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Helping hand for Lou (Pagma) Hydes

  • 15 January - update - heart issues with treatment

      15 January 2022
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    My cardiologist just phoned. He and an ECHO specialist have reviewed my scans and case and chatted to my oncologist. My heart function is more sluggish (his words) between the last two scans. Which is not so good. But they calculated that the blood flow my hearts putting out is still similar. Which is good.

    So there is still come uncertainty, but they have decided to cautiously carry on with my herceptin treatment. He said It’s tricky because there is risk either way. Stop the herceptin and cancer grows back/spreads or continue the herceptin and it could make my heart function worse.

    If it’s herceptin caused it can sometimes be reversible, sometimes not. So they will keep alert and do regular ECHO scans. If there is further impairment we will have to stop it.

    The next ECHO scan will be important to determine going forward. I’m seeing the oncologist Monday and will likely have herceptin that day. I will have regular contact with a heart failure nurse from early next week. She will work with me to inch my heart medication doses to optimal without side effects.

    I told the cardiologist that I’m still hoping that these issues were caused my the doxorubicin or paclitaxel. He was kind and patient with me saying it’s more likely the herceptin.

    I’m happy but nervous. I’m gonna do my best to keep my mind aligned with Buddha Tara and keep positive. Life has never been more precious and rare. It is not a guaranteed asset. We must stop taking it for granted. Every moment is precious. And it could be gone in a flash. Say what you want to say. Do what you want to do. Make it meaningful. And don’t waste a moment. I love you. 💚🙏💚🙏💚🙏💚

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  • 2022 - update from our dear friend Pagma

      10 January 2022
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    Hello everyone,

    Well so far I’ve completed 6 months of chemotherapy and it’s 3 weeks now since my bilateral mastectomy and lymph removal. I’m healing slowly but surely. My drains came out this week and I’ve had district nurses visiting most days to check my wounds and drains. Tomorrow I’m seeing the surgeon for a check up and hopefully surgical dressing removal. And I think I find out the pathology report from the surgery tomorrow.

    While I was in hospital the surgeon visited daily and said it went very well and the tissue was very soft which is a good sign. The lymph’s were all very tiny. That’s also a good sign. I’ll also be seeing a cardiologist because unfortunately the chemotherapy has damaged my heart's ability to pump blood out. The official term is heart failure. My heart is only pumping at 33% now.

    I started a couple of heart medications about a month ago. Hopefully these are helping because to continue with the herceptin treatment for the type of cancer I have, I need the go-ahead from the cardiologist. The chemo can cause heart failure and so can the herceptin. So at this stage they don’t know which has caused it. And I need to be on herceptin for the rest of this year.

    I will see the oncologist on the 17th to find out where we go from here. I have some damage to the veins in my left arm so I’ll ask them to check what’s going on as it’s very painful and restricting.

    Also this week I will see the radiation oncologist and have CT scans and tattoos put in place for the radiation treatment. The treatment will be daily for 3 weeks. Since the surgery, my body has been a bit run down and I have a significant tooth ache which I’m hoping settles. Could be from the surgery or chemo. They do warn you that your teeth can get knocked a bit during surgery.

    I’m still staying in Wellington with the Bentons whom have been so kind and generous to have me stay so long. I’m eternally grateful for their help. It’s not easy to be so suddenly displaced away from your home and for so long. And it’s not easy to have an extra person turn up in your household and stay for so long either. Just as well we are so close.

    On that note, last night I found out I need to look at moving out of my room in Blenheim as they are looking at selling the house. So I’m looking for storage for my belongings and asking friends and family to help pack it up and move me. I’m not well enough to travel and do it so I’ve reached out to family and friends asking for help. And I’ll be having a lot of video chats to liaise with them. I’m so grateful to have such kind, understanding and helpful loved ones.

    I feel very relieved to be 2/3 of the way through the treatment, but I still have quite a bit to go through yet.

    Spiritually this has rocketed me deeply into my practice. I see the world so differently now. My inner and outer eyes are forever changed. For this I’m grateful.

    Thank you for your love, help and support. I could never have done this without you. The financial help has been a great help for my situation. For things such as medicines, therapy, travel costs, food, fuel, clothing, and all the various things I’ve needed for cancer treatment. Just being able to buy active Manuka honey to treat the ongoing ulceration in my mouth and throat that chemotherapy brings has been a tremendous help.

    So thank you with my whole heart for your help 🙏🙏🙏🙏💚💚💚💚

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    • 13/01/2022 by Ann

      Best wishes from your fellow thyroidees at TANZI.

      I’d love to get an address to send Nanuka honey to please. .

