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! :)

halfbaked I had a PICC line which worked well for me - I had 4 cycles of chemo, I had a Limbo cover. It is dull keeping it dry and being careful not to bump it on things. You also have to have it flushed weekly at the hospital or clinic - I was able to have mine done very locally so no trog to the hospital.
I have a friend with a port which she's very pleased with. Less intrusive to daily life but obviously a more invasive procedure to put in.
I did read somewhere that the limbo covers can be got on prescription? I bought mine and think it was less than £20.

This is the first time I've posted on here, I haven't read the comments yet but once I'm finished I will.

Has anyone on here ever had cervical cancer or precancerous cells or even ovarian cancer? The reason I ask is I have a list of symptoms and I've looked online (I know you should never look online) and could be either of these. I've had 4 abnormal smear tests in the past but the last one I had in October 2014 came back normal. I phoned the doctors and they're saying I can't have another smear until October this year unless the GP refers me for one. I've booked the next available appointment with my GP this Tuesday at 9.30. I am terrified that I'm going to have cancer, I've been thinking about it for the last week, can't sleep, can't eat, all I can think of is my kids and what could happen.

I've read the thread and I must say you guys are such an inspiration, I wish you all the best health in 2017.

However, I think I've posted on the wrong place so I've created my own thread.

Hi everyone ,

So sorry to see new names and hear so many of you are struggling here at the moment

Thanks for asking after me Leslie. Hope you are feeling better and get sent home soon .

I'm doing ok , still got those pesky pins and needles but where it was knees to toes , wrists to fingertips they are now just fingers and ball of foot to toes. Unfortunately this cold weather means they are pretty full on but I can see an end coming. I have a scan later this month and then my consultant says he will probably drop the scan till this time in 2018 . . . .that scares me a little , he assured me I will know if it comes back , I don't have that confidence in myself.

I had a picc line . I found that cover a complete pain in the backside ! Admittedly I don't have skinny arms , I found wrapping clingfilm round it much easier
If I had to go through chemo again I think I would ask for a picc line, but only if I can get it flushed etc at the hospital or wherever.

I was diagnosed April 2015 and my cancer was stage 4 endometrial.

leslie, are you ok? I don't know if you saw Tuttis post, but if you did I imagine you're quite upset. As I said to her, I must have been missing that week because I had no idea anything had happened. Evidently I wasn't the only one who missed it.

I hope you're feeling better today, maybe even on your way home. Such emotional times at the moment. It hasn't been a good start to the year for many but my hope is that everyone feels safe in posting still and getting the support that I found so valuable a couple of years ago.

I suppose it's natural that there will be the occasional disagreement, feelings are very raw and people are extremely vulnerable if they need to be here. To anyone new please don't be alarmed, this is a good place to be.

I wasn't here to see the thread referred to. What I will say though is that if you feel Misunderstood then perhaps consider this feeling for others who may well have been misunderstood by you as well. So in the incident a phrase was used in innocence but taken badly. But then the subsequent bad reaction has been taken badly.
Best to move forward with forgiveness and the feeling that people generally do things from a nice place and mean well...
life really is too short to hold grudges and negative feelings here.

Hello lacies. I have absolutely no recollection of the incident mentioned either and hence kept asking about Tutti in the previous thread until someone brought it up and I will say what I said then, we are all here to give support to one another and to help one another out on this cancer trail and I am so sorry this had to happen. The fact hardly any of us actually know each other does make it easy to misunderstand, misinterpret, etc.
leslie, I do hope you are feeling better today.
I would like to respond to each and every post but am quite tired from lack of proper sleep. There will always be so eone here who will respond though. Bless each and every one of you.

Just signing it to the new thread and sending so much love to all of you. Leslie you are a real star to keep this thread going when you are feeling so ill and in hospital.
I saw that several people are extra stressed about a tnbc diagnosis.
I was diagnosed with tn in 2006. Like you I was terrified but it doesn't have to be all gloom and doom. It usually responds very well to chemo and , while it is aggressive in the first 3 years post dx, the risk reduces after that. By 5 years it is the same as for +++ patients and after 8-10 years your risk is much much lower. Some research says it is negligible. New treatments are coming all the time and there is some focus on tnbc now. When I was dx taxotere (docetaxol) was only available if you had secondaries. I was lucky, I had private medical insurance which meant I had it for my primary.
I am now 72 and have grandchildren I never expected to see. Hang in there ladies. Love and positive vibes to all of you

Good evening all

Sorry I am still very lethargic so won't reply to all

bellalurgy you are having such a rough time of it sorry I don't really have any advice but I hope you get some decent help soon!

Mouse I'm sure that will be reassuring for others with triple negative, and I'm glad you're still here. I bet your grandchildren are too :)

Tutti I saw your post last night, but I'm afraid I was not feeling well enough to take it in properly or respond. I see it has now been deleted. As others have said, it's best we keep personal disagreements off this thread so that it can be a safe and supportive place, especially with so many people newly diagnosed. I saw your other thread and you seem to be struggling at the moment so I hope you feel able to return to this thread for support if you want to I hope we can put this behind us, if you wish to discuss it further then please PM me instead.

