?
i had a ct scan and bone scan after they found the extent of my cancer was more than expected - both were found to be clear!. Oncologist implied that ct scan was now good enough to see bone issues and that the bone scan was a double check ordered by surgeon. Just my experience. GG
Hi Pulapula - although not the best place to be in one way in another you've found the best support and advice available by joining Breast Cancer Care's forum! I certainly wouldn't have got through it all last year as well as I did had I not found this safe place! I'm from May 2017 Chemo starter group and still on here browsing daily to see if I can offer any help or support following my experiences!
Anyhow, I've seen you mention PIP and my reply to you on your question is a definite YES - I didn't come across it until after the chemo, surgery and radiotherapy - I applied and I was successful in achieving the lower amount. However, I was informed during my assessment that had I applied whilst going through chemo - I would have been accepted straightaway. So please do fill in the form - there's nothing to loose! - it also removes the financial burden that cancer brings with it! I work in school and I was unable to attend once the chemo started due to infection risk - I therefore ran out of full pay and had to go onto sick pay - a huge difference and at the same time - bills increase (due to being at home more!) and expenses increase (not being able to drive yourself at times and when I had surgery I had to have help to do things like hoovering, ironing etc). One tip when completing the form - think of how you feel on your worse days......
Good luck with the remainder of your treatment xx
Hi - maybe a bit of anxiety? When I was first diagnosed and had my biopsies, I kept having moments of being short of breath...not painful just weird...it was put down to anxiety. Always worth getting it checked out though. GGx
Thanks, ktk. I'm sure that just what it is. I'll check with the nurses tomorrow and if they come up with any useful info or advice, I'll post it here.
As I was walking back from the hospital after bloods and Picc Line care this morning, I started to feel rather breathless and my chest seemed to tighten a bit. The feeling only lasted while I was walking (takes me about 30 minutes door to door) and it's completely gone now that I've had a rest, but it was a bit odd. Has anyone else had that? I assume it's just another new SE, but will check it with my nurses tomorrow when I go in for chemo.
I had a lovely day out with my other half yesterday. He/we enjoyed the time "out" so much, he has booked another day off work in November. If you can persuade your hushand/partner to do the same occasionally, I really recommend it as a way of getting some quality time away from everything, chores at home, cancer, children, and just enjoying eachother's company. He even felt relaxed enough by mid-afternoon to ask me how I was coping, something he has not done for a few weeks. He then just listened to my answer, put his arm around me, which was perfect - just a bit of love and comfort.
Hope everyone has a good / reasonable week. I'm on number 6 of 16 tomorrow, or 6 out of 12 carboplatin/paclitaxel (which sounds much better), to be followed by 4 EC in December.
Hello girls, justbwanted to offer a bit of advixe for thise of you eith "itchy wigs". I have bamboo wig liner which is realy soft little skull cap which you wear under the wig and makes it so much better, j got it from the wig shop, also found once all hair gone it was more comfy. Foe those of you approaching half way, my hair began growing by T No 2, now 3 weeks post last chemo and have fluffy hair all over head!! As for husbands mine struggled with talkingnto me aoart from saying "be positive" and ",it will be ok".. its hard for them to know what to say or to voice how they feel i i think, but there is help for partners from macmillan if they need it.
Lisa T - I still have a few strands all over too..so I have gone from looking like a scabby badger when I first went short to now a sort of ducky fuzz! I assumed I will loose it all after FEC 2. Still have eyebrows and lashes ...and I think losing those will be the hardest...
FEC 2 on Thursday...just want to make it this time....( I had by first FEC in August then got an infection in my implant and had to have it removed...the delay meant I went back to the beginning again...so I have done two FEC 1s...)
🤞everyone stays well this week....GG
I washed my hair this morning and lost two large fistfuls of hair - it was just awful . So, I phoned my lovely hairdresser and went to get a radical, very short pixie cut. And rather surpringly I actually quite like it. Now at least I don't have tons of loose hair falling in my food, clinging to my clothes and falling on my pillow. Also, I'm hoping that the lack of weight might actually help my remaining hair a bit. I'm so relieved I've done this. I also went for a headscarf workshop on Friday at my local Macmillan Centre. A lovely lady showed me lots of different ways how to wraps scarves around my head. She also had a huge selection of lovely beanies etc that she makes herself. They weren't cheap, but I treated myself to a couple. I'll need to keep my head warm, even if I don't loose all my hair.
I think I'm lucky with my husband. He's very worried of course and I've had to stop him from giving me "concerned" looks all the time, checking up on how I am etc. It was getting a little too much. But he now seems to have found a better balance. He wanted to come to the hospital for my treatment every week, but I have instead persuaded him to take the occasional day off when I'm actually feeling well, so that we can spend some quality time together, e.g. go to the cinema or for a walk. That way we're not just always talking about this wretched cancer and can enjoy eachother's company (without the children!). It's important not to forgot how to do that, I think. We've got our first "date" on Monday and are planning to go to an exhibition followed by a nice lunch - Mondays are my good days, so I'll enjoy my food!
