Hi everyone, it’s nearly 3 weeks since I lost my partner and I am struggling with random people on social media some who knew him years ago and some only online sharing photos and stories about him as if they lived a life with him. I have chosen not to engage in such a thing as I don’t feel the need to. But why do these people, most didn’t know the struggle of the last year or that he even had cancer and all of a sudden they were his best friend and are heartbroken. Am I being petty or do other feel a tinge of anger and annoyance at these things to? We spent hours on end speaking of our childhoods, past relationships, fears and dreams and everything else in between. Yet I feel somehow all these people try and take away the special relationship we had for 4 years. The only ones who I feel close to and enjoy hearing stories from are his parents and close work colleagues x
Yes I had this, but did they visit him in hospital on his many visits. Did they come & see him at home? No
Did they come to the funeral? Did they eat & drink at the wake? Did they spend hours on social media saying old stories, posting old pictures? Saying how much they’ll miss him & how heartbroken they are? Yes
They then all disappeared again…
Hi @Flower_garden I am glad it isn’t just me. I just feel angry at it all x
Firstly, so sorry to hear your husband died. Xx
Slightly different situation as my husband is still here (but with terminal cancer) but I had to come off Facebook. Actually, I’m still on it for groups but with no friends on there. I was sick of the fakeness and the hug emojis.
My husbands friends have been crap bar a couple of them. I’m actually glad he’s not having a funeral (he’s having a direct cremation) as I’d probably tell them just how rubbish they’ve been. He’s having a party and we’ve already gone through who will be invited.
Basically, I’ve decided 90% of people are just idiots who say things to look good but actually do nothing to truly support you.
Love and hugs xx.
Hi @Nori I am so sorry you have had to do that at a time when you need support the most. Lee very much felt the same and arranged to have a direct cremation leaving me instructions of who would be there for the celebration of his life only his parents, our girls and a couple of friends and then a works night out to be had with them taking me along. He told those that meant anything to him and he never advertised his cancer journey or asked for pity yet all these people pop out of the woodwork! Here if you need to talk I’m also just 40 x
Sounds very similar. My husbands celebration of life party will actually be quite big but that’s mainly because he was the manager of my sons football team and wants all the kids and parents there. He also has a large family with lots of neices, nephews and their kids (not that we’ve seen many of them)
Because of all of this, I’ve already paid for my own direct cremation to make it easier for the boys (they’re only 13 and 14)
@Nori our girls are 16 & 14 such a difficult age x how have they taken the news so far and if you don’t mind me asking where are you on the treatment journey? X
They boys have been amazing but, it absolutely breaks my heart they will no longer have their dad. I have no doubt it’ll hit them more when they get older.
We are at the end of our treatment journey. My husband was diagnosed with incurable cancer June 2022 when his kidney cancer had already spread to the bone and broke his verterbra (which is how it was discovered). He then had two major back ops ( almost dying in the first one) then had radiotherapy, then immunotherapy therapy, then more radiotherapy, then off immunotherapy and wasn’t working, then more radiotherapy, then targeted therapy and then more radiotherapy.
It’s now in all of the spine, pelvis, sternum, collar bone, lung, skull and kidney. That’s what we know of.
Just palliative now… my husbands mobility isn’t good atall and he’s reached such an emotionally low point today.
It’s just an evil illness and such a rubbish way to go.
@Nori I am so sorry to hear this, similar to my partner it was discovered he had a spinal compression and then 3 vertebrae fractures from tumours on the base of is spine he’s been walking around with it for months in pain but waiting for the 3 monthly check up scan after the initial 2 ops, radio and chemo. He was waiting to start an immunotherapy trial which we had all our hopes on after finishing 10 days of radio on the spine which was agony. Unfortunately he never got to start the trial as the cancer in his lungs progressed so quickly in a 2 week space. It’s the most evil disease and seeing the ones we love in pain and not being mobile is heartbreaking. Sending so much love and kindness your way x
So sorry to hear this. We too put a lot of hope in the immunotherapy but it actually only works for around 30% of people. Like your partner, it was simply too little too late. We thought my husband had a slipped disc! To be honest, I do wonder if my husband would have had a better quality of life without the immunotherapy and targeted therapy as the side effects and trips to A&e were rubbish.
Can I ask( was your partners primary cancer lung? Also, did he die in a hospice? My husband is aiming to stay home as long as possible:/I can cope and then go to the local community hospital which has palliative care rooms, or the hospice
@Nori So sorry that you and your husband find yourself in this situation, it really is such a terrible place to end up. My wife passed away last November from lung cancer which had spread to her liver, kidneys, spine and eventually brain. As with your husband she wanted to be at home as long as possible, to see the end out there if she could. We thought that it would be gradual and we could adapt as things deteriorated but the end came so rapidly and with such force that I wasn’t really prepared for it.
