Hello! New member here!

Welcome
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Hello all,

My name is George, I am from Greece, I am 29 years old and I live in London with my partner. In 2016, while I was in Greece, I started applying for my MSc in Civil Engineering. As I was waiting to see if I got accepted in the Universities I applied for, I had a few very painful migraines. I even got blind in one eye temporarily. I was admitted to the neurological clinic in Greece and ran all the tests (even an MRI) but everything seemed normal. My blood tests showed just a small drop in white cells and platelets but so small that everyone thought it might be some infection so they let me go. Then I was accepted for my postgraduate program and I moved to the UK. I was so excited that I was studying in a university abroad that I told my self “I am going to give 110% of myself”. And I did, for a couple of months.

I went to register to my GP for the first time and the surgery ran some blood tests. Then I was admitted to the Hematology clinic where they ran more tests and after a few months I did my bone marrow test. The results came after a month and I can tell you, I was shocked. Young MDS. No one would have known. I was like “No way, I feel fine, I run 15 mile marathons every year, I play Ice hockey, tennis, but I feel great, there is no way I have such a thing, why me?I am not even married yet, I dont have a proper job, I dont even have kids yet”. The treatment? of course a bone marrow transplant. I had no idea what a bone marrow transplant was before. Doctors explained everything, in such details I started having nightmares, me being bald from the chemotherapy, or getting my first round of chemotherapy,“how it is going to be? is it going to be painful?” and so so many other still unanswered questions came on my mind over the next days.

This of course affected my studies a lot, I had to run blood tests every 20 days. I couldn’t catch up with the courseworks, didnt make any friends, my partner worked in Ireland so I was facing it pretty much alone. The months passed by, I managed to get an Aegrotat award from the university because of my condition and then my partner got a job offer in London and we moved here together.

I am a low risk MDS at the moment with a 4% blasts, I have had two bone marrow tests ever since I came in the UK in 2016 and now I am waiting the results of my second bone marrow test. What has significantly changed, are my neutrophils.At first they were 1.4 with a white count of 2.500. Now the neutrophils have dropped to 0.55 while my platelets are steady at 70.000-80.000. The doctors dont want to risk doing a bone marrow transplant at the moment because I feel healthy and strong and I am pretty much fine, physically but in my last appointment the consultant said that if my neutrophils drop below 0.4 we might go for a transplant.
But young MDS is so rare they dont know when is the right time to do it. I have been given a prognosis of 5 years until it transforms into leukaimia. So for now I am beeing monitored every month or two with regular blood tests.

One other thing I wanted to mention is that I got rejected from two jobs because I told them I have a condition that needs to be monitored every month or two with some blood tests. And I respect that, who would want an employee that one day in the near future after their employment, to call and say “sorry I am sick I have to leave or I wont be able to work for a year”.Maybe I shouldn’t say anything about my condition and take a day off every month for my blood tests?Then I would be lying in the part of the contract where it says “tell us if you have any illnesses”. it is just I am still trying to figure out how to handle the whole situation. Anyway, lots and lots of other things.
I thought it would be a good opportunity now since I spend many hours in my home, to become a part of your community. Reading others posts about their post transplant experiences and how they overcame any obstacles they had just brings joy to my life and gives me courage to keep fighting. Thank you very much for accepting me!
(I am so sorry for the long post)
Best Regards,

George

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Hi George

Welcome to the forum. Sorry to hear about your diagnosis. I was diagnosed with Acute Myeloid Leukaemia and had to undergo chemotherapy and a stem cell transplant therefore I completely understand how overwhelming this kind of diagnosis is and the daunting prospect of chemo and a transplant.

As far as the transplant goes please feel free to ask any and every question you have. I personally felt forewarned is forearmed, I also found during my treatment that fellow patients offered the best and most honest support please do not hesitate to ask and voice any concerns.

I don’t know much with regards what support Anthony Nolan can offer with regards employment law advise. It might be worth giving them a call, they have numerous methods of offering support. On the Patients and Family page of their website there are several links to informative blogs, experiences etc. You may also be eligible for a grant to provide financial assistance should you need it. I know some of them cover employment so they may be able to give you some advice on how best to inform or not inform potential employers. Otherwise MacMillan Cancer Support can also provide advice and support and finally it could be worth speaking to the Citizens advise bureau with regards your rights. Good luck.

Please keep us informed as to how you are and feel free to ask further questions.

Rachel

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Hi George and welcome to the forum. Rachel and me are community champions here and it’s good to see new members post about their experiences. It helps other members that are in a similar situation if they can see that someone else has had the experience they might be going through.

You’re right about the shock that a cancer diagnosis brings and we all think why me, how can this be happening to me. In your case you’re obviously young and fit and I can imagine how a diagnosis like you had is all the more shocking, but it just shows how indiscriminate cancer is, and how it can affect anyone, young or old.

I guess you are on a watch and wait list at the moment with regular monitoring to identify whether your condition worsens and progresses to Leukaemia which would then necessitate more aggressive treatment. Fingers crossed for you that doesn’t happen.

You raise an interesting point about the consequences of that which require regular blood tests and the impact that has on getting a job. You’re right to be honest with prospective employers when they ask about your medical status, but I’m not sure whether it is discriminatory that they won’t consider you for a job because of that. As Rachel suggests it’s worth seeking advice on that and the Anthony Nolan team, Macmillan, or perhaps Citizens Advice may be able to help and clarify the legal position. It’s certainly a difficult one as an employer could disguise the reason for not giving you a job with another reason when in fact they are nervous about your condition.

Perhaps if the only issue is having a few hours off once a month you can counter that by offering to make up the time across the rest of the month. Also, can you arrange appointments to be less disruptive to an employer. For example, for my blood tests, which are now only once a year, I can go on a Saturday to have my bloods done, so that when I have my review with the consultant a couple of days later to review the results I get the earliest appointment I can so that I only need a couple of hours off work and the impact is less on my employer. If you go for blood tests and your review the same day you can easily lose half a day or longer by having to wait for the results to be analysed.

I think there’s been a thread on this in the past with someone in a similar situation so if I can track it down I’ll post a link.

In the meantime please let us know how you get on and if you get some advice from the sources we’ve suggested or elsewhere, please let us know as I’m sure it would be really useful to others.

All the best,

Steve

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Hi George

Thanks for joining the forum, its great for you to share your experience. I am the lead nurse in the team and occasionally contribute. You will get lots of support from all the members on here which I am sure you will find helpful and less isolated.

The support that you can get from patient services includes patient info, blogs, videos, podcasts and grants which you can find here Patients and families | Anthony Nolan. You are also welcome to call me at anytime if you have a questions on 02072848229.

Specifically around employment, although you have not had a transplant we do have a booklet designed for both you and employers on going back to work after a transplant. This might have some information that you would find useful, especially around employment law. Also speak with citizens advice regarding your rights and equal access to employment.

I look forward to reading more of your posts

BW
Hayley

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Hi George,
I’ve just joined here as my husband has just been diagnosed with MDS and he is just waiting for a bone marrow transplant. I’m not going through it personally like my husband is but can emphasise as a loved one. I can understand how scared you are, me too, and I suppose you think why me when you were just having all these new opportunities. There’s no answer ! Just coming on here and sharing your worries and feelings may help you and people who have been through it all also will able to support you. I’m so sorry for you especially like you said, there is so much you want to do and not done yet. Let me know how you get on George
Much love and best wishes
Lindsaylou x