The Half Way Milestone

posted in: Cancer | 27

It seems a long time since I last posted. Getting through each chemotherapy session has been all an encompassing, exhausting and thoroughly unpleasant experience and to write honestly and openly I need to say so, but I am reluctant to paint a distressing picture for anyone who might be just beginning this journey or may know someone who is travelling this road. But I must be truthful about my experiences if these posts are to mean anything. I have now passed the half way point of my chemotherapy and have less weeks to go than I’ve already been through.

My first two sessions of chemo resulted in very similar experiences, the third however was quite, quite horrible. At the point of having this session, my neutrophil count was down to 1.5 from around 3.5 when I first began treatment. The lowest the count can be before treatment is postponed for a short while is 1, so I was very close to this. A low neutrophil count can result in neutropenia which leaves you without enough white blood cells to fight infection. The neutrophil count begins to fall about a week after each chemotherapy session. Neutrophil levels reach their lowest point about 7 days after treatment, which is when you become most at risk of developing an infection. Gradually the neutrophil count starts to rise again as the bone marrow begins producing neutrophils again. This however can take three to four weeks which is why the count can fall from one session to the next as each cycle is over a 21 day period.The cumulative effects of the drugs also meant my toxicity levels were high so on receiving my third treatment I experienced a truly dreadful week of illness, spending 18 hours a day in bed for the first few days. It took a further week before I started feeling even remotely normal and the decision was taken to postpone my next session by a week to give me longer to recover. By the time my fourth of six sessions came round a few days ago, my neutrophil count was up to 2.4.

The particular course of treatment I am on, involves two sets of drugs, the FEC and the T. I have now completed the FEC and began with the T on Monday. I have read and heard many unpleasant things about the T part of the treatment. People I have spoken to in my local cancer care group have called it a ‘brute of a drug’ and ‘extremely harsh’. My breast cancer nurse said it often makes people feel like they’ve been run over by a bus! Sadly, in my case they have been proven correct. After a day or two of feeling almost high because of the steroids I had to take before treatment commenced, I then plunged as every bone and muscle in my body began to ache. Red hot needles stabbed at the soles of my feet and my fingers. The pain has been so severe I haven’t been able to sleep and knitting has unfortunately not been an option for the last few days.

I’ve found it hard to think of the positives this week but when I woke this morning and the pains were receding and then I noticed that my lump seemed even smaller, I remembered why I need to go through this. I now have only two more sessions to get through and by mid November, chemotherapy will be finished. I met with my surgeon last week and she was extremely pleased with progress and is aiming to complete surgery before Christmas. It will be wonderful to start 2017 without cancer! The biggest decision I have had to make is single or double masectomy. My right breast needs to be removed to be sure all the cancer is taken away. The skin and nipple are also affected so can’t be saved. In addition I am unable to have reconstructive surgery at the same time as the masectomy as I require radiotherapy afterwards which also means I can’t have implants. There is so much to think about. I am fortunate to have such an understanding partner as Gavin who sat and discussed all the options with me, and was completely supportive of whatever decision I came to.

I plan to have a double masectomy and don’t envisage having reconstructive surgery at a later point. To go through through chemotherapy once is more than enough and knowing I can prevent it recurring by having the double masectomy makes so much sense to me. Reconstruction would mean many hours in surgery, the removal of muscle from my back or my tummy, microvascular surgery and months of recouperation, which just to have boobs really doesn’t seem worth it.

I know I’m going to appear a very different person when I come out the other side of all of this. Going from a 40DD to a ‘no cup’ is going to take some getting used to and my scars will always be there to remind me of what I’ve been through, but my breasts do not make me who I am. Cancer and particularly, breast cancer, strips away your physicality, everything you identify with that makes you who you think you are, hair, boobs, eye lashes, eye brows, sometimes even finger nails, it all goes and someone new is revealed. To a lesser extent this change happens to all of us as we age, its something we often try not to acknowledge, wearing the clothes we wore a decade ago, keeping our hair in the same style to keep us looking young. So now, I get a chance to try out a completely new model, unfettered by the bits I have desperately tried to hang on to over the years.  A brave new, boob-less me, wearing my battle scars with pride!

But for now,

Susan xx

p.s. I’ll be back in a couple of days with a Vintage Shetland related update now I have a clearer idea of what the next few months have in store for me.

Image is Expectancy by Karl Albert Buehr – sometimes called Young Girl Knitting

27 Responses

  1. Saskia

    Dear Susan,
    Thank you for this update! I send thoughts and strength to you! It’s still a long way to go for you. I’ll be thinking off you.
    Saskia

  2. Lieke

    I read your blog post with a growing appreciation of your honesty and strength.
    Take care!

