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! :)

Sorry to keep dropping in and then disappearing for days/weeks on end! I wanted to ask, has anyone had any problems with their eyesight after chemo. I had my last Tax 2months ago now and since then have really been struggling with my eyesight. Its hard to describe but its like I have to really concentrate to get my eyes to focus on anything especially moving objects. I went for an eye test (which my breastcare nurse suggested the first step) and have had my prescription changed but my new glasses, although are much clearer haven't made the sight thing any better. My nurse was going to speak to the oncologist and get back to me but was hoping someone on here might have some clues as to what is going on. Keep going from thinking its just a side effect of chemo to there must be something sinister lurking in my brain :(

Hiya. I would really like some advice? :)
I am going to be transferred to a specialist cancer unit (from my local hospital (which is where I am at now)). I am 21. I will be placed on the teenage/young adult one.
There will be children as young as 13 there (it has 8 beds).
Does anyone have any experience of this? I just don't know how I'll feel being with children - is it awkward?

Challie I think you will be more comfortable in the teenage/young adult unit. They often have sofas, TV etc which you don't get in most chemo day units. It also isn't great being the youngest person on the chemo ward. Of course someone has to be, but if they are offering a special unit I would take it. I understand you are feeling anxious about being the oldest person in the young persons unit, but I think it will be fine.

I'm not sure what cancer you have but I know of some people from Facebook sites who were early 20's and had treatment in these units and said they were geared up to their needs.

Thank you :)
I am really nervous. It seems lovely though and like a little home? It's kind of scary, I was in my last year of uni :( I suppose a year ago I would have no problems going as I felt very young but now I'm close to graduating I feel like I've matured a lot. I think they take people from 13-24 on this unit but have been told I will be the oldest.

Hi Challie and welcome. I was 21 when I was diagnosed too. I didn't go to a specialist unit though as I didn't have any inpatient treatment. I'm imagining you have something like leukaemia where you'll be in hospital for a while? Hopefully it'll be much more comfortable and less boring than "normal" wards. Also the staff will be used to young people with cancer so hopefully you won't get any annoying awkwardness about it.

toomanybottoms my eyes took ages to recover from chemo last time. The same thing with focusing, especially when I was tired or when watching telly etc. I was told it was probably from the steroids and could take a while to wear off. It's happened again since I've restarted chemo. I hope your oncologist can reassure you :)

Flippy that sounds like a tough day. Did the blood transfusion help? I hope you don't feel too grim today. I've no experience of the cold cap, but I hope it was effective enough. Definitely worth taking charge of it next time!

weegie pleased you've got an appointment and not too much longer to wait

Creme remember that people tend to post online when they're having an unusual or negative experience. Very few people post saying how they're just getting on with life after cancer treatment or that everything is going to plan. And sometimes people exaggerate for whatever reason.

Argy I hope you are now drain-free!

Mysillydog how are things?

I hope everyone is having a nice day. I'm having a weekend by the sea and it's been spectacular today :)

Yes thanks Leslie I am now drain-free! Makes such a difference. Glad you're having some seaside time - I'm off to the coast myself next weekend. Sea air always makes me feel good and I sleep very well!

Morning Lacies,
I have been lurking (hoping not to join, awaiting a 2ww appointment), but would like to ask- how did you become Lacies?
Was it a nice typo that stuck, or is it because you have Lacey holes from surgery? Or something else?
Must say, you all seem a lovely supportive bunch, it's been a lovely thread to read.

Great news Argy

Milliways hi! I hope you get your appointment quickly. Yes, lacies was a typo that stuck :)

Morning everyone :)
Leslie Thank you for your message, you've put my mind at ease that it can be a side effect (sorry that you had to go through it as well though). Googling didn't really come up with much help and most people seem to just suffer from watery eyes rather than sight problems. Your trip to the seaside sounds great, it seems like spring is on its way as the weather has been lovely and mild compared to a few weeks ago. Roll on the warmer weather!!

