Forum Discussion
Paclitaxel - Taxol the Tyrant (Triple Tʻs), have just completed Wk4...tears and sadness
In advance, I apologise for the lengthy post,
Here I am reaching out to the BCNA group...flooded with tears, an emotional overload. I have a feeling of overwhelming sadness and aloneness, a hollowness where my sense of peace would usually reside...that peace that I was harnessing, that I was protecting from the army of chemicals.
I feel that I am sharing life, my life, a life I am in a co-ownership, relationship with cancer and the translucent liquids I have consented to. Liquids that appear harmless to the naked eye, yet their energy shoots through with speed and strength that my already beaten and fragile body cannot tolerate. Compliments of AC.
How much can it bear? I went to the supermarket today and the tear waterfall that had sat behind a solid dam burst open. They were the unspoken words of the pain in my heart, in my inner being, in my loss, my grief. Who was this person who lost her ability to regulate her emotions?
Iʻm fiercely independent and donʻt ask for help easily (a topic for another occasion). Not to burden or upset my adult children, friends, acquaintances. I wear a mask securely fitted - because mum/friend is a survivor, strong, resilient - bounces back with every knock in life. I am learning on this voyage, that unless you have understood the power of the red devil and the tyrant on the bodyʻs life, you know very little. I live on my own and there is much you can conceal...though no place to hide from self, your human physical and emotional laundry awaits you.
I silently ask myself over and over ʻif this is worth itʻ and so here enters guilt, shame and selfishness. I have been doing quite well up until now (ex AC). A dialogue that takes place between the ʻis this worth it? and what would happen if I took the exit from chemo?ʻ and switching to ʻyou have a good chance of beating this girl, donʻt be ridiculous and pull yourself up from your boot laces and soldier onʻ.
I honestly felt that I had responded so much better to Paclitaxel for Wks 1-3 that this flow would continue and I could actually breathe without intense fear of what is lurking around the corner. Wk side effects, I have broken out in a rash which the ONC nurses confirmed was Taxol coming out so I will be reassessed at the next session; there are small nose bleeds (although I am using pawpaw as the ONC suggested), discolouration of my skin and brown spots on my big toe nails (moisturising madly); the most upsetting...the heart palpitations - I had an ECG this week but in the last 24 hrs, my heart is racing in a marathon (Iʻve measured my heart rate on my phone and it recorded it at 125 bpm). A simple task that I would normally whip through exhausted me and took me over 30mins.
I can only apologise to my body for the decisions I have made and the hurt it is suffering. What else can one do?
Here I am reaching out to the BCNA group...flooded with tears, an emotional overload. I have a feeling of overwhelming sadness and aloneness, a hollowness where my sense of peace would usually reside...that peace that I was harnessing, that I was protecting from the army of chemicals.
I feel that I am sharing life, my life, a life I am in a co-ownership, relationship with cancer and the translucent liquids I have consented to. Liquids that appear harmless to the naked eye, yet their energy shoots through with speed and strength that my already beaten and fragile body cannot tolerate. Compliments of AC.
How much can it bear? I went to the supermarket today and the tear waterfall that had sat behind a solid dam burst open. They were the unspoken words of the pain in my heart, in my inner being, in my loss, my grief. Who was this person who lost her ability to regulate her emotions?
Iʻm fiercely independent and donʻt ask for help easily (a topic for another occasion). Not to burden or upset my adult children, friends, acquaintances. I wear a mask securely fitted - because mum/friend is a survivor, strong, resilient - bounces back with every knock in life. I am learning on this voyage, that unless you have understood the power of the red devil and the tyrant on the bodyʻs life, you know very little. I live on my own and there is much you can conceal...though no place to hide from self, your human physical and emotional laundry awaits you.
I silently ask myself over and over ʻif this is worth itʻ and so here enters guilt, shame and selfishness. I have been doing quite well up until now (ex AC). A dialogue that takes place between the ʻis this worth it? and what would happen if I took the exit from chemo?ʻ and switching to ʻyou have a good chance of beating this girl, donʻt be ridiculous and pull yourself up from your boot laces and soldier onʻ.
