Tags
cancer, daughter, diagnosis, five year, left arm bias., spleen, three year
Hi guys, after two or so months of radio silence I am now back to updating this. Not least because yesterday was my three year anniversary… That’s right, three years since I was diagnosed.
It’s pretty odd to think of what has happened in that time. Just before I got diagnosed we achieved our goal of going to all the continents. Then I self published a book, we moved to witham, had Grace, and really now have no time for anything else.
Having a child has changed my perspective on things, as has being on watch and wait for three years. In terms of the cancer, it’s become less visceral, less raw. I have come to accept that I have it, and only feel sad if i dwell on it. My checks go by, with a raised white cell count each time, but without treatment.
I have occasional spikes, like after a recent stag do I had some pains in my stomach, which turned out to be using muscles I often didn’t at an aqua park (luckily I guessed this) but that has dissipated.
I was also turned down for life insurance recently. I wasn’t sure what I expected, some massive amount of money per month, opposed to an outright refusal, but I guess I’m too high risk, something people have been saying for years. Still it does hit home a little bit in cases like that.
Conversely having a baby has made some aspects of having cancer more real. Jo and I have had more than one discussion which became maudlin, when we talked about what she would do when she was grown up, or how I would torment her first partners (of either gender). In times like that I do feel sad, worrying that I will die before she can remember me, or I won’t be there to guide her. She is only eleven weeks but I have thoroughly enjoyed that time and want to have more, to watch her grow and develop.you take a responsibility on yourself by having children, and I have more than one friend on facebook who celebrates a deceased parent every year. It looks tough, and I don’t want that for my daughter.
That’s when I can take solace in the fact it’s been three years with no treatment. I’m hoping I have another ten or fifteen before I even have to have chemo for the first time. Also, unless it grows or becomes an issue, I still have my spleen, when three years ago we had a debate as to whether it should be taken out.
All in all I’m pretty positive about things. Live for the now, enjoy spending time with my family and doing what I enjoy. If you take these things year by year, opposed to in blocks, it makes life a little less maudlin and a good deal more palatable.
So anyway that’s my three year anniversary. As they judge everything in five and ten year blocks (with a left and right arm bias, thanks Aaron) if i can get two more without treatment that will be a good start, and let’s see where we go from there π
Hi there , Glad to hear the good news , have you had any treatment in the last 3 years?
Best wishes
Sam
No, Just been on watch and wait, so hopefully I’ll be good for another few years yet π
Hi. Just wanted to say a huge thank you to you for your blog. A friend of mine was diagnosed with SMZL last autumn & it’s been really useful for family & friends to read your blog. Out of interest he had his spleen removed (Feb) & is now in remission so if ever you want to contact him to find out how it was for him he’d be happy to return the favour & give you any info he can. You mentioned in 1 of your posts that you’d got decent travel insurance. Could you tell us which company please? It’s quite a headache finding travel insurance at the best of times :-). Wishing you and your family all the very best and a very very long time on the ‘watch and wait’ list!
Glad it helped James, nice to have positive feedback :). The company o used was called millstream travel, if you can’t find more reply back and I’ll send you the details. Glad all is going well π
Hi. Congrats on 3 years with no treatment! And congratulations on your beautiful daughter – such a blessing. My mother was diagnosed with SMZL in November of 2014. She had both Chemo and Rituxan and has been in remission since May 2015. I honestly knew nothing about what she had for a while and recently started doing more research to learn more about SMZL. I think I am finally admitting I was afraid to know or find things I didn’t want to see online. Further, I found out I pregnant with my son around the same time my mother was diagnosed which distracted me from the fact that my mother had cancer for a second time (she is a breast-cancer survivor of 10 years). We are waiting to hear results from a recent biopsy of a small mass she found under her armpit. This led me to do more research and learn more about SMZL. I did not realize how rare this type of cancer is. I would love to talk to other people in similar cases for support and to learn more about SMZL. I am so happy I found this blog to follow you in your journey π
Hello,
Happy 3 years with no treatment and congrats on your daughter! My mother is currently in remission from SMZL. My research journey began a few weeks ago on this type of cancer and I came across your blog. I am interested in speaking with other’s with this type of cancer since it is so rare. I am trying to learn as much as I can about it. If you happen to have any sites, articles, books, own knowledge, etc that you can pass alone regarding SMZL that would be greatly appreciated! I enjoy reading your blog!
Erica
Hi Erica,
Thanks for this. I’ve been busy, so have been a bit slow to respond to my blog. thank you for the comments though, and apologies I missed the first one! If you want to chat I’m happy to do so. I have done so with other people and I think they have found it quite useful. The blog has got quite a lot in it about the condition, but I must admit it has got somewhat more personal focused of late. if you look back in the archives I give more info on it all.
Otherwise I’m due to do a serious post about it, and will try to do so later this week.
Thanks again for the message,
Marcus
Hi Marcus,
Thanks for the reply. My apologies for the multiple messages. I didn’t see my messages showing up at first and wasn’t sure if they were posting. I will definitely take a look at your older posts. Would love to chat since I have only come across very few people who also live with SMZL. Do you prefer via email? Whatever works best for you I am okay with. My email is ericaleigh1226@aol.com.
I look forward to speaking with you!
Erica