Anyone else being seen at Royal Marsden Sutton?

[Rachelthepotter]

Hi. Its a while since I’ve posted. I’m now being treated at the Royal Marsden in Sutton - are any other people being treated there? I have myelofibrosis. Would be nice to be in touch with others in the area.

My husband developed a glioblastoma very suddenly 2 yrs ago and died within 3 months. Still coping with the aftermath. My own PMF is pretty stable and being controlled with ruxolitinib and transfusions. Counts look OK, but I feel fatigued a lot of the time. Transfusions help, but can’t have too many more. All the best

Rachel

[champ30]

Good to hear from you Rachel.I'm back on hydroxicarbimide and transfusion dependant. I'm hoping,if and when the drug momelotnib is available I will be a candidate for it.....at least give it ago for the anaemia. We were diagnosed around the same time and symptoms about the same.Take care Lynn

[Hidden]

Sorry to hear your sad news Rachel. I’m based in Bedfordshire.

[Fika500]

Rachel I am so very sorry that your husband died - the sudden diagnosis and speed of deterioration must have been a terrible shock. It will be understandably hard for you dealing with grief on top of your Myelofibrosis. Grief is roller coaster of emotions , something we don’t ‘get over’ but can learn to live with, finding moments joy where we can without it diminishing the reality of our loss. It it isn’t always easy but I have found it helpful to realise you can be both happy and sad at the same time. I found Megan Devine’s book very helpful -‘It’s okay that you’re not okay’ .

The fatigue will be very challenging for you and it’s important to learn how to ask for/ accept help when needed. If there’s a Maggie’s Centre near you I recommend it.

I hope you find a good support network in your area and wish you all the best.