  • Update from Lou (Pagma)

      24 August 2021
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    Trying to pull myself together today... My mind has trough-ed alongside my body. Delusions are biting my ankles and self-grasping has got me in a vice like grip. Cuppa teas gone cold.

    So far randomly 3 special and kind humans have checked on me this morning via message or phone. The Buddhas must be whispering into their ears that I'm a little rough. I might try to walk a little way down the street today. Just to get a sense of movement. Some fresh air and maybe some raindrops on my face to match the raindrops in my heart.

    Buddhas telling me "you are only one single person, others are countless. And the happiness and suffering of one single person is insignificant compared to the happiness and suffering of countless living beings. So focus on them and let your heart be free.

    Zoom out your focus from yourself and zoom on to others. When you zoom out from yourself, yourself will become less important and your problems and suffering will become smaller and more bearable. And you will have more room and space to see everyone around you who is also struggling.

    Their happiness and freedom becomes more obvious and important. It's perspective that's needed. I am only one. Others are countless. My few problems are insignificant. Others happiness and freedom is significantly more important. I will focus on wishing others happiness and freedom today.

    I can do that anywhere. Even from my bed. It's a mind. And this point of view is more in accordance with reality than a self-centered view. My teacher Gen Rabten says It's an others centered view. So today I will try to be others centered.

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    • 24/08/2021 by TONY

      Thank you for your lead on being other centred. I hope the raindrops in your heart turn into rainbows. Love and prayers from Chch sangha. Xxx💖

  • 3rd round of chemo

      18 August 2021
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    Good morn, I had cycle 3 of chemo on Monday. I'm feeling OK, just a bit tired and so far am on top of the nausea. (Touch wood)

    I'm focusing on meditation retreat over the next couple of weeks which is very nice. I was gifted a very beautiful online guided retreat with a teacher I've wanted to be guided by for many years.

    So I'm a very very lucky nun. Each session I'm sending you all very special blessings and super sonic good vibes. 💃❤️🙏

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  • 2nd round of chemo ...

      11 August 2021
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    Update: well this round has been easier and harder. We got the nausea under control quicker. But it was initially much worse. And the effects of chemotherapy are accumulative.

    I’m tired. I’m sore. I’m weak. But mentally I’m doing ok. Don’t get me wrong I have bad days, but luckily my Buddhist practice is deepening and protecting me in response to this journey.

    Having the international Summer Festival to attend has been so lovely. And friends and family have been utterly wonderful. Holding me, reassuring me, encouraging me. Checking on me. Thank you so so much for your help. It really does mean the world to me.

    I just spent a few days at home in Blenheim. It was nice and quiet. I slept heaps. Cuddled Misty cat. Pottered around and played with plants. It was lovely to see a few of my families faces even if we were socially distancing. Hope to see more of you next visit.

    As I fly out of Blenheim, I’m looking out the window at the beautiful NZ environment. Taking check to appreciate the beauty around and within. Slowing down inside and spending time and energy improving my mental environment has become more important than ever before. A dear friend Demo used to often use words to express the art in her mind. So, inspired by her memory, here are a few words that express my inner place: Gentle, still, afraid, serious, silly, rested, sensitive, appreciative, blessed. What are your words today?

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  • Next round of chemo starting on Monday

      25 July 2021
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    Good morning/evening/afternoon, just a little update.

    I’m trying not to get nervous about having chemo again tomorrow. Fingers crossed my bloods are all recovered enough to go ahead.

    My hair’s shedding quite a lot now and I’m peaking and troughing through various emotions towards cancer and my body. I’m afraid of the week to come.

    I’ll be speaking to the oncologist tomorrow morning about anti-nausea and steroid medicine increase and for longer.

    Annie and I had the first COVID vaccine on Friday and will have our second shots in 3 weeks.

    Anyways, thank you for your continued love and support, and I’ll try to be a little better at updating. 🙏♥️😊

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    • 25/07/2021 by Ann

      Good Luck Lou. Thinking of you. Ann from TANZI

  • Keeping positive

      9 July 2021
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    Just a little update. As we all know, Lou (Pagma) is a very positive and upbeat person. And we all know that chemotherapy is a big, big deal. She is staying positive but is extremely fatigued and nauseous. These are normal reactions to chemotherapy.

    Fortunately she has a place where she can rest with her furry friends and just let her body heal while she keeps a happy, peaceful mind.

    Please keep her in your prayers.

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  • Chemotherapy has started - update from Lou (Pagma)

      7 July 2021
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    Heya,

    Just a little update. I’m doing really well. First chemo session was good. There was a bit of delay so lots of waiting. But we got there in the end.

