A not so good start to the new year

Please post here your experiences of MDS as a patient, carer, family or friend

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Joined: 01 Dec 2009 21:52
Location: Essex

Re: A not so good start to the new year

Post by chris » 20 Feb 2015 11:36

Hi Janet

I wondered if there is any financial help for travel costs?Maybe Macmillan could help? Just wondered if there was a Centre of Excellence nearer you that would not be so exhausting to visit? All good that you are feeling more supported and positive.

Take care

Chris. (F) Age 69 (2019). 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
Posts: 9
Joined: 25 Nov 2014 20:49

Re: A not so good start to the new year

Post by GeoffC » 21 Feb 2015 18:07

Hi Janet
Glad to hear that Bev is feeling better after the awful start to the year and you were able to make the appointment at King’s. It does make a difference to know you are in the hands of experts.

On the travel front train tickets are so confusing these days. You may have already checked on this, but here's a couple of tips.

If you are using Virgin from Rugby make sure you book your ticket early, as the prices go up the nearer to the date of travel you buy the ticket. But also check the conditions on the advance bookings, some are for specific trains and are not transferable and if the appointment gets changed, you are stuck with it.
If you are going to have to travel frequently have a look at a senior rail card. Again there are restrictions on which tickets you can use it with, but it may make sense.

Sometimes I think you need a Maths degree to work it all out. :?

All the best and take care.
Geoff C. Age 66. MDS diagnosed June 2013. Type - RCMD with del 20q. Red cells just below normal range, low white cells and platelets. Transformed to AML 2016. Stem cell transplant Jan 2017. Currently still in remission. Lancashire.
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