  3. Carol

    Reading your blog made me cry and brought back memories I am so trying to forget. I am not or ever will be as brave as you. I couldn’t look at myself when I had my surgery, I covered all the mirrors in the bathroom, it took 3 months before I could. My hair fell out quite quickly,I had my surgery then chemo FEC 75 , and then radiotherapy.
    I too lost all hair, eyebrows, lashes and eventually nails. But at the end of all the pain and feeling so ill I am 4 1/2 years on and still here and enjoying life. You do realise we are but here but a moment in time and to make the most of what we are dealt with. I do think about you and wish you all the best.

    • Susan

      Dear Carol, thank you for taking the time to post and I am so so sorry for bringing back such bad memories. Sadly I don’t think its a time in our lives we will ever be able to completely forget and I am still torn over whether I should be so open and worry about causing distress but hopefully I’m doing the right thing. I’m so pleased to hear you are doing well now though, I hope to be able to say the same soon xxxx

  4. Doris Rath, Instagram: Dotti1502

    Hallo Susan,
    thank you for your post. The cancer can take your boobs, but not your beautiful face with the light in your eyes. He can’t take your soul.
    I love your pictures and posts at Instagram and your blog. It is good, to talk or to write about the illness.
    I wish you all the best
    ❤️ Doris

  5. Amanda Jones

    I have to say after my first T chemo, I really thought I had got away with the pain thing as it didn`t kick in until day 3 then it hit my like that train and it was my lowest point. nothing touched the pain. but for the 2nd I started the pain killers every 2 hours from day 1 and it really helped (don`t forget the laxitives though!) by the 3rd I had every aspect covered & didn`t suffer nearly as much. Stay strong xx

    • Susan

      It only kicked in on day 3 for me too Amanda but I’d been taking pain killers since day 1 so I dread to think how bad it would have been without them! And completely agree, I think its been my lowest point too. Interestingly – and I deliberately didn’t mention it in the blog – I’ve been the opposite, have definitely not needed laxatives. Have had to take meds to stop me going! Its been horrendous. What pain killers did you take by the way? I really want to do anything I can to stop the next two being as bad xxx

      • Amanda Jones

        I took paracetamol and then codine so suffered terribly from constipation- oh the joys of cancer, as if the pain wasn`t bad enough from the chemo, give the girl the worst ever constipation!!
        the combination of the 2 pain killers did work to reduce the pain but not totally. I found at night having a small cushion between my knees helped a bit to stop my knee joints rubbing together and I took sleeping pills. I really was a complete zombie for the 2 weeks after treatment.
        on the bright side after the last treatment the pain diminished but you are left with numb finger tips & toes ( this will last for a while – mine still are numb) but it isn`t too bad.
        I hope this helps you. I think the brutal truth is better than skirting around the truth. The drug is horrible it is from the yew tree which we have always been told is toxic but it does the job. take care and I feel for you. xxx

  6. Bex Hopkins

    Susan I wish you all the luck and strength to get through the rest of your treatment.
    You are not defined by your boobs or your hair, or any other part of your appearance. You are your warm heart and talented creative mind and many more things besides.
    I cared for my mum through conservative treatment for breast cancer, only for it to return 6yrs later in the other breast and having to have a double mastectomy anyway. I know the chemo therapies etc have improved, but as you say why risk going through it all again!
    It sounds like you have made peace with being boobless, you are very brave to accept this and move on. I respect your strength in talking so openly about this subject and I’m sure others do too.
    We will be thinking of you are you get through these difficult months of your life, keep looking forward. x

  7. Sheila

    Hi Susan, thank you for posting this. I think it will only help people deal with the reality of breast and other cancers as they go through the treatments. I, too, an a breast cancer survivor. My cancers, two in the left breast, were caught much earlier. One was still DCIS, the other was invasive, so a mastectomy was the wisest choice. I able to have immediate reconstruction, but results were far from optimal and not what I expected. My husband and I were handed the implant to feel, but in place it is much firmer and unnatural feeling. The skin over the implant is always cool to cold, too…ick! I really should knit a snood for this boon to keep it warm…what would a half-bra be called? A br? My surgeon pushed for a reduction on the right, 38DDD before, so they would “match”…..um, they don’t. The implant is high, great cleavage! The right is still kinda droopy, no cleavage, looks really odd in my usual V-necks! And the nipple is completely numb. That was a big surprise, and a very unwelcome one. I shouldn’t complain, almost four years on, I am cancer free, no chemo or radiation; I do take an estogen suppressor for another year or so. I fully support your decision to avoid more surgery…my plastic surgeon wanted to add a nipple to the left, but that seemed so stupid…and, to be honest, I don’t trust him to touch me again. Keep up the good fight. Maybe look on each chem session as if it were childbirth….it’s awful while you’re going through it, spousal/SO support is key, and at the end a new life results. Its not the life you had before, it’s a new and better one with moments to spend with loved ones!

