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Cancer Update - September 2019

Posted 12/9/2019

Two weeks ago, I had another scan. This will be regular now for the rest of my life. My chemo can stop working at any time, so regular scans are important to check on how my cancer is reacting. Knowing this, it makes you apprehensive all the time when your scan is due, up to the point yoy are with your oncologist to get your results.

The two week wait between scan and results is horrible. No matter how hard you try, it leaves you feeling helpless. Everyone has their onw different coping methods. There is no right or wrong way. You do what works for you.

I have learnt (the hard way) to not think positivly on the outcome, but to actually fear the worst. I found that way, if they news is devastating, I have already accepted that, and have found it a lot easier to cope with. Also it means, the only way is up!

Most appouintments I can hppily manage on my own, but when the results are due, my son always goes with me. This time, I am glad he did, but and not for the most obvious reason!

My appointment was at 3.45pm. I usually see Calum, the pharmacist. Today I would be seen by Dr Haney, the oncologist. Prior history has taught me that I would have at least an hour wait for her clinic. One thing that totally depresses me is sat waiting in a hospital. I HATE it!. We did not plan to arrive early but we actually did arrive about 15 mins early. It would turn out we would need that extra time!

I know the hospital inside out. Main entrance was round the side, up the corridor, turn right through the doors, up one flight of stars to Outpatients ward C and... "Area closed"! Clinics are now on D floor. Up we go, this time in the lift to D floor. No signs outside, a bit of looking finally found where to be. A big sign on the noticeboard - have you booked in at the main entrance? Nope we didn’t because we usually book in on Ward C!

So back down we went to the ground floor to the main booking in desk. Nope! wrong desk! Main entrance, INFORMATION desk! Went over to the other side, and what did they do/ Oh, if you just go up to floor D and.... NO BOOKING IN! Just damn info how to get to where we had come from! That was it! I broke. With everything else going on the hospital couldn't even get its act together? Got back to D floor and I just broke down. I was stressed enough without all this.

The worst thing is, I was NEVER like this. I was always the strong one, determined, stubborn etc. Now cancer had changed me. I’m not as strong, in fact, now I am very weak. I hate that feeling. But that is what cancer does to you.

So finally, we are taken round to the waiting area. As always when seeing the oncologist, it is a wait. Appointment was at 3.45pm, we were finally called in at 4.40pm which was better than it usually was! Sitting in the consultation room, my heart was pounding. I just wanted to know the scan was clear, that was all!

In walked Dr Haney and Amanda, my breast care nurse. Dr Haney was smiling!!! Everything was OK. The scan was identical to the last one, no growth at all. That listed everything. You have no idea of that feeling unless you have been there. I could breathe again. This consultation turned out to be one of the best I have had yet, putting a lot of doubts and concerns to rest and giving my some chance of positivity in the coming months. She said today, she would be looking at ways to improve not only my life, but quality of life.

The thing that has impacted me, my self esteem the most, is my hair loss. I have lost so much hair, it is so thin, what I have keeps breaking off due to weakness and on the crown I look partly bald. It is a horrible feeling. This was caused mainly it seems (as I thought it was) by Letrozole, the anti-estrogen cancer drug. She would move me over to Anastrozole, another of the same family but it may be better for me hair wise. I was to try it, see how I get on with the side effects.

Second concern, the overwhelming tiredness, chronic fatigue, whatever it was. I was now going back to bed twice a day, not just once. It had come to light that this was not just me. This was one of the biggest negative feedbacks of the treatment from everyone. They had been looking at ways to reduce this, and what they had found was reducing the Palbociclib chemo from 125mg to 100mg made a difference in most (but not all) cases in tiredness but has not diminished the effectiveness of the treatment. She would look to reducing my dose next month after she sees how I get on with the Anastrozole.

She asked me about other side effects. I replied I could not think of any right now, I was fine. Now I remember I have loads, but had basically stopped thinking about them as they were side effects that they couldn’t do anything about! I have started a list to take in next month.

Another thing that came up was that there WAS a Plan B! At some point Palbociclib will stop working (I already knew this). This again gave me a sense of relief. I did not ask what it was. I have learnt to take one step at a time. Things are always changing. Sometimes too much information is as devastating as too little.

So right now where am I at? Still mega tired, but with hope. I am still using my wig for most photo sessions etc but again with some hope I may get enough hair back that I gain confidence in my own. I have decided I will start Anastrozole when I start my next chemo cycle so I can tell what is happening regarding side effects which will be in about 10 days or so.

Cancer treatments are changing all the time. All we can do is keep going. Again I will say I would not wish this on anyone. You learn to wear a mask. No one sees you take your mask off, but occasionally it slips enough for people to see some of the damage it does to you.

Keep fighting. You are alive now. Live now.

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