Monday, November 25, 2013

Giving Thanks

"Ah there's yer wan again going on about her hospital appointment - JEEZ enough with it!"

Now I can understand people saying that about my Twitter and Facebook posts - another hospital visit post = YAWN!

I don't blame you, any of you for saying that, for thinking that because the reality is that I do post about my hospital visits a lot and that's for the simple reason that I am in hospital a lot.

I am under the care of the Renal Team and the Haematology Team in Tallaght Hospital and I also see a Dietician from time to time - being sick is almost a full time job, but I already have a full time job and loads of interesting hobbies so at times, it's hard to find the time to be sick.

Those of you who know me, know that I was diagnosed with Myeloma in January 2007. Myeloma is an incurable cancer of the bone marrow.

I am kept on a very short leash by the hospital - kidney clinic every six months and haematology every two months without fail. There are sometimes in between visits for issues and minor complications. I have lost count of the number of times I have been an out patient and inpatient.

A friend said recently that when she told a work colleague about all my hospital appointments, the colleague said: 'That's like a death sentence". A wee bit insensitive you might say but sometimes people say and do strange things when they learn of your illness and circumstances.

For me, it's a very small price to pay for being well.

So the reason for my post is that I recently had a scare when some proteins were found in a sample I gave at the renal clinic. Proteins are the villains in my Myeloma story - they are like the Lex Luther or the Joker to my Myeloma Superman or Batman! They are sooooooooo not good. The renal team admitted to me that they were being super cautious but at the same time proteins are proteins and so I was called in for a repeat test.

I  had to wait for a week for the results. Needless to say during that week every possible worst case scenario went through my mind. The Myeloma is on the march again and I will get the news just in time for my birthday and Christmas. Lovely!

  • What if I have to be in hospital for Christmas - away from Bryan and the kids? 
  • What if I have to have another Stem Cell Transplant? 
  • What if I don't respond?
  • What if there are complications and I can't have new treatment? 
  • What if.......? 

Myeloma is a dead weight that I carry around all the time and the what ifs are there all the time but in the last week they were magnified and in High Definition just sitting there in front of me.

Since my diagnosis and treatment in 2007, I have really gotten my life back and my diary is full of wonderful stuff. In the next month I am going to turn 45, I am going to be a judge for the new Oliver in the local Musical Society, I have Christmas parties and dinners, I have Santa stuff to do, I get to be a radio head twice a week now in KFM the local radio station where I get to interview so many wonderful people. I have plans in my diary all the way through to next Spring at this stage and the idea that the Myeloma might have come back means that all of these plans might have to get scrubbed out.

These plans are great to have but they all pale in insignificance when it comes down to it and what it would mean for my family. I don't want to be the Mom who is sick [AGAIN], too weak to walk up stairs, too weak to drive, too sick to get out of bed, so sick I have to be in isolation for a month in hospital and I don't want to be a sickly wife who places the burden of care and work onto my husband. It's unfair.

I had imagined the worst - that's what we do, that's what I do. I was preparing myself for the absolute worst case scenario. In a way I am constantly preparing myself for THE worst case scenario because it will be the case someday. I just don't want that SOMEDAY to be any day soon as I have so much left to do.

I have so much life to live and I have so much of my kids lives that I want to be here for. We have great plans for our retirement, Bryan and I, and I want to be around to be an outrageous old dear who wears purple and dyes her hair!

I was very relieved to get the news last week that the proteins are behaving themselves. It must have been a blip or something on the particular test. If only the people in the labs knew what these blips do to patients like me!

Thankfully I am still in remission. I have made it through another year of living with Myeloma. I missed some of my targets - I had planned to get through the year with no admission to hospital but that didn't happen thanks to a serious infection in March. But it's another year notched up. 7 years and counting......

I can look forward to my 45th birthday on November 29th, to Christmas at home with the family, to our 18th wedding anniversary on December 29th and to a New Year of great plans and resolutions.

I have a lot to be thankful for and I don't take any of the time I have for granted. I don't take the wonderful moments everyday for granted, the little things, the memories made are all so precious. That's a gift that serious illness gives ......... every cloud and all that .......

So next time you see me posting about yet another hospital visit, perhaps you will understand the significance for me of getting through each and everyone of these visits with a clean bill of health.


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