Hello - my MDS story so far

Moderator: Steering Committee

GeoffC
Posts: 8
Joined: 25 Nov 2014 20:49
Contact:

Hello - my MDS story so far

Postby GeoffC » 07 Dec 2014 09:57

Hi Everyone
Although I have been reading this forum for about 18 months, this is my first post.
I was diagnosed with MDS in June 2013 aged 59 and so entered the world of red cells, white cells, platelets and chromosome abnormalities that we all become familiar with.
I first went to my GP in April last year because of constant tiredness and I had some bruising with no apparent cause. Several blood tests later she got me an urgent referral to the haematology department at our local hospital. After more blood tests and two BMBs, I was given the news that I had MDS and handed the Leukaemia Care leaflet to help me understand what was wrong. I was told there was no treatment required then and to keep coming back for checks. It was about a month later that I took time off work sick to try to work out exactly what was going on with me and how I was going to deal with this. I then found the MDS UK Patient Support site and discovered this whole new world.
After three more checks locally at which all my readings were continuing to fall I asked my GP if she would refer me to a CoE for a second opinion. Within two weeks I was at the Christie in Manchester where everything was confirmed and where I now go every 8 weeks.
I think at first I was pretty down and “watch and wait” become “watch and worry”. But since I have been going to Manchester I have been reassured, mostly by the fact that they really care for you and that they understand how MDS affects people. Also when the time does come for some form of intervention, you know you are being treated by some of the leading specialists in their field.
I guess coping with the fatigue has been the most difficult thing so far. Particularly, as at first I was being told by health professionals that with a fairly reasonable red cell count I shouldn’t get so tired! Well I’m sorry I don’t care what the readings say, but I do and I am.
I have now learnt how to pace myself, saving energy where I can, so I can do the things I really want to.
I’ve been back at work now for 6 months without a day off sick since, and although I only work part-time, I’m pretty pleased with that.
I guess I have lots of other things to share, from my experiences of the last 18 months such as how to cope with Occupational health referrals, changing employers, agreeing reasonable adjustments and so on but I can put them in later posts.
For now, it’s time for me to put something back, having used this forum freely for 18 months. So I’m going to the Cancer52 event at the House of Commons hoping to raise awareness of MDS and push the “call to action”. I’ll let you know how we get on.

Best regards to all

Geoff C
Geoff C. Age 61. MDS diagnosed June 2013. Type - RCMD with del 20q. Red cells just below normal range, low white cells and platelets. No current treatment - active monitoring every 4 weeks. Lancashire.
“I’m not living with MDS, MDS is living with me!”
janbev
Posts: 25
Joined: 23 Dec 2013 13:18
Contact:

Re: Hello - my MDS story so far

Postby janbev » 08 Dec 2014 11:33

Hello Geoff,
My husband was diagnosed with MDS in July 2013 after 2 years of repeated visits to A&E with severe abdomen,chest, arm and neck pains,although sept. 2012 while in hospital in Crete the doctors there told us there was something very wrong with his blood tests it took til February 2013 for a junior doctor to note he was neutropenic and maybe should see Haematology. After diagnosis his next 3 appointments were 3 months apart then in March they decided 6 monthly appointments. Haematology do not believe his pains, fatigue, bruising, breathlessness etc are anything to do with MDS so have referred him back to cardiology (he had a heart attack Jan 2011). We asked our GP if he could refer us to a CofE or specialist but he thinks it better to ask the haematology consultant for the referral, so Bev is writing to her. He still works (when he can) 3 days a week but needs a day of rest to be able to do a day at work! We had booked to attend the parliamentary event but Bev has gone down with another infection and we have had to cancel as on past experience he is going to be too ill. I hope the event goes well.
Bev has red cells 10 to 12, low white cells, neutrophils and platelets - no treatment and very little monitoring Derby.

Best wishes
Janet
Janet N - Husband diagnosed with RCMD July 2013. On watch & wait. Low neutrophils, low white blood cells. At present on 6 monthly hospital check ups
GeoffC
Posts: 8
Joined: 25 Nov 2014 20:49
Contact:

Re: Hello - my MDS story so far

Postby GeoffC » 08 Dec 2014 20:51

Hi Janet

I've read some of your earlier posts and I know exactly how you both feel.
It must be very difficult with other conditions as well as MDS.
I knew there would be many MDS patients who wanted to attend the event this week but who just couldn't face the journey,which is why I have decided to go to London this week.
At this stage I think I can, but who knows?
The furthest I have travelled in 18 months is 50 miles to my appointments in Manchester.
A couple of years ago I didn't have to think twice about it, going to London was just part of my day's work.
I hope Bev can get to the CoE, probably the nearest to you is Nottingham. I'm sure you will find they will be very supportive.
Remember going to a CoE is a right, not just an option. Everyone can ask for a second referral and It's recommended in the treatment guidelines for MDS.
Hope every thing turns out for the best.

