Enough is Enough

So tired of complaining but got to get stuff off my chest and don't want to burden my family so I just type it away so here goes. Finally got home from the hospital on Sunday after being admitted Wednesday following CT scan that had the ER doctor concerned I needed my appendix removed. Well it wasn't my appendix it was a severe abscess on my right ovary and all through out my pelvis. So had emergency surgery to drain the abscess, wash out and test the nasty fluid from my pelvis and repair a hernia I didn't even know I had from my previous surgery. Started on multiple strong IV Antibiotics. Nothing to protect me from secondary issues caused by Antibiotics(why be proactive right ? )Well because of the very strong antibiotics and how many doses I then started having trouble eating or drinking because of sores and thrush in my mouth and throat. And heart burn. No sleep. Feeling worse by this point (Saturday) than I did when I went to the hospital cause I have pain and all the other issues and then the IV site messed up whole arm one huge bruise and swollen had to get that changed. Refused all Antibiotics on late night shift Saturday and Sunday morning because I was so sick and white blood cell count back to normal. Got prescriptions for diflucan and pain meds and paper work to take with me to my ONC at my next appointment before surgery. Now my feet and legs are swelling where it looks like I'm about to give birth at any moment and my blood pressure that I usually never have problems with is now high and my pulse is low( started at hospital after surgery nurses said it had been happening with several women post op lately) cant get the ONC to call me back to see what I need to do or if I can get a appointment sooner cause I still feel horrible and can't figure out where all these weird symptoms are coming from. I just want to go back to being able to function. I can't eat and I can't sleep. I'm miserable. Sorry for whining. I know we all have ailments as we go thru this but goodness. Am I loosing my mind? Anyone else have any of this stuff?

23 Replies

  • Hi Jess

    Can totally understand why you feel like you've had enough with everything you've been through over the last few days . Especially needing an emergency procedure and coming out of hospital feeling almost worst than when you went in . No wonder you feel like complaining . Think it's so hard when we feel so unwell and do not have a plan in place or any answers .

    Keep ringing and emailing your oncologist secretary . Do you have an emergency number for them ? Or a CNS nurse helpline ? As you are feeling so unwell and your blood pressure and pulse have been messing around I would definitely go and see your GP today to get checked out and maybe get them to ring your consultant to help coordinate things .

    If you start feeling worse go back to A E to get checked out .

    Hang on in there Jess , have you got someone at home to give you some TLC ?

    Sending a big hug and hope you start feeling more comfortable soon and get some answers .

    Love and best wishes Kim x

  • Thank you. Yes my children and my mom are looking after me. I do feel slightly better each day with lots of rest. Don't have a emergency number for the ONC and they haven't given me a nurse 24 hour number yet because they only do that once the chemo starts here. Thanks so much for the advice

  • Hi Jess,I understand about the family I have a great supportive family but I know that sometimes they need a break from all my problems.that is way this site is soooo much help so if it's helping then we are all here for you.. Cheers take care Lorraine🎉🎉

  • Wow how rotten is all that. When the help you have access to is the problem then what can you do? As Kim says I would see if the CNS nurse can help. I found you have to have several phone numbers who you can call on. I have the palliative care nurses as my support team. I know that I can call them any tick of the clock. My GP is also great. So hard for you to have to do all the pushing when you are so ill. Sending hugs. Keep on venting to us. We can handle it. 😊

  • My GP has been good to me but he had left the office early yesterday so I am going to try and see him today to see if he can help figure out why I'm having such a hard time after all those antibiotics. If I had already started treatment I would have more access to help but because I'm still waiting for surgery there isn't a lot I can do. GYN says talk to GP GP sometimes says talk to ONC. No one wants to do anything with cancer sitting in there. Crazy but true. But I will keep calling until I get an answer

  • Hi Jess.What a rotten time you've had , supposed to come home feeling better - not worse.Keep pushing to see someone today ,although that in itself wears you out.Hope you soon get some help .Moan away on here , that's what we're for.I don't post very often , but check in at least once a day.

    Sending hugs xx

  • I'm going to keep calling and driving them crazy till someone calls me back. Even if I have to start finding numbers for hospital admin

  • Jess, you are not losing your mind. I am very concerned about the swelling in your legs and your high blood pressure. This can be a heart issue. Do not wait for an appointment! Call your doctor and get examined. Sepsis can begin this way. It can kill you. Antibiotics have to be taken for their FULL COURSE. You can not just refuse them because ONE lab result shows good counts. If the infection is not completely killed it can come back even stronger. This is very important. Do not wait. Go to A and E if you have to.

