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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Here's Another Story

Hi, I am Renate and in 2009, aged 48, totally out of the blue I discovered a swollen lymph gland in my neck which soon was diagnosed as Burkitt’s lymphoma. The Doctors were puzzled as I am neither male, not HIV positive, nor a young African child who usually get this type of blood cancer. I had 3 months intensive chemotherapy as an in-patient which made me feel very ill, but I survived and got better. 5 months later I went back to work; I am a Yoga teacher and tutor co-ordinator in a busy central London adult education college. Soon after, aches and pains in various joints started up and nothing helped (I later found out this was due to those huge immature white blood cells getting stuck in the joints), neither allopathy nor alternative treatments; I was told by my GP, that it was due to the chemo and I had to live with it and would I consider choosing a different job, may be?
Months later I slowly began feeling more and more unwell, but by then I was on 4 monthly check-ups. I went travelling a bit and I had some premonitions. In Mallorca, if let very strongly that I would never see a Mediterranean country again and I visited my mother in Germany, who gifted me a night shirt and my first thought was, I can wear that in hospital! I ignored both my body’s deterioration and my mental weird feelings, but after the next blood test I was immediately whisked into hospital for investigations as my blood was rather abnormal, I remember the red blood count being just 6. After a couple of bone marrow biopsies I was diagnosed with AML caused by the chemotherapy of my first cancer. Apparently it happens very rarely, but I got it. I considered giving up as the inpatient treatment sounded horrendous, but the Doctors said I would have had only a couple of weeks left to live. I had only gotten married again in 2008 and my beloved husband helped me to make the decision of working towards surviving yet another rather vicious cancer one more time. I had my 2 induction chemotherapies; the first one was harder than the second and it was suggested that my sister in Germany should be tested for a potential stem cell donor. She agreed and turned out to be a full match, the next tests however proved that she did not weigh enough to be a donor. The British Doctors would have liked her to come over for further testing, but she refused. Well, we are not on very good terms now.
After that failure, I was told I needed an extra round of chemotherapy so that they could look for an unrelated donor. So, I had an additional 35 days in hospital. I was lucky and they found 2 good matches, but 2 weeks before the event, the donor, they had decided upon, had an accident and was no longer available; I waited 2 weeks while they got the other one ready who changed his or her mind a few days before the date. So, I was sent back into hospital for yet another 35 day round of chemo, while they started the donor search from scratch. I was lucky again and this donor followed through. I had all sort of problems by then with the extra chemotherapies, but after 4.5 month additional waiting and treatments since the 2nd induction, I had the transplant and the famous 100 days began; they let me go home after only 2 weeks, but I was so ill for so long. I had twice weekly hospital check ups to begin with, a taxi picking me due to the neutropenia. I am so grateful to the national health system which paid for everything, to my employer who paid me a full salary for 8 months and to the state which looked after me until I returned to work 6 months after Day 0. I am so grateful to my family’s support and I could not have done it without them and of course to my unknown donor, a young woman form Germany who I hope to connect with when the 2 years will up this May.
I am now over 21 months post transplant and feel quite well; not like before the cancers, but I was well enough to walk 5 days on a pilgrimage to Santiago di Compostela in Spain 115 km last May. I have gone back to work part time, teaching Yoga and being a Tutor Coordinator in Adult education and I have also started to volunteer for Anthony Nolan. I have just come back from spending one month in New Zealand, travelling around in camper van; yes, I took the chance to travel without any health insurance, but I will not put my life on hold while I can and I focus on living NOW.
I no longer take it for granted that living a healthy lifestyle, being vegetarian, non-smoking, low alcohol intake and all that Yoga and mediation would keep me healthy until my 90’s. I no longer look down at obese smokers and thinking they may never get as ill as I was and that there are probably many diseases which cannot be prevented by healthy living. I make sure I get enjoyment out of every day I am blessed with, reminding myself to be grateful even for the miserable, tired and cold moments of life as it is sure a great blessing to be still around and watch my kids grow into wonderful young adults.

Comments

  • Rebate,
    You mention no travel insurance. Well there are travel insurance companies out there who will insure us. I started off cruising with exclusions from insurance only to read the small print that stated you had to have inclusive travel insurance, bit more expensive but not too bad.
    I'm in Dubai at mo for 2 weeks, insured through Holiday Safe - wwww.infinity insurance.co.uk £25.16.
    Ok so I'm further out than you but even so!
    The insurance co were more interested in my AML & the side effects of the shingles than the STC!
    I think Macmillan can give you a list of insurance companies.
    Happy travelling,
  • Thank you for the info.That Holiday safe sounds good.. I'll check it out. I am still travelling without insurance, willing to take the risk. It's alright in Europe with the EHIC and decided not to worry about it in the States. having lived through this experience made me worry less about some things (and more about other! no rhyme or reason!)
  • So glad to hear that you are back to having a good life after all you have been through.
    You must be very strong,mentally,to be able to keep going through all that.Manys a person would have crumbled.
    Hope you have many more years of a healthy,happy life,you deserve it!
  • I went to Germany last week and met my donor, a young woman who lives 2 hours away from my Mum in Baden Wuertenberg. I had expected it to be more emotional, but she kept me at an arm's length, which is ok. From the emails we exchanged I realized that she did not want to be overwhelmed by my huge gratitude or think about cancer and dying. She is pregnant and will get married soon so her outlook is on happy events in the not too distant future. It was a very special experience.
  • Renate
    I met my donor last weeks too and have put a post on the Off Topic category.

    Like you say it was a special experience and for me it was something I wanted to do and was pleased I did it.

    Peter
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