I honestly felt that I had responded so much better to Paclitaxel for Wks 1-3 that this flow would continue and I could actually breathe without intense fear of what is lurking around the corner. Wk side effects, I have broken out in a rash which the ONC nurses confirmed was Taxol coming out so I will be reassessed at the next session; there are small nose bleeds (although I am using pawpaw as the ONC suggested), discolouration of my skin and brown spots on my big toe nails (moisturising madly); the most upsetting...the heart palpitations - I had an ECG this week but in the last 24 hrs, my heart is racing in a marathon (Iʻve measured my heart rate on my phone and it recorded it at 125 bpm). A simple task that I would normally whip through exhausted me and took me over 30mins.
I can only apologise to my body for the decisions I have made and the hurt it is suffering. What else can one do?
16 Replies
- Sister said:You don't have to be strong but it can be so hard to let anyone see. Chemo is horrible but cancer is worse. And you are low - your body and mind has gone through so much already - it's a tough slog to keep going. Make sure your oncologist knows what's going on with the side effects. And remember just how far you've come. AC is nasty but you get some time in between to get back up to speed. Taxol hits you when you're already down and keeps hitting in unrelenting waves. But you're really so close to the end.I am wondering if the hardest is not for anyone else to see but for me to see myself in this changing state. The heart business has certainly rattled my cage; it further incapacitates you. The cancer first, the chemo second, the infected port area followed, the side effects in between...I can hear my brain calling out ʻjust give us a breakʻ.
I love swimming and for this year, have had to give it up because of the port, the only things left that I have been able to do is walk, qi gong and work when I can. The heart thing is making these challenging for me.
Iʻm counting the weeks Sister and then surgery and radio. More chemo?
Thank you for your words of support x
Dear Michelle,MicheleR said:Hi @Tasia,
Sorry to hear you are having a hard time. Im still on Taxol after doing AC. They are both crap but different. Taxol seems like it is a bit more unrelenting to me as it usually gets delivered in shorter durations and there are more of them. I feel a bit depressed in the 2 or 3 days after delivery as energy levels plummet, the other symptoms fire up. It feels like all the good things in me are dying and nothing will ever be good again. But as the next one rolls around suddenly i feel a bit better though it is only a couple of days to "enjoy". Is it like that for you?
I think you are amazing doing it on your own and living alone but do you need to? Your adult children you could confide that some days are rough and encourage them to give you a call. Maybe they could drop by with some shopping and a cuppa. Ive had a few very low moments and rang my 70ish parents to tell them i feel im going mentally a bit wierd and would love a cuppa. Even when still feeling unwell that can lift you. Its not about not coping but allowing others to be part of the experience and hear about their lives , offering hope that other experiences are out there.
I cross off each chemo on my calendar and silently high five myself for surviving snother week.
Sending you a hug and hoping it gets a bit easier.
Michele
Yes it is very much like that. Chemo during weeks 1-3 was administered with pauses in between as I have allergies from a hair dye 2019 and am now fall in the anaphylactic category. The reason I cannot use the nail polish or strengthener as it has Formaldehyde.
I have managed life and as a working gypsy on my own for some time. The adult children are involved in my experience but each have their own young family and responsibilities. I am also very determined and independent. My greatest flaw is in asking for help. I guess, I reflect on myself and how I have responded in similar situation as the daughter, friend when illness of this or similar nature has coming knocking on ones door; I have never needed to be asked for help, I am present to offer it (old school raising perhaps ?). That is the difference for me, I might be wrong in my mentality.
Maybe something for me to work on.
It is wonderful to have your parents, I know that if mine were still part of this life - a cuppa would have been on the table.
Thank you to you and I am sending you my warmest wishes and hug xx- Dory65 said:
Every response is helpful - thank you xI'm not able to offer any helpful advice @Tasia, but I just want to let you know I'm thinking of you and wishing you well. I hope you feel better soon and are able to regain your equilibrium. Any chance of a Breast Care Nurse/McGrath nurse helping you? Others have said they had to initiate contact, but then they were very helpful. I hope that's the case for you. You have to have someone to lean on. All the best Lxxx
I think the afternoon of Day 4 and all of Day 5 are my low and less kinder days. I will get my crap together. There is no support over the weekend. Iʻm not sure how the McGrath set up works.
I hope you are travelling well xx - Thank you to each and every one of you for helping me through the day. I did have fat wet tears, lots of them - like a faulty tap pouring tears.
