Dead woman walking

Hi Joanna

i couldn’t read your post without leaving a reply, I too lost My husband but to pancreatic cancer in January, he fought for over two years and could also only have chemo as in was incurable and had spread, his diagnosis was such a traumatic time and the anticipatory grief is crippling and exhausting, luckily he was tolerated the chemo well and we had a good couple of years. He was 55 and we also have 3 young adult children.

You are in such early days of your grief I don’t really remember the first few weeks but know I was left with the deep fear of not knowing who I was without him and how I could carry on, mixed with that was the relief he no longer had to fight and I no longer had a life of hospitals and worry.  Take one minute at a time grief is messy and there is no easy path just be kind to yourself.  
Vicki x

Thank you so much for your response Vicki, I really appreciate it. I think I'm suffering from exactly the same problem I had throughout my husband's illness which is that I just couldn't stand the fact that I couldn't 'fix it' and protect our family. It's illogical but I just felt so awful that I couldn't save him and couldn't spare our children this pain either. You are spot on though, it's very early days. Thank you for sharing your and your husband's experience  - he sounds like a wonderful man and sound like a wonderful mum and partner to him. I will try to be more patient and accepting of the fact that it's going to take time. Wishing you all lots of strength and hope too.

Hi Joanna, I am sorry to read about your husband, and please write freely, as we are all with each other on this sh***est"  journey. 

It is so early for you, you will be reeling and overwhelmed with everything you have to do, maybe planning a funeral if there was one. The death of a pertner is a deep trajma that you dont just get over, it sadly takes time, a long time but is also unique to you. My husband died in October from a rare but aggressive sarcoma. From knowing he was going to die to his death was just over a year, it never felt like I got used to the idea. 

Just take one minte, one hour, one day at a time. Some days you may struggle to get out of bed, or eat. Some days you may feel ready to tackle something eg the shopping only to break down seeing his favourite food on special offer. I wont go into detail about how a mouldy piece of cheese left me sobbing on the floor a couple of weeks ago, but Im going to put my head above the parapet and say we have all had moments like that.

Please dont feel that you have to be strong for your children, you dont. Its ok for them to see you cry, get angry, sob, feel helpless as it shows them that its OK so they dont learn and think that they are supposed to bottle it all up. Thats my view anyway. Be there for each other, in whatever way you all need, and of course their grief will be different from yours and each others.

Chat here whenever you need to, we are a decent bunch.

Hugs to you x

Thank you so much Malengwa, you have had to go through so many painful anniversaries/solo events already i'm sure and i'm so sorry to hear that your husband was taken from you so cruelly by sarcoma. The time between knowing the end is coming and it actually happening is so bitter sweet - trying to make the best of even the smallest pleasures but ultimately knowing they diminish by the week. I really appreciate your advice also about not having to constantly be some kind of rock for the children. I have cried a few times already in front of them and it doesnt seem to phase them so far - I am sure they will tell me if they feel I am oversharing or if they just don't want to think about their loss that day. I had such a huge resistance to telling people also because I was worried they would say something inadvertently that would make me lose my composure but now there is no choice and most people are actually quite kind. I did have a few occasions where someone that i'd told that my husband's terminal diagnosis about would write to ask me how he was doing ending by saying 'I hope he's going to feel much better soon' which just left me thinking (eh?! WTF are you talking about ?!) but I guess people just have busy complicated lives and are doing their best. I actually don't mind when people cry now either when I tell them that he's gone as it gives me a chance to do it too. Sending hugs to you also and thank you so much for your kindness and understanding. 

