CANCER SUPPORT THREAD 58 - New thread, new year, but the lacies are still here! Please join us if you have any sort of cancer, or are waiting for test results

[WhatWouldLeslieKnopeDo]

Happy New Year! may 2017 bring health and happiness to us all

Welcome to oldies and to newbies. If you've just been diagnosed then this is the place for you. And if you're waiting for test results then please pull up a chair. We will hold your hand while you wait, and hopefully we will be able to send you on your way soon enough. If it isn't the news you hope for then we will be here for you.

Our previous thread is here

Following on from royalmama's suggestion (see, you're not just famous for typos!) I have compiled some of the excellent advice from the previous thread and I will post it below. I've divided it into sections to make it a bit more manageable. Please give me ideas on how to make it better for the next thread! :)

Freddie, here's my hand :) One of the nurses who sometimes does my bloods is working on research into what helps during rads - the only thing they've identified so far is some kind of silicone dressing. Some hospitals advise against anything with oil in it, but anectdotally they work for some people - emu oil is recommended by quite a few folks. Others swear by pure aloe vera gel. The radiotherapists I saw for planning said they'd changed their advice about soap/shower gel and are telling people they can use what they like now. I have 15 sessions starting on the 15th to chest, collarbone and neck.

Deutsch, I'm sorry you haven't had your results yet, bad enough waiting, but rubbish to have your appt changed too. I wasn't expecting good results either, but at least the team had a suggested plan to discuss at the results appointment. You're not drivelling!

Deutsch, I'm sorry you're feeling so stressed but we all know what it's like. Being told you have cancer is one thing but waiting for surgery results is on another level I think, I know I went quietly mad that week. I just wanted to say that if you're feeling alone and very scared I can recommend giving Breast Cancer Care a call. It's staffed by nurses and I used the helpline a few times. If your own nurse is unavailable it's worth a try, they were so very kind.

Also, don't think about the slot of doom. I got results in the middle of the clinics both times, the surgeon did his bit very well and kindly then left us with the nurse to explain it all again.

The recommendation for rads three years ago was to use no perfumed products and nothing at all on the skin before each session. A product called Moo Goo was very popular on here at the time and I used it with good results as a moisturiser.

Thinking of everyone especially those in the hideous waiting stage.

Hello all, can't believe it's actually been so long since I last posted but have finally got around to reading the rest of the thread up to date. sorry for everyone who is having a rough time of things at the moment.
I had a three week break over Easter and we went away on our glamping trip to the coast which was nice to get away and have a couple of drinks as not on the antibiotics for cemuxitab. Had some interesting stoma explosions though but probably all the pub food and fish and chips... !
My CT scan showed shrinkage which was great news as initially oncologist just wanted to slow/stop the growth.
I then went on to another 6 chemo rounds and he did say it would take it out of me more. I am sooo tired at the moment. And have started to get cracked fingers and heels. But I have also been fairly lucky in terms of side effects, still have hair although it is thinning, the cemuxitab rash hasn't been too terrible and -so far- I haven;t had to miss any chemo treatments as bloods have been ok.
Annoyingly I now have an issue with my PICC line as it seems to be leaking and I only have two more fortnightly treatments left until I can have my three month Summer break. Really don't want to have to have it taken out and put back in as they couldn't do it easily last time ....
However, looking forward to 3 months off in the summer, our house extension is coming along ok, hopefully I will hear in the next few days that I can claim the higher rate for PIP as work sick pay is going to half pay and then nothing, and I've booked a short caravan holiday for us all in July. For the first time ever I've booked a holiday in school time, it is the week before the last week so they won't miss much and frankly I would be surprised if they don't allow it under special circumstances. as long as we don't get fined I'm not bothered if it's unauthorised. Especially as we are only going to the Norfolk coast for 4 nights to a Park resort!
Freddie I was having a google of Cancer hotels and interestingly there was a link to a nearby spa to me that does spa treatments specifically for cancer patients- they are trained by a company called wellness for cancer.
The one near me is fairly pricy but it's my birthday in August... :)
Twinset another forum/website I've found useful and supportive is beating bowel cancer.
Will try and keep a bit more up to date on here.

Just a quick one to say thank you for the reassurance, especially about the slot. That was really bothering me - of all the things, eh?! Feeling more level today and very grateful to you ladies. You really are very kind. for all and happy Sunday xx

Deutsch can I add in another hug & reassurance about appointment. The MDT discussion is crucial and the timing of appt irrelevant. I know exactly how you feel about lymph nodes as have been through that. Best of luck.

Best Sunday possible to all the lacies xxx

Deutsch please don't read into timings. I was told that I had cancer in the middle of a clinic and then had to wait on the corridor with full on snottty sobs to see my cancer nurse whilst everybody around me shuffled with embarrassment at my distress.