  • I know I have to take the full course of treatment and I'm a nurse so I really know lol. Have never had any heart issues I think this is more of toxicity from the IV Antibiotics they had me on more than a heart issue but I'm trying to get in to see my GP and go over symptoms with him and figure out what else I need to do. Thanks so much for all the well wishes.

  • Dear Jess, like others have commented, this sounds awful and I am really concerned that your Gyny-Oncology team have not taken full management of your pain, infection etc.

    Where are you though as there can be slightly different systems in countries? Like most here, I'm in the UK so below is what I would suggest here...

    When you say the Onc won't take your calls, please don't give up, perhaps your GP can play a role here (they may well see you as an emergency appointment?) or as others have said, try your CNS, the department secretary or speak to PALs (or something similar)? All oncology cases & treatments are discussed at a weekly MDT meeting and so I would have thought the changes & interventions in recent days would need to be included and reviewed so your notes will be vital.

    Hopefully your GP and Onc will soon take over medical management of what's happening, but please don't take any risks with concerning symptoms and wait for them.

    Wishing you hope & strength Sx

  • Thank you so much. I'm hanging in and as soon as offices open this morning I will be calling until I get a answer. Here in the US for some reason no one wants to take charge of treatment as a whole. Each doctor only wants to take his or her own little piece and no one is treating everything together the way one would think a person should be treated as a whole person not just parts lol. But I will keep nagging them until I get some help or I will start looking for another doctor

  • Good luck today, will be thinking of you. Hopefully you'll get the right person to take overall medical responsibility and then you can focus on taking care of you xxxx

  • You've been given some very good advice here. You shouldn't ignore the swelling of your legs and feet and other symptoms. If necessary, go back to A&E today.

  • I will. Tried to go to GP yesterday but he had left early. I will get into his office today and go from there. Just really disappointed with the ONC not calling me back. But I will keep going back to ER if needed because it isn't really something you can just ignore. Thanks for much for all the advice and a chance to vent without being judged.

  • I am so sorry to hear this. As I read it it sounded just like a page out of my experience after my surgery. The more medicine they gave me the sicker I was getting with more complications. I begged the dr on call to please stop with all of the meds for 24 hours and lets see if my body can regain it's normalcy. I was lucky in that it did stop the merry-go-round on craziness. hope you get to feeling more like your normal than before you got sick. Take care.

  • If I could get the blood pressure and pulse rate back to normal I would feel a lot better about the rest of the symptoms. Did you have a problem with that as well?

  • Yes, I guess I wasn't clear, sorry about that. the more blood pressure meds they gave me the higher the pressure would go and the lower my pulse... they actually called for a crash cart on me twice during my stay. Once I got out of the hospital everything started getting back to normal. I concentrated on drinking lots of water to flush all of those meds out of my system as fast as I could.

  • Bless your heart. I will try adding more water. Maybe that means it will wear off soon. Thanks so much for your well wishes and glad your doing better.

  • Jess, I understand about US treatment for various reasons....I would suggest going back to A/ E and refuse to move until you have seen a Dr who is prepared to take some responsibility....assuming you don"t feel better by now, which I imagine you don't. The A/E doctor can if they need to, contact the others. I know it depends on the hospital but some have excellent social workers. If they exist in your state/hospital they should help you. Don't give up.

    Get your family to write down the plan along with dates and if you don't hear from the right person at the right time, either you...or if you are not well enough your family....harrass them. Don't take risks and good luck...keep in touch...Chris xxx

  • Finally got a order from the ONC to come to his office tomorrow and get a STAT CT scan and then I'm going to see him and go over all the symptoms and stuff and see what he says is going on and what to do next. Thank you all so much for all the advice and well wishes. I felt better today than yesterday and blood pressure isn't quite as high. Pulse is a little more towards normal for not doing much. If I could just get the swelling to stay gone and my stomach to feel better I would be doing great lol. But I am never easy and things never go smooth for me. I will keep nagging them till they get me figured out and feeling better. They will be tired of me cause I won't go away

  • a result hopefully! Things can get better for you! Cxxx

  • Hi Jess, I think perhaps a trip to your own family doctor and a chat about your symptoms will help you. It is very early days post surgery. You could be run down especially if not eating hence mouth ulcers. Avoid any hot spicy foods and try ice cream yogurts for now and if no improvement see your doctors

  • Thank you

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