F2F: May blocks and virtual quilt

Pat1fromEmmely

You now probably think I’ve gone crazy in the head as I seem to have skipped January through April. The reality is a much sadder story.

Pat2fomEmmelyPat, who would originally have received her blocks in May was diagnosed with ovarian cancer prior to the start of the F2F swap. She still wanted to participate because it gave her a goal and something to look forward to. Unfortunately, her condition has recently deteriorated rather quickly and it is very likely that she will not make it till May.

Pat3fromEmmelyWhen we found out it was quickly decided that the swap would be rearranged immediately. So last week everyone dropped whatever they were doing and quickly made up some blocks in tan and teal (the colour of the Ovarian cancer awareness ribbon) and shipped them off to Sue.

Pat4fromEmmelyI made 5 blocks since Pat can no longer make her blocks and 36 blocks are needed to complete the quilt top. In a frantic sewing session I completed 3 and ¾ block in a single evening and completed the 4th and 5th the next morning. Pictures were taken in just minutes and the blocks were shoved into an envelope before I rushed off to work. Let’s just say it’s a good thing my job doesn’t require me to clock in at a specific time.

Pat5fromEmmelySue will do the piecing and binding of the quilt top and the quilting will be done by her son who has a longarm business. Hopefully, Pat will receive her quilt in time to enjoy it for a little while. Eventually it will most likely be donated to the Ovarian Quilt Project where it will be auctioned to raise money to educate the public about the risk factors and symptoms of ovarian cancer. Since it takes some time for the blocks to reach Sue and the piecing and quilting will then take some more time, Kate already made a virtual quilt from all the pictures that we took of our blocks.

Pat's Virtual Quilt

Because I’m a scientist and therefore like facts and numbers I looked up some information about ovarian cancer. In the Netherlands around 1200 women are diagnosed with ovarian cancer annually. Most women are diagnosed when they are 55-80 years old, but it can also affect much younger women. Especially women that carry mutations in the BRCA1 and BRCA2 genes have an increased risk of ovarian cancer and are advised to have their ovaries removed when they are 35-45 years old as a preventive measure. You may already have heard of BRCA1 and BRCA2 before because mutations in these genes also increase the risk of breast cancer.

One of the nasty things about ovarian cancer is that it can remain undetected for a very long time as the disease is usually asymptomatic in the early stages. When symptoms finally develop they are usually vague and could also have many other causes. Symptoms include a bloated feeling, feeling full or difficulty eating, nausea, pelvic or abdominal pain, frequent urination and severe constipation.

I got my information from kanker.nl (a Dutch platform where patients can find information about cancer and interact with other patients to share experiences) and the website of the Dutch cancer institute (both websites are in Dutch).

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15 comments on “F2F: May blocks and virtual quilt

  1. katechiconi says:

    Great post! I hadn’t realised quite what a sewing marathon it had been for you, and what a speed you worked at! Thank you for posting the ovarian cancer information and symptoms too, I hope it helps someone decide it’s time to see the doctor if they were hesitating.

  2. tialys says:

    Lovely blocks Emmely. I think Angelina Jolie had the right idea but I wonder what would be involved in getting tested to see if you were a carrier of the gene. I don’t suppose it would be as simple as turning up at the Doctor’s surgery and asking for the test would it?

    • Emmely says:

      No, I don’t think it would be that simple and it might also depend on the country what the exact policies are. I studied medicine for a couple of years but never became a doctor. However, I do still remember some stuff. I believe the policy here is that women who are diagnosed with e.g. breast cancer are asked about cancer in their family. If there are some indications that the cancer might be familial, genetic tests will be done. E.g. when there are several women from the same family that all developed breast or ovarian cancer at a young age (in their thirties or forties) or there are men in the family that had breast cancer (yes, that is certainly possible!) that is a very strong indication that something is going on in this family and would warrant testing. If something comes up, people are supposed to inform their family so they can get tested as well and take preventive measures if they want to. If you know there are several women in your family with a cancer history and no testing has yet been done I think you could go to a doctor to ask whether it would make sense to get it tested. It then really depends on how many people in your family are affected and at what age they were diagnosed whether a test will be done.
      For myself I don’t think testing for these genes would make sense. I can’t think of any woman in my family who was diagnosed with breast or ovarian cancer so the chances of me having these mutations are very slim and any doctor would say (righfully so, by the way) that it is not necessary to do a genetic test.

      • katechiconi says:

        Age at diagnosis is the determining factor, I’ve found, in whether you’ll get tested. I have 5 female relatives in the maternal line who all had breast cancer, in addition to myself. However, since they and I were all over 50 at the time of diagnosis, my genetic counsellor said that it was not the BRCA1 or 2 kind of cancer which is more aggressive and attacks at a younger age and is linked to ovarian cancer.

      • Emmely says:

        Yes, age is very important with these genes. I think it could still be a familial form though in your case since it’s so many women, but if it is an unknown mutation they may not find anything even if they do some testing.

      • Emmely says:

        And I just remembered something else. If a woman gets breastcancer in both breasts or when multiple tumours are found in one breast it can also be an indication that these genes are relevant since that is otherwise quite rare.

      • katechiconi says:

        So, Tante Joke, who had it bilaterally, adds to the genetic burden, as does my great grandmother, who was an Ashkenazi Jew and also died of it. They know all that here, but still won’t test… :-(

      • Emmely says:

        I’ve looked into it a bit more and apparently if it’s bilateral the first tumour has to be identified before the age of 50 as well. This <50 criterium seems pretty strict here as well. These are the criteria for genetic testing for the BRCA genes in the Netherlands: http://brca.nl/sites/default/files/Borstzakkaartje.pdf

      • katechiconi says:

        Thank you for following that up. I shall carry on crossing my fingers ….

  3. Deborah says:

    I had read about Pat’s diagnosis on another F2F blog, and I’m so impressed with the way you are all rallying around to work on this quilt for Pat. Your blocks are wonderful, and it’s fun to pick them out on the virtual quilt.

    My sister in law was diagnosed with ovarian cancer in her 40s. She was lucky in that it was found early, but then it recurred and moved to her lung, resulting in another surgery. She now has to be tested every 3 months and will likely have more chemo and radiation as it rears its nasty head again. That’s the main reason my husband is in Iowa right now (while I’m in Michigan). We are waiting on the results of her check up last week, and if things are stable, Dave will come to Michigan in early February.

    As for the genetic stuff, my mother and sister were both diagnosed with breast cancer about six years ago. They were diagnosed within weeks of each other. Of course, my mother was very concerned about me, and I was in Taiwan at the time. But I went right in and saw an oncologist and was screened. He was very compassionate and assured me that my test results looked good. We didn’t check for the gene, but I continue to do my mammograms, and I’ve been fortunate so far.

    The group’s intention to use the quilt to raise awareness is amazing. Even though I am not participating directly, I am happy to know so many wonderful people who are involved in this work.

    • Emmely says:

      Cancer is a nasty beast and I can imagine you got quite a scare with two close family members diagnosed in such a short time frame. I hope they are both doing well now and that your sister in law gets some good results soon.

  4. Emmely, prachtig geschreven! Vol gevoel en informatie!
    Dank je,
    Esther

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