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msowl's avatar
msowl
Member
13 years ago

It's been awhile...

Hi All,

It has been quite a while since I posted last. After my surgery I just didn't feel up to anything much. I found the pain quite hard to deal with and of course being on Endone just zaps you as many of you can relate. Being in pain and just feeling blah is horrible and then I developed a seroma that kept getting bigger and it all got much worse. I fell into a bit of a "heap". Didn't want to do much and had no inclination for anything.

I forced myself to go to a close girlfiend's wedding and that was lovely. Then when I finally got in to see the BC nurse and they could see the seroma needed draining,,,omg! That was a really hard thing to go through. The young doctor who drained it (430mls) went in with the needle in a numb area and then proceeded to move the needle around inside me "to get all the fluid"!!! Horrible, painful experience that made me sick to my stomach. I thought, please don't let it fill up again!

Well it did, not so bad and the next time the nurse on duty drained it herself. Much better. I have had it drained 3 times in all.  The pain with having a seroma is really bad and all the reading I did said it shouldn't hurt! So not true!

Well things got better as they do. The pain eased and I started to feel better. I had a niggling worry in the back of my mind about my heart after bad chest pain in recovery (third episode in 3 months), but I had seen a cardiologist and was booked in for an angiogram. That showed clear coronary arteries...thank goodness. My oncologist was relieved as well.

Last week was difficult and I was just so sick of hospitals and doctors. I wanted OFF this train! (The port-a-cath was inserted on Wednesday, so spent all day in hospital, oncology visit ready for chemo on Thursday and knew I had to be back again on Friday!)

So strange though...on Friday morning as I was getting ready for my pick up to the hospital, I suddenly realised that I felt the best I had in a long time. Really strong, in control and actually in a reasonably happy place. Don't know where it all came from, but it was a good thing because I wasn't scared and my first chemo went well. At least until I got home again. Oh goodness...the nausea was extreme! I thought I had better eat something as I hadn't had much all day. Managed a piece of dry toast with a vegemite and then sucked peppermints and drank water for the rest ot the night. That was all I could handle! So much for nutrition.

The second day after my treatment I didn't feel good, had a shower after which my hands and feet got really itchy and swollen. Then I noticed a rash starting on my arms that got worse and worse and started spreading over my body! My tongue felt funny and my son said it looked swollen! Didn't know what to do! called the Oncology ward (it was a Sunday) and was told "see a doctor". My clinic couldn't fit me in but I was told to call Medcall. I'm never usually in need of doctors like this so it's all such an unknown. The poor woman at the other end of the phone could hardly understand me my tongue was so swollen! I am so very lucky that the doctor came in under 10 minutes. He took one look at me, said anaphylactic shock and injected adrenalin. When he gave me steriods to take after 5 minutes I could hardly get my throat to work to swallow them! I had had no idea it was serious! He called an ambulance and I spent over 24 hours in  hospital. Not nice at all!

None of the medical staff could figure out what had caused this. They all agreed that if it was from a chemo drug that it would have happened more quickly after treatment, so they ended up thinking it was most probably one of the anti-nausea drugs I was prescribed. Or the injection had to have on the Saturday to increase my white cell count. 

I really hope they find out what it is...it was scary and the rash is horrible although nearly gone now (4 days later). It has affected me too in the way I feel.

Has anyone else ever had anything like this happen to them?

I'm struggling to eat as I just don't feel that hungry and it is so true...things just don't taste the same! Mashed kumara and peas, yoghurt, ginger beer! These are all good but I find only a little bit is enough. As my mouth feels stranger and stranger every day soft food is much easier to handle.

Also my hair has lost it sheen and bouyancy and my scalp feels dry and tingly and quite itchy. Is this the signs of it coming out? I know it's going to happen and thought I was prepared but today feel sad about it.

Would love to hear from others with seromas etc and dealing with chemo.

T. xx

13 Replies

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  • msowl's avatar
    msowl
    Member
    13 years ago

    Thank you so much Deb for your support. It really means a lot.

    Teresa x

  • dmed's avatar
    dmed
    Member
    13 years ago
    Hi my hair went about ten days and I know just that feeling. Sorry you have to go though this as well . I have finished all my treatment now and still have times with the fatigue. My hair grown enough to go without a hat on. I don't know how people could work either I had days when I just did nothing .getting on here helped so much knowing you could get answers to things that were worrying me. Take advantage of all the support services they are very helpful. Lovely how are family steps up when we need them my girls were great too.i found by pushing to make myself get dressed helped as I felt better and gave me back some control. But I lost it a bit and needed to talk to my gp and get help though a psychologist . It's a long road but help is out there in so many forms just need to admit we need the help and the journey not so daunting . Take care. Deb
  • dmed's avatar
    dmed
    Member
    13 years ago
    Hi my hair went about ten days and I know just that feeling. Sorry you have to go though this as well . I have finished all my treatment now and still have times with the fatigue. My hair grown enough to go without a hat on. I don't know how people could work either I had days when I just did nothing .getting on here helped so much knowing you could get answers to things that were worrying me. Take advantage of all the support services they are very helpful. Lovely how are family steps up when we need them my girls were great too.i found by pushing to make myself get dressed helped as I felt better and gave me back some control. But I lost it a bit and needed to talk to my gp and get help though a psychologist . It's a long road but help is out there in so many forms just need to admit we need the help and the journey not so daunting . Take care. Deb
  • Mich_x's avatar
    Mich_x
    Member
    13 years ago

    I am so glad we can be there for your Teresa.  It is all still so fresh in my mind so I very much understand where you are coming from and how you are feeling.  Hang in there kiddo.  I do agree that we are so lucky to have this site and to be able to share, vent, and what ever else we need to do on different days.  Every day is different I found on my journey.  I don't know what I would have done without this site and all my lovely pink sisters when I needed them most.

