This month is blood cancer awareness month. My steep learning curve about my rare blood cancer began. In the late ‘90s. I had had abnormal blood results going as far back as the ‘80s but it was not a clear picture. I didn’t know much about blood cancer before being told I had it. Could you name some of the most common blood cancer signs and symptoms? I’ll leave you some space to consider your answer. I’ll list the symptoms at the end of the blog.
Regular readers will know how tough I’ve found the pandemic. I started shielding even before lock down as our haematology teams were becoming concerned about the new emerging virus. This meant I was locked away from those I love and really felt the void of not hugging my kids and grandkids. When everyone else went back to “normal” I had to carry on shielding. I have an absolutely rubbish immune system and have been known to really crash when I have an infection. My fantastic medical team just told me to continue to be cautious. Summer was better as it meant I could see people outside. If I went any where I’ve had to continue to wear a mask and practice social distancing. Visitors indoors didn’t happen unless the windows could be open and I could sit apart from others. It just seemed to be an endless forced separation. I really didn’t like it.
I’m July I took a trip to Ireland. Despite all my precautions and help from Irish Ferries to keep me separate from other passengers, at some point I picked up covid. The first day I felt pretty awful. My chest was really painful. Once the specialist antivirals that extremely vulnerable people need were prescribed, I started to feel better. This was a 5 day course. I did a test and the treatment had worked and I was negative. Unfortunately after a couple of days my symptoms came back and I tested positive again.
Before I went to Ireland I had developed a tooth ache in late June early July. I saw my dentist and had a treatment plan worked out for when I got back. Sadly this had to be put on hold due to being covid positive. While I’m still testing positive the team at Kings have been seeing me weekly to keep an eye in case of any problems. They are so surprised that I hadn’t had covid before. My shielding was obviously good. It’s now mid September and I’m still testing positive. My lateral flow test has a very faint line now so going in the right direction. The PCR is still positive. I’m adding new meaning to the term “long covid”
One of the GOOD things about having had covid is that people can now relax. I’ve had it and it hasn’t killed me. Yes I have a few problems still from it but the BIG worry is gone. The other enormous benefit is this means I can now hug people. I’ve had to wait till this week where my lateral flow is hardly registering. I just wouldn’t want to possible infect anyone. My team told me it’s very likely that I’m not infectious to most people, it’s just my poor immune system having trouble shedding the virus.
It was so wonderful holding my grandchildren, daughter, sisters, brother and other family and friends. My daughter and granddaughter and me and Maggie all had tears in our eyes. It was such a beautiful moment and one that I will treasure forever and keep locked safely in my heart.
So moving forward, I will still be cautious. All my family and friends know not to get close to me if they think they have an infection. I will wear a mask in high risk areas but otherwise I’m looking forward to rejoining society.
All of this is because I was diagnosed with the rare blood cancer Myelo Dysplastic Syndrome in 2000. I had a Stem Cell Transplant in October 2016 and then went on to develop Graft Verses Host Disease. Before all this started I had no idea about these things. I was a fit young woman still playing football. So what were those symptoms I mentioned earlier that took me to see my GP?
Blood cancer symptoms include:
* Weight loss that is unexplained
* Bruising or bleeding that is unexplained
* Lumps or swellings
* Shortness of breath (breathlessness)
* Drenching night sweats
* Infections that are persistent, recurrent or severe
* Fever (38°C or above) that is unexplained
* Rash or itchy skin that is unexplained
* Pain in your bones, joints or abdomen (stomach area)
* Tiredness that doesn’t improve with rest or sleep (fatigue)
* Paleness (pallor)
How many did you get? Please do me a favour this blood cancer awareness month of sharing my blog or just copying and pasting these symptoms and making people aware that these things are pretty non descriptive and can be caused by so many things including stress, that’s why people ignore them. Don’t. If it is the worst, although unlikely, the earlier you know the better.
As for me I live a very different life to the one I imagined, but I’m still here and breathing. I have much joy and love in my life and I still have new adventures I’d like to go on. For that I’m extremely grateful to my little life saving sister Gail and my fantastic haematology team at Kings and all those who love and support me.
