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Sandra01's avatar
Sandra01
Member
2 years ago

Emotional roller coaster

Hi All,
Just joined and first post.
This whole cancer thing scares the hell out of me. It happened so fast. Diagnosed in Dec 23 1st surgery on 19th for a wide local excision and lumpectomy to return again for margins on 19 th Jan 24. 3 nodes taken but only cancer in 1. started chemo late Feb have completed 2 rounds heading into round 3 of 8. Then onto radiation followed by hormone treatment. To find out late yesterday arvo I have clots on my infusion arm. I am devastated, I am scared, hoping they call today to get it sorted. I'm trying to be brave and in control Infront of kids and hubby but it is killing me inside. And sleep what that been awake for hours even with melatonin they gave me yesterday. Anyone else had these and can make things less scary for me.
  • Tri's avatar
    Tri
    Member
    2 years ago
    hi @Sandra01 all the best with your call from your team about the clots you’ve been made aware of. 
    I am conscious mine may be a very different scenario than yours but in case it helps, last time I went in for my treatment one of the nurses made a comment that there might be a ‘clot’ around the port. 
    The kind of clot I had wasn’t blocking the chemo treatment going into my veins. It was a bit like a drain blockage, acting like a valve or trap door that would open up to let fluids in, but flapped back and blocked the nurse being able to draw blood back up out of the port (which they usually do to check the flow, I think). 
    To clear it they administered a drug that breaks down the blockage. Took about 20 minutes and it was cleared/good as gold.
    I confess I was nervous when the nurse mentioned that but another very experienced colleague came over to support her and explained the situation to me. So I totally understand you feeling worried. I have had 16 or 17 infusions throughout the past year and no problems at all with the port before. For me I feel it’s been a good thing and saved the stress of finding a vein each time. Good luck with your treatment @Sandra01 thinking of you as you progress along ❤️🌺
  • Sandra01's avatar
    Sandra01
    Member
    2 years ago
    Thanks Cee cee,
    Thoughts are with you and your family. I fully understand that chemo is what needs to be done as I have tried the naturopath way when I was 21 for different reasons. Chemo has been ok. But it's a gift that just keeps giving. Nausea and vomitting I don't have. But headaches, fatigue and can't sleep are constant. I have 2 more Doses of the red devil then onto 4 more of another see how I go with that one. Just hoping they sort these clots out cause it's really scaring me.
  • CeeCee's avatar
    CeeCee
    Member
    2 years ago
    Hi @Sandra01. I have a similar story, although had a single Mastectomy 2 weeks ago and waiting on Chemo plan. How are you handling the Chemo? 
    I have so much support that I am very grateful for but it is still a very lonely journey as it’s you and your body that this is happening to. I also am not sleeping well. As soon as I wake in the night, the mind wanders.
    I am going to look at the Chemo as medicine to make me better. I also had cancer in one of the nodes out of the six that were removed. I have so many questions for my Oncologist who I am waiting to hear from. All this waiting is cruel.
    I’m feeling your pain with the family, when I’m talking to them I try to be so strong as the last thing I want to do is make them sad. It doesn’t always work.
    All the best with everything, we do know that treatment works, if we can stay positive for the majority of the time we are doing well xo
  • Cath62's avatar
    Cath62
    Member
    2 years ago
    Your welcome @Sandra01, just one day at a time, one step at a time. We are all here to support each other. 
  • Cath62's avatar
    Cath62
    Member
    2 years ago
    Hi @Sandra01, big breaths.

     It is so overwhelming at the start and it does all happen quickly. It's good you have your treatment plan and working through it all. Clots can happen and your treatment team will work out what to do. Some people are put on blood thinners for awhile to help that. 

    It's a tough road emotionally and we all understand that. Try not to let those thoughts take over. Breathe, walk a bit if you can and keep busy doing what you can to distract yourself. Have you had any counselling? Many of us get that type of help because it is hard to process and it does happen quickly as we go from surgery to chemo and radium. I had a few sessions with a psychologist who understood breast cancer and I found it helpful.

    I hope that today brings some peace to you and you can advice from your treatment team.