Bunny who?

Why? Who? What's this blog about? It's about MEEEE!

Being a Widow

My experience of dealing with grief as a widow


About Jane's brain tumour journey: Astrocytoma.co.uk

Back to hospital

04 August 2011

The hospital. You did not die there but it was the start of the very last stage of your journey. I had to go there today for a chest x-ray. It seems I have done too much exercise, trying to keep busy.

Jane waiting in A&E in April
As I cycled up to the hospital, I braced myself, knowing it might be hard. But it was worse than I thought. I cried as soon as I walked through the doors. To get to the x-ray department, I had to go through A&E. The same A&E you waited 4 hours to be seen after your seizure in April. Past A&E, past emergency CT where you had your second fit of the night. Past the Emergency Assesment Unit where you spent 3 nights. I stood in front of the double doors of EAU for a few moments, remembering. From where I stood, I could see the bed you were in. Tears were running down my face.

I tried to compose myself as I walked up to x-ray reception. As soon as I opened my mouth, my tears started again.

"I...need...a..a...chest...hexrahaaayy" I wailed at the receptionist. She looked at me with an expressionless face. She did not speak. I tried to tell her that my GP had booked the appointment for me and she must have understood because she got my name from the screen. I was worried that she might think I was so upset over a ruddy x-ray so I mumbled that I had not been back to the hospital since the death of my wife. Her face remained expressionless. Had she not heard my sad story? Or had she heard it but not really cared? I did not want to repeat myself, in case she would say: I heard you the first time.

The couple in the queue behind me looked puzzled but did not speak. I was desperate for someone to talk to me. For someone who knew you. Someone who would walk up to me, say they remembered you from when you were there and would sit with me whilst I talked about you. Someone who understood. Failing that, I just wanted someone to ask what was wrong.

Instead, I took a number of deep breaths and managed to stop my tears after about 5 minutes.

X-ray done, I cycled home, away from the hospital. In tears.

I miss you.


Julie said...

I was walking along an uneven footpath at the university today, on the way to the hospital. The light was dappled through the trees, playing tricks with my eyes. It was slightly uphill. I stopped, and held onto a small sapling. A woman, who must have been maybe 8 steps behind, turned to me and asked if she could help me. I smiled at her and said 'Thanks, but I just needed a rest.'

Earlier, as I got onto the 380 bus across from the Post Office in Paddington, I noticed a young girl get out of the first seat and move down towards the back of the bus. We smiled at each other.

I am not sure how these relate. I just thought you should know.

Dutchcloggie said...

I know there are kind people in the world who would offer help. I just wasn't lucky enough to encounter them when I really needed them yesterday. Better luck perhaps next time. Glad you meet nice helpful people though. I can not even get my college tutor to call me for 5 minutes to discuss my application for my biology course. So now I can not go on my trip to Oz before the course starts.... Been chasng him for 3 weeks and they keep telling me he will call. So much for nice people....

jo said...

Im struggling how to post a comment on this so apologies if you get lots of the same things from me.
I am really sorry to hear of your loss and the tough time that you are having. Sometimes those that we expect to be there for us just arn't. People also dont seem to appreciate that certain places, objects etc can trigger such painful memories. I'm sorry that your friends and family didnt realise the significance of your hospital visit and be there to support you.
Like you my wife recently died of a brain tumour. Its a tough, horrible journey for those with the illness and those who love them.
I hope your tutor contacts you soon. Have you thought about leaving them your mobile number and go to Oz and not let on!
I am hoping to go to Oz in February but the price of tickets is terrible at the moment.
Sending you my best wishes

Dutchcloggie said...

Hi Jo. I am so sorry for your loss. Yes, brain tumours are beyond evil. They rob your loved one of their body AND of their minds.
Thanks for the kind comments. I did not tell anyone about my hospital visit yesterday. It will be even harder on Monday when I meet Jane's oncologist who will explain what happened in the lat 12 months of her illness. I shall be crying then....

Julie said...

Can I tell you what I have learnt from Kirsten with regard to this sort of appointment? Going to anyway.

She would write down (and take with her!) an exhaustive list of questions to ask this specific doctor. She may not ask them all, but they would cover everything she needed to know on the topic.

Furthermore, she would write down what she hoped to achieve by having all these questions answered.

The human brain is wierd. You can have all your questions answered, and still not feel as though you have made any progress. So Kirsten gives herself progress markers - incremental ones. Ones that are achievable.

