What end of life care involves

Thanks  

although I am incurable and receiving 'palliative ' treatment I am still getting my head around when /what my end of life is.  You have really helped me  with this - it is starting to become clearer and at least I can start to plan / ask the questions that ii need answering.  You are amazing. Thanks again 

Virtual hugs xx

Dear

im glad you found the information useful, I think it’s a process and once you have the basic facts you can then organise things at your own pace. Always happy to help.

The local Hospice got in touch with me the same day I was diagnosed! You can imagine the emotional hell I went, ( and still am ), going through. Three months on, I am, in hindsight, glad they did. At least they helped me get my affairs in order. I am sorry to say that I received little or no help at all from Macmillan.

Dear,

I am glad to hear you receiving support from your local hospice. I see from your other post that you have Merkel cell carcinoma which is quite rare. I also have a very rare blood cancer which was terminal at the point of diagnosis so understand what you are feeling right now but am 20 months on from diagnosis and in the final stages of my disease. The first 12 months I went without any support as I wasn't within driving distance of my nearest maggies centre, but have been using my local hospice in the last 6 months and it’s made a huge difference to my quality of life. I also read you are receiving some palliative immunotherapy which I hope is helping with symptom control. I also have a palliative care doctor in the hospital where I received my cancer treatment who is a advocate for me if I’m ever admitted to hospital. If I can offer you any support I am happy to do so even if it’s just a listening ear, this is a difficult time for us both.

Thank you for your comforting message. It helps to have someone to talk to. I have just started counselling at the hospice once a week but have not yet reached the stage of 'opening up' totally. I find it difficult to show my emotions. I received my diagnosis within days of my last true friend passing away within 3 weeks of his diagnosis.! I was in shock and grief of being 'last man standing' when this totally unexpected bomb shell was dropped on me -  by a doctor wholly unconnected with cancer during what I thought a routine meeting. The sense of loneliness, together with having to sort out my affairs ( to the extent of organising my own funeral ), has left me emotionally devastated.

Dear

i am so glad to hear you have started counselling at the hospice, just take things at your own pace. For me the hospice is a place where I can be myself and be around people who truly understand what I am experiencing. I am so lucky to have had my husband to help me sort out my affairs as it’s quite a convoluted process so I can imagine how difficult it was for you to do it on your own. The way you got your diagnosis sounds very traumatic, you didn’t even get a chance to mourn your friend before dealing with your own problems. As long as I am still in the forum you’ll never be alone and I’m feel confident someone else will step up to help in the future. 

Hi Raretez,

Your post has helped me. I just want to share with you that my father died of multiple myloma four years ago. He was my best friend and I adored him. He had it ten years, and I was inconsolable when he passed. Six months later I was diagnosed with stage 3 BC. I went through my treatment and surgery in a complete daze. I was grieving my father, so I understand your double-whammy. I would sit in the chemo chair crying and nurses would tell me everything will be ok, referring to my own cancer. They didn't understand I was not crying over my own cancer, I was (and still am) overwhelmed by the loss of my father, and had the added stress of being in the same treatment room as him again. Looking back now, I went through the whole thing in a state of emotional breakdown. I had no choice. The other thing I can see clearly now is my family members were also in grief, so they just weren't available to support me, so I felt I couldn't ask them to go through this again. As a result, I did all of it on my own. I wouldn't recommend this to anyone, but for me, it was somehow easier to cope on my own. I'm now stage 4 terminal and at end of life. I have a network of friends who support me and I find the online community very helpful as I can't turn to family. It is a roller coaster for sure. I hope you can sort things out bit by bit. I started with a list of 'to do', and got through it. For me, the most important thing on that list was my last wishes. It took me months to get it right, as we have to think of how it all impacts on others. It ended up being a very short set of straight forward instructions. I sympathize and feel your distress and just wanted you to know you're not alone. I hope this helps some. 

Kate x

Dear@caitlin2020 kate

thank you so much for sharing your story, it will be helpful to anyone facing similar circumstances. When you have a whole family who is grieving it’s sometimes hard for them to support each other unconditionally. It’s something I’ve read about many times. That’s why external support is so important and is to be encouraged when the patient feels ready to accept it.

At long last I have learnt how to navigate this web-site! Between that and umpteen medical and hospice appointments, I can finally reply to you. It is only now that the very few people I have around me are beginning to realise that deepest distress I went through was the grieving at the loss of my last soulmate. I too went through my personal diagnosis in a state of utter numbness. The tears I cried every night were those of bereavement......and not a little anger that they had 'left me all alone' when I needed them most. My own terminal situation only crept up on me after a few weeks and I felt, well, nothing! Even now my counsellor is concerned that I worry more for the few around me and nothing at all for myself. It is then that I wonder if I would have been better off keeping things to myself. However, a friend was with me when I got this bombshell diagnosis, so no hope of keeping it quiet. The three 'principle nominees' or whatever they call people to contact, are in a state of disbelief, one having had to take a month off work and near breakdown. That certainly doesn't make ME feel any better. The five months I was given to live has expired, thanks to an experimental drug. But whilst those around me view this as 'wonderful news' the reality is, it's just extended the inevitable. I have to smile whilst secretly thinking.....'What's the point'?

Dear

its good to hear from you. I understand what you mean about feeling numb, in the early days you have so many hospital appointments you hardly have time to form any thoughts about how you feel. I’m personally now refractory to treatment and am purely a palliative patient and as strange as it may sound it’s almost a relief as it’s was always inevitable. I ultimately got fed up of being on the treatment merry go round, I have relapsed 3 times in 20 months, compounded by having to have kidney dialysis three times a week, which I have now stopped. I’m lucky that my husband is fully supportive of my decisions, he often says you have to distinguish between prolonging life or extending death, I have long since given up trying to explain to others my desire not to spend my final days chasing rainbows.