I had a very scary and upsetting week. I had my usual oncology and infusion appointment mid week. My oncologist was curt and insensitive as there was a scheduling mix up (caused by her staff) that made me 'late' according to her records. She berated me saying that because of my tardiness caused a major disruption in her schedule , never apologized for her rudeness. I don't have to tell you how upsetting and hurtful that was to experience especially as a cancer patient - our emotions already run high as you never know what's coming next . One would expect a certain level of compassion from a cancer provider. But above and beyond all of that- acknowledge and apologize when you are wrong.
At that appointment I mentioned that I had been having new issues with my left leg- weakness and trembling. She and the fellow pretty much dismissed the symptoms I described and told me to check in with my PCP. I scheduled an appointment with my PCP for the next day, but never made it.
That evening it all went downhill. It could have ended in my death. After leaving treatment, I stopped at the grocery on the way home. Got home from the grocery, stepped inside my door, put my bags and phone down and then I went down. I collapsed and fell out. Everything went black. Couldn't get up, reach doorknob or my phone. The ancestors/ God/ divine spit or whomever/ whatever were watching over me...1) it didn't happen while I was driving, I had just parked. 2) I was on the phone with my mom when it happened so she called for help as she realized something was wrong. 3) I fell at the bottom of the steps, not from the top when I blacked out and fell. 4) I didn't break my neck. I fell right inside the doorway onto my neck. I was wedged between the door and the steps with my head and ear crooked up against the door, my feet wedged against the foot of the steps. My ear on the door let me hear the people outside and let them hear me as I screamed for help. 5) One of my neighbors, a former parent at my last school, had exchanged info with my mom so my mom was able to get in touch and she came to my door immediately and called 911.
I felt virtually paralyzed. It was a very frightening experience.
Upon being transported to the hospital, they thought I had had a stroke. My heart sank.and the tears started. At the hospital I had an MRI that showed new brain Mets with swelling around the Mets which caused the episode. They are not sure if the episode was a stroke (due to brain mets/swelling, not blood clots) or a seizure due to the brain mets/swelling. I am on anti seizure meds and steroids for swelling. One of the meds that I had been on for some months prescribed by my oncologist was changed here in the hospital. When I asked why, they explained that it can contribute to seizures! I never knew that. I was taking a relati ely lowe dose and only once a day- not multiple times a day, as it can be.
They want me to go to a rehab facility due to the weakness on my left side, because of all of the steps in my house and because I live alone. I am scared of a rehab facility due to covid, though I agree that is where I most need to be for my recovery. So, looks like a lot will be changing after this episode. I will probably have to move to a place with no steps. I'm guessing they'll be concerned about my driving now also. And I'll need eyes on me- by home care helper, family or friend, or some type of medical monitoring device.
Now I do not have the help and support of a trusted oncologist to advise me and manage my care right now. If they had taken my most recent complaint seriously- the one that I raised that very day- they could have scanned me and possibly averted what was to happen later. My former oncologist who was fantastic in every way moved, thus I ended up with the new one who lacks bedside manner and accused me of messing up her daily schedule by being 'late' according to her erroneous records. Not a very caring caregiver.
I'm currently in the hospital waiting for the team to make a plan that is safest and that I feel comfortable with.
Seems every day brings new challenges to overcome for us.
What to do now? Help! Meditating on it. Thanks for 'listening' I am feeling like I've had the wind knocked out of me- along with what sense of security I had up until this point.
Hoping and wishing for the best for us all.
Nama
(please.excuse typos)
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NamasteLove
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Thanks. I am looking into/looking for a new oncologist. Very frustrating because the cancer center I've been going to for my care thesr past 3yrs has a great reputation, but that has been stained by this encounter (only my third) with the new oncologist.
I totally sympathise. My wife has just returned from two weeks in hospital after she had a seizure one evening. I was almost relieved when her MRI confirmed a small stroke rather than new brain mets. She's now back home but needs a lot of care. I hope you can get a suitable support package in place. I know what a knock to your confidence this must have been as my wife is so anxious now. Try not to dwell on the negatives - you're still here and that's what matters. Best wishes.
Your experience was certainly very scary indeed. I'm impressed that you have been able to focus on all five positive factors that helped you get through it! The changes that may be coming in your lifestyle may be positive as well, and certainly will keep you safer.
It is worrisome that you were on a medication that contributed to seizures at the same time as an anti-seizure medication. I hope that a home care helper might be someone who will help you check on possible drug interactions. I think brain mets must demand extra coping skills.