Evening all,
Nice to see good news for some. for all
Can anyone help with a query? I am going to see another oncologist for a further opinion and they require my scans,treatment plan and histology. I have requested these but have been told by the secretary that these cannot be sent until my onc has agreed to this but he is on holiday.
I then said that as I was the patient then surely I could have this information but again was told that this would also have to be run by the onc first as a matter of courtesy. Surely I am entitled to have a copy of this information? Has anyone else had trouble getting their records?

Yes you are entitled chewing - under the data protection act if nothing else. However they can put hurdles up if they choose (e.g. delays or charges for photocopying) - it might be easier to wait for the consultant's approval if you have enough time. I can't see why s/he would refuse. I expect someone is just scared of doing it without consultant sanction.

Thanks Argy. Panic is now over as it appears that a secretary who is now on holiday sent them across last week

Thank goodness for that chewing. Though how ridiculous that the other secretary was going to delay it for a matter of courtesy as if you don't have enough on your plate. I hope the other oncologist is helpful. Is it someone local or are you going to a specialist hospital somewhere?

toomanybottoms fingers crossed for you :) it does feel like spring is in the air. I'm sure some sunshine will do us all good!

I saw my surgeon today. I didn't see him after my procedure earlier this month. His colleague had told me everything looked fine, but actually the chemo has caused visible damage to my bowel. He has provisionally agreed to do a surgery that will address most of bowel issues. I'm trying not to get too excited as my oncologist needs to agree and they need to fit it in with my chemo. But it will make such a difference to my quality of life. At the moment it's my bowel issues that restrict me, rather than the cancer itself.

Hi Lesley I'm seeing an onc in London. If they can't help at least I can say I tried all I could. Still waiting on referrals to specialist hospitals. Hope your op gets the go ahead.

Morning Lacies

Apologies I have not been on here for aggggggeeeees due to a combination of things really, and also forgetting my password and then forgetting to ask for a new one. Blame my chemo brain.

I do need to catch up on the last couple of weeks worth of posts but in the meantime hope everyone is doing as well as they possibly can.

From my part I have got through 3 rounds of FEC and with the help of the various meds that has been "manageable" although a few blips along the way. I have even managed to work pretty much full time during that part of the treatment.

Unfortunately the Docetaxol element has not been quite as good - had the first one just under two weeks ago and it has knocked me sideways. Ended up in hospital on the verge of neutropenic sepsis which was just caught in time really. I think it was caused by a very bad case of mucositis, oral thrush and ulcers (one of the worst cases they had seen) so yet another shed load of drugs and feeling a bit miserable. I'm not sure why but I thought the T would be easier although as my oncologist looked at me as though I had completely lost my mind when I said that to him!

One of the worst side effects has been the effect on my hands - they feel (and look) like they have been put into a vat of boiling water and are really sore and red, particularly between my fingers which makes every day tasks really difficult and painful (although I can still type, fortunately). There doesn't seem to be anything that helps despite using various moisturisers and creams.

For those asking about hats there is a place called Headcovers Unlimited which do some lovely Cozy Caps which are really soft, come in a myriad of different colours and wash well. They are based in the US so it is worth doing one big order as you end up having to pay customs duty on top. I think you can get something similar from Amazon but there is limited choice on colours. I tend to wear these on a daily basis round the house/when not wearing a wig and have a couple of cheapy ones for wearing in bed at night as my head gets cold.

I'll now try and catch up on everyone.

Hi just checking in
flippy hope you are feeling ok after chemo and the blood transfusion
argy great to hear the drains are out hope you are healing well.
leslie fingers crossed that you can have your surgery
chewing good luck with the oncologist
cookie see if you can get GC SF injections after the chemo, it should help you increase your neutrophils and prevent becoming neutrapenic.

I have chemo number 3 on Friday, so half way through. I'm considering having a henna tattoo done on my head, I've seen some lovely designs, but might wait until my last chemo as a kind of celebration.