    I’ve been quite nauseous but the meds they have given me are all working and I’m taking it very easy. Because my normal is fatigued and migrainey with nausea fairly often, the chemo is just a small increase to this all. In fact my usual physical pain has reduced heaps so that’s been a silver lining. I’ve been doing lots of meditation and that’s been very helpful.

    Anyways it’s early days and they say I will likely hit the wall from tomorrow onwards when I stop taking the strong steroids and anti-nausea drugs.

    Anyways, thank you all for all the precious encouragement and love you have sent me and I’m sending much love back as always.

    Pagma xxx

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  • Update from Lou (Pagma)

      26 June 2021
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    Hello all,

    So just a very quick note to let you know the plan for my treatment for grade3, HER+, stage 3 breast cancer. I will begin 6 months of chemotherapy in the next week. Then a right mastectomy (surgery) and removal of lymph nodes in armpit and below clavicle. Then after about 6 weeks of recovery I will have 3 weeks of radiation treatment to blitz the stuff that is left over. All treatment will take place in Wellington (conventionally 😉).

    I deeply appreciate all your kind prayers, love and support. Especially thank you for your kind donations into the givealittle page which will make a huge difference to treatment options and supporting medicines and of course ability to travel to and from Wellington if and when needed. A huge thank you to Tamara for thinking of this and seeing it up. (https://givealittle.co.nz/cause/helping-hand-for-lou-pagma-hydes)

    A huge thank you to Anne and Glenn (my cousins and dear friends) for taking me in and caring for me. It’s going to be a bit of a rough ride and I deeply appreciate your willingness to help and your friendship. It means the world to me. X

    Sangha is such a blessing and you are very precious to me. Much love and thank you again. I will do my best to update if I’m well enough. And I have given Tamara and Anne permission to update others if needed. Apologies in advance if there’s a delay in my replying to messages.

    All my love,

    Pagma

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  • Some positive news and update ...

      18 June 2021

    Hello everyone. Thank you for your kindness, prayers and love. Also a big thank you for your generosity.

    Pagma's appointment went well. They will start her chemotherapy treatment within the next few weeks. They said they are approaching her treatment with a curative intent which is a really positive thing.

    She still needs the MRI scan but they think the spots in her spine and hip look like tendinitis and arthritis. So positive again.

    She will be having a heart scan this week as well.

    Lou (Pagma) will be having 6 months of various chemotherapy treatments and then a surgery mastectomy and radiotherapy.

    Chemo will be at Wellington hospital 3 weekly for the first 3 months. Then weekly for 3 months with different drugs. Then 1 further year of Herceptin after the surgery.

    They seem very positive and confident. Please keep Pagma in your prayers and share this givealittle campaign with anyone that might want to help out.

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    • 19/06/2021 by Josette

      Thank you for the update. The healing process for Pagma seems promising which I am glad to hear. I have witnessed people in the past who had to endure chemotherapy, I hope it will not make Pagma too sick and not be aggrevated by her re--occuring migraines.

      Thinking of you Pagma, praying for you. Lots of love

  • Tests results ...

      8 June 2021

    Pagma has been diagnosed with grade 3 (most aggressive), HER2 +, stage 3 breast cancer. There is a possibility it’s spread to her bones in her lower spine and hip.

    Her doctors are organising an MRI in the next week to check what they saw on the bone scan. If it is in the bones it will be stage 4.

    Current treatment plan:

    They are going to start with 6 months of chemotherapy and she will be phoned in the next week with an oncology appointment to get that rolling ASAP. A couple of months into that they will re-scan and have a better idea if the chemo is sorting things. After the chemo they will do surgery.

    Thank you for your kindness, love and prayers. Pagma is grateful for everything.

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  • Hold Pagma in your heart ...

      8 June 2021

    Pagma will see the surgeon/breast specialist this morning to find out the results of all her tests. Please keep her in your prayers.

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  • Update from today

      3 June 2021

    Scans are all done. Thank you for your prayers, love and support. They have scanned every inch of this body. So on Tuesday we will know what's where and what's to be done. ❤️❤️❤️🙏🙏🙏📿📿📿 all my love and gratitude Pagma xxx

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  • Tests today

      3 June 2021

    Lou (Pagma) is having a chest CT scan and a nuclear full body scan today. Next Tuesday she will see the surgeon/breast specialist.

    Please keep her in your prayers.

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    • 07/07/2021 by TONY

      Hey Pagma

      Sounds like so far so good with the treatment. I hope the wall is gentle with you. Ongoing love and prayers from Christchurch. ❤️🙏