Hay there pebbles ...

You sound a very positive lady, and that will help you through , though be prepaired it all hits you, just when your not expecting it...you will have so many different emotions .. this cancer rollercoaster super has up and downs and lots of twists and turns .. all we can all do is hold on tight .. your never alone on this ride .. and I'm glad you got a little more time with him .. every day is precious ... and I for one don't want to know how long I have if it comes down to it .. l just want to take every day as a bonus ... and look for something to make me smile .. I'm sticking two fingers up to this horrible nasty cancer if it's the last thing I'll do ..

I know nothing can make this last journey any easier , but I'm here most days if you want a rant, or chat, so there's always someone here who KNOWS what your going through .. so sending you a big hug ... Chrissie

Hi Chrissy

You sound like an absolute rock despite everything you are going through yourself.  I am so glad I found this link as I have felt so guilty talking to anyone about whats happening- everyone seems to know someone affected by cancer and until you hit this journey you can never know truely how it impacts you and yours.

Its difficult as a carer to watch a loved one suffer and be hopeless to make it better -especially if you are a natural 'fixer' !  I have a friend who lost her husband within 6 weeks to cancer and although she is happy to be supportive I feel as if I may be opening fresh wounds if I talk to her -so thank you - its amazing to find an opening to be able to talk to you -and others.

I always look for 1 good thing each day and this is todays

Hi Pebbles,

I am sorry to hear that Cancer has landed at your door too and that the prognosis is not good. Your husband is just another example of how doctors cannot always predict our life spans. I have lost both of my parents to cancer as well as many family and friends and am unfortunately only too familiar with the situation you currently find yourself in.

I am glad to hear that Canzantonib has given both of you another year together, although it must be so disappointing to find that it is no longer as effective as it was. Looking at a loved one and trying to determine whether or not they are still breathing is heartrending. You say that you have no idea of when to shout mayday, I'm sure that you will know when the time comes. The palliative care team will possibly recognize when time is drawing near and advise you of this. It sounds as if you are coping as best you can by dealing with things on a day to day basis.

When you are dealing with so much it is impossible to look any further ahead. You cope with the really bad days and enjoy the good days together, but you do have to think about and look after yourself. As the principal carer you will be no use to anybody if you fall ill.

Please keep in touch and remember that we are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine

Thank you for your lovely reply. I am so sorry you have lost so much and so many to cancer.

Although my grandma died of cancer when I was 15 she was cared for by MacMillan and as a young girl you don't realise the impact in the same way.

Its really scary having to go day to day trying to judge how to handle things.  Unfortunately due to our location the support infrastructure is not as robust as in a city or more central area therefore the resources seem to be spread thinner.  Every step of the way has neen a fight to get the right people involved and our GP has only recently shown any interest due to third party involvement.  Therefore I have no faith in them whatsoever! This website and the forums have been helpful in terms of what to look out for and how to support my husband.  I have no idea how long he has -hes not drinking much or eating much but I know now not to push the issue-just to support as much as possible.  Hes sleeping almost all of the time but at least hes not hurting as badly.

I find the head space app useful for trying to blank out my head to sleep .  Whitney nell was doing a good job but Im trying not to self medicate too much!

Huge hugs and thanks to all out there.  It helps.

Xx

Hi Pebbles,

I am so sorry to hear that your husband has not had access to the resources that he should have had and that his GP has not been much help either. Sometimes you have to change doctors or fight hard for what he is entitled to. If you are living in a rural situation, I expect that it is not possible to change doctors.

I had quite a fight on my hand in the early days of diagnosis. I changed GP and surgeon and this made all the difference in the world. You really need to have complete faith in your care team in a situation like this.

Do you have any support from family of friends. Don't turn down any offers of help no matter how trivial they may seem. Are you managing to sleep at night or are you up during the night to tend to your husband?

It is normal for him to sleep most of the time and it is not unusual for his appetite to dwindle. As you have already discovered, nobody can accurately predict how long he has. At best it is just a guesstimate, but it can be way off target at times.

Stay strong.

Kind regards,

Jolamine xx