The Day to Day of Living with Cancer

posted in: Cancer, personal | 23

It dawned on me as I sat down to write this post, that the title above is somewhat inaccurate, or at least it has been for the last five weeks. It really should be The Day to Day of Living with the effects of Chemotherapy. My breast cancer is in itself not something I am truly physically aware of on a moment by moment basis. There is little or no pain and the lump is hidden under my skin so not visible to me. But what I am very, very aware of is the day to day effect of being on this life saving treatment. Many people have used the terms fight or battle to describe the position I find myself in. That I am fighting cancer or in a battle with cancer. I’m not conscious of this and yet the more I thought about the phrases, I realised that my body is having a fight, a battle, a war, with the very thing that will help kill the cancer and enable me to return fully to my life. Its such a bizarre contradiction and its taken me these five weeks to even begin to make sense of it.

Chemotherapy can be nasty, very, very nasty. According to my Chemo Nurse I am on a particularly nasty cocktail. Many breast cancer patients often are. Having toxic, deadly chemicals put into my body is not something I would normally sign on the dotted line to do. I have rarely taken anything stronger than a Paracetamol in nearly 20 years. Even the food I eat is usually unprocessed, organic, home grown. My body reacts strongly to all medications, additives, external pollutants. You name it my body usually doesn’t like it. So its not been a decision I’ve made lightly. But my tumor is large and the cancer is Stage 3 (the stages given to cancer refer to a combination of factors including growth rate, size of tumor and spread. Stage 3 in my case means the tumor is ‘active’ and big and there are also cancerous cells in the lymph glands under the same arm), so action needed to be taken quickly to reduce the tumor and prevent the spread.

Once I have completed the course of Chemotherapy and the tumor has been reduced enough I will then have surgery and then ultimately radiotherapy. Its a long haul. So I’m breaking it down into manageable chunks. First getting through and dealing with Chemotherapy. Then breaking that down further and getting through each of the three week Chemotherapy cycles, then getting through each quite markedly different weeks of that three week cycle. I’ve found that even minor accomplishments feel like huge milestones.

Chemotherapy is of course, very different for every person who has it and the effects vary greatly. Some people sail through the whole thing, other people start well but the cumulative effect builds up over the sessions, other people have bad experiences from day one. There are even people for whom it starts bad and then gets easier. There’s no way of knowing. I have however spoken to so, so many, wonderful supportive women who on a daily basis are helping me get through each and every problem that occurs. People have told me I am brave for being so open about what is happening to me, but I really don’t see it that way. There is an enormous, globe-encompassing network of women who are individually and collectively helping me through this in word and deed but cancer is still a ‘dirty’ word, many people feel uncomfortable talking openly about it and the effects of treatment, and this breeds even more fear amongst people having to face this. And many people have to do it alone. I am extremely lucky. I don’t. I have a husband, a daughter, a family and a truly wonderful ‘army’ of women who are providing me with emotional and physical support. And believe me, I need it.

Chemotherapy is debilitating. It attacks any cell in the body that regenerates which is why your hair falls out. Your skin thins, your nails weaken, your mouth and tongue can get horrible ulcers – don’t I know it! Your blood cells stop regenerating so your immune system collapses and you become at extreme risk of infection. Because of this there are all manner of foods I can no longer eat. You also suffer from fatigue as your red blood cells also become depleted. At the same time as this though the chemotherapy is attacking the cancerous cells. Amazingly after only one treatment my tumor had already shrunk slightly. That was a great feeling. I imagine the Chemotherapy almost like a Pac-Man, chomping its way through the invasive cancer cells. Too much? This sort of visualisation seems to help me – and it makes me smile.

So let me tell you a little about the three week cycle:

Week One

On the first day of week one I head to the Oncology Department. The staff are some of the nicest people I have ever met, both to me and Gavin and Charlie. I begin the day with a blood test to check that I am healthy enough to have the next Chemo session. This is the goal each cycle – to be ready for the next. Blood is taken and Chemo is administered through a PICC line which I had inserted into my arm before Chemo began. This little device means that a vein isn’t having to be found every time blood is taken or Chemo given. Chemo can be damaging to the veins and if a PICC isn’t used it can cause pain in the arm and even long term damage to it. Again, I only had the confidence to go ahead with the PICC because a wonderful friend who had been through the same treatment explained how she had decided not to have it and then went on to tell me about the problems she has experienced since. Talking freely and openly about it meant I was able to make an educated decision and counter my initial fears.

