I feel lost !

Hi Fur baby mummy and welcome to the Online Community but so sorry to hear about your husbands diagnosis. 

I am Mike and I help out in our various blood cancer groups. I have lived and been treated for a rare Non Hodgkin’s Lymphoma for over 23 years including having had two Stem Cell Transplants (Bone Marrow Transplant) and I am over 7 years out from my last treatment and living a great life….. this can be done….. do take a few breaths and a few more.

A blood cancer diagnosis in the family can be such a challenging and stressful time but I do hope you will find the Community a safe place to get support and to ask your questions.

The Community is divided into support groups (discussion rooms) so can I recommend you join and post in our supportive Acute myeloid  leukaemia and Stem cell transplant support groups. These are safe places to talk to others who may have a similar diagnosis and treatment experience, to ask questions and get support from family members who are navigating the same journey.

If you'd like to connect in with a group click on the (Bold) Group link I have created above. Once the group page opens click on the black banner that says [click to join] at the bottom, or the [Join] button under "Group tools."

You can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post

The Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about specific cancer and practical information, get emotional support, benefits/financial guidance or just connect with a listening ear. 

We also have our Ask an Expert section but do allow a few working days for a reply.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and aim to give support to all the family.

Please do get back to me if you need further help but ai will keep an eye open for you in the support groups ((hugs))

Hi Mike,

thank you very much for your response, that is so kind of you.  What a journey you've been through but your story has honestly given me inspiration.  (it also gave me a lot of snotty tears too !)

i will follow the links now and thank you also for the fantastic bit by bit guide... you've certainly done this before... you are truly a champion.

thanks again

x

Turning my challenges into a channel to support others make their (your) journey that more manageable ((hugs))

Hello there.  I am supporting my partner through a similar long standing issue.  I too feel lost but I am so pleased to have found Macmillan and hopefully get some help.  Don't feel bad about any of your feelings, we all feel the same.  I am sure it all sounds very scary when it's so raw and new but bone marrow transplants can be very successful.  I am happy to talk to you, if you need to.  There are a lot of emotions to be dealt with, they are all perfectly natural.  Seek out the comfort of family and friends.  Lots of hugs if possible.  You are not alone, hang on in there!

Hi DaisyPearl,

thanks for reaching out to me - your words are vey kind.  i am in a very positive frame of mind at the moment but the odd "niggle" is still creeping in.  He has had his PICC line put in today and is waiting for the last of the results from his Bone Marrow biopsy to come through before they can decide on which treatment apparently. i keep thinking maybe they will find something awful and have to tell us terrible news.... this is is alien to me as i am usually such a positive person !! 

Can i ask how long you have been on this journey?  

These Macmillan groups have been amazing, i don't feel "as" lost now just still somewhat lost ! 

thanks for speaking to me again, i really do appreciate it.

x

Hello again

It's not an easy time, it never is.  I've just had to get in touch with Macmillan because I can't cope on my own any more.  My partner has been ill for 6 years, so it's been a long haul.  

Strangely, my partner Peter had to be admitted to hospital yesterday as he has a chest infection but he is being well cared for and has improved a bit.  You will find the staff really wonderful, there is something about nursing patients with cancer that brings out the best in the nursing staff, I guess they must really empathise with their patients.

I hope they manage to sort out what sort of treatment your husband needs, present day treatments are much more successful so stay positive.  I am not usually as positive as I'd like to be but in some odd way I have found an inner strength that has carried me through for all these years.  It's only recently I've felt rather overwhelmed but the small amount of help I've had so far has helped a bit.

Be kind to yourself and never criticise yourself if you feel down, we're only human and these shocks to the system take some dealing with.  Hope you have some friends or family nearby to help you along.  There are so many of us out here in similar situations, I find it quite unbelievable but also comforting to know that we are not alone.

Chin up and positive thoughts, sending a big hug to you both and lots of courage xx