Hello its 1.49am and another night where I cant sleep, analysing everything over and over.
It was my husbands funeral on Tuesday 3rd March 2021, my brave warrior died a month ago 3/2/21 after a short brave battle…7 weeks before his death we found out he had 2 brain tumors after just 2 weeks of suffering bad headaches. 3 weeks before he died we found out just how rare the tumors was and sadly no treatment available.
in The 7 weeks we made lots more happy memories for our children aged 16, 19. 25. and 28. My hubby was 56 and so full of laughter and life and was my soul mate of 27 years …married for nearly 23 years.
we had so many plans , feels like it isn’t real, a bad dream and you wake in the morning and for a split second everything is normal then it hits you…nothing is normal our life will never be the same.
we was a close family with the 3 youngest of our children still living at home , we shared lots of fun adventures.
We had a special last Xmas and New year together even though we found out on Xmas eve the tumors was life limiting but we was told a chance to prolong life with aggressive chemo and radiotherapy, we broke the news to the children that evening . he was booked in for a biopsy on the 30th December and was home on new years eve… from then it was a waiting game for the biopsy results…to then find out they could get no histology results the pathologist didn’t understand why etc…there was talk of going in to take a second biopsy from the bigger tumor that was deeply inbedded in the brain. we then received another call on the 12th Jan to ask us go back for a meeting we was told the devasting news that the biopsy had been sent to other labs and they have discovered they was very rare Plemorohic spindle cell tumors that arnt normally found in the brain and possibke sarcoma of the central nervous system. we was given the news of no treatment and not enough is known about these type being in the brain…and told he had just months to live .
He was determined to fight the gremlins as he nicknamed them for as long as possible, we was lucky we was able to fully care for him at home and was able to spend his last weeks by his side.
we do take comfort in his journey as he called it was only a short one with brain cancer. he deteriorated on the Friday and died on the Wednesday . I’m angry so angry though as them last few days was a battle to try to get his steriods increased to give him a fighting chance as his brain pressure was rising and his steriods was lowerd the week before …from the 12th finding out only months to live it was a battle to get the support to visit with equipment…the district nurses and pallative care nurse…days ringing round to keep being told we will come out. then not doing…finally after 4 hours on the phone they came out the next day…the hospice pallative care nurse only visited twice whilst he was still up and about …never came near when the seuzures slocked him in and he was paralysed and bed ridden…kept being fobbed off that covid was making them so buisy etc.
no support for the children or me whilst caring for him, watching him die…I’m so god dam angry… angry at myself to…did I do enough did I fight hard enough for him .
He always said he felt privileged to be able to help prepare us for what was to come, he told us he chose live, love and laughter rather then sitting in a dark room . He wrote in journals each day…his feelings and we was told they was for us after he died…those words he wrote we will cherish for ever.
we carried his wishes out right to the end of his journey…but I thought I could save him and i feel like I’ve failed.
we so miss him so much…its the kids that are keeping me going that makes me want to wake up each morning…but I feel like I don’t know how to go on how to function as 1 parent as a person without my soul mate.
Hi Feeling Lost. I am so sorry you lost your husband to this very cruel disease. He was young and had so much life still to live. You will feel lost for a few months yet.
Your circumstances almost replicate mine. Bill came home from work on the 9th January last year with a headache and lethargy. By the 17th he was getting more headaches and was a bit confused. I took him to the GP on the 20th and she sent us up to the hospital for tests. That was at 11:30 am and at 5:30pm the consultant told me he had terminal cancer in the Brain, Lungs and Stomach. How could a man fit enough to cycle 4mls to work just 11 days earlier be riddled with cancer. He deteriorated fast and 3 days later couldn’t even remember my name, work his phone or tell you what was wrong with him. That’s when I lost him 
. He was admitted to the hospice on the 29th as started being sick. The pumped him full of steroids and lasted exactly another month, he died 29/02/20. We had only been together 12 years and married for 2.5yrs. He was only 64. He was my best friend and soul mate and like you we had so much planned for the future. Covid has not helped although we did manage to have his funeral attended by 350 people. Our 4 children are all away from home as in their 30s so on my own.
It does get a bit easier but then you have a bad day and it seems raw again. It is like a very bad rollercoaster that you want off but can’t.
Please feel free to message me if you want a chat.
Sending big hugs to you and your family.
Shona xx
Hi angiecb
So sorry for you lost.
Sorry you are feeling the raw pain, numbness and dispear, having the funeral of our loved one is a feeling who nobody can describe.
I am afraid it is the beginning of you new life, but embrace the love he gave you and recall he wrote for you. When you feel weak recall how brave he was and the effort to leave you word of love and encouragement for your family.
Xx
Hi angiecb
Just joined on Friday and disappointed so far no response to my post but surprised to find brave people like yourself on here who are very much in the moment and reeling from the shock of it all. I lost my husband very suddenly in 2005 and my partner of 14 years at the end of October with cancer. Both very different circumstances and experiences but with a huge sense of loss,sadness, and loneliness. Your anger resonates with me and like you we were let down by the services that are supposed to be there to carry you through such a terrible experience. My heart goes out to you and your family. Take comfort in those few weeks you had which have given you such wonderful memories and be proud that you did your very best. Thinking of you all xx
Thank you so much for your kind words, im so sorry to hear that you also have lost loved ones to this terrible disease .