Over the course of 3 days my wife went from being fully mobile and aware to first becoming confused, then as the days moved on becoming irrational and unaware of her surroundings and actions. As it was the weekend there was very little in the way of assistance, doctors and nurses did attend eventually but it took hours to arrange and was late at night after exhausting days of attending to the rapidly changing mental and physical conditions that my wife was experiencing. On both occasions the health professionals advised against moving her to hospital, again as it was the weekend. As the weekend wore on she reached the point where she really didn’t know where she was and repeatedly undressed, confused chairs for the toilet and at one point tried to leave the house. It became increasingly difficult to hold her attention long enough for her to focus and take her oral pain relief, both pill and liquid, I couldn’t arrange for a morphine pump as it was the weekend. On the Sunday night I was forced to call an ambulance as I knew that without proper pain management she would soon be in agony. We ended up in the local A&E where she was attended to quickly and moved onto a ward. Once she was as settled as could be expected I was asked to leave as Covid restrictions were still in place. I came home and tried to arrange a hospice place through her Mcmillan nurse for her to move to but she passed away the next morning. All of the medical team that had been involved in her treatment were stunned by the sudden decline.
I hesitated to relate this story but I do it in the hope that it may assist you in some of the decisions you and your husband may have to make and how you will prepare to carry them out. Please understand that things may not progress in the way I have described, but I do wish I’d been more prepared for what turned out to be a worst case scenario.
So sorry to hear this. My husband doesn’t want to die here because of the young kids we have so hopefully things won’t escalate that quickly and we will have time for him to move to the hospice or the local community hospital. Sadly with this disease it’s impossible to plan for every eventuality. The local hospice now know of us, the district nurses know of us, the Sue Ryder team know us well, the palliative care consultant at the local hospital know of us, I have enough meds in the house for any doctor or nurse to make him comfortable and know what to give to myself to make him very sleepy until someone can get to us.
I’m fully aware, despite my intense planning for a million situations, this may still go very wrong. I’m hoping not. This has got to be third time lucky for me where a good death is concerned…
Sorry for the loss of your partner.
Are they friends of yours? If not block or mute them until you feel
more able to see what has been written/posted. They think they are doing something nice for you. NO it can be very upsetting , and you dont have to see them. Alternatively you could put a post up asking his friends to please not post any pics etc as it upsets you at the present . Or keep ignoring them they will stop soon. Their memories are possibly not yours and are irrelevant just now. Take care x
Thank you, I have calmed down a bit now. Think everyday a new emotion surfaces x
Glad you feeling better about it today and you are right every day brings a new emotion ,its like being on a roller-coaster. At present i have more highs than lows but it is coming up to Christmas and the dreaded 1st anniversary. The emotions will prob reverse. My brother put something up in our family group page and i couldnt look at it , i asked him to take it down it upset me, he did and apologised never thought it would as it was a happy memory pic. Now he cant find it and iwant it lol. Take care of yourself and use the support system you have ,you will need it for a while . My best advice is keep as busy as you need to. Xx
Thank you @Lass today wasn’t a good day, I dropped my daughter to school and went back to bed at least the pain stops for a while when I manage to sleep I knew it would hurt, I knew my life would forever be changed but I just feel so lost without Lee by my side. I can only hope in time I learn to smile at what we shared and laugh at the memories x
So sorry for your loss, totally inadequate but I really do mean it. My daughter passed away in August from cancer, we were only told in June. She was 43, married with two children, 14 and 16.
So many offers of help and support, well I could count on one hand how many of them have followed up on this. On Facebook numerous heart emoji’s and stories of how they are suffering without her.
We all felt so frustrated and dare I say jealous of how people wanted to appear as if they knew her better than someone else. Where are they all now?
I could do with that coffee and a chat.
Sorry to sound bitter but I miss her so much
Hi @Minilady everyone promises to be there and one by one they get back their lives yet ours will forever be changed how are your grandchildren doing? Have you sort comfort in those? My girls are what keep me getting up each day but it’s so hard and some days I just want to stay in bed and not face anyone x so sorry for your loss, losing my partner hurts so much but the pain you must feel being your child I can not imagine and I say that to Lee’s parents it’s not the natural order of how things should be x
Our lives have definitely changed forever, already feel a totally different person. The sadness and loneliness is totally consuming and we miss her so much but we have to keep going. My grandchildren definitely keep me going and my son in law has been brilliant. So many more people out there struggling. I really hope you and your family get some support. Sending you hugs x