Cml and mental health

Hi  and welcome to this corner of the Online Community, although I am sorry to see you finding us and although I have a different type of blood cancer I do understand the rollercoaster you are on.

I aa safe in saying a cancer diagnosis turns your world up side down...... and as you already suffer from anxiety this will indeed magnify it out of proportion.

First your Nausea, do ensure that your team are well aware of these issues as they can change medication to help - everyone reacts diffrently so do ensure you talk with your Cancer/Chemo Nurse.

Talking with others who understand can help a lot, so the fact you are on this site is a great step forward - well done. The CML group can be slow but I see that you have been posting and also you have found our 'Experts' again well done.

Do check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.

You could talk with someone right now by using our various Macmillan Support Line Services  - call them on 0808 808 00 00

This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

My coping strategy?........

The first thing is a note book - I have a few from my 20 years cancer journey.

This is the place to unload, the place to put your feelings down as well as ALL the many questions you need to ask someone.

So when you talk with a consultant or your CNS you won't freeze and are overwhelmed by information.

So you are asked "have you any questions?"........ you can say ‘yes I have some question’ and you go through each question one by one, making sure you write down all the answers you get.

If you don’t understand something you stop the Consultant and ask them to put into language that you understand and remember the record everything they say and again if you don't understand, fold your arms and say 'explained that so we understand' You don't want to be going home after an appointment saying 'I wish we has asked ........'

The note book also helps your sleep!!

As these questions and thoughts often come at silly-o’clock so get the note book out and write the thoughts down and park them - it does help a lot.

I would always recommend that there should be two people at appointments as two pair of ears take in far more and the onlooker will catch the stuff the patient will not hear. I would also recommend that you go have a cup of coffee/tea straight after the appointment and unpack what had been said so that a clear understanding is made and with this you can plan to move forward....... a problem shared is a problem halved.

The main strategy I have used for my 20 years was I quickly came to understand that I could not control the medical side - that was my teams job....... indeed, the best thing I could do was look after myself by eating well, getting as much sleep as possible and yes, staying positive.

I quickly realised that all the worry in the world was not going to make any difference as to what my team told me or what my treatment plan was........ but stress and worry would actually make me ill and therefore less able to deal with my treatments.

Always around to help out ((hugs))

Thanks so much for replying! I’m on ondensatron for nausea which does help. It’s more the worry of going back to work etc that is a trigger for me. I have a notebook ready and I totally believe in my haemotologist, he lets me call him too with questions. I guess I am just grieving my old life of being normal, I don’t really know what to do to move forward. My Dr said it’s it’s mental side of cml that is worse than the physical and especially when you already have anxiety. I believe that I will get through this and be ok and I know I need help so I’ve asked for it. Just hope It all gets easier over time. 

You are doing great, some of the drugs used for blood cancer do play with the brain but this will pass as you get through treatments.

Did you check to see if you have a Maggie’s Centre near you?....... up in the Highlands people will do a 3-4 hour round trip to go to support groups as they do make such a different to being able to navigate the cancer journey....... I actually have our Heamatology support group this afternoon...... yes I am over 4 years post treatments but it is still important for me to go as it helps unpack the years of treatments.

You do need to balance up going back to work with regards to it being a benefit for you or will it increase you stress levels?

((hugs))

There’s a maggies in Edinburgh, I’m West Lothian, it’s a bit of a hike and to be honest I just can’t face going to a cancer centre. I still haven’t accepted I have the c word, I accept Leukemia but the c word no even though I logically know it’s the same. Yes, work will defo add to the stress initially, I enjoy work and routine but not ready yet. We get 6 months full pay. I’ve been to McMillan at my local health centre so I will probably continue to go there I til my counselling is set up. 

Hi again, just back from my Maggie’s   Heamatology Group, again a rewarding and supportive hour talking with people from many blood cancers......and yes they was someone who did the 3 hour round trip.

I did ask him why does he do the trip.......”If I stay in my little box I will get isolated and it’s not good for my mental health - but talking with staff and folks like you who have been or are on the blood cancer journey helps me a lot”

I do understand that you don’t want to accept the ‘cancer’ word but with blood cancer you will not escape it, as more than a lot of other cancer types, this will most likely be a long term journey.

I think you may have accepted the cancer word but you are still working towards embracing it and in doing that you will actually start to control a good part of what goes on around you ((hugs))