When I was diagnosed I asked my nurse to update me as soon as he had news even if it was before a MDT. I am not sure if that was a mistake on my part as I have been on a huge rollercoaster because I am updated before they have a full picture. I too feel like I have been left hanging after surgery. They are discussing me on Thursday and so I will probably hear on Friday. My nurse has told me that they have definitely removed cancerous "material" but that is it. I have found the waiting for news to be mentally exhausting and one of the toughest parts of my journey.

Flippy am glad the the chemo is over and you are pleased. The mindfulness course should be good, I attended one through work and found it useful and I only managed to attend a few sessions. I am hoping to finish the course when I return to work.

all round, I think. And hands to hold for those awaiting results and treatment plans or just feeling a bit shitty.

I am feeling rather fuzzy at the moment but trying to catch up on all posts. Sorry if I muddle it up a bit! I've been feeling much better so far this chemo cycle as the op has definitely helped the bowel side effects. More energy and less pain, phew. Just a bit dopey yesterday and today, but that's normal.

fluffy I'd been wondering how you're getting on. It's lovely to hear from you and I'm glad you managed your glamping trip. Shrinkage is fantastic! I might already have mentioned it but for the cracked fingers I use Germolene liquid plaster at the first sign and it does help (though stings at first!). I moisturise constantly, and my favourite is O'Keeffe's working hands which looks rather industrial. I hope they can sort the PICC line out.

Flippy good you've got your radiotherapy plan sorted

I hope everyone has as good a day as possible

MrsRhod, I've ordered some MooGoo and some of their gentle soap too. I'm enjoying having a week off treatment (but not hospital appts sadly!) and trying not to think about rads - back to to the fear of the unknown.

To those looking at booking treats/holidays - I had a MacMillan holistic assessment a few weeks ago, the worker said she was going to recommend me for one of their grants to use for 'convalescence' and suggested I go away for a little break with DS. They sent me a cheque so we're off to a nice hotel, with spa and childcare, with my friend this weekend. I don't think there's many conditions attached to getting the grant, so might be worth a look for some of you.

Any idea why I've got pins and needles in one kneecap?? It's not painful but annoying, and feels different from the neuropathy related pins and needles in my hands and feet. Weird. Lucky me, I also seem to have developed a seroma in my back, and probably fat necrosis in the recon. My surgeon had a look last week and said it was all fine, he wasn't worried, but it's a bit sore and seems to be getting worse instead of better. Any tips?

Leslie, good to hear you're in less pain - that's so tiring in itself.

Hope everyone is doing as well as they can this week.

Leslie I got the germolene liquid plaster on your recommendation and it did help, I've been using a manuka honey handcream from Health food shop which also helps but is a bit potent smelling.. The PICC line seems to be ok, they had a look at it yesterday and it drew blood and didn't leak so leaving it be for the moment.
Flippy sorry can't really help with the pins and needles but I hope you all have a lovely weekend away.

sorry I'm a very boring broken record good news about your PICC line fluffy I hope it behaves from now on

Flippy that sounds lovely. I hope you enjoy yourselves :) how is DS getting on? I hope the pins and needles and other annoying things clear up soon

Hello everyone.. .Flippy I start rads a week on Thursday....planning ct scan was surprisingly jolly...like something out of blue Peter, with sheets of plastic, felt tios and pot of uv paint...was pathetically pleased they can do invisible tattoos now so no permanent marks etc. Guy doing it kept making me giggle, which wasn't ideal when I needed to stay still. I'm doing breathe in/breathe out...15 days and five boosts at the end. Are you working thru them? Don't know if I'm being wildly optimistic in saying i will...eeek.
But so so pleased you are going away...thats amazing and so well deserved. Do let us know how it goes.
Leslie...are you ok? There is NOTHING boring and broken record about you
Deutsch...im thinking of you and hoping you aren't having too much of a nightmare waiting...please do let us know how you get on
Fluffy...glamping sounds fun and great news for three months off

I went to the cancer hotel on Sunday.....it was lovely..the staff were fabulous, it really was like a hotel, no in your face medical stuff around, but a nurse which i would find very reassuring, beautiful garden. They even have a beach hut...when I went the residents were on the older side..mostly 70 or so...but so very lovely and they hold Shine events there and children are welcome.....so I reckon they could handle the Lacies!!!! I came away thinking there should be MANY more of them.. .one previous resident with terminal sarcoma said it literally gave her back her zest for life and she ended up remarryong her ex...made me quite weepy...such a sucker for romance!!
Anyway...hope everyone is ok.. .xxxx

