Hello - I’m new here

Hi WildBird and welcome to this corner of the community but sorry to hear about your husband.

It would be good for you to talk with others who are navigating the same practical and emotional challenges of supporting your husband so let’s see if there are any carers looking in.

You may also benefit from joining and posting in our general Carers only and Supporting someone with incurable cancer support groups where you will connect with others navigating the exact same support challenges.

Do remember that the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

Thank you, TheHighlander, for your response.  I appreciate your words and suggestions for other groups.  Life continues, each day with challenges.  I am managing though often I am overwhelmed by the number of things that need to be done.  I have so much to say, to share, to release; however, finding the time and energy to do so is very difficult.

I have been on my incurable blood cancer journey for well over 24 years now and at times not one day can be the same but connecting in with the support platforms I have highlighted will help you navigate this unwanted journey ((hugs))

how are you getting on?

I have been on my journey for over 24 years and have had some challenges but I am still here doing good.

24 years, that’s amazing amount of time in remission. 

Hi Highlander,  

Thank you for your reply.  24 years and going … indeed that is a long time with some dreadful challenges hanging over you.  As you say below, you are still here doing.  I am not struggling with the disease and pains and worries.  My husband is.  Every day continues to present difficult challenges for me.  I find myself crying more and more these days.  I don‘t have any friends or family anywhere nearby (nobody in UK).  My husband is my life and focus.  When he has difficult moments with health, it is up to me to deal with it.  Again, I can‘t help but feel overwhelmed by these challenges at times, yet I willingly and lovingly embrace them and do what I must to get us through.  There have been times doctors wanted him to go to hospital; he, however, absolutely refuses to go to hospital.

Hi Maria Mtjo I have only been in remission for about 8 years, the longest remission over my first 16 years was about 9 months…..  that’s what comes with a rare type of NHL.

Hi WildBird I will always say that the journey can be as hard for everyone looking on as their loved one is going through treatment.

Do follow up on the support platforms I have highlighted as you can connect up with other carers who understand the challenges.

I understand, but you’re still here breathing. 

I’ve just finished my second round of chemo , playing the waiting game on my blood to rise. Then I’m home for a while, before waiting on SCT date. It sounds more horrific than the chemo to me.