Chemosabe Five – A Slow Walk Downhill!

It feels like I’m in a glass cage with many different faces looking in, each with a question or concern or a need to get something from me, mostly blood.

Sounds a little dramatic and I rarely indulge in drama. Trying to work out why my body is reacting the way it is, has injected a little drama into my life of late. I won’t mention all the details as it’s deeply personal. Is it the chemo? Is it hormonal, or both? Could it be something else relating to something else, relating to, I don’t know?

My body has no idea what it is meant to do or not meant to do at the moment. I think what it does want, or mentally, what I need, is time out. I don’t know if I can handle another conversation about what may or what may not be functioning as it used to. It’s all getting a little intrusive, but that’s nobody’s fault.

Last week, the only day I had away from a hospital was Tuesday and even though my experiences at the hospitals are positive, I am feeling like I’m completely over it at the moment. To the nurses in the Infusion Suite who are now following my blog, I will always look forward to seeing you!!

I had mentioned before that my haemoglobin count had been jumping around since last week and after being told that it had dropped even lower, it was recommended that I have a blood transfusion, which I agreed to have last Friday. We still can’t get it to settle, but fingers crossed that it does 🙂

The transfusion itself was straight forward and the whole experience was very pleasant. I was at a different hospital and was looked after by Om and Anthea who were both completely brilliant and caring. As the first bag was set up, I directed my thoughts towards the fact that I was receiving life blood from some lovely soul out there. I’ve always given blood, but now I was on the other side. I felt deeply grateful.

The first bag took 3 hours. I was mostly on my phone responding to messages coming in from various sources so I was very distracted, but feeling fairly upbeat. The time went by in a flash. Anthea hung up the second bag which would take another 2 hours. Again, I inwardly expressed my gratitude. Anthea remarked that my cheeks were starting to look rosier which was music to my ears, but I wasn’t feeling any different. The second bag emptied as quickly as the first so I packed up, said thank you and wished everyone a good day and made my way slowly out the building and down the road to find the closest station to get a train home.

For most of last week, my steps felt laboured, my breathing shallow and overall, I wasn’t my usual quick paced self. It took a while to get to the station, but once I was on the train I just sat. I got off at my stop, had some stairs to climb and walked back to the house like someone I didn’t recognise.

For the entire weekend I felt like I was sitting with someone I didn’t know. My thoughts and curiosity escalated and I began to wonder about who had given me their blood and what it may mean to have someone else’s DNA flowing through my body. I know it seems unkind, but I actually felt like there was an imposter in my body. I know that’s unfair and extreme, but it unhinged me a little. I honestly wasn’t feeling like myself and all I was able to do was sleep. It’s difficult to explain, but I’ve stopped over thinking it at least and I’m sure things will improve.

I have received so much love and support since the transfusion and over the past few days, but that too has been clouded by a feeling of not being able to communicate with anyone, especially to discuss anything relating to my bodily functions. Friends are checking in to see if I’m dancing yet. I can assure you, I’m NOT dancing.

My journey feels like it’s reached the “messy stage” and I suppose that happens for most people going through chemo. I’m not attaching too much power to that statement or even submitting to the idea that things will now get harder. I am also incredibly cognisant of the fact that there are stories and situations out there that are far more severe than mine, so what feels messy to me may be a walk in the park for someone else, but you can’t make comparisons with something like this and it’s wise not to.

I’m chewing on something new this week. I haven’t been connecting to the things that I normally do that have helped me get through so far. I’ve reached for chocolate and ice cream and have done a fair amount of venting, which I know my friends may secretly like, but isn’t usually something I do.

I made a statement a while ago that my body now belongs to medicine. While I was lying down doing some visualisations yesterday, I was reminded that we are not our bodies. All of these emotional reactions in the last week, although justified are not the fullest expression of me. My deepest “knowing” is on a soul level. That’s where the answers lie, and the unconditional love and comfort is and the clear realisation that everything is ok in my world regardless of what is happening or not happening with my body. I was glad for the reminder.

To those in my inner circle who embraced me and my tears, called at the right time with perfect advice, or let me vent and then gave me space, thank you from the bottom of my heart. I won’t mention names as I’d worry that I miss someone out, but you know who you are.

I’m not sure if this is a good thing, but I do feel slightly recalibrated by all of this so let’s see what unfolds in the second phase of my treatment. You can’t have any expectations with this can you? That would be a huge mistake to make.

Tomorrow is my sixth chemo treatment and third Herceptin injection.  Long way still to go with Herceptin, but half way there with the chemo!

I’m not my usual happy, energetic self, but high five anyway 🙂

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