I am not in a good place. I had a sever reaction in my hand at the intake site to chemo #3 The center has never seen this before. They had a few people come and look - and they all said “huh - never seen that before”.
For the last week and a half I've been back and forth to the Abby center (over an hour each way) because JPOC has no beds and are short staffed. Last Friday my temperature was high and I literally begged my husband to not take me to emergency, after last time. I am terrified now of having to go near a hospital. By Saturday I was depressed and in great pain with my hand. I have this horrible nagging cough which started around Day 4 (did the same after chemo 2 as well) but won't go away and my chest hurts. Sunday all I could do is crawl from the bed to the couch and I couldn't stop crying. Everything hurt. And I'm terrified of the hospitals now - I don't think I can bear sitting in emergency for another 64 hours. Even sitting in the clinic is hard. My sleep comes in 2-3 hour segments - and sleep is one of my mental health needs.
Monday, my body was aching so much, so when they called to check up on me, they insisted i come in. I don't know how that works - my husband is at work, I have vertigo for this past week - good thing my daughter was working from home and able to drop everything to take me. Yesterday they said I could take Advil (Tylenol was doing squat). They gave me a steroid for my hand, it has relieved the swelling and the Advil helps with the pain. But here it is Tuesday, I'm still having crying jags and I'm so stressed. I'm literally afraid to take my temperature in case it's high - I don't want to tell my husband so if I don't know it won't count right?
And I'm sick of people not understanding - like the young man yesterday who asked why the hospital shaved my head, was that just so they can tell who has cancer? People don't understand. I was upbeat at the beginning, but literally everything that can go wrong does - huge bruising on my hands and arms, appointments on the wrong day / time, the coordination of sessions not happening, wrong chemical being mixed so timing is longer because they have to go re-mix.
Sorry, I'm not upbeat these days. I'm literally hanging on and there is nothing anyone can do - just one day at a time, I know, but everything all the kind people in my life try and help with just seems like platitudes - and I get that they don't know what to do any more than I do. Yesterday I googled what would have happened if I had said no to treatment. I wish I could sleep. Anyways, nothing anyone can add, I am not in a good place but hopefully in about 3 weeks things will have turned around. Thanks for letting me rant.
I am so sorry you're having such an awful time with things, my heart hurts for you.
I think you need to have this discussion with your oncologist so they can change things up for you. Even show them what you've written here so they can see first hand how badly this is going for you. Please contact their office and get a time for the discussion, ensure your husband can be at the meeting as well to support you.
I had a couple of bad reactions to Carboplatin and Cyclophosphamide during my chemo, when I explained to my oncologist we dropped them both and I had only Docetaxal for my last 3 treatments - which I tolerated quite well.
As for the person who asked about your bald head, let that one go. It's not worth stressing over. The first time I wore a headcover to the office I had a couple of women walk past me and whip their heads in the other direction so fast I was surprised neither broke their necks. I was so dejected. After I walked a little farther I started to laugh at their reaction, this was their issue, not mine. I then “rocked” my headcovers and long dangly earrings and didn't give a hoot about who might be offended. I'm fighting for my life here and anyone else's opinion and comments are meaningless.
Pick yourself up, dust yourself off and keep on fighting, it's hard and some days suck, but you're still on the green side of the grass and that's what really matters.
I too am so sorry to hear you are having such a rough go of it of late. Is your oncologist one of the ones saying “huh” ? If not, I agree they need to be made aware of what you are going through. I understand your hesitancy to sit in emergency, especially if that also involves a long commute. I would just hate to see you avoid medical care when you may really need it.
I am glad that the Advil and the steroid shot have helped some. The cancer center does have a counseling department free of charge to patients and caregivers/family if you think that may help. When I was in treatment in BC Cancer, I was reluctant to use it but ended up finding it very helpful.
As to those that don't understand - yeah I get that too. I guess the good thing is they don't understand because they haven't been through it. I thought I understood what my dad was going through when he had it, but not until I was diagnosed did I realize just how far off I was in understanding.
No need to apologize for your feelings or for “not being upbeat”. This community is for all the feels - good or bad. We all have those bad periods. The key is to try not to park there for too long.
Keep reaching out - we are listening.
oh my goodness, I’m so sorry you’re going through this.
I also had chemo go interstitial during my first cycle. This was before I got my port. It hurts so much and I was terrified I was going to develop a cellulitis.
Please discuss what you’re feeling with your oncologist . Be absolutely honest with how you’re feeling and any physical discomfort you’re experiencing. I found when I shared all this, they could deal with it mostly and make changes to my treatment plan. When I was very depressed earlier this summer, I reached out to the oncology social worker who I could talk to. She has been a great resource and I’ve spoke to her a few times since then.
Lack of sleep is awful. I still struggle with insomnia and sometimes I just have to take a sleeper so I can get through the day. Ive suffered with middle of the night panic attacks.
As far as people staring at me wearing a cap or looking at my very short hair, I’ve had to let that go. I was recently at a get together and I wanted to chat with someone. When she saw me walking up to her, she turned and avoided me. I hadn’t seen her in a year and it hurt. But I realized after that, it’s her issue and not mine. The people who matter to me would never do that.
I hope you can get relief. Cancer and treatment is awful physically and mentally. Everyone here totally gets it.
Thanks - fortunately next week is my last chemo but we do see the original oncologist now on Tuesday afternoon. I'm not sure what happened that we were switched back, but I'm doing a list of questions. I just keep saying - it's 30 one-days-at-a-time and then I'm done. This part. The medication has kicked in for my hand, which has helped tremendously. Reduction of the pain and sleep have helped today - not so much with the fatigue but at least I've stopped crying.
Thank you. The stuff they've given me has helped the pain in the hand, so that's good and I slept last night - turned my phone and electronics off, which is what I needed to do. My finger tips are numb but I'll discuss that with the oncologist on Tuesday, now that I'm back to the original oncologist. It's been suggested that I set up a positive goal as a “carrot” to help me get through so once I get the radiation days I'm going to book some fun things, even just a little drive out of the city.
@Cea I just read your first post, and the rest of the replies. I'm sorry that you are going through a hard time, but when I read this last post from you, it seems that you are digging yourself out of the hole! Good for you! Probably getting some sleep helped immensely. When I went through chemo, my anxiety was triggered, which made it hard to sleep…which made the anxiety worse…which made the sleep worse. I remember it lasting quite a while…I tried different light sleep\anxiety meds…not sure if they helped or not…but might be worth a try. Eventually, the sleep returned and the anxiety lessened. I find relaxing meditation helps.
I agree with whoever above said to share your post with your oncologist or family doctor.
Enjoy your fun ‘carrots’! You can share with us what you did for your fun reward.