Anthony Abel
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Living alone with MDS

Anthony Abel
Posted by
22 Mar 2015

Goodness knows I'm trying to be positive, the chemotherapy does not give me any problems except fatigue. It's the constant fear I am experiencing that is the problem.

The Azacitidine is only a tempory fix, not a cure. My haematologist tells me that it can be effective for between 1 and 5 years depending on the initial prognosis, mine was poor.

It's like being on death row, I'm living from one blood test to the next each month. The fear recedes somewhat during the day but creeps back at night. I am experiencing terrible nightmares and wake in panic in the small hours.

I have used the Macmillan support line and the Samaritans but that help does not last for long. It's no use seeing my GP who disregarded another GPs warning that a blood test showed a bone marrow problem six months ago, I no longer have any confidence in him.

Any advice how to overcome this terror I am feeling would be very welcome.

Comments

Anonymous
22.03.2015

I hope someone better informed than am I can help you with your fear. I wonder if you can START your own support group? Perhaps the hospital can allow you to have a place for meetings and a social worker can facilitate? I know you have fatigue, so that is a problem. Perhaps there can be a support group through facetime or Skype? A person with some technological background might be enlisted to help. Perhaps a ritual of how you deal with your time can help....set aside ten minutes or so dedicat ed to allowing yourself to sit with your fears....feel them....sit with them....then, think about something joyful that fills you with happiness. Train your brain to accept that you can experience the good with the bad and that the world did not come crashing down, you are ok. Ask your doctor about meds to help with anxiety. There are essential oils out there that people put on themselves, diffuse into the air, put into capsules, and drop into liquids to help them with various things, like pain, stress, nausea etc. These are powerful and natural oils from plants and herbs. Perhaps contact an herbalist who can help you with Chinese Tea that deals with fatigue and anxiety. Some go to acupuncture regularly. They can place the needles in places that make you fall asleep on the table you get so relaxed. Letting some of these stress hormones, like cortisol, be diminished can be key. Meditation is a proven way to get the brain and body to relax and improve. There are many books out there that are wonderful and reading them just might be the seed to initiate some changes in your thinking and your activities that can calm this down. Knowing that what you are doing with treatment is the "dark angel" to quote Mark Nepo and that you can embrace the current of healing that is in the chemotherapy and bless it, be grateful. All of these things make changes within and my hope is that you can tap into that to help you. Don't go it alone any more than you have to with your circumstances. I have found in the darkest times of my life the most dear and influential to my well being people have shown up. ((gentle hug))).

23.03.2015

Hi Anthony,

Your anxiety is completely understandable and it sounds very much like you would benefit from some additional support. I appreciate that your relationship with your GP is a difficult one so that is not an avenue that you'd like to go down however it is definitely worth asking your consultant at the hospital if they know of any patients or patient support groups that you could get in contact with. You should also ask them about access to a Support Nurse who should always be available to you.

I've done some looking around and have found a website called mdspatientsupport.org.uk which has information on local support groups that you can join, patient stories and specialist support staff that would be well worth taking a look at. Here's the link:

http://www.mdspatientsupport.org.uk/ 

Stay in touch and remember that we're here to help in any way that we can too.