Thank you. Am slowly turning a corner for the better this morning I think. And feeling less moany!
Right?? When I think about what I was doing three months ago it is ludicrous!!! I feel like my life got thrown off the back of a speeding truck, tossed upside down in the air and landed in a big smoosh of mud and I have got to figure out how to put it all back together! But the memories of happier times and the dream of future happier times are keeping me going. It will get better. Itās gonna be OK.
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I have a question for those of you whoāve had a picc line fitted. I have some questions:
Does the arm itās in hurt?
Can you lie on that side at night?
Do you have a painful shoulder/back?
How is the strength in the arm itās in?
I have absolutely no strength in my picc line arm at all which is alarming me as I do/did weights before all this shite. I canāt raise my arm and hold it above my shoulder. Iām having to sleep upright as I have so much shoulder pain round my scapula/muscle. This pain has been so debilitating for me, stopping me from sleeping, waking me up, canāt do normal stuff so just curious if anyone has any similarities. Thanks so much x
Iāve not had anything like that with my picc line to be honest. It only really bothers me if I forget itās there and knock it or catch it on something. My shoulder felt a little sore after it was fitted but that soon wore off after a couple of days. Might be worth asking one of the nurses? X
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Thanks for the strengthening words @nicnac17
Sorry you are still suffering with the indigestion, thats a good idea to keeo a track of what you eat and see what works for you. I have the Royal Marsden Cancer Cookbook and it has some good snack ideas, Iāll try to attach a picture.
Moan extremely legitimate in response to that friend! What were they thinking?? I think people are trying to discharge their own discomfort and fear when they saw awful dismissive things like that, but it just leaves you with all the horrible feelings. No wonder you felt knocked back. I do think it is fine to push back and say how it is for you but if you donāt have the energy, maybe minimise exposure to that person. Good information that they just canāt (or wonāt) cross the chasm to your experience and be the support you need. So sorry you had that experience.
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@nicnac17 I could have posted this myself but mindful I didnāt want to worry anyone who is about to get one. Mine has been in just over 2 x weeks now & really bothering me still. Was told i shouldnāt feel itās in there after a week or so & that I could pick up my 3 year old daughter no problems - neither of these are even remotely true for me. Iāve had mixed messages from healthcare profs as to strength training, general consensus was I could lift small weights if I felt up to it but not over my head, but I tried with some small weights & it did not feel right at all so I stopped.
Added to that I pushed for the district nurse to come & do my flush & change dressing, she came yesterday & has done it differently to how the hospital have been doing it - so that feels weird that too!
To answer your questions:
Does the arm itās in hurt? - hurt no but twinges often & essentially I can feel the line hanging out my arm so it doesnāt feel pleasant. Itās also felt like Iāve been punched in that arm continuously since it was put in. Keep getting told it would go away.
Can you lie on that side at night? - nope - sleeping on the opposite side which was the side of my op so not great or my back (but Iām a side sleeper)
Do you have a painful shoulder/back? - no, to be fair my back is okay (there are some back issues but I think they are filgastrim related).
How is the strength in the arm itās in? - like jelly!
Does yours bleed everytime itās cleaned? Again got told the bleeding would calm down but after a fresh dressing yesterday woke to a fresh pool of blood inside the dressing
I was worried re mine too as it kept bleeding and now they said on Wednesday that they hope it doesnāt move anymore so sounds like it may not last another 9 weeks. When dressings are removed it must pull it out. Am hoping as I canāt see any blood under the little round dressing itās stopped bleeding. I get the occasional feeling now but other than that it seems OK. Just hoping when they clean it tomorrow itās OK. Not sure why itās moved so much but been told donāt put a cover on it at home. I used to always wear a bandage type cover on it at least but they donāt gove them out now. I have some anyway though from before still.
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Good luck 
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@sharlou @Linda_Corinne thank you so much for the replies about the picc line. I was told the same should lead a normal life, shouldnāt notice it thereā¦ā¦ā¦ummm no! The district nurse is coming this afternoon to flush and clean it so Iām going to ask her if she canāt help Iām phoning the chemo nurse. Iām reacting to a dressing so they have to use a different type of dressing but I can see the line going into my arm and there is dried blood for sure.