I go for a walk whilst waiting for the blood test results to come in. I walk down by the canal and get some fresh air. An hour before my Chemo is due to start I take my super important, anti-sickness tablet. After a couple of hours I head back to the hospital. Up to now my blood tests have been good so I’ve been able to have Chemo on schedule. I head into the Treatment Room. Its small, cosy and bright. Half a dozen wing back armchairs in bright colours are positioned around the room . There are people already in a few of them. The nurses all turn and say hello, take a seat. I choose a seat and try to clear my mind. Anti-sickness drugs are given first, and up to now have been extremely successful on me – thank goodness! My sessions take around two to three hours – this again varies from person to person – and in itself is not particularly traumatic. The PICC helps a lot with this. When the session is over I head home with my bag of medication. I am keeping a diary to help me get used to how my body behaves and during the first two cycles I have felt pretty good for the first couple of days after treatment. You are also at your most resistant in this first week. However after the first couple of days my body seems to become ‘aware’ of the toxins in it and I feel less well. In the first cycle I got the worst heart burn in the history of the world (how I explained it to the Consultant) which lasted for around 9 days. I now have medication to help with this so didn’t experience it this cycle. On Day three I begin daily injections for seven days. These injections – done at home by Gavin, bless him, who pretends I’m a sheep so he can face doing it – in turn, stimulate the bone marrow to produce white blood cells in week two of the cycle. My first major goal of the cycle – be fit enough to have Chemo; my second goal – don’t be sick; my third goal – get through the seven days of injections! I try to get as much fresh air and walk as much as my body will allow. Chemo settles in the joints so by exercising you can get it out of your body more efficiently. I also have a massage every week which draws more of it out through the skin. By the end of the week Chemo Fog has set in and I can have difficulty remembering even the simplest words so I am watching University Challenge, Only Connect and Pointless on a daily basis to force my brain to find words hidden in the mist. The fatigue comes and goes at will and I just have to listen to my body. If I need to rest, I rest. I seem slightly less settled in week one and strangely couldn’t knit at the very beginning, but the creative urge has fortunately come back and I am knitting again.

Week Two

One of the side effects that seems to start up in week two is random nerve tingling and pains in hands and feet, which can be quite uncomfortable and interfere with important knitting activity. The injections have done their job and I start to get aches in my bones – this is a ‘good’ ache. Unfortunately very similar to flu aches but it indicates that the bone marrow has been successfully stimulated by the injections and is producing white blood cells – goal one of week two accomplished! The biggest and most important goal of week two is to get through it without getting any sort of infection. This is the week you are at your most vulnerable. Its important to avoid public places or even family or friends who have any sort of sniffle, sore throat, upset tummy, anything basically. That sniffle to someone on Chemo can lead to pneumonia extremely rapidly and speedy hospitalisation is necessary. Foods that are in any way unfresh, not cooked thoroughly, surfaces that aren’t completely clean, even drying a cup with a tea towel are all risks. You feel obsessive, even annoying, but it is so, so, so important to protect your body at this very vulnerable time. Its very important to eat well, to give the body what it needs and what it can stomach (you develop a permanent metallic taste in your mouth that impacts on how foods taste, so what appeals begins to alter) and also eat foods to help combat the cancer – but I’ll talk more about food another time. Again you have to listen to your body all the time and whenever you need to rest, you rest. But really week two is all about getting to the other side of it.

Early into week two of my second cycle I had nearly lost all my hair. I had already started breaking this down into a more manageable event by progressively going shorter and shorter, so as it began to fall out in clumps around me, I knew it was time to take what was left away. There is an amazing sense of taking back control when you choose when you are going to say good bye to your hair. Yes, you have no control in as much as it is going to fall out anyway, but instead of feeling dirty, constantly surrounded by clumps of hair, ugly (I hardly dared type this word but yes in those final stages it did make me feel ugly) and vulnerable, I felt I had faced it head on and made the decision myself. Again a wonderful friend, Woolly Wormhead, did the shaving for me and explained how to use the hair clippers so I can keep my head tidy. I’m going to write about lack of hair in another post, but in a strange way I am enjoying the liberation of not having to look after my hair, of not needing to wash it or care for it. Its one less thing to worry about basically.

