Writing this blog…

…Is not always easy. When I am too tired I just don’t have the energy to do so.  It has however been very helpful at times and I am proud to say that since starting it I have had over 65,000 views. I have always promised to be honest and open and use it as a way to share my experiences of my health journey and seeing the NHS from the other side, and at times share the knowledge and experience that I have gained in the field of mental health over the last 30 years or so.

Through the blog I have made new friends and caught up with old ones. I have been truly overwhelmed by your support and generosity, this has helped me through many a difficult time and I have never felt alone with you by my side. My audience is varied from family and friends to fellow Myeloma buddies from all over the world. Sometimes knowing that my parents, children, brother, sister, husband and close friends read this has made choosing the words I write quite difficult. Although I have always promised to be honest I am very sensitive to their feeling. I never want to worry or offend, to make people feel even more miserable by sharing my lowest points but I think I usually manage to strike some sort of balance, I do hope so anyway. It is also important for me to talk about mental health, if we are ever going to reduce the stigma that is still around.

So here goes. This last week, I have felt particularly low both physically and mentally. At times I wondered how much more suffering I could take, especially after the five attempts of digging around to find a vein that wouldn’t collapse on Tuesday. I was particularly sad at having to go back into hospital again and it was so hard to watch my husband having to witness my pain. When you are used to being so independent it is difficult to then have to rely on others for even your most basic needs. Physical ill health has a direct link with your mental and emotional well being, so my usual positive self had disappeared and I felt more overwhelmed by sadness than ever before. It pains me to admit it but I started to think that the world may be a better place without me and an end to all this suffering would be a welcome release for everyone. I am sorry to share these thoughts but apparently they are quite normal for someone who has experienced the trauma that my body has been put through. I am pleased to say today I am feeling much more positive and emotionally healthier.

Myeloma is a particularly nasty cancer and everyone’s journey is very different. There is no knowing how long any remission will last or what will happen next. Some people are luckier than others and I have read stories of people being in remission for many years. At my hospital visit yesterday my specialist nurse briefly discussed the likelihood of me having to continue on some sort of chemo maintenance drugs due to the aggressive nature of my myeloma. If it’s what’s going to keep me alive so be it. The good news from yesterday’s visit is that my white blood count and my neutrophils are just in the normal range now so my body should be able to fight it’s own infections once again. My red blood count is still a bit on the low side which probably accounts for some of my tiredness.

I am listening to my body more and may just spend today in bed. I really do need to rest so that the healing can take place. Eating and drinking is still quite a challenge unfortunately due to the constant feelings of nausea. I haven’t however broken my 30+ years record of actually throwing up although I got pretty close to it in hospital.

I really want to thank you all again for your continuos support. You are my strength when I am at my weakest.

Just look at the lovely bracelet Jem bought me on Tuesday, it was so sweet and thoughtful of her.
image

With all this love around I know that each day I will become physically and emotionally stronger.

I am forever in your debt.

Thank you

Deborah x

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12 thoughts on “Writing this blog…

  1. As no doubt people tell you all the time, you are the most extraordinary person. To be able to stand back and write the words on this entry seems amazing to me. From where I am, I see someone who practices what they preach about good mental health – which is sometimes quite hard for us mental health practitioners! Even just with the normal ups and downs of everyday life, let alone the horrendous challenges you are facing moment to moment. I take my hat off to you Deborah, personally and professionally! With love and huge respect! Reni xxxx

  2. All the people’s not good in writing blogs, and I’m one of them. To write is healing and you can write your own diary. But when writing blogs is helping both yourself and others. I got so much help of Sunlovelights (Ninas) blog in my worst time. So with your way writing your blog you for sure helps even other who’s suffering of myeloma or anything.
    So I want to thank you for dealing your thoughts, dread, your positivity, encouragement, your way to be human❤️.
    Energy hugs to you!

  3. Dear Deborah,
    you wrote “but I started to think that the world may be a better place without me and an end to all this suffering would be a welcome release for everyone.” Be assured that the world would not be a better place without you. Your courage and approach to life are an inspiration. I know people who are moved and inspired by you. Far from being a welcome release, everyone I know would experience the greatest grief and sadness.

    Rest all you need.

    Love to you both,

    Patrick

  4. I cannot believe how strong you are deborah! We are the ones who have to thank you for being so inspiring! Keep up.the fight we need you here! Ellen g.

  5. Deborah do not doubt that you are an amazing person with the strength to get through this. You are completely a inspirational role model in positive mental health, thoughts go back to your brilliant MAD sessions which all your colleagues who attended still use (even those in education settings). Glad your on the mend have lots of rest, sending you hugs and lots of love xxx

  6. I so admire you Deborah, for your strength and positivity while going through this. You are allowed to feel low at times, you don’t seem like a person who would give up easily anyway. Keep believing it will get better. There is hope and you will have a lot to look forward to, even if it might seem so very hard at the moment. I know, it’s a horrible disease and yes, it is painful to witness. But like you say, the most important thing now is that you listen to your body. Everybody around you want to do whatever it takes to help you through it emotionally.
    It will turn soon
    Love
    Elina

  7. I agree with every word. Today is ASCT +28. I’ve been a reader for some time, but this is my first reply, Everybody’s journey is different, but I can’t understand why everybody’s treatment is different, even from the beginning, It complicates newly diagnosed myeloma plans for treatment. It’s a struggle.
    Keep up the fight

  8. Sweet Deborah,you write in a most amazing way and it makes me feel in awe of your brave and honest approach to the emotions you are experiencing.It must be really difficult for you to remain positive when you feel so ill but somehow you manage to find something to be glad about.It reminds me,and many others I’m sure how we should try to emulate this attitude.
    We are hoping that the next few days will see a continued improvement in your recovery,that your appetite will get better and that you begin to feel stronger again.Meanwhile,allow yourself to be pampered and spoiled a little because you are so worthy!
    Lots of love
    Aunty Judy.
    Xxx

  9. I’ve always been so impressed with your writing Deb, not only honest, fair, and good, but also excellent grammar and spelling even when you have been under great duress! Don’t know how you’ve managed to keep it up so well when you are feeling so ill and “down”. I have certainly always looked forward to getting your updates, been concerned when they have been absent for a few days, but looking forward to the time when you don’t have to write them because you are up and running on all four! Be easy on yourself as you recover. Good news about the bloodwork (except for your poor brutalized veins) thinking of you, sending love, Nicola

    Sent from my iPad

    >

  10. You are right, this myeloma stuff is no fun. I am Day +56 for my SCT and I am making good progress, and I’m sure you will too! I can so relate to your comments about a bath and being done for the day – I have only recently been able to complete a quick shower standing up! I still tire out quickly and easily. I have been very happy to hear your comments about your support staff with your husband, children etc helping with your needs. They are some important and I can’t imagine anyone going through all this “stuff” with them!
    Blessings to you, and I hope your recovery continues to go smoothly. Paul.

  11. It’s hard to know what to say really, but ur often in my thoughts and prayers. Thank you for sharing your feelings and thoughts and for being so honest. I hope your weekend blesses you. And I love your new bracelet, it’s beautiful, and you so deserve being spoiled :-). Big hugs xxxxxxx

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