I’m trying not to let the anger eat away at me…I’ve never felt such heartache like this, im trying to be strong for the kids…they are being so brave…was my 16 year old daughters first day back at school today, she wasn’t ready, I wasn’t ready as its only been a week since the funeral but she was brave and manged it, I was a blubbering wreck all day.
Do you find time time was the worst part …feel so lost I don’t know how to function.
tommorow I pick his ashes up …there as been so much to sort out I feel like I’m drowning in paperwork and desciouns that I’m not used to making alone.
I want hubby at home …the kids have said they support what descioun I make…a little of his ashes will go to Wales at our favourite spot with a memorial bench and today myself and daughter went to pick a cherry blossom tree up to plant in our garden and we are going to view some garden memorials on Wednesday.
Everything feels overwhelming. some of hubby’s family arnt happy that we arnt having his ashes buried at the cemetery or a headstone etc…so I feel torn in what to do for the best.
feels like now the funeral as been its hitting us all at once…the heartache, the missing him so much. the anger at the services , the worry fir the kids etc. xxxx
I’m so sorry you have also had to go through a similar journey, im sorry for your loss of your husband.
I cant get over how quick everything as happened. he only had headaches for 2 weeks before I took him to casualty on the 17th dec . the gp kept fobbing him off in them two weeks, even though he was suffering headachesup to 9 times day. surley that should if been a red flag. They also pumped hubby full of strong steriods to take the brain pressure down…he was discharged the day before xmas eve…and we was put under the care of the nuerosurgeons at salford who was brilliant …but just didn’t know enough about how rare the tumors where…the 12th Jan when they explained he only had months to live. he was still walking talking eating …the steriods was keeping him stable…when they tried to drop them they caused the oressureto ruse again and I rushed him to casualty at salfjrdwhere the neuro surgeon was based they upoedthe steriids again and he stabled out. but once he was then dis charged to the care if the community team…they dropped them again. and he detrated fast. seizures…then ended up having a big seizure that left him unable to eat. move see ir speak fir 4 days before he died…I begfedfir the steriids to be upped but sadly it was to late . I coukdnt up them he was on a pump driver by then…salfird agreed they should be upped to give him a chance but the community team wasn’t happy to give him such a high dose.
I have so many questions I have unanswed over the type of rare brain tumors he had… the only report we may get is from the brain bank as hubbys wish was to donate his brain to science so they could learn mire about that type of brain cancer…in his memory we have also raised 860 pounds so far for brain tumor research.
I’m sorry…I’ve done it again…telling my story in probally to much detail…I seem to be making a habit of analysing it …is it shock…confusion…his family tell me I need to stop it as it helps no-one…the family who wasn’t there when we needed help when he was alive. or wheveven hubby was dying but feel they now have a right to judge how I grieve…Ir feel that they can comment on whrte his ashes shoukd be laid to rest even though we want him at home, im so dreading tommorow…picking hubbys ashes up…but also dreading the calls and visits trying to persuade me to do things there way .
I hate how angry I have become at others
I feel like I failed him…I cant get that out of my head…I feel like they are judging me…some had plenty to say about what funeral he shoukd have…he warned me before he got really poorly if how bad they may become.
I’m sounding so horrible…I’m so sorry xxx
Dear Angiecb, im so sorry for your loss on top of your mourning you are having to contend with the rest of the family. I would suggest you keep your beloved’s ashes at home for now, when you feel stronger and feel able to, then make a decision what you want to do. Dont let the family bully you into doing what they want. You TELL them what you will be doing. You need to come to terms with your loss, and by the way, talking and getting your story out is important to your healing process as us crying too. In fact the more you do it, the better it is for you. Also coming to this site will help you too as all of us are in the same boat. My Husband passed away 9 months ago from cancer and we were married 38 years, and i have bad days and some good ones. I find it difficult to sleep at night. Take care, Margarita xx
Dear Angiecb
What your husband’s family feel is irrelevant. My in-laws had an opinion on the service etc but I know that I (and our kids) did everything that I wanted in terms of my husband’s funeral. I have made the decision regarding the ashes. Only thing I am struggling with is that daughter wants some of her dad’s ashes for jewelry. I know lots of people do and not knocking it but worried that if she ever looses it she will be heartbroken all over again - so still undecided.
Take your time with the paperwork and any decisions you have to make. Most organisations will understand.
Take care.
Sheila xxx
Thank you for your reassuring words.
Things can feel so overwhelming cant they.
My daughter as askd fir some to be put into jewellery and I also have a worry she may lose it then be heartbroken.
My hubbys mum as askd for some to be buried with his dad…which I can understand as its his mum, just feel uneasy that that will become his shared resting place for his family to visit. .at the moment I’m not comfortable having his ashes split. if that makes sence but will respect his mums wishes.
