The waiting game

Sending you my very best wishes. I’m feeling very much the same and not sure what to do or who to turn to. Trying to take one day at a time and focus my attention on my Mums care. I keep telling myself to try and look after me but it’s not that easy. However I will say to you - try and look after yourself. Take some time out. I went for a walk this week, it cleared my head for a short time. I’m of the opinion that I can’t give her the attention she deserves if I’m not ok. I guess it’s all part of grieving even though they’re still there. I hope it helps to know you’re not alone. 

You really should demand regular visits from your local cancer nurses (my dad has weekly district nurse or palliative nurse visits). Sorry you are going through this. It is very difficult. All good wishes. 

Hi, 

It's so tough being the person who is caring. My husband has been poorly since June 21 but would not go to the GP. Eventually after nagging from his daughter and son in law who are doctors, he did go and in the November was diagnosed with CUP with a terminal prognosis. He has been through so much treatment and still refuses to give in, looking for further treatment options. He was given weeks to live last June, bounced back again. Two stable scans and now the cancer is active again. Palliative chemo which has now been stopped. The oncologist does not understand what is going on with him and how he is still here. No cancer nurse for CUP so no point of contact when needed. No support from the children.....a regular 'how are you coping ' would be appreciated. My friends and colleagues have been brilliant, but just sometimes I want someone else to take responsibility and give me a break. It's so tiring being a carer, working, looking after the dogs, the house, the cooking....which becomes impossible when he won't tell me what he fancies to eat .....very faddy now. And I am exhausted. The bereavement started when he was diagnosed and I have started to plan how my life might go when he passes, several times now. I don't know what to feel half the time. Sometimes just numb. We too have issues with medication from the surgery taking two weeks to get a repeat prescription. We should not be chasing things. The co-ordination between the oncology department and surgery has been woeful. I too feel very lonely and actually wish that the end would hurry up and happen. To some people that might sound harsh, but actually, I have just had enough now. It has been a never ending rollercoaster ride and I would like to get off now. 

Karen 

Hi, I'm feeling the same. Tough rollercoaster that I'm exhausted of. My husband was diagnosed Feb 23 and its been set back after set back. This final phase is both heartbreaking and scary. The worry of what will happen and the stress of just sering his body fall apart with him alive in it is so distressing. I pray sometimes for an end to both our suffering. Then suffer from guilt from not having the patience to see these last days through. 

I grieve for the loss of our relationship even though he is still here. Our life has gone. Just endless district nurses visits, hospice nurse visits.  Worrying for the next time he wakes as to what they may bring. 

Waiting for a release from this pain.

Understand every word. Hugs. 

It’s a horrible rollercoaster. I hope you are managing to find a little time for yourself. The guilt is awful but I think we all feel it. I wonder if it’s a blessing or a curse having time to say goodbye. Keep strong x

You stay strong as well. Finding me time is not easy. Our local care charity, Devon Carers has a break fund to enable carers to a payment to give them time to do something for them. I have been awarded a payment and going to have a spa afternoon. It's the first thing in a long time, that I have actually looked forward to. It would be worth seeing if such a group exists in your location.

Sending hugs.

Oooo… sounds lovely! Enjoy every minute. You deserve it.
I’ve got the fantastic Maggies at Clatterbridge on my doorstep. I can’t thank them enough. 

Genuine hugs are always welcome - I’ve really noticed the difference in the hugs I receive. 
Have a lovely day