When they put the picc in they said I have 50cm inside and 5cm outside and I need to count the 5 notches on the blue bit and if they get less ie itās going further inside me Iāve got to let them know. Tbh itās the lack of any strength thatās freaking the hell out of me to not be able to lift a 3kg above my head is not right in my mind.
And on top of all that a toothās cracked and fallen out wtf!!! Another weird side effect for me is my bites changed and my teeth feeling like they want to leave my gums and now this tooth!!!
@ake see I can moan too 
Right I fully believe that stress is a precursor as is food, as are medicines as is alcohol. I listened to a podcast about alcohol and quite honestly alcohol is simply cancer in a bottle, this podcast freaked the hell out of me because I LOVE a drink, cocktail I am there and since I was diagnosed I thought ok I can have one when I fancy one now this podcast has tipped me over the edge.
Stress I wouldnāt say my life has been over stressful although Iāve had stressful chapters. Couldnāt get pregnant tried fertility nothing happened and after 10 yrs of trying fell pregnant naturally. Now all this disturbed hormones/increased hormones giving birth was a factor but I was so stressed I was going to loose my baby (many miscarriages, near death etc etc) that stress was unpalpable and looking back Iād definitely say thatās a factor 14 years later. My onc said cancer is in us all but things will trigger that dormant cell to double and I do think stress is one of those triggers as I believe is lack of sleep.
Since this has happened to me I have become obsessed with food and ingredients and I am so angry food companies have been allowed to lie to us so they can make money. Sorry Iām ranting I become a right boring twat when I get on some topicsā¦ā¦ā¦
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@nicnac17
Your not whinging! Just sharing your thoughts! I went down a right rabbit hole on the food and drink business when first diagnosed. I think weāre all looking for answers. Ive hardly had any alcohol since diagnosis as I got very paranoid about feeding my hormone sensitive little parasite but moving forward does that mean thats it? I would like to enjoy a guilt free glass of something once in a while!! Just another thing to think about!!
Thank you for sharing the highs and lowsā¦re PICC lines. Honestly i cant find info like this anywhere else except from people going through it. I am now a bit more prepared for mine
Xx
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Thanks everyone. Home now . Everyone at hospital was so lovely. Have a fuzzy head and feel a bit sick at the mo xx
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I think Iām in that same rabbit hole 
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Yes listening to us taking about picc lines at least you have real life statements from people in real time. And you can have questions ready. When do you have your picc put in? Good luck with it x
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Take it easy and be kind to you, was the thought worse than the doing? Rest, lots of x
Donāt forget your anti sickness tablets. The point is not to feel sick at all, if you do on the tablets give your helpline a ring and they can change to another. 
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Hi @epic1 I am also home after #1 Feeling exactly the same as you, woozy and a bit sick. Trying to drink lots of water.
The whole process at hospital was actually ok, just hoping the side effects are mild.
Rest up!
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They gave me a strong anti sickness pill in hospital that they said would last for 5 days. They have also given me more to take if needed. Might have to break into them ! Rest up too xx
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I didnāt take any anti sickness on the next 2 days which they said was fine as the new ones I was given gave me diarreah (canāt win). I also had some by iv. So I was taking them unnecessarily causing me pain. I donāt think many people get this side effect though although I read someone had the chemo strength reduced which helped her pain.
Omg no one told me anything about the notches or it going back inside me 
I find it odd about all things that there must be national clinical guidance they all follow yet we are all told different things!
@Linda_Corinne mentioning being told to leave the covers off when home is helpful too thanks as I feel like mine should be uncovered when possible - if canāt be good for it to be constantly tightly covered Altho my hospital did give me a tubi grip thing to cover it & said I could leave it on all the time!
If anyone has any recommendations for covers for the PICC tho Iām all earsā¦bought 2 from PICC me & the material irritates me, the tubi grip one from the hospital is on its last legs