Best of luck

Geoff
Geoff C. Age 61. MDS diagnosed June 2013. Type - RCMD with del 20q. Red cells just below normal range, low white cells and platelets. No current treatment - active monitoring every 4 weeks. Lancashire.
“I’m not living with MDS, MDS is living with me!”
chris
Posts: 577
Joined: 01 Dec 2009 21:52
Location: Essex
Contact:

Re: Hello - my MDS story so far

Postby chris » 09 Dec 2014 22:53

Hi Geoff

Thanks for posting and also for going to the Cancer 52 event. You should meet a few other MDS patients there and help raise the profile of MDS with politicians. Hope that the day does not prove too tiring for you. Use lots of hand gel re the infection risk!!

Hope you have read the Coping with Fatigue leaflet on this site? It's really helpful and you will need to pace yourself and save up energy! Not having any treatment also takes some time to come to terms with but, on the whole, you are in a better place than when you do need treatment.

I have been on watch and wait for 6 years - something which now sounds quite surprising and welcome to me - as the original prognosis for my diagnosis (CMML) in 2008 was a median life expectancy of 12-18 months!! The leaflet which told me that in 2008 has since been revised as more research and information about MDS has become available. "Active monitoring" sounds less threatening, doesn't it?!! The worrying does diminish a bit but it is always there in the background.

Take care and keep well

Chris
Chris. (F) Age 67 (2017). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
GeoffC
Posts: 8
Joined: 25 Nov 2014 20:49
Contact:

Re: Hello - my MDS story so far

Postby GeoffC » 14 Dec 2014 09:54

I promised to give an update from the Cancer52 event at the House of Commons last Wednesday. Not having been to the House of Commons before it was quite an experience. Seeing parts of the Houses of Parliament that previously I had just seen on film or in news reports.
The journey to and from London was not easy, hampered by the gales earlier in the day the train was delayed and on the way back was cancelled 50 miles short of home. I finally got back at midnight. Was I tired the next day!
I do think the event was useful in that it did raise awareness amongst the MPs and the Lords and Ladies who attended. Two notable attendees I spotted were the Secretary of State for Work and Pensions Iain Duncan Smith and Lord Winston (Professor Robert Winston).
In discussion with some of the attendees there seemed to be a consensus that funding for research and treatment really needs to be sorted out as there is currently no single source of funding and that is preventing things from moving forward.
I know things won’t change immediately but events like this can only help to keep these issues on the political agenda, particularly with the general election coming in May next year.
MDS UK Patient Support Group was well represented, I think we probably outnumbered all the other groups put together. Sophie ensured we all had our “Ask me about MDS” badges so we were easy to spot in the crowd and that also made sure MDS was definitely on the agenda.
Time will tell how this event will change things but certainly MDS is now a little better known in political circles than it might otherwise have been.
Finally there is a press release on the Cancer52 website if anyone wants to read it.
Geoff C. Age 61. MDS diagnosed June 2013. Type - RCMD with del 20q. Red cells just below normal range, low white cells and platelets. No current treatment - active monitoring every 4 weeks. Lancashire.
“I’m not living with MDS, MDS is living with me!”
punda milia
Posts: 22
Joined: 01 Oct 2012 14:08
Contact:

Re: Hello - my MDS story so far

Postby punda milia » 18 Dec 2014 18:14

Thank you very much for making the effort to attend the event at the House of Commons. It must have been quite difficult with the trouble with trains etc. However, I expect you found it quite interesting and helpful. Research is the key to discovering new drugs that can help people with complicated blood cancers,
66 year female. Diagnosed with mds 2012. In 2002 treated for Non Hodgkins Lymphoma with chlorambucil. Have enlarged macrocytes, low neutrophils & low white cells. Also have Trisomy 8 & classified Intermediate 1. Now on watch & wait

Return to “Say hello and general messages”

Who is online

Users browsing this forum: No registered users and 2 guests