    I found there were times when I couldn't get on here because I was either too sick, too tired, too depressed and not wanting to deal with anything etc. etc. but we are always here for you when you want to talk, vent or whatever.

    We are there for you every step of the way. 

    LOL, Mich xoxo

  • msowl's avatar
    msowl
    Member
    13 years ago

    Thanks Mich for your suggestions. It is definitely hour by hour! I think when you are at the beginning of it all it just seems like such a long path ahead...but tonight I do feel a bit stronger. I have such a desire to be as healthy and fit as possible, and yes this has to wait to happen, but it will. I am so grateful for you and the other women on this site...THANKYOU! Teresa xxx

  • Mich_x's avatar
    Mich_x
    Member
    13 years ago

    Hey Teresa

    I am sorry that you have had a rough ride with your first chemo.  It is a bummer and all I can suggest is just try and be as prepared as you possibly can for what may unfold.  Reading lots of posts about different things helped me a lot.  Some things you just can't be prepared for as you found out with your trip to hospital you poor luv.  I kept an emergency bag packed ready for the midnight rush to hospital but never had to use it thank god.

    I found my hair fell out around the 13 to 14th day.  It didn't start to feel less tingly or sore until I had it totally shaved off.  A number 3 cut still left prickly prickles which weren't nice to sleep on.  I was astounded to watch as your hair follicles just start to lose their lustre and die.  It just showed how the chemo can kill off those good and bad cells so quickly.

    I agree with you in that I have no idea how some people manage to work through their chemo, I tried desperately but through all the side effects like chemo brain, bone/nerve pain, nausea etc. etc. etc. I just couldn't do it and I didn't want to let people down either.

    I found what helped me was that I took it "day by day and sometimes just hour by hour".  I also told myself a hundred times a day that it is all just temporary and that your taste buds will return, your appetite will return, your hair will grow back and on it went.  Don't feel bad that you can't work or you can't exercise or that you can't manage to put on makeup or clean the house like you used to because on the good days you will and when you get through this crappy journey you will eventually get back to doing all those things that you can't manage at the moment (that is if you want to by then cause you might have different priorities then, I know I have).

    Take care and nurture yourself and congratulate your boys for being such a great help to their mum when she needs them the most.

    LOL, wishing you a smoother journey that you have had so far, Mich xoxoxo

  • msowl's avatar
    msowl
    Member
    13 years ago

    Hi Deb. Yes my head is still feeling funny...no matter how clean I know it is it just feels like I haven't washed it. And like something is crawling over my scalp! I haven't lost any hair as yet. Today is the eighth day after my first dose of FEC. How soon did you lose your hair? I think I'm prepared for that but just don't know. I have always tried to look nice and take care of my appearance, but right now just having a shower and getting dressed is enough! I haven't put any makeup on in 7 days! The fatigue has hit me really quickly and it's also the unwell feeling. I try to do a bit (washing, tidying the kitchen) but then need to sit down. I am so thankful that my 2 beautiful sons are stepping up to the plate and helping. I honestly don't know how some women can still go to work. My goodness I admire them! How far along your journey are you Deb? Thankyou for your support.

    Teresa x

     

  • dmed's avatar
    dmed
    Member
    13 years ago
    I totally agree. I drank apple juice and now the thought of it makes me sick. Also one thing I found was eat nothing too hot as your mouth can't handle the extreme temps. Is your hair still tingly I was totally amazed at how quickly my hair fell out and how sore my head was after treatment .i didn't handle that very well until I shaved it all off. Think it's about staying in control. Was quite daunted by the fatigue when it hits you but just have to be kind to yourself and take it easy. Debxx
  • dmed's avatar
    dmed
    Member
    13 years ago
    I totally agree. I drank apple juice and now the thought of it makes me sick. Also one thing I found was eat nothing too hot as your mouth can't handle the extreme temps. Is your hair still tingly I was totally amazed at how quickly my hair fell out and how sore my head was after treatment .i didn't handle that very well until I shaved it all off. Think it's about staying in control. Was quite daunted by the fatigue when it hits you but just have to be kind to yourself and take it easy. Debxx
  • msowl's avatar
    msowl
    Member
    13 years ago

    Tony it is always good to hear from you! Yes it is a horrible ride and we can't get off! Not looking forward to having my hair fall out although I feel as prepared as I can be. I haven't cried much at all...have a feeling that the shaving session will be when it happens. I'm not embracing the idea of bald either let me tell you! The way you describe your mouth feeling like it is lined with fur is exactly what it's like. A friend suggested I try Frosty Fruits Lemon,Lime & Bitters and they are nice. Can't suck them though, have to eat them slowly. No more peppermints either as they just irritate. Oh well...one treatment down...5 to go! Urgghhh!! Thanks for listening...and being there for me. T. xx