Hi Lacies. The sun has been out here this evening and there a fantastic sunset. Before it escapes my brain completely, I remember a Body Shop rep at a party telling me the Rose hand cream with SPF was developed with the input of ladies undergoing chemo. I have used it before and it's really nice, absorbs brilliantly but I don't know how it stands up to chemo damage.
Also, I am here to share with you all that I went to the breast centre yesterday to have my dressing off as it was completely unstuck and it was the original plan. It turns out the appointment was changed because 2 hospital trusts have merged and the new admin team had decided to rearrange all the clinics. My surgeon was there and she checked my scar and offered me my results to save me coming back on Thursday's. Very fortunately I have had the best news possible. The whole area which showed up on the MRI was DCIS so my decision to request a mastectomy was entirely justified and very fortunately no invasive cancer was found and consequently the lymph nodes were also clear. I am beyond relieved and unbelievably grateful to all of you for your the supportive, empathetic and encouraging posts. They have really helped to sustain me over the last 3 months. This post probably feels a bit awkward because I have to admit to feeling a bit foolish, especially after my post on the weekend. It was made in the genuine expectation that I would hear the worst this week and the fear had got me down. I know no one would ever wish anything but the best possible outcome but to be told it was risky but not actual cancer does leave me feeling weirdly fraudulent, even if it's illogical
Anyway, I am unbelievably grateful for your support. If in anyway I can help or support any of you, on here or in real life I will do whatever I can. I'm currently in the East mids but towards the Autumn I will be in SE Wales.
Anyway, my love and support and positivity to all. And thank you all once again xxx

That is great news Deutsch

Thank you Twinset I hope everything goes well at your results appt and you're feeling a bit better this week x

Thanks. I seem to have slowed right down but I think that is a good thing as I am being more realistic

Deutsch that is the BEST news possible....i am beyond delighted for you!!!! Just shows we should never have "slot" concerns again...unless we are in Vegas playing the machines!!!!!
It's been lovely "knowing" you...go forth and have loads and loads of fun...yipppppeeeee!!
With lots of love Freddie.. .xxxxxxxxxxx

Ps...absolutely no reason to feel foolish or fraudulent...you had a scary and horrible experience. But I bet that sunshine today and sunset was more glorious and you appreciated it all the more. Sticking with the "weather" theme....every cloud and all that!! Take care and good luck with the move!! Xxxx

And twinset.. I reckon your body is telling you to rest...duvet and choccie for you!! Xxx

Good evening Lacies
Brilliant news Deutsch
Flippy enjoy your weekend away. I did google the Macmillan holistic review but it seems to be part of their 'Recovery Package'. As I won't be recovering I'm not sure it will apply to me but will make some enquiries about it.
freddy good luck with the rads. I can't offer any advice as I only had 2 strong targeted doses. Hotel sounds good. I did think it might cater for older people due to it's location which was rather judgmental of me
fluffy glad that you had good news from your CT scan.
I have been very tired the last couple of days but hopefully I'll feel brighter in a day or so. No appointments this week so it's enabled me to have some long naps. I have been informed that the copies of MDT notes, treatment plans and scans I requested are ready so will get these when I've sent the cheque for the fee. It will be good to see what's been discussed.

freddie I'm glad your planning went well. Interesting about the invisible tattoos! The hotel sounds nice :)

Deutsch phew! That's excellent news. You're not fraudulent at all. The worry is the same whether you get good or bad results. Of course if you had been prattling on about how you are just dying of a cold or something then maybe we would have been rolling our eyes but pretty much everyone on the thread will know that panic. I hope you're healing up well feel free to post/lurk if you need to, and maybe keep an eye out just in case any newbies have questions you can help with!

Tw1nset definitely try and take it easy

chewing I hope you have more energy today. That's good news about your notes. I have found the same thing with lots of Macmillan stuff. But it might be worth asking about it if you want one. I suppose if nobody draws their attention to it they can claim they didn't know they were forgetting a whole group of people

I hope everyone has a good day. I have my surgical check up later.

Goid luck with your check up Leslie.. .Will be thinking of you xx

Goid luck with your check up Leslie.. .Will be thinking of you xx

Thank you freddie :) the surgeon was very pleased with my recovery.

I'm sitting out in the sunshine knitting. Such a beautiful day. I hope everyone is enjoying it.

Deutsch that is fantastic! Really, really pleased for you. :)

Waving to all the lacies whether sunning themselves, knitting, napping, recovering, struggling, living.

Thank you Freddie, Chewing , Leslie and Argy. I will certainly be lurking and more than happy to answer questions should anyone new need that.
Leslie - glad the surgeon was pleased and you are feeling the benefit. For you and chewing I would still ask about the holistic needs thing. I did it really early on with my BCN and nowhere in there was there anything about recovering, just what you needed.
Lots of love x