Hello Joanna, you really are so early in your loss, although when we know whats coming and go through what I now understand is Anticipatory grief it still hits us like a brick. I was in shock after my Husband left. I think I had gone into shock even before his last day. Although I didn't realise it with trying to cope with it all alone I had shutdown. I was going through the motions . I too feel so much anger at the medical profession who I feel let my Husband down. Is it complacent or lack of experience that they cannot see something is very wrong and didn't try to do more to save our loved one ?? I'm also angry with myself for not seeing the signs as my Husband kept a lot to himself as he had been so ill for so many years with various health problems. I think it's possible we were both in denial . He said many times he didn't expect to have a long life . I regret that we didn't communicate better. I was trying to hold everything together while he was trying to cope with his pain and loss of control of his body. I get what you mean about thinking /believing their presence somehow even when separated by their demise. I think of him constantly in everything I do and sometimes feel like hes haunting me . I don't buy his favourite foods as I can't bear to see them . I can't have his photos out although they come up often in memories on the computer. I have no videos of him. I accidentally deleted the last text message we had on the phone which really upset me . I don't know how to reassure you . or in what way you want to be reassured. We can only take things i day at a time. Do reach out for some bereavement therapy , it can take time to get it. but it does help although I really don't think there is enough support for the grieving . Unless we can pay and in my case I can't . For me it's now 15 months since my loss. And in some ways I feel like I've gone backwards in my grief. I still cry every day. I still beg to have him back with me . My guilt is that I feel I didn't do enough to stop him dying . There are so many emotions that we go through. Many I wasn't prepared for. Nobody tells you about the Anger , resentment, Jealousy of what others appear to have that we have lost. Loneliness and deep sadness and despair we expect. I have found some of the Podcasts on You tube helpful mainly from those who are Widows and really know what it's like . Karen Sutton and Krista St Germain are easy to relate to I find as they say it how it is . Worth listening to them when you feel you need some reassurance than no you are not going mad with all these Tsunami waves of overwhelming emotions. I hope you have some good support around you. Cx

Thank you so much for your very kind and thoughtful reply C. Everything you say resonates with me. I think the lack of competence and care in the consultations that our husbands had initially was definitely compounded by the fact that they did not want to worry us and kept a lot to themselves. At the time, I was also dealing with a pretty dreadful boss and my mum's needs daily after she'd been diagnosed with Parkinsons 8 years previously and was becoming increasingly demanding. Coupled with his demanding job and three teens it did not leave much time for us and I know we both felt feeling exhausted and overwhelmed had just become normal. But I still feel guilty about not pushing him more to get second or third opinions. When we did get test results back initially I was so relieved that all seemed fine and I just thought - thank god for that - now we can get on with dealing with all our other responsibilities. I confided in a friend recently that I had always thought I would feel him with me even after he was gone - but I don't. All I feel is a huge void and his absence. She said "well then he is with you because you miss him, you feel the lack of him and you think about him all the time". I will try to tell myself what I am telling you now which is that you did not let your husband down. Even though you were emotionally exhausted and in deep shock - you were there, you were present and that you carried on even while being crushed by a mountain of grief for the beloved husband and companion whose disappearance you had to witness every single day. Thank you so much for your generosity of spirit, your honesty and for your kindness and sending strength and love wherever you are. Jx

Hi. I wanted to reply to your posts, if only to let you know that other people are listening, and that we all feel your pain. We are all in a terrible position here - but talking, and sharing, definitely helps.

JoannaM said:

But I still feel guilty about not pushing him more to get second or third opinions

I have similarly been tormented by the "what if's", and "if only's." But ultimately I don't think they help. You did your best; we all did - and so did all of the medical staff involved. Cancer is a shitty, pernicious disease, and I am convinced that its occurrence, progression, and final outcome, is mainly just down to dumb luck.

JoannaM said:

I confided in a friend recently that I had always thought I would feel him with me even after he was gone - but I don't. All I feel is a huge void and his absence.

That's how it is for me as well, unfortunately: all I feel is the absence. The only time that changes is when my wife appears in my dreams. That doesn't happen very frequently but, when it does, it's lovely: life briefly seems normal again. Until I wake up ...