I would certainly ask for another oncologist. My guess is that you won't be the first patient to do this, after experiencing rudeness from this particular person. Given that you have brain mets, it seems inexcusable to me that your leg weakness was dismissed so casually! Incompetence and arrogance sometimes go hand-in-hand!
Warm wishes for the future! I hope you look back at this time of changes with gratitude for the improvements in your circumstances.
Thanks. I really appreciate your perspective and encouragement. This is all so new, trying not to be frustrated and afraid, but clear headed to make decisions going forward.
I wasn't on the two meds together, but the med I was on before the episode last week could have been a contributing factor causing the seizure. When i mentioned the leg issue, it would seem that it would have been considered as a symptom of something going on instead of being dismissed by my oncology team.
Oh Nama. On the positive side, you do have God watching over you. I hope that you find a good oncologist who is caring and will look after you properly and give you the best possible treatment. Hugs and prayers for you🙏❤️
Wow what a bad week, so sorry to hear all that has gone on with you; sending many hugs. Please keep in touch here, you will have a good support system. You do need a doctor that you are comfortable with. Keep us posted.
Oh Nama my heart goes out to u. R u in any support groups in your area where maybe one of the members can recommend a new Oncologist. Or ask your primary doc to suggest someone. It so saddens me that u told her about the weakness and shakiness in your leg and she dismissed u.
I am and will be asking around for new leads for an oncologist. In the past, I've unfortunately found that many of us are in the same situation dealing with oncologists who are just 'good enough' but not caring, compassionate, and sensitive to our needs. Makes menu wonder why they would choose this profession!
Thanks for sharing what you have been through. What a scary experience for you. Your oncologist was out of line for telling you off when it was a scheduling fault that had nothing to do with you (how often are we left waiting for our oncologists when they are running late?) You should have been taken seriously when you mentioned your symptoms. That shows a complete lack of care. Is there any way of changing oncologists? We deserve to be treated with respect, compassion and care, not to be berated. I'm really upset to hear about how you were treated.
I hope you can soon have a plan in place to help you manage. Could you install a stairlift so that you can stay where you are and not move? Perhaps friends and neighbours can help with the shopping and check in on you to see how you are recovering.
Yes, i am happy to have neighbor support and friends relatively near by. I feel that everything has been so upended and it's frustrating that changes are needed. Safety first, but giving up or adjusting my way of life, independence, and comfort have me feeling a bit down.
You're welcome. I can understand that making adjustments is going to be hard. But it's good that you have supportive family and friends nearby who can step in to help you.
Wow! Just seeing this now. What a frightening experience. You ask what to do now. Well by now you will have some answers. Hope this helps. Just don't worry right now about everything. Just try to concentrate on what is happening each day. That will be enough. You will have plenty of time in rehab to sort other things out.
You know, even if you had been late, that oncologist should not have reamed you out about it. We are after all not well and have so many things to think about and look after. So rude of her to berate you like that.
Oh my goodness, that must have been so frightening for you. How rude of the onc to have a go at you like that, especially as the scheduling error was theirs. Mine is the same, very stand offish and has no time for bedside manner. Thank goodness you were talking to your mum when you collapsed so she could rally the neighbour. I hope you get the care that you need sorted asap so you can get on with living your life. Such a horrid disease we have, always something waiting to catch us off guard. Sending good wishes and you take care . X
Greetings: Sister, and yesssssss warrior Everything you went through that day was a challenge , but remember what doesn't break you will only make you stronger . I pray for your healing, and I pray GOD will restore you. Keep the faith fighting Sister/warrior.
What a scary experience for you. I hope the Oncologist will reflect on her quick dismissal so it never happens again with anyone else.
You certainly have a bit of time now to think of your future plan at home whilst you are in hospital having rehab. Use the time to get yourself string again whilst also being looked after in the rehab unit.
Hopefully where you are going won’t have any Covid cases as the hospitals try to segregate patients into green and red zones.
You sound so well put together and clear thinking. I am hopeful that if you have to move to a level playing field, that you will find one that keeps you independent where you can continue with your good quality of life.
Dear, dear one. I'm so sorry for this episode, but glad they have found the cause. Nothing is forever, so maybe you'll be able to get back to your home sooner rather than later. I've switched oncologists a couple of times, so maybe it's time. I don't know if you live in an area with many options, but hopefully you do. With telemed nowadays, you might be able to find someone not even in your locale if that is prohibitive to finding someone more compassionate. My heart is with you. <3 Sending hugs and blessings your way.
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Everything you went through that day was a challenge 
, but remember what doesn't break you will only make you stronger 
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