Week Three

This is the final stretch and is all about building your body back up so that when you head for your blood test at the beginning of week one you are as strong as you can be. My goals in week three are more basic: goal one – eat well; goal two – rest; goal three – exercise; goal four – do something for the pleasure of it each day; goal five – remember to write things down to tell the consultant (this is a hard one as with chemo fog I manage to forget practically everything!) I’m not quite into my second week three but over half way through week two!

You can see how life breaks down into these small goals that move you forward and propel you through what seems like an eternity at the start. It is hard, very, very hard. Your body doesn’t know what the hell is going on and I still have an enormously long way to go and it will get harder, much harder, and that can feel overwhelming and very frightening, as does the unknown which is why its so, so good to be able to share and talk to others who have been through or are going through the same arduous journey.

I have blue days, but by setting myself my little goals I’m imposing some structure and some small sense of achievement throughout each cycle to motivate me to keep going and if that fails I have you all, my fantastic, support network of wonderful people who are keeping me going; who are messaging me, emailing me, tweeting me, facebooking me, liking and responding to me on instagram, sending me cards and just letting me know you’re there, rooting for me. The love I have felt over these last couple of months has been overwhelming. I have felt snuggled inside the softest of hand knitted blankets, cocooning me and protecting me from what I’m having to go through. People I don’t know have shared their stories with me, to help me, to make me stronger. That takes effort, strength, determination, time, but they have done it to help me on through this. I will never be fully able to express my gratitude for the amazing support I have had and I hope you don’t mind me sharing my experiences on a blog that is supposed to be about very different things than this, but I sincerely hope that by being open and also sharing, I can in some small way, help others on the same journey.

For now,

Susan xxx

23 Responses

  1. MoniqueB

    Dear Susan.
    It must be overwhelming to have this happening to you. The chemo gives you a certain ritme as you’ve described. I recognise that when it happened to our son. Do you feel that that makes it more forseeable and therefor you’re better able to handle it?
    I’m very happy to know you have a good support group! Hugs!
    MoniqueB

  2. Anna

    Susan, thank you for writing this. I had surgery to remove a cancer from my breast 2 weeks ago and I was hoping that would be it. Done and dusted. The results of the biopsies showed that the cancer was contained in the tumour, it hadn’t spread to the surrounding tissues or lymph nodes but it was a grade 3 tumour. Because I am (only just) under 40 and it was a high grade my team has decided that chemo and radiotherapy are necessary as a preventative measure. As you may guess this did not fill me with boundless joy! I am a student nurse and I have worked on a haematology unit so I have some insight into the trials and tribulations of being on chemo. However if this reduces even further the chance of cancer returning then it must be a necessary evil and I have put my big girl knickers on and agreed to it. I had a long chat with my breast care nurse yesterday and she agrees that my plan of carrying on with my nursing course is the best way forward from my point of view. Luckily I am about to start a period of theory or it would be a different story. I always thought that the hair loss would be the most distressing part of chemo but now I am facing it it isn’t as frightening as I thought. Naturally I am a positive person so I am thinking of wigs and scarves and getting out my vintage patterns for knitted turbans – any excuse for cashmere! Those that are more optimistic during their treatment are often those who respond better and have fewer or less severe side effects. I am going to be one of those people.

    I don’t know why I have written all of this but I just wanted you to know that I am cheering you on as well as I can from the sidelines. It sounds as if you are taking the right approach and I wish you every success xxx

    • Claire Pascoe

      Thank you for writing this. I am in awe of your courage and eloquence, and I hope that each day becomes a little better than the day before. Sending you much love x

  3. Karen B

    Sending love, hugs and more.

    I remember the obsession of dealing with the neutropenic diet with my son. Hard work making sure everything he ate wasn’t contaminated. Nearly 25 years later and I can still get obsessive about best before dates.

  4. Lieke

    Dear Susan, thank you so much for sharing.
    To make it more concrete for people who’ve never experienced cancer themselves or from closeby like myself, is not only very brave, but also needed. I admire your openness and strength. Take care.

