Fellow MDS sufferers

Dear tvman, thank you for posting this, blood cancer patients especially when they are first diagnosed need as much support as they can get, as it’s all very confusing at the beginning due to,the technical nature of some of the different diseases.

best wishes 

jane

Hi Tvman

I’ve also found this site to be very good and they also have a really good booklet which provides a lot of detail on MDS. I also have found some good information on the Bloodwise website as well and they also have a comprehensive range of booklets covering a range of blood cancers but also a good general guidance versions covering things like Neutropenic diet. 

All the best, 

Dear dyslexic prof, thank you for your very informative post. I took the liberty of reading your profile and can see you have experienced some challenging side effects of your treatment. I noticed you mentioned the emotional stresses of living with a blood cancer that can be very unpredictable, this is a subject that I have a bee in my bonnet about and with the time I have left I’m trying to encourage my heomotolgy department to incorporate more access to psychological support for their patients whatever their prognosis. I was heartened to read you are receiving your treatment in a supportive environment, but at the end of the day we all have to live inside our own head and anything that can be done to help increase patients individual resilience to the pressures that come with a blood cancer is worth doing. I would be most interested to hear your views on this subject as it’s quite hard to get people to open up about how they really feel.

best wishes and many thanks

jane

Dear Jane

Thanks for your message. The emotional issues are something that I have found challenging at times but I am quite open about discussing. When I first had my diagnosis my consultant was really good about discussing with me issues about the condition and the mean survivability for low risk MDS patients like myself using the IPSS-R scoring system. As an engineer my response was “well that’s the mean survivability I will be in the upper quartile” as the numbers were just statistics to me. Within five days, however, I had to be admitted because of an aggressive infection and then spent nearly three weeks on a range of IV antibiotics. How quickly the infection set in freaked me more than the MDS diagnosis I must admit. While I was off work recovering from this episode I found I was engaging in a lot of displacement activities and I realised I need to get some counselling. My employer was brilliant and arranged this for me. I found the counselling hugely helpful and it gave me space to talk about what my fears etc were in a safe and non judgemental environment. It was easier talking with a counsellor than it would have been with family as although I have a really close family (wife and two teenage sons) there were things I wanted to talk about that related to them, particularly my fears for what might happen if I wasn’t there. I know that would have been too upsetting for both them and me to deal with.

Although I have managed to stay infection free, the  uncertainty and how quickly things can change still freaks me from time to time. I have also found the fatigue hard going at times and many on this site know what fatigue rally means. This isn’t just feeling tired and feeling better after a rest it’s so draining you not only feel exhausted but the “brain fog” means you can’t even think coherently. The other thing I find is that as my condition is chronic rather than acute I could survive for quite a while, if I can avoid infections and the GCSF appears to be working at the moment in helping boost the WBC. A lot of the time I feel reasonably well although I don’t have the capacity to do what I used to but that’s a small price to pay. I also some times have a feeling of guilt that compared to many other patients I encounter at the clinic and most of the people on this site I am have a relatively easy time. This might sound slightly daft but it’s taken me a while to contribute on this site as I didn’t feel I had the experiences many others had so my issues felt rather trivial. 

I know every individual has a different way of dealing with things and these are just some of my thoughts. I actually am very open about discussing things as I think it helps people understand these conditions more if we can talk about it. I also know that is not the case for everyone. Each person has to find their own way of riding the “emotional roller coaster” but they shouldn’t have to do this alone. I strongly believe that availability of counselling is important and everyone could benefit from this, although the quality of counselling that is available can be variable. Again I was really lucky. My counsellor was excellent and I rapidly developed a good rapport with her.

Sorry for the length of this. I hadn’t intended on being so verbose but once I started I couldn’t stop. Also apologies if this appears a bit self indulgent, I don’t mean it to be so and I hope it answers some of your questions.

All the best

DP

Dear dyslexic professor, thank you for your post. I think you explain really well the pressures of living with a disease like mds which is so individual and unpredictable. We have a patient at my clinic who was in the high risk category who had a stem cell transplant who is now doing well and recovering but it was a big decision for them to go ahead rather than stay on watch and wait, so I have an understanding of the pressures that you live with regarding possible future treatment. I think the counselling you had in the early days has almost certainly given you the best chance of not falling victim to any unnecessary emotional problems. I hope anyone reading your post will see that it’s ok to be vulnerable and that physical symptoms alone are not the only thing that should be treated. As for fatigue, it’s the one thing that drives me nuts, even when the brain is willing the body sometimes says no, but I’ve got round that by using my walker with a seat, where there’s a will there a way !! So thank you once again for your contribution it will be great resource for anyone with mds who comes looking for information or guidance no matter what stage they are at in the progression on the disease.

best wishes

jane

Dear Jane

I agree that it’s ok being vulnerable the key thing is finding the right support at these times. Developing these support networks is important. I find being able to talk about things is important but I have different people that I discuss different things with. In particular I have some friends who I can go and talk to if I have had a bad day and I feel like having a bit of a rant. They also know they can do the same with me. I also find sites like this are really good as you can discuss things with people who have an understanding in a safe and non-judgemental environment. 

In terms of the fatigue, I’m sorry that you also have really serious issues with this but it’s great you’ve developed strategies, such as using your walker, to try and work around this. 

Take care.