  8. Lisa-Marie

    Susan, as a 3 time cancer survivor, boobless, wombless and having had to have a bone marrow transplant, I can honestly say that When all this is said and done, you will find yourself a more harmonious person. You’ve seen the worst and once you get through the operation, you’ll be left with the best. You will still be on the right side of the grass able to enjoy this amazing world and the people you love and whom love you, will still be next to you, ready and willing to love the road in front of you.
    I’m glad you are putting your treatment journey out there, warts and all,as it will hopefully inspire all who read your journey to check themselves, and others to appreciate and understand better how hard it is to go through a chemo treatment.
    I know you will get better.
    I know this is a very difficult time for everyone. Hang in there and keep your chin up!
    Sending you lots of healing love.
    Lisa-Marie

  9. yvette

    Your honesty leaves me gasping. Once again as I read your articles about your treatment, I am amazed by your writing. As you did with your Shetland Project film narration and your David Bowie tribute, you show us your spirit with your words. You are a beautiful person Susan, An artist and a journalist of life. Thank you for sharing and I wish you peace and wellness.

  10. Sunny

    Amazing what your body can tolerate if it has to. Your eloquence helps those of use who have not been through ti and those who have. Please look at an organization that I knit for as do many of my firends. http://www.knittedknockers.org/ Started by a woman who went through breast cancer, the patter is free and each knocker/breast can be made with a nipple or without and there are four cup sizes. You may not want to wear them all of the time, but my friends I have made them for, have appreciated them and found them more real than the foam store-bought kind. Some people knit a Shetland pattern into them or you could embroider your our painless tattoo.

    Your bravery, strength, and honesty is remarkable.

  11. Jane

    So well done. Now, I am sure you know this, but there is a group of wonderful ladies who knit, yes indeed, false boobs for ladies like yourself!

  12. Sally

    You rock, Missus.

    I for one really value the honesty – even when brutal – of your posts. I am old enough to remember when you didn’t even mention cancer, when it was hushed up, guessed about. How much harder it must be for people going through it to not be able to discuss it, for their friends to avoid talking about it – or even avoid seeing them so they don’t have to be careful what they say. So, so much better for it to be not taboo, something it’s okay and normal to talk about, reducing our fear of it all round. And the less we fear it, the more likely we are to take action when we notice a difference in our own breast, and get the prompt treatment which is do often a life saver.

    More than 20 years ago, my mother had breast cancer. She opted for a mastectomy, and to not have reconstructive surgery. The lovely ladies from her local support group came round, showed her their prosthetics, encouraged Mum and Dad to play with them. One lady said they mostly named their prosthetics, and that hers was called Emily. Dad, always ready with a groan-inducing pun, quickly decided that Mum’s should be called Lucy. (As in ‘Righty Tighty, Left Loosey’.) These days Lucy only comes out for special occasions, neither Mum nor us notice whether she’s lopsided or fully figured.

  13. Yvonne

    Isn’t it amazing what challenges our lives can bring forcing us to make a major shift in priorities. What we used to think ‘defined’ us suddenly isn’t important, and we find ourselves standing like a deer in headlights on a dark road discovering who we really are. Arms of love go out to you Susan….. All will be as it needs to be in the end. You have love and support more than you ever know..

  14. Lynne S

    I did neoadjuvant chemo too – FEC was like having a slow case of the flu. Survivable but not pleasant. I could feel my lump shrinking after the first round. Taxotere knocked me for six. It was the hardest thing I’ve done but you can do this. Please do keep on top of any symptoms you have. Talk to your oncologist. Don’t try to tough it out – follow the advice of the ladies in the BC forum on Ravelry!
    Wishing you the best Christmas present of them all 🙂

  15. Susan

    Your honesty is a testament to your strength. Every battle that people have to fight can only be helped by, not hindered, by being prepared and forearmed. I admire you and pray that you have the strength to kick this thing in the butt!

  16. Sue

    Hi Susan

    You are so amazing, I am in awe of your bravery and positive attitude. Thank you for writing your blog and being so honest. With very best wishes, Sue xx

  17. Jacinta

    Thank you for such a moving post. I am sending all good thoughts and prayers for your recovery.

  18. Mila

    I feel how hard this decision had to be for you (still wiping some tears away which occured by reading your post), but I have to say, I’m really proud of you. All your words are showing that you are a strong, creative, passionate person and even cancer can’t take that away from you.

  19. Vicki

    Such an honest post – I’ve just finished 6 cycles of Tac- doxataxel- I’m now in week 4 post chemo- and just starting to feel better – it’s tough but we’re tougher! Sending you lots of positivity and love xxx

  20. vintagejoan

    You are a very brave woman. Think about you a lot, sending you energyful thoughts and wishes for a recovery.

  21. Deb

    Dear Susan,
    I just read your e-mail newsletter. I’m so sorry to hear you are going through all of this. I’ll send some healing vibes. I’d like to say that I don’t think you need to apologize for the delay of the book. It’s entirely out of your control. Keep fighting for your health.

  22. Cate

    Dear Susan, I’ve been reading your story over the last few weeks, and as a huge admirer of your work, I just wanted to say thank you…. and that your words are helping a couple of my friends who are going through similar stuff….
    best wishes…

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