Welcome to our Caring Bridge website. We are using it to keep family, friends and well-wishers updated in one place. We appreciate your support and words of hope and encouragement, should you wish to leave a message, but of course this isn't necessary. Thank you for visiting.
In December 2020, Juliet applied to become a living kidney donor as someone she knew needed a kidney. Her first hospital appointment involved taking some blood samples. That night there was a phone call from a doctor asking if she felt well. "Yes" said Juliet, privately thinking that her blood samples must have been mixed up with someone else's! Juliet was asked to return to the hospital for further tests without delay. The blood samples were not a mistake and she's been diagnosed as having Acute Myeloid Leukaemia. This rare type of blood cancer appears suddenly and is aggressive.
Her first round of chemo began New Year's Day 2021 and she responded well to the treatment - to the point of being discharged earlier than anticipated in May. She even returned to, working part time on some great outdoor projects.
In January 2022, Juliet relapsed. She went back for more chemotherapy - a different regime and the intention was to have a stem cell transplant. Unfortunately, the chemo was not particularly effective, several bowel infections and complications set in, and after much heartache and soul-searching, she made the difficult decision not to proceed with the transplant. Instead, she received three more rounds of chemotherapy on a different combination of drugs. This did put Juliet briefly into remission but her blood counts never recovered. At the end of November 2022, a bone marrow biopsy showed the cancer was back. No more treatment was suitable and Juliet is now on "supportive care". This means at some point she will die - either from the leukaemia or from an infection. What has been amazing is that Juliet has outlived the original prognosis of a few months. No-one is sure how or why this has happened.
How can you help?
In this situation, it’s difficult to tread the balance between offering help, not wanting to interfere, and being able to provide support in some way. Below are some ways of doing this:
1. Leave a comment. You can do this in the comments below each journal entry or in the “tributes” section. The comments which you put on this website have been very much appreciated, not just by Juliet but by her family too. By leaving a comment here, it is easier to collate them (we can pdf the site), thank people and not worry about a lost card, accessing social media, wondering where Juliet keeps her address book or email access. This site is the preferred place for leaving messages. Thank you so much.
2. The website is slightly confusing but if you ever want to upload a photo, then the "Well Wishes" section seems to be the easiest.
3. If you would rather leave a private message, then this is the email address to use: email@example.com (mailto:firstname.lastname@example.org) Juliet’s sisters monitor this.
4. Try to avoid messaging or emailing Juliet about her health. She can’t manage the volume of well-meaning enquiries. Precious time is lost answering such messages. Her default answer to "How are you?" is "As well as can be expected" or "Absolutely fantastic thanks - and you?". If you have signed up to receive updates, you will know promptly what's up. Before then, assume no news is good news.
5. Help spread the word, so that if people want to comment they have the opportunity to do so. Tell them about this Caring Bridge page. Scroll down to the bottom of each journal and there’s a “share” button! Over 3 years on and still there are people who don't know Juliet is ill - time passes and again our ability to keep all updated is limited.
6. Keep giving Juliet suggestions of music to listen to, poems or books to read, films or series or programmes to watch. One of the best ways to deal with any crass situation is humour. And we humans do this in bucketloads. You can be humorous if you want!
7. Give blood. Every donation prolongs or saves up to 3 lives. Find out more and register to donate blood with the NHS (https://www.blood.co.uk/
8. Join a stem cell register in your country. Here in the UK it’s mainly DKMS (https://www.dkms.org.uk/en
) for people aged 17-55yrs or Anthony Nolan (https://www.anthonynolan.org/
) Trust for young people aged 16-30yrs. If you are feeling particularly politically driven, then contact your MSP and MP and ask why joining a stem cell transplant is not given greater emphasis by the Scottish Government and National Government. Millions more people are needed on the world-wide registers. Whilst legislation is complex to create, it is curious that unlike organ donation in Scotland, you still have to sign up. It’s an opt-in not an opt-out.
9. Know the signs of a blood cancer (https://bloodcancer.org.uk/understanding-blood-cancer/blood-cancer-signs-symptoms/
). Acute Myeloid Leukaemia is one of many different blood cancers but there’s some common signs.
10. Consider becoming a Living Kidney Donor (https://www.organdonationscotland.org/living-donation
). This is no small undertaking but to find out more click on the link. There is a shortage of donors, because you have to be medically fit.
11. Ride a motorbike? You can volunteer to be be a blood biker through National Association of Blood Bikes (https://www.bloodbikes.org.uk/
). This saves the NHS money on transporting blood. I believe some of the local associations also have a suite of cars.
12. Fundraise or donate to a relevant charity. There’s loads out there so you can find one that matches your values.
Many thanks and as usual, a big hug and lots of love from Juliet. Xxx