I understand that terrible things are happening inside my body, be it cancer or chemo and I know that chemo is the good guy in all of this but the damage it unleashes is brutal. A private conversation constantly seems to be taking place between my brain and my body, one I am excluded from. It then makes me question..what/where are my personal ethics towards my body? I am an advocate for the chemo right now yet its destroying other parts of me. If my heart, etc suffers what have I won? Taking more meds to manage symptoms that potential bring on additional symptoms, is something I struggle with."In lieu of a husband - "that’s how you want it to be. So it can kill the bad ones’". I went to bed at midnight with red eyes and wet cheeks and I took those words with me, holding them closely and tightly ever so dearly to my racing heart xx
I have trust in the team of ONCs and I trust ʻmeʻ to heal self however, between the not having the same energy to keep rising after each solid blow and feeling those close to me really donʻt get it - donʻt get that most of the time, I dont know what I want or need. To be present, is a very special gift in these circumstances and I see instead of presence, a check list.
Iʻm just sad, tired even as I have worked (a much lighter load) during the treatments and will aim to continue for as long as I possibly can.
Your individual stories give me hope and courage at my most vulnerable times. I give thanks to you all xx - You don't have to be strong but it can be so hard to let anyone see. Chemo is horrible but cancer is worse. And you are low - your body and mind has gone through so much already - it's a tough slog to keep going. Make sure your oncologist knows what's going on with the side effects. And remember just how far you've come. AC is nasty but you get some time in between to get back up to speed. Taxol hits you when you're already down and keeps hitting in unrelenting waves. But you're really so close to the end.
- Hi @Tasia,
Sorry to hear you are having a hard time. Im still on Taxol after doing AC. They are both crap but different. Taxol seems like it is a bit more unrelenting to me as it usually gets delivered in shorter durations and there are more of them. I feel a bit depressed in the 2 or 3 days after delivery as energy levels plummet, the other symptoms fire up. It feels like all the good things in me are dying and nothing will ever be good again. But as the next one rolls around suddenly i feel a bit better though it is only a couple of days to "enjoy". Is it like that for you?
I think you are amazing doing it on your own and living alone but do you need to? Your adult children you could confide that some days are rough and encourage them to give you a call. Maybe they could drop by with some shopping and a cuppa. Ive had a few very low moments and rang my 70ish parents to tell them i feel im going mentally a bit wierd and would love a cuppa. Even when still feeling unwell that can lift you. Its not about not coping but allowing others to be part of the experience and hear about their lives , offering hope that other experiences are out there.
I cross off each chemo on my calendar and silently high five myself for surviving snother week.
Sending you a hug and hoping it gets a bit easier.
Michele - I'm not able to offer any helpful advice @Tasia, but I just want to let you know I'm thinking of you and wishing you well. I hope you feel better soon and are able to regain your equilibrium. Any chance of a Breast Care Nurse/McGrath nurse helping you? Others have said they had to initiate contact, but then they were very helpful. I hope that's the case for you. You have to have someone to lean on. All the best Lxxx
- @Tasia
So sorry you're feeling so crap. It is very hard when you hadn't ever thought you could react like that. It really took me by surprise. There is no room for guilt in this trip so don't beat yourself up. Sometimes you've just got to cry until you run out of tears. Then you can dust yourself off and keep going. In your heart you know your doing all you can to kick this thing out on it's butt.
I had the rash as well and had to stay on prednisone for the whole of taxol. Paint your nails with a dark colour gel polish. One of the chemo nurses recommended this to me and I never had any nail problems.
Hang in there sweets.
xoxoxo - I'm so sorry that you're suffering and can relate perfectly, especially the rapid heart and general fatigue.
After my Tuesday session, my worst days were Thursday and Friday and I would slowly improve until the next treatment.
On those Thursdays and Fridays, it felt like the end of the world.
But last Tuesday was my final Taxol and soon it will be yours. Hang in there! - I agree with all the above wise responses. Chemo is shit...there's no getting around that, but I read a quote which I've posted before, but I think it bears repeating. This was what a pediatric oncologist wrote. "Chemotherapy is like using a flamethrower to get rid of the weeds in your garden. It does an excellent job on the weeds....unfortunately many other pretty plants also get destroyed in the process". So true.