Have a lovely Sunday (despite the rain!).
Hi Jacqs and Aley, regarding the mouth issues. I had a terrible bout of oral thrush, mouth ulcers and generally yuckiness when on my first T cycle. It also had a greenish tinge to it and was slimy and really sore and thickly coated. The inside of my cheeks had ulcers and I kept biting on them. I did end up in hospital that cycle as my neuts were very low 0.1 I think. I had a high temperature which was what prompted a call to the chemo hotline. I had some blood tests whilst in hospital and a chest xray to asses whether I had an infection but I didn't just low neuts. I was kept in for 2 days and given IV antibiotics. I also then got the ilfrastrim injections after each chemo to help keep the neuts up. I was put on flucozonale for the mouth thrush, 1 a day, and also used Nystatin (which I got from GP) for my tongue. Every cycle after that I got the flucozonale to take home with my usual chemo drugs and started taking it at a soon as my mouth started to feel sore, about day 4 and took it for 10 days regardless aand although my mouth still lost taste etc it never got as bad again. I also mixed up a solution of cooled boiled water with salt in and gargled with it after every time I ate and also inbetween, I think it did help. I was also told to eat pineapple as this cuts through the nastiness, I never actually tried it and still have tins of pineapple in the cupboard. A lady at chemo told me to freeze chunks of fresh pineapple on cocktail sticks and suck on those to help with the mouth.
Hope something helps with the mouth... it really was horrible.. but like everything else it does pass and now almost 3 weeks post chemo I have taste buds and a pink tongue!
Relieved to have my 3rd & final FEC today. Left with awful taste in my mouth. Nurse suggested eating pineapple, but would appreciate any other suggestions.
Aley - i’ve got a coating on my tongue with a greenish tinge to it. I mentioned it whilst having my chemo session today but nurse didn’t seem overly interested - didn’t even look at it. Wondered if this is what’s causing such bad taste in my mouth. X
Glad to see you are all getting along well, and finding those good days amongst the SEs. As for hair, mine started growing towards end of FEC, and now I'm finished chemo (almost 3 weeks ago) I have a full covering of white hair, its quite soft and downy like baby hair still but its hair at least. It started growing on the T part of chemo. Leg hair and elsewhere not doing much and the eyelashes and eyebrows not coming in yet, but they didn't fall out until 2nd T so last to go.
Luckily my neutrophils edged up to 1 from 0.99 (whatever that means) and so I could go ahead with the chemo today, which was a huge relief. Apparently the Carboplatin, which I had last week, has this effect. I'm also low on Sodium, which seems odd, but apparently it's nothing to worry about. I did ask whether I should be eating anything in particular to help bring that up again, but just got a funny look from the nurse. Oh, and here's a tip, maybe: another lady was saying that she is going to try putting olive oil in her nose to combat dryness - the nurse responded by asking if she wanted balsamic vinegar as well. Might be worth trying though (the olive oil, not the vinegar!).
It is amazing how one day can be so different to the next! Yesterday, Day 12 after 1st FEC, felt rubbish...a bingo card of SEs I was wiped out, felt crap, nauseous, dodgy tum, aching muscles....woke up this morning and feel like a different person 😁. Thank goodness! Sending good wishes to all those suffering today...it will pass...just hang in there and be kind to yourself.
Hi Aley. I would agree on both points. I’ve been told I look younger in my wig & I too loved my short crop.
I’ve heard a few people say they have some re-growth after the last FEC, buts it’s quite fluffy.
Hope you are all doing well.
Well after a weeks rest, i’m due to have my 3rd Fec on Thursday & I’ve already started with sleepless nights. Can’t help wondering what’s going to happen with this one.
On a more positive note I got stopped yesterday whilst out shopping with my hubby by someone complimenting me on my lovely grey hair. She said her & her colleagues were debating wether or not to go grey. I didn’t have the heart to tell her that it was a wig although it is the same colour as my hair was prior to losing it, so was able to chat to her about going grey originally. Made me feel more confident about the wearing the wig though.
have a good evening all xx
We all seem to have gone a bit quiet over the weekend. Hope everyone is ok?! I've had a bit of a rough week (at least by my standards). Too little sleep, lurching between diahorrea and constipation, slight constant nausea, food and drinks taste horrible etc. I had my second dose of Carboplatin last Wednesday and am blaming that; the weekly Paclitaxel doesn't seem to cause any serious problems as yet. Have been feeling rather low on energy as a result and so now am also feeling bored, without being able to rouse myself to do any sort of interesting activity.
I'm now also loosing my hair everywhere - don't mind it on my legs, quite pleased with that actually, but the other "bits" will take some getting used to. Have signed up for a headscarf workshop on Friday at my Macmillan Cetre - if I'm going to loose my hair, I might as well try to get some style in there somehow!
Right now the chemo seems a bit of a long slog. My lovely husband is keen to book a holiday for next year to give us something positive to look forward to, but I am so uncertain about the timing of my surgery etc that I am holding off for now. It's nice to dream about having a break somehwere nice next year though.