Anthony Abel
Posted by

Living alone with MDS

Anthony Abel
Posted by
03 Mar 2015

I was diagnosed with RAEB2 in late November.

I was absolutely shattered by my diagnosis and I no longer have much confidence in my GP who was treating my more or less continuous sinus infections, which I had for nearly 2years with continued doses of antibiotics to no effect.

I was experiencing nosebleeds and bruising. I had a full blood count which one of the other doctors in the practice advised me that I had a bone marrow problem. When I saw my own GP about this he said it was nothing to be concerned about.

Unhappy with this conflict I paid to see an ENT consultant who immediately referred me to a senior haematologist and the correct diagnosis was made.

I understand it is incurable and am now undergoing chemotherapy at my local hospital, my third cycle starts next week. I am being treated with Azacitidine for seven days in every 28. Fortunately I do not have any adverse side effects from this.

I have no pain and feel fit and well, but I feel that my life has hit the buffers.

Comments

04.03.2015

Hi Anthony,

Thanks so much for getting in touch and being so open and honest about your experiences. Diagnosis is a very tricky time for patients with so much to take on board and get your head around. It can be a very isolating experience, too, but the important thing to appreciate is that you're not alone and that support is out there for you if you feel that you need it. 

We've got lots of information about MDS in the Patient Information section of the site including a pamphlet that you can download which is a good starting point: https://leukaemialymphomaresearch.org.uk/information/other-blood-cancers...

We also have blogs from others who have been diagnosed with MDS in our Patient Experiences section which you might also find useful - do feel free to take a browse and don't be afraid to ask questions or advice from them. We're a community and are all in this together. 

On our part we're doing everything we can to beat blood cancer and will not stop until that's the case. I'm glad that you're treatment is not giving you any side effects but can totally understand how you feel that your life has hit the buffers especially in light of your current prognosis. Again, support is out there if you need it and we're here to help in any way that we can. Stay in touch and never give up hope.

 

04.03.2015

Thanks for your  encouragement Andy, I'm  determined not to give up and fight 

on. I refuse to think of myself as an invalid either.

kind regards 

Anthony

Anonymous
18.03.2015

I think I can sympathise- I got diagnosed with MDS but mine had progressed so fast that I went almost immediately ( or as 'immediate' as you can!) to transplant. Five years on and 3 bone marrow transplants I am a picture of health! Roll on Reading Half Marathon on Sunday!

Anonymous
19.03.2015

Hi Anthony,

that word 'incurable' sounds so scary, but all it means is that the disease can never be 100% eradicated. The good news is that treatments are getting less intrusive and remission is getting longer than ever. My husband has CLL and since his chemo is in full remission and feeling much better than he was before diagnosis. Well done for persisting in getting the right diagnosis, and well done for starting your blog. I'll follow it with interest.

19.03.2015

That's the spirit Anthony! You're not alone in any of this as the other comments show. We also put your story out on Facebook yesterday to our patient community and that attracted a fantastic response with lots of lovely messages of support which you might be interested in taking a look at. Here's the link: https://www.facebook.com/beatingbloodcancers

Keep us updated on your pogress and do let us know if there's anything more we can do to help you.

19.03.2015

Hi Russell,

Absolutely fantastic to hear that you're doing so well post transplant! Good luck with the Reading Half at the weekend - do you have a time in mind?

Anonymous
19.03.2015

My husband has the same disease and has completed the first round of vidaza It has been a rough winter but he is feeling a bit more positive as Spring approaches.

19.03.2015

Hi Anthony,

I also left a message on the facebook page but wanted to reiterate it here - please dont ever feel like you are on your own on this journey because we are all here for you & completely understand the rollercoaster of emotions that you are currently going through. I personally have benefitted greatly from psychological support since that is available via my heath board but my "beef" is that it is not routinely available for all cancer patients. I regularly blog here about the psychological, physical & emotional impact of my cancer & find that in sharing my own experiences, others help me to rationalise what is going on by advising me from their own personal experiences & would like to offer any support that I can give. Good luck & please keep us updated & the offer of support is always there.

With very best wishes

Kate x

Anonymous
19.03.2015

Dear Anthony

Getting a diagnosis like this must be shattering - sending you positive thoughts and well wishes x

Anonymous
19.03.2015

Thank you all for your support.
I am not a member of Facebook anymore. Some years ago when I was in good health I did join, but as Facebook gets access to all your email contacts I unsubscribed. The reason for this was I was getting all sorts of silly and unwanted messages from people I barely knew.
I will continue with the blog though.

Anonymous
19.03.2015

Hello Anthony
Wishing you all the best with your treatment, I had Hodgkins Lymphoma 3 times, I've been clear now for 16 years, keep going and stay positive, I know sometimes it easier said than done but there are people who are always there for you.

Best Wishes