Here we go again?

I was hoping for a year to recover mentally, physically and emotionally. 2017 is my year of refreshment leave (aka unpaid leave). A year for me to become myself again, whoever that person is. To get healthy after breast cancer, the treatment and the dreadful Letrozole which knocked me back in 2016

It is May and I am starting to hear the whispers from my body again. Not all is good, that something is wrong. You know, ‘that feeling’ that something not good is going to happen

I started taking Letrozole in August 2016 and started limping soon after, then my arms became weak, my hands hopeless, I struggled with fatigue. In January I could barely walk because of all the aches and pains in my body. At that stage I emailed my oncologist with the list of side-effects I was experiencing and she told me to stop taking the horrible pill. I was also referred to a new oncologist closer to me

The new oncologist agreed with me and my previous oncologist that I should stop taking this drug, as it had only a 1 – 2% advantage in my case anyways, to prevent the cancer from returning. The side-effects weren’t worth the small advantage. I slowly recovered and became stronger, even the fatigue improved. I still walk with a limp, but otherwise I am feeling really good

Because of the aches and pains my new oncologist ordered a bone scan to double-check that the bones are clear, just to be thorough. Which I appreciate, now more than when she suggested it 🙂

The results came back clean which indicated no cancer spread to the bones. But it picked up a growth on one of my ovaries. She asked my GP to organise a blood test (CA-125 blood test) and an ultra sound. Yesterday I went for an ultra sound and yes, I have several cysts in my right ovary. All of them about 3.7cm in diameter. I don’t have the final results yet but made an appointment to see the GP tomorrow morning, to hear what the results are and where to from here

Whether this is ovarian cancer or not, I will have to go through surgery to remove the ovary (I will definitely be asking for both to be removed). My age and the fact that I am post menopause is counting against me, as these cysts could indicate cancer. No, I am not saying it is ovarian cancer, I am saying it could be. That is my gut feeling

But I am ok, at this stage it has not been confirmed. I am starting to research gynaecological oncologists and will talk to my health insurance company today to make sure I know where I stand with it and which gynaecological oncologist they recommend if I decide to go private, instead of using the public health system. In the end it will depend where I can see a specialist first – in the private or public system

I feel a bit gutted that this is the situation and that 2017 is not going to be that ‘refreshing’ after all. I feel a lot of things, which I would rather not say out loud until I have more facts

But the cysts will have to be removed and at my age they normally suggest the removal of the ovary/ovaries too (I had a partial hysterectomy some years ago) – which potentially means quite a big operation again

So yes, here we go again……………………

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Letrozole/Femara

Letrozole is also used to help prevent the cancer from returning. Some breast cancers are made to grow faster by a natural hormone called estrogen. Letrozole decreases the amount of estrogenthe body makes and helps to slow or reverse the growth of these breast cancers.’ (direct quote from http://www.webmd.com/drugs/2/drug-4297/letrozole-oral/details)

I was a really sissy during radiation and didn’t cope with it very well. Some people fly through radiation, continuing their daily lives like normal. Not me – I got tired, although it is not the normal tiredness, it is fatigue. Fatique just happens – I didn’t have to do anything specific to feel fatigued, it could simply be because I got out of bed. Or drive, or do needlework, or nothing at all. It is horrible because you want to do things, you plan to do things, and then simply can’t because your body doesn’t want to. Sometimes I would start with a lot of energy and enthusiasm, just to be knocked back and soooooo tired I couldn’t move. Even reading is impossible at times when you are fatigued. I am off work for a year (unpaid leave) because I realised that I wouldn’t be able to feel like this and work. And I thought the stress at work is preventing me from recovering

Some months after radiation I started with Letrozole. I thought as if I was really doing well and still blamed radiation for the fatigue

Then I struggled with my knee – it would just hurt at random times….when I sat down too long, when I walked and when I got out of bed. At times I was limping, other times my knee was perfectly fine. I just thought things like this happen as you get older and didn’t really worry about it

I noticed weakness in my arms and hands at some stage – so much so that I struggle to open the toothpaste one morning. And then other bottles. Or a ‘tiredness’ in my arms when I carried something, or put the washing on the line. And then it will go away and come back at the most unexpected times. At times I had to use both hands to pick up the laptop, or to put it down, as one hand/arm just wasn’t strong enough to hold it up

Suddenly I had trouble walking. I would get out of bed and my feet would hurt so much I couldn’t move them, or lift them or walk unassisted. I started to shuffle slowly, like a very, very old person. And then the pain started to continue throughout the day and I had sore feet 24 hours a day. And my legs, and my knee (just the one knee, funnily enough). And then my arms started hurting, and my shoulders. And I got tired even quicker. My battery simply never charged to full power any longer

I didn’t sleep well at night, although I felt exhausted. Other days I slept the whole day and night. Everything became unpredictable and one day things clicked and I googled ‘side-effects of Letrozole’. Yes, I know you aren’t suppose to google health issues……..but sometimes I think you should. Because there it was – every single thing I felt. I could tick off so many of the side-effects of Letrozole – most of mine are classified as ‘rare side-effects’, with only 1 in 100 complaining about it: (I changed the text to red where they listed the side-effects which I experienced)

Common side effects

More than 1 in every 10 women have one or more of these effects.