I also suggest that we try to keep debate about e.g. disablism away from the thread too. There was quite an active discussion about it in Site Stuff a while back, I don't know if that is still continuing.

Thank you to all who have asked about me or PMed. I'm sorry to have worried some of you. It's been a horrible few days, but I have been reassured by my surgeon that he can't find anything sinister (he had a good poke of my tummy!) so they think the pain is just from the antibiotics. I'm due to finish the final course tonight so hopefully then it will start to improve :) I'm quite weak and a bit dopey, but I've been checking in even if not replying and thinking of all those who have appointments, treatment or anything else on their mind

Stila glad the pins and needles are improving. Dropping to yearly scans is a bit worrying, but they do tend to err on the side of caution so hopefully it is a good sign :)

xxchristenxx you're welcome here, but I can't think of any regular posters who have had cervical cancer. Maybe a lurker will see your post and be able to help. Hopefully your own thread might be more useful as people will easily spot the title :) all the best anyway. I hope you get some answers soon and there is a harmless explanation for your symptoms!

Mybloodykids what a horrible appointment. Triple negative is getting more and more treatable, as are all types of breast cancer. If it's not in your lymph nodes that's a good sign. Some oncologists can be very gloomy. Mine is too, but I am prepared for it now so I just laugh about it later!

ArgyMargy I hope your MRI went well

Hey leslie, hope the pain's dying down. Had a friend over tonight who hadn't known about the biopsy. It's so exhausting to explain. After all I've been through, a hysteroscopy is nothing. My big boy (9) is still very upset about any reference to my illness. How do I support his resilience?

Hi wee, I thought it was a hysteroscopy you were having, can't imagine how your dr was trying to get a sample without one. Anyway, that's what I was trying to explain about, I've had two and they were fine. Sorry your ds is still upset but I have no advice I'm afraid. Mine are much older and very wrapped up in their own lives now.

Och, I'm just upset tonight at what he's had to go through. I was on the sofa yesterday and the wee one (3) was bringing me stuff and telling me stories, and he just kept away. And I know it's because he's scared. Poor lad, he should never have had to go through this.

Leslie it's good to hear that you are improving. I hope you are managing to get some rest and that you will be home soon. I'm thinking of you all, and good luck Flippy for your surgery. Is it on Monday?

Good morning. I've eaten some toast, hip hip hooray :)

weebarra do you think he might benefit from some counselling? His school might be able to help arrange some, or perhaps a local cancer charity. I'm not sure if Macmillan do anything like that for children. It must be upsetting for you too

Hi thanks java pepper and stilafor your comments I'm getting a PICC line - is it weird to be quite happy about that?! Luckily I live close to the hospital so weekly trips up for flushing are not a problem and thankfully they were quite happy for me to have one. Good trip about cling film, my arms are on the chunky side.

I'm having 6 cycles of docetaxel and carboplatin, starting next Friday.
I've got an appt for a wig too.
It's made it all quite real although I do just want to get treatment started now. Good news is the second biopsy says it's not in my lymph nodes.

wee does your school have a parent support worker? Sometimes they can help access help for your son if he needs support.

mouse thank you for your post, I have tnbc so it's always good to hear a positive story.
mykids I know there is a lot of doom and gloom about tnbc, I found that (despite being told not to Google) much of the information on the internet is out of date. However I'm not denying it means we are at greater risk of it reoccurring. But in the majority of cases it doesn't. Many people posting on forums are people who have cancer and we don't get to hear so much of those who are cancer free because they are off living their lives. (Like mouse)

leslie glad you are feeling better, I hope the day continue to improve for you.

Halfbaked excellent news about the biopsy and your PICC line. Are you taking someone with you to your wig appointment? I hope you find one you like :) it's strange when it starts to sink in that this is really happening. But the sooner you get started, the sooner it will all be over. I know six cycles seems like ages right now, but it will go quite quickly.

We may have to put you in the naughty corner for your Googling though yes, lots is out of date and people rarely post to say they're fine. That's why this thread is quite good as people post both good and bad stuff so it gives a more realistic picture of life with and after cancer

Sorry everyone that I have been a bit gloomy recently. I hadn't realised quite how much the pain was affecting me until it eased off. I've managed to eat lunch too. The contrast is amazing. Yesterday I felt doomed and was imagining I'd never get better, be stuck in hospital etc but today it all feels manageable and I have been discussing possible holidays and all sorts :)

Good to hear that Leslie

Chewing How are you feeling today? I've been thinking about you lots and hoping your headache subsided

Good to hear you've turned a corner leslie, although just like the rest of us you are allowed to feel gloomy once in a while!

halfbaked I tried the clingfilm thing. I just don't have the dexterity to wrap my arm up one handed. I had such a temper tantrum the one time I tried alone. There was much unladylike language! Didn't help that DH found it hilarious

Glad to hear you are a bit brighter Leslie
Hi Jo I am feeling better today thank you. My GP wasn't sure what was wrong but the lumps were enlarged glands so it was thought that I had an infection of some kind. On antibiotics and the lumps and headaches have now gone and I have stopped vomiting. I've also started to eat again today and got dressed and out the house as I had an MRI scan of my head. It would be nice to have negative results but I won't get my hopes up. Not read back much but hope everyone is doing ok