  5. Yvonne

    Thank you for sharing your experiences – I think it takes courage to speak about your chemo experience. Thoughts of strength are being sent your way

  6. Judith

    Susan I hope you show your consultant your journey as when it is complete and all your treatment is finished it could be published and read by anyone who has to start the journey . It doesn’t matter how kind medical staff are unless you have gone through this only you can explain to many what is likely to happen . What a story and how lovely Gavin is even if he does pretend you are a sheep lots of love xxx

  7. Marie Wright

    Thank you Susan, this is full of information that I knew virtually nothing about given the taboo around it all. You have been in my thoughts and prayers so much since you first told us all about your lump, and impending treatment. It is good to see that you are managing to keep positive, and to tell us what is happening and why. Well done, and I will keep on praying.
    Love,
    Marie

  8. Anya

    I’m a family physician, and my patients’ strength in facing cancer never fails to amaze me, especially as someone with a strong family history of cancer myself, especially breast and colon. Thanks so much for sharing what you are going through– I think it helps others to know. And take care of your wee self.

  9. Theodora

    It was so helpful to read this, thank you for being so honest and thorough! You are amazingly brave and inspiring – not that you haven’t been inspiring me since the day I met you!
    Love
    T.

  10. zilredloh

    First of all – Thank you for sharing your experiences with Chemo in such an honest and open way. I really don’t know the first thing about cancer & chemotherapy, I’ve only heard about its effects. So this is all very enlightening for me.

    And secondly – you’re a rock star! I can only hope to be as positive and inspiring as you are in my daily life – let alone while going through breast cancer.

    Sending you virtual *Hugs* and well wishes.

  11. Ann Kingstone

    Thank you for sharing such a full and informative description with us about what you are experiencing. I feel a lot more knowledgeable having read it, with a much better understanding of what ‘chemotherapy’ means. I love how open you are about it. You’re an inspiration! My love to you beautiful Susan as always. Xxx

  12. Carol Vincent

    Susan, Thank you so much for writing this blog post. To hear everything you are going through I know you are brave as is everyone who goes down this path determined to overcome it. Thank you for bringing us along with you through your words,
    Love and hugs
    Carol

  13. Janet Barraclough

    Thank you for writing this, Susan. I’m glad you can feel the love that everyone is sending, because it’s from the heart. I had the privilege of hearing your talk at EYF about the ‘Shetland Project’ and I just loved it! It was wonderful to see the film by your beautiful and talented daughter too. Routing for you through this horrible but vital treatment.

  14. Angela

    Hi Susan, you still look lovely without hair. There is nothing ugly about you. Thank you for sharing your experience with us.

  15. Sue

    Thank you for sharing this with us all. My love and support to you all as you go through the journey you have described do eloquently. I know that you have a great team around you but your wider world team is also thinking of you and routing for you every day.
    Lots of love and knitteely hugs
    Sue

  16. Susan

    Ah cancer, how I hate thee. It’s a sisterhood too many of us belong to. For me, it’s ovarian cancer.
    For 17 months I have been battling this force that has invaded my body. Multiple surgeries , 15 chemos, transfusions when my blood count got too low, hair loss from all parts of my body!, more blood tests that I can count , CAT scans and chest X-rays. And always, always I want to know….am I going to live? My friends say how brave I am; how strong; what a positive attitude I have. But in reality, I am no stronger nor braver than any other person who has had to travel this road. Remember, it is only one step at a time, one foot in front of the other. We are all here together, walking side by side. Trying our best. I send you strong and healing thoughts.
    From one Susan to another.

  17. Melissa Weaver Dunning

    Thank you for sharing your experiences here – I hope that writing about your life during the treatments helps you and I’m absolutely sure that your sharing will help others, as well. I feel such an outpouring of love and support for you, my virtual friend! I hope you feel this, too.
    My oldest daughter was diagnosed with ovarian cancer at age 22. It was a very difficult time for our family but it also brought us even closer together. She was a college student and she was determined to stay in school throughout her treatment, which she did do and I know it helped her to maintain as much normalcy I her life as possible.
    Our Lily Rose is now 32 and a vibrant, successful young woman, planning her wedding for next spring and thinking about having a baby in the next few years. Life is good.

  18. Risa

    Thank you for sharing your journey. I appreciate the opportunity to understand life with cancer. My prayers are with you for your speedy return to health.

  19. Sue

    Dear Susan, you are so brave. I think of you often and wish you a speedy recovery.
    Sue x

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