Cancer Returns

Posted 26/9/2018

Breast Cancer Care leaflet - Secondary Breast Cancer In The BoneBreast Cancer Care leaflet - Secondary Breast Cancer In The BoneTwo years ago I fought breast cancer. Since then I have suffered some long term after effects of the treatment, the first is hair loss from the medications. I have lost a great deal of hair, I always had fine hair but masses of it. I had loads of hair. Now I have lost about 40%, its so thin and it is not me. Even though it is growing and now is quite long, I still use my wig to take my daily photos of me now. I still have not yet gained the confidence to go without it. 

The second long term side effect is and chronic fatigue. This really does take a heavy toll on my daily life but as most others I have found a way manage it and move on as best I can. Things that most people take for granted I dream of. Every day, to get through my afternoon shift at work, I have to rest, sleep in the middle of the day. I am lucky in that I work mornings and late afternoons so I can get the rest I need then happily go to work for my afternoon shift which right now I do manage quite well. The downside is betime you get something to eat, get housework done, chores, shopping etc, you have no time left for most other things. (Hence the absence of any updates here!)

I am at a point now, I need to change things in my daily life to give me more time to do things like this blog, and still keep going each day. If I can get things done earlier, faster or even skip things on some days, I hope this will give me more of a chance to do things that I want to do, not just what I have to do. With this in mind, today I have manged to finally make a little rare time for myself.

So, today is an update of what is happening now. (The clue is in the blog title!)

Every year for the past 5 or 6 years I have suffered from a debilitating cough that as yet no one has found the cause of. It takes a heavy set of anti-biotics with penicillin to clear it up and I toddle along with life. This year turned out to be very different with far reaching consequences for me as well as a huge amount of luck on my side.

Thinking back is scary as I consider what could have been if everything had taken place one week later.…

My life has been quiet for the last couple of years. This year, for the first time I got the cough back for a second time in a year. I have always had the cough at the beginning of winter. This year in April I started coughing again, and just put it down tom a summer cold. But the cough remained and started to grow more persistent. In the end I found I was back on my soothers or having to go to bed to stop the cough. This is actually the biggest giveaway that my cough was not “normal”. If I lay down, it stops!

So off I went to see my wonderful Nurse practitioner Gail who has seen me through many things including my breast cancer. In fact that is how I met her. She was new to my surgery and I had not had a good experience with the other nurses when dealing with my blood pressure. Gail was going to be my last chance and I am happy to say she was brilliant and managed to sort everything out. She was also who first gave me the warning it was a good chance that I had breast cancer.

Once again I presented myself with my cough and my soother in my mouth. This time there was a difference. I also had chest pain I had never had before with the cough. Gail decided to send me to the hospital for a chest x-ray. A week later, it was clear, and I was still coughing. We had our usual discussion about what it could be, I was adamant again that it was the same chest infection as the only two things that stopped me from coughing with sucking on a sweet (boiled sweets were the best) or going to bed! Checking back over my history and seeing the yearly reoccurrence and what I had been prescribed the very first time to finally get rid of it, she prescribed my antibiotics. She wanted me back in 10 days.

We both laughed as ten days later I walked into her surgery and her first words were “let me see your mouth!” as I walked in with my mouth open, no soother! The cough was gone, but the pain remained. Gail concluded that the pain was because of the coughing, I had strained something. That seemed right so off I went again to get on with life.

But the chest pain didn’t stop. In fact it was still getting worse.

I was due in July to go have a hernia op so I was backwards and forwards to the hospital prepping for that as well as my post cancer checkups. My surgeon was wonderful sorting both out in the same clinic, saving me a lot of extra appointments.  I had also recently had my medication changed from Tamoxifen to Letrozole. One of the biggest side effects of Letrozole was bone pain that could take three months of more to show. Thinking about it, it had been about that time since my meds had changed so I was starting to think maybe the chest pain was from the Letrozole as it felt like it was in by chest bone. That eased my mind.

Routine appointment at the hospital, checking my post operative mastectomy scar and talking about by upcoming hernia op, as I sat up, the pain in my chest was quite acute. My surgeon asked about the pain and I explained what had gone on, putting it down finally to Letrozole. “Ahh but Letrozole causes pain in the extremities, the hands and feet, not in the chest”. I was to be sent for a bone scan, just to be sure. I wasn’t at this stage too worried. It could have been to do with the cough after all. A few days later I was laid under the bone scanner watching Frozen!

A couple of days later I noticed the pain was easing, and betime I was due back to the hospital for the last pre op appointment for my hernia, the pain was gone! I told my son everything was ok, no pain, nothing to worry about, the scan would be clear, I would be ready for my op and I was happy again. He still came with me, just to be sure. I knew as soon as my surgeon walked into the room something was wrong. They had found a shadow on my sternum but when I said the pain was gone, he relaxed and said that it was a positive sign and hopefully it would turn out to be nothing, but lets be sure...

Thus began the scans. MRI, CT, ultrasound, I have lost track of them all. One scan was done the morning I went in to have my op. I had the scan in the morning and my op in the afternoon. (that’s another story!) All this went on for weeks. Then add in the delay in getting the scan results, phonecalls to delay appointments until the following week as they had not come through. By the end of August I was finally told I had bone cancer in my chest. Then I needed another scan to make absolutely sure it wasn’t in any of my organs. It wasn’t too bad, A little bit of bone cancer in my chest bone. I had gotten off lucky, so I thought.

Me with my favourite wig, still lacking self confidence due to my thining hairMe with my favourite wig, still lacking self confidence due to my thining hairFinally, a few days before I went back to work after my hernia op, I was given the final results. I have bone cancer in my sternum, right hip, left pelvis, and my back is covered, with two major spots at the base of my spine. It is incurable, only manageable. I am now living with bone cancer. The good thing is I have no symptoms at all, so we are hoping we have caught it early enough to be able to conatin it.

Now to the scary part. One week later after that consultation when I sat up with the pain, one week after that the pain had gone! If my follow up appointment had been one week later, I would not have even mentioned the pain. In fact I was later told the specialists had considered cancelling the initial bone scan as they were so sure it was not cancer. One of them even apologised to me for that. I was very VERY lucky.

So here I am now, being prepared for more medications. I will remain on Letrozole with a very new drug called Palbociclib being added in. I will also remain on the horrible Zoladex injection for a while longer but I can now have the three monthly version which helps (four a year instead of twelve)

I will also be having a new chemo injection every four weeks at the hospital with tablets on top. The injection will strengthen my bones using the calcium in my body, then I will be taking high does calcium tablets to put the calcium back in my body. Add to this blood tests every two weeks to start, it is difficult keeping up with it all. I also have to have a flu jab as well as having any dentistry work done before I start the meds due to the chemo effects and higher risk of infections while on the treatment.

As to prognosis? I was asked if I wanted to know but I declined. Right now I have no symptoms. I feel good, a little stressed but this not totally due to the cancer but another outside influence. Right now my thought is “How long is a piece of string”

I always knew I would get cancer back, it was a question of when. I was under no illusions what was coming in the future. I was lucky I had this diagnosis before the real symptoms emerged. Any prognosis you get is really “Best Guess”. There is no way to know what will happen. I will not worry about the next step until I reach that stage.

Right now I am more concerned about the side effects of the medications I will be on, especially more fatigue and more hair loss.

Every day I look in the mirror and it is still not me. It is still a stranger, and I am looking for a someone I knew years ago, a memory of someone.. .

Me, before cancer.

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