Chapter 31 – Nothing is ever normal or ordinary again

No one’s life is ordinary. We’re all the heroes and heroines, with fate or flaws to bear. – Maeve Binchy

Nothing is ever normal or ordinary again after a diagnosis of cancer. While I went back to life and back to work, nothing has ever been quite as normal or ordinary as it was BC (before cancer).

You could say that being normal or ordinary is boring. And they are. But there are days when I would give everything I have just to be normally and ordinarily healthy.

Because of what cancer and then the treatment does to the immune system, it is never the same again. A common cold is never that common with me. A minor infection is never just that minor with me. Something more than a cold or an infection is so much bigger and more serious with me.

I have lost count of the times I have had to be admitted to hospital for ‘minor infections’. I have lost count of the times I drove myself in for a check-up, only to find myself admitted to hospital and having to go through all sorts of hoops and loops to get kids collected and the car taken home.

Normal is boring and I have had to come to terms with the fact that I will never have a normal response to any health issue again.

I can’t have anything done without checking with specialists first. I can’t go to the dentist without antibiotics cover. I can’t have a normal appendix operation like everyone else because the infection spread quickly and a one hour surgery became a five hour surgery.

I can’t have any part of me looked after in isolation – the team must know everything.

So that’s no big deal really! It’s not. But what is a big deal for me is worrying that I will go into hospital for a minor procedure, a minor infection, and just not come out again. It has happened to Myeloma patients that I knew…… that I knew….. past-tense. They are past-tense as they did not make it.

It’s hard to deal with this hanging over me. I have to be careful. I have to report in and consult as soon as something feels strange. I have been admitted to hospital with shingles because they were worried about the adverse effects on my organs. I have been admitted to hospital for a wheeze because they were afraid it was becoming pneumonia.

I have been admitted to hospital on day one of a family holiday and the plans have had to be cancelled. I have missed poetry readings by my talented daughter because I have been in hospital. I have missed school stuff with both kids because I have been fine one minute and in hospital the next. We can’t plan long term anymore as we never know how I will be. I hate that I have been ‘sick’ for 10 years out of my son’s 12 years. I hate that I have been ‘sick’ for 10 years out of my daughter’s 19 years. It’s tough on them. I hate saying no to things because I am in pain, or lacking energy.

When I get sick, I go from fine to really sick in a matter of hours. I hate the worry I see in their eyes when this happens.

Most days I get on with it and deal with it. Some days I don’t have the energy to just get on with it and to deal with something else. But I always do.

I know that these bumps in the road are a small price to pay for being mostly well and I am grateful for that.

But sometimes I would just love a streak of being normal and being well that lasts longer than a few months. I would love to plan a family holiday that is two year’s away. I would love to be able to be all the things that healthy Mums are. I would love to be fit enough to do all the things that healthy Mums can do.

Health is a crown worn by those who are well and seen only by those who are sick. I would love my crown back. I would even settle for a tiara of health at this stage.

Brenda xxxxx

 

 

 

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Musings – Blood Cancer Awareness Month

September is Blood Cancer Awareness Month. Personally, I am all too aware of blood cancer and the impact it can have on a life, on a family.

However, there is a campaign with a hashtag to #MakeBloodCancerVisible. We are being asked to share our stories of living with blood cancer. Myeloma, my cancer, is classed as a blood cancer. About 222 people are diagnosed with it in Ireland each year. It does not feature in the most common cancers affecting men and women here in Ireland. It is classed as a rare cancer. The difficult with being diagnosed with a rare cancer is that there is very little out there on the cancer, very little other experiences to draw on, very few if any celebrities involved with the cancer and no fundraising on a grand scale.

My story is available here for anyone to read. I hope it has helped someone newly diagnosed with this rare cancer.

You can also read some stories about people living with Myeloma and other forms of blood cancer here.

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The Irish Cancer Society is a great source of information. You can check them out on www.cancer.ie.

On September 27, Blood Cancer Awareness Month culminates with the first European Blood Cancer Policy Summit organized by Janssen and the European Centre for International Political Economy (ECIPE). A distinct lack of awareness means that blood cancer is not prioritised at the EU level or by many national governments. This is resulting in severe gaps in healthcare delivery, such as delayed diagnosis or misdiagnosis, inadequate access to new, innovative treatments and proper care for the people who need it the most. Working together with ECIPE, Janssen hopes to start shaping that debate.

I for one welcome this news. I would hate to think that resources are not being put into research into a cure for Myeloma, because of a lack of awareness about the disease. Those of us living with Myeloma deserve attention, resources, and even a cure.

Please consider sharing my blog post and spreading the word about my rare cancer.

Oh and if you are eligible to give blood or any type of blood products, then please do.

Brenda xx