In-Between Days

I had my 5th Cycle of chemo 5 days ago, the 2nd  of the dreaded Taxotere and it has been manageable. So much so that I didn’t want to write about it too soon and jinx it. I have only a little of the inflammation pain that I had before and none of the stabbing pains from my pelvis.

This is the only chemo I have had which has not been marked with constipation. I haven’t even taken any medication to facilitate this outcome which given my previous experiences seems nothing short of a miracle. The actual process of getting the cannula in went well and although there was discomfort when the drugs passed into my veins, it passed and was not nearly as sore as it had been on the 3rd cycle on the tumour side.

I was told however that my bloods are low and I will need a blood transfusion before my next and final chemo, I wasn’t expecting that. It does make sense though as the injection that you get to stimulate your bone marrow to produce blood cells seemed to be the trigger for the pain I experienced on the last cycle and it obviously was not able to produce the required amount of blood cells. It explains too why I was so breathless even climbing the stairs to my son’s bedroom. My periods stopped and my nose was full of blood during the last cycle too. A blood transfusion sounded a bit scary to me but it will be the quickest and most efficient solution to the anaemia as it cannot be fixed by diet or iron tablets.

I increasingly get night sweats and need to go to the toilet in the middle of the night. So I am writing this at 3am. But I feel so grateful to not be feeling the pain and misery that plagued my last cycle. So I feel upbeat, although very tired.

Yesterday I met with the group of ladies, who are in my ‘Living With Cancer Group,’ we are agreed that this is the most depressing name for a club ever! We will be thinking of a new acronym. We had a lot of fun and laughs together while talking about things that people say to you when you have cancer.

My friends and family have been great and have supported me through this diagnosis. I understand that people don’t always know what to say, I still don’t know what to say! But it is also true that some responses are more helpful than others. So the next bit might sound negative and I don’t like to be negative but these are the things people said to me which I did not find supportive.

First, being told after getting my diagnosis that I would be ‘O.K’. I found this very unhelpful. I had not even my scans back to indicate whether the cancer had spread or not and being told I would be ‘O.K’ felt like my diagnosis was being dismissed. At this point my doctors couldn’t tell me if I would be O.K , nobody knew what the outcome was going to be. I did point out at that I had learned to cope with the uncertainly of my diagnosis and it helped me if others could do the same.

Second, being told that breast cancer is a good cancer. It doesn’t feel good to have cancer so putting those words in the same sentence just doesn’t work for me. It is true that breast cancer has good survival rates compared with some cancers but unless you have one of those cancers it is not a comparison that you need to make. Also if the cancer has already spread then it’s not so good and you are probably not in a position to know that when you are telling someone about their ‘good’ cancer.

Finally, when articulating my fear of the risk of the cancer coming back (or never really having gone away) I have been told that there is risk in everyone’s life. This is true of course but comparing something of very low risk like being hit by a bus or an asteroid is not the same as the risk of death due to cancer.

I accept my risk and having a 70% chance of surviving the next 5 years is a reasonable outcome for having cancer. It still puts me at greater risk of dying than an 85 year old woman. A woman in my age group has a 0.09% chance of dying. Making this comparison does not make me feel better about my diagnosis. I plan to do all I can to move forward into the future and not allow the fear of my diagnosis and the uncertainly of its recurrence to spoil my life. Managing a potentially life limiting illness is not the same as living with the possibility of random risk. It doesn’t feel the same.

I have looked at my children and calculated how old they would be if I died within 5 years. I have sat in the doctor’s surgery as the reminders for bowel screening flashed up for 50 year olds wondering if I would live to 50. I walked over the fields with my dog as the carrots were growing in the fields, it’s a 7 year rotation and I wondered if I would ever see the next crop. I wondered if my dog would live longer than I would.  I don’t know if this sounds self pitying but it is how I felt because I did not know. I still don’t know.

That all sounds rather miserable perhaps but I don’t feel miserable. I am just being honest about my experience. The other ladies had had awful things said to them too, and all well meaning but just very unhelpful.

I would not want to say something to someone in a difficult situation and actually make them feel worse. I also know I have probably said things like this to others the past with the best of intentions. So I am writing this not to be negative but only to share my experience. This is how it is for me. This is how it feels.

That said, while finding the above comments annoying perhaps it is better to say the wrong thing than say nothing. My friends have been there for me and I am grateful. I hope that I can support people in the future having had this experience. I have learned a lot and am still learning.

This reflection has been difficult to write because I am generally a positive person but being told to stay positive and be strong has been also been an irritant. I am both these things, unless I’m not! I never claimed to be brave and while I have shown courage in dealing with my diagnosis I have also disguised fear. Does that amount to the same thing? Hiding my fears from my children about what was happening to me was the most difficult thing. The dark thoughts I had looking at their faces. Would I live to see them grow?

I have one more chemo to go. I hope. I have been able to enjoy my life in-between the cycles of chemo. I have had fun, seen friends, gone for walks, engaged in creative activities. I have loved my husband, family and my friends. I have made it through this experience so far and I am grateful.

These have been the in-between days and they have been surprisingly good. Each day has had something good in it, even those difficult days. You put one foot in front of the other and you just keep moving forward. My dog taught me that!

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