  • Hot flushes and sweats – this happens in about 3 out of 10 women (30%)
  • Pain in joints or bones – this affects about 2 out of 10 women (20%)
  • Tiredness and weakness (fatigue) occurs in about 2 out of 10 women (20%)
  • Increased levels of cholesterol in the blood – this is usually only slightly increased

Rare side effects

Fewer than 1 in 100 people have these effects.

  • Nervous disorders, such as anxiety, nervousness, feeling irritable, drowsiness, or memory problems
  • Difficulty sleeping
  • Changes in sensation, especially touch
  • Eyesight changes such as blurred vision
  • Red, sore eyes
  • A faster heart rate or feeling of the heart beating (palpitations)
  • Joint stiffness (arthritis)
  • Pain, stiffness, and clicking in a finger or thumb and a small lump in the palm at the base of the affected finger or thumb. This condition is called trigger finger and the affected finger may get stuck when bent towards the palm. Tell your doctor or nurse if you have this
  • Pain, a weaker grip, and numbness and tingling can occur in one or both hands, particularly in the fingers and thumb. This condition is called carpal tunnel syndrome. It is caused by pressure on a nerve that passes through the wrist into the hand. Tell your doctor or nurse if you have this
  • Breast pain
  • A high temperature (fever)
  • Taste changes
  • A dry mouth and feeling thirsty
  • Weight loss
  • Urine infections

I contacted my oncologist by email, listing how I felt and she recommended I stopped this medication immediately, and that we will re-assess again in three months.

Now, three weeks later, I still struggle with these side-effects, but it is becoming better. My feet still hurt, but less. I still get tired, but it seems as if my battery remains charged for a bit longer. I have more strength in my hands and arms. Yesterday my knee didn’t hurt at all. I feel better and I am positive that as soon as I have all of this drug out of my system I will feel much better.

I guess I have reached appoint where I will have to decide: quality or quantity. Am I going to take this drug again and have a miserable life, live with so much pain that I can barely walk. Where I can’t do things I love to do because it aches too much. I can see myself ending in a wheelchair if I have to continue this drug. Or am I going to stop taking it permanently and risk the cancer coming back – shorten my life but have good quality of life?

At this stage I am choosing quality. I’d rather live shorter, that living with terrible pain for a longer period. Personally I don’t think that is going to be a pleasant experience. Neither will dying of cancer be, but at least I will be able to enjoy life

I am not saying women shouldn’t take Letrozole. I am saying I am not going to go back on it because it is bad for me. I am worried about the battle lying ahead with the oncologist because I don’t think she will be understanding and supporting me if I refuse to take this drug.

The day I was diagnosed with cancer it felt as if I lost control of everything – I was told when to do what – when to report for surgery/treatment/appointments. It felt as if everything was out of my control, which is hard if you have been a very independent person your whole life. Now I am putting my foot down and taking control. I am not going to take this harmful drug again, I am going to risk getting cancer again. But until that day I am going to have a good quality life. Maybe shorter, but better

Aches and pains

The cats and I are slowly settling into the new environment, with the cats absolutely enjoying the huge space they can explore. I find them sleeping in new places every day. There are still heaps of boxes to unpack- I love the packing part but struggle a bit with unpacking. At this stage my goal is at least one box a day

The house is a bit of a disaster zone as there was a flood on the ground floor when the hot water cylinder decided to do more than just leak. The carpet will have to be replaced in three rooms. This is a good opportunity to paint the rooms and replace the curtains. It will be fresh and new downstairs

I have to say it is lovely to cook for another person again, and to sit and enjoy a meal together. I think both of us had enough of eating alone in front of the television and I am setting the table for us. It is really nice

For the past few months I have been struggling with aches and pains – mostly in my feet and legs, but sometimes also my arms. I struggle to walk when I get up in the morning, or after sitting down or standing up too long. At times my arms hurt and I can’t lift them very high, or there is just a general feeling of weakness. But my feet are the bigger problem as I seem to be shuffling a bit at times, as if I am a very unfit old woman. Which I am not! I have also been struggling with fatigue, which started during radiation treatment, and it still continues – I seem to need to recharge at the most unexpected times, sometimes even very soon after getting up in the morning. This is all very frustrating and I am very tempted to stop using the medication which I have to use for the next 5 years (or 4.5 now) as it seems everything I feel could be a side-effect of the Letrole/Letrozole I am using to treat the breast cancer – it is suppose to prevent the cancer from growing again. I don’t think this is the quality of life I want for the next few years. I hope to see the breast surgeon or oncologist soon for a follow-up and will discuss this with them

When I feel sore or tired I now sit back and give my body a bit of a break, and I do cross stitch or work on my High Tea Crochet Fusion Quilt. I did the blanket-stitching around four blocks last week and crocheted the border for these four blocks today (that is why I have such a sore arm at the moment). I have now finished about 12 of the 36 squares and will spend some time from now on to complete the blanket-stitch for the rest of the squares and have them ready to crochet. Because I am not very patient I have also started joining some of the blocks 🙂 This is such a pretty project and can n0t wait to see it done, but it will take another couple of months (or more) to complete (Just noticed I started this on my birthday last year. Really going to try and finish it before my next birthday)

block2