Seeing the oncologist tomorrow so armed with questions about how to avoid hospital!
to you all

Hello Lacies. I try to read as many posts as possible and I am glad the spirit of supporting one another is as always. Since my latest tests during which they could find nothing sinister, I have resorted to hanging cancer in the back of my closet and getting along with life..well untill something brings it bavk to the forefront. I do not need reminders of course but it is good to not worry ALL the time. I wore my sleeve and glove today for the first time since it was prescribed for me by the Lymphodema nurse..she said to wear them only when needed and I had a dull but uncomfortable ache i. My arm today so I decided to give it a go. I worse them for five hours and during my work out which did actually help. Since taking it off it has been much much better.
Leslie i can understand how much you need that surgery to sort out the bowel issues and I hope it works out for you so you can enjoy a better quality of life.
chewing best of luck with the London oncologist! Do let us know how it goes.
Argy I so remember how relieved I was to have the drains out! It will make such a massive difference.
Waving to all the rest and apologies for not mentioning everybody. Sadly, ther are so many and I need to concentrate a whole lot more to be able to follow up properly.
Take care all.

royal it's great to hear that cancer is fading into the background a bit. Also good that the sleeve and glove have been helpful today.

halfbaked the tattoo sounds fun! Congrats on being nearly halfway through :)

Cookie sorry to hear that the Tax isn't going very well, and about your hospital admission. That sounds very unpleasant. I hope they can prevent that in future cycles. My oncologist has put me on aciclovir to prevent mucositis. Your hands sound very painful. Is the skin dry? My hands are very dry from chemo and they split and bleed easily. The best moisturiser I've found is called O'Keeffes working hands cream. I have tried various others but it is the only one that has actually softened the scaly bits.

chewing I hope London is not too far for you to travel and I really hope they can help

Leslie thanks for asking, I am getting on well. Only 3 more Herceptin treatments to go. Like Challie I was in the final year of uni when cancer hit, although I am a mature student. I deferred for a year but am back now, and am currently sitting in the library MNing instead of writing my dissertation

Love to everyone. I mostly lurk these days. I know lots of people are having a hard time, but for most people Amber's positive posts are what happens.

Just to let you know my appointment has been moved to Friday!

Ach that's frustrating weegie but I guess it happens. Best of luck for Friday. x

Mysillydog I'm glad you're nearly finished with the herceptin. Does it have any side effects? Good luck with your dissertation. Did you have any exams this term?

I was on a placement year when I was diagnosed and went back to uni a couple of months after treatment finished :)

weegie sorry your appointment has been delayed. How frustrating

Hi just a quick check in, saw my oncologist yesterday and my dose has been slightly tweaked down to try and avoid a hospital visit. It was also suggested that I suck in frozen grapes during chemo (only works during chemo) to help stop mouth ulcers. I'm going to give it a try and will report back.
The best news is that the lump seems to have shrunk, having an ultrasound next week to confirm. It makes all the shitty days worthwhile when you get a little bit of good news.
to you lovely lot.

On frozen grapes, I mean

Hello everyone, I can’t believe that’s my first week over, and so far so good. I’ve felt tired and a bit ‘meh’ but nothing too bad at all I’m pleased to say. Phew. Hopefully I haven’t jinxed it by saying that!

Leslie, the blood transfusion definitely helped. When will you know about your potential surgery? It’s not really the same, but I had some fairly bad post birth injuries which took years to be properly diagnosed and treated, and when I finally had the surgery it made such a difference to my life, so I think I understand where you’re coming from.

Chewing, that’s good you got your reports sorted out, but sheesh! Cookie, hope you’re feeling a bit better. Halfbaked, good luck for tomorrow, and enjoy the frozen grapes. I’ve seen some info on American forums where patients are given ice chips to suck during chemo, same principle as the cold cap from the info there, constricting the blood vessels. Quite a few of them also ice their fingers and toes during tax chemo. Good luck to you too weegie, although annoying your appointment was moved. I’m in weegieland too. Wave to everyone else.