But, beyond that, I know that we all just have to try to keep going, take one day at a time, and keep putting one foot in front of the other. When I feel down - which is very often - I try to tell myself what I know that my wife would be wanting and expecting me to do. She'd want me to get on with life, and make full use of whatever time I myself still have. And I am certain that your husband would both want and expect the same for you. That's the way it has to be - so my way of looking at it is that we have a duty of love to carry on, and try to build productive lives, in loving memory of those we have lost. I realize that all that sounds like one massive cliché but still - I know in my heart that it's the right aspiration. So: keep going!

I send you my love and best wishes.

Hi PTP, thank you so much for your reply. You're absolutely right and unfortunately its a feature of this appalling disease that it can be so hard to detect - until its too late. The misdiagnosis and the late detection were the ultimate reason that nothing much could be done but it was the fact that the specialist my husband saw was so dismissive and made him "feel like a deranged hypochondriac" that keeps circling around endlessly in my head. I've often thought of making an appointment with him myself and telling him exactly what I think of him - but what good would it do - and i don't know that I have it in me right now. It's an utter random miracle that any of us are here in the first place and many of us are only still here through the dumb luck of being born into a hospitable environment  - so you are right on that count too  - and for that we also have to count our blessings. My husband didn't really say much (or in fact anything) about how he wanted me to go on after him - but I did promise that I would try to be as supportive and present as I could be for our kids so that's my only goal at the moment. None of what you say sounds like a cliché to me, just incredibly thoughtful and insightful advice which I am so grateful for. Sending love and best wishes to you also.

JoannaM said:

The misdiagnosis and the late detection were the ultimate reason that nothing much could be done but it was the fact that the specialist my husband saw was so dismissive and made him "feel like a deranged hypochondriac" that keeps circling around endlessly in my head. I've often thought of making an appointment with him myself and telling him exactly what I think of him - but what good would it do - and i don't know that I have it in me right now.

I'm very sorry to read that. I think you're right that telling the specialist exactly what you think of him probably wouldn't do any good but, in due course - and if and when you can summon the energy - there very well might be value in registering some kind of written report or complaint. I think the first step would be to write a note which carefully documents the entire time-line, and all the things which were done well or badly. When that's composed, we can figure out to whom it might be submitted.

I say that because it's what I myself did. My wife's care was generally very good, and I have huge admiration for all the medical staff involved - but things went to shit on the final night of her life, and that situation was handled very badly. That haunted me for months after the event - it still does - and I will never know what my wife was really thinking. But I decided that I needed to try to lance the boil by writing a submission to the staff involved, which I did. For me, the act of doing so felt like a duty I owed to my wife. But I also did it for myself: had I not done so, I would have always felt like I should have done. Mine was not a 'complaint' per se: it was really intended to document the things which had gone wrong, in the hope that they wouldn't be repeated for somebody else. I don't know if it helped - but I tried.

While I think recording when you think things have gone wrong and communicating that to hospitals and other health care professionals is good advice - we did so during my husband's treatment and I also sent an official complaint afterwards - you have to be prepared for a response that you might not expect. I think we hope that hospitals will read what you say, reflect, accept where care fell short of standards, and act to mitigate so that whatever might have gone wrong won't happen in the future. In my experience, the system (PALS Liaison), far from operating impersonally and objectively, is designed to protect the medical professionals by either not answering the questions asked or providing information to deflect from the actual criticism. The procrastination in responding is awful: I requested my husband's medical records 13 months ago - target time to respond is 30 days. I've had to involve the local MP but have still not received them. This does nothing but relieve my suspicion that the hospital is trying to cover up the actual cause of my husband's death, which I believe was from an infection he had had, untreated by the medics despite requests, for 9 months, which became invasive. And yes, we were also made to feel that we were making a fuss and should be concentrating on the important stuff, like the cancer.

Sorry to rant - it was the second anniversary of his death two weeks ago, and it's all still very raw.