So ... what are the ten things about Jane's final 12 months that you want to know about? Don't tell me. Write them down for yourself.

Dutchcloggie said...

Done. :-). We did this throughout Jane's illness but if you don't know you are not getting the complete answer, you do not know if there is more to know and ask. I do like the idea of listing wht you want to acheve with the answer/question.

tammy wheat said...

I just lost my partner and soul mate for 11 years. She passed away nine days ago. I remember reading your blog a few weeks ago prior to losing her. I related so much to almost everything then, and now relate to it all. I am hurting so badly for missing her beyond belief. She suffered from Gliobastoma stage 4 for a year. I am amazed at your strength and pray that I can be more like you. I am still having a hard time dealing with the last day of her life, and can't stop thinking we should of begged them to give her fluids and try like hell to save her. I felt like everyone had given up, except me. I am thankful for your site, and if you have a facebook page I would love to be your friend. I live in South Carolina (US). Take care.

Dutchcloggie said...

I am so sorry for your loss Tammy. Please believe me, there is nothing you could have done better. I too wish I had pushed harder to give Jane fluids but I have since found peace with this issue. Giving fluids would have prolonged her life. Yes, maybe even for a few weeks. However, Jane very clearly stated she did not want any treatment that was only aimed at prolonging her life. To put it harshly, she was going to die and giving her fluids would have made that process even longer. I did get her fluids in the end and they made her violently ill so they were not the solution. By the time fluids become an issue, you are no longer talking about prolonging life but about prolonging death. Because once you start with fluids and artificial food, you will also have to decide when to stop giving it, as they will keep her alive, perhaps even whilst our loved ones are in a coma. And that decision would have been a much harder one to take.

I would have loved to have Jane with me for longer but I have accepted that her suffering was kept as short as possible, even if it feels like I did not do everything to save her. She cold not be saved. By nobody. I am convinced your soulmate could also not be saved. You can't save anyone from a GBM.

We are both at early stages and hurting like hell. If you need some support to vent, you could do worse than find excellent support at the Young Widow Bulletin Board. I'll be there, as will many others. You are not alone, at least not online.

Big hug.

Julie said...

... if you don't know you are not getting the complete answer, you do not know if there is more to know and ask ...

I have heard this, and understand the worry beneath it. BUT ... you know a lot. Yes you do. And you research everything. Yes you do. Asking questions comes naturally to you. But ... you must only ask them if there is something that you wish to clarify, or know. You are/were a journalist. You think like a journalist. You will know about 'gotcha' questions. Do not ask gotcha questions. They are meant to demean the person you are talking to, and end up demeaning the journalist. You ask questions to elicit information that you did not know. You are not boxing medicos into a corner. Nor are you there to show them how much you already know.

Remember, medicos are not clergy. They are not there to clarify your relationship with God, nor explain what you could have done to save your wife.

Dutchcloggie said...

I have no relationship to God, nor do I seek clarification on it. God does not exist. And if there is something that could have been done to save Jane, then I would like to know. And I don't mean sving her on her deathbed, I mean a different treatment early on. Seems a bit odd that you think my aim of going would be to box them in a corner. If a doctor feels boxed in a corner by having to answer questions and filling in some gaps in my knowledge, the problems are with them, not me.

I am going because I struggle to understand what happened in her brain to make such a fast decline happen. I don't have, at the moment, doubts about her treatment. Something happened that I don't understand, from a biology point of view and the radiologist is going to explain to me what happened. That's all. He is going to link the affected parts of the brain with the symptoms by showing their growth on the scan. It is the same Kirsten has done before her treatment. I just happen to have questions afterwards. Jane had not seen an oncologist or radiologist since they stopped the chemo in February so they will fill me in with what happened in her brain after that time. That's all I want. Nothing deep and meaningful and emotional behind that. Just need some facts to put things in their place in my mind.

tammy wheat said...

I also would like to find more reasons for my partner Diane's downhill spiral. She was so strong and within two months she became more and more weaker. The doctors never told us he only gave her two months to live, however, her mom said he told her. I fell like we were robbed of being able to talk about it, get a second opinion, and anything else that she would of liked to of done. I am wondering if Jane's progression was also in her cerebrum. That is where diane had developed small spots, but we were not aware they were so serious. Diane's tumor originally was on her left side as your wife's. Take care.

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