We gave hubby a wonderful send off…he was a big buddy holly fan and a collector of buddy holly music so the children picked a bespoke coffin for him…buddy holly theme and he loved 1950s Cheviloet cars…so we organised for a 1949 red Cheviloet pick up to carry him to church…it was keith , he loved his music and cars from the 50s era and we wanted his last journey to reflect the fun person Keith was…sadly it was faced with some negativity as it wasn’t traditional enough.
Im now Learning to concentrate on just mine and the children’s emotions and not try to carry everyone else’s emotions to…which in the last few weeks its felt like that with people visiting and myself and the children having to comfort them…or battle over funeral arrangements as we wanted to give Keith the funeral he wanted not what family who hardly knew him wanted.
I couldn’t help but sit and think where was these people when we all needed support when hubby became ill or received the devasting news…and now it feels they have all disappeared back to there lifes…no calls …no support…just silence.
I’m so lucky as I have the children well young adults but makes me feel sad as before hubby died he tried his very best to reconnect all his family together…and he said he was trying to make sure there was a protective arm around us.
I know his family will also be in shock and grieving to and maybe struggling. we’ve tried to reach out over the last few days but I guess hubby was right. some people are stuck in there own ways and lead buisy lifes or maybe I have drove them away with my negativity.
Thank you for listening xxx
Hi Angie. Why don’t you do what I did. His mum wanted to scatter him at his dads grave and I wanted to go to out favourite place and scatter them at sea (he was in the Navy so felt I was sending him back home. We split then (undertaker did it for us. There are a lot so had plenty each. I went with his mums and sisters and son to his Dads grave but then I went on my own up north.
Solution for everyone.
PM me if need to ask anything
Sending hugs as know what state I was in when I picked him up. I was in bits.
Shona x
Hi , Thank you for your reassuring reply.
We are splitting some ashes for his mum and some for us to take to Wales at his favourite spot and the rest of the ashes are staying home with us.
I had a good chat to the undertakers and once our son as finished the bespoke ashes casket for his dads ashes we will return to the undertakers for some ashes to be split… I was going to do the scatter tube ones today but the undertaker could see how upset we was .
I’ve had to let his family know that the ashes haven’t been split yet…as I was to upset today. and wanted them split just the once not having to keep taking hubby back so makes sense to wait until son who’s a joiner as finished the ashes casket and the weksh engraved slate for the top as arrived
They was expecting them today they said they presumed I would have the scatter tubes filled today and wasn’t happy they have to wait…I feel like cant win.
xxx
Dear Angiecb
You are already going through so much. As you say just start to concentrate on you and your children. Leading up to the funeral I had family members constantly on the phone telling me what they wanted to be involved helping with. Asked to leave it until after the funeral - then when I went to contact them either no answer or too busy. My son, daughter and myself have just had to come to terms that they resigned ourselves that this is how it will be from now on. Please do not blame yourself for driving them away.
I will wait to see what my daughter decides nearer the time. But I do want to avoid her being unnecessarily upset.
Take care. We are all here to support each other as we walk this difficult path.
Sheila xxx
Good call. His family can wait. It’s your husband so you tell them. The scatter tubes are good as bills mum wanted a nice bag but they went everywhere. I was just shocked at how much you got. I was in a kayak in the North Sea at Cromarty try to stay afloat and do it at the same time. Looking back now I hope no one saw me as was so upset I didn’t beach the kayak properly and it started to float away as I was getting out and I fell in. Wasn’t funny at the time but now 7mths later I can smile. Hope it brought a smile to your face too.
Take care
Shona xx
Told one day-24 days later my Husband died from stage 4 terminal cancer.no pallative care until 2 days b4 he died. absoulutely gutted.devastated.no care for family.
Everyone here will support us 
Dear askitcat, I am so sorry I only got 40days. Went to the gP with headaches at 9:30am and by 5:30pm we were told he had weeks to live with brain, stomach and lunch cancer. He was 64 and we’d only been married 2yes but this group has helped me get to a year later and it will help everyone else.
Take care
Shona
I’m 53.Gordon was 78.together for 16 years.married for 8.all we can do is remember special and happy times we’ve all had:kissing_closed_eyes:
x
Special times x
No dispute to where my husbands ashes being scattered.my choice.put in his favourite place.surrounded with his special friends x
Hi Angie. Know we only spoke yesterday but have felt bad I haven’t been able to respond to you today as I have been on a 13.5 hour shift in my role as a charge nurse in a care home. So pleased though that you have been able to find like minded people and tell your story as it’s really important to keep talking about what happened as when you don’t you keep everything inside and might start to doubt your own sanity.
How do you feel after picking up Keith’s ashes?There’s both a comfort and finality in this I think. I went and collected my partners ashes on Christmas Eve as it didn’t feel right leaving him in the parlour for Christmas and he is up in the bedroom and don’t plan to scatter him for a few months to come. I talk to him and give him a cuddle here and there but desperately sad that I don’t feel his presence and maybe want this too much.
Having been through this twice ( my husband had a heart attack and my partner cancer) I know that first time round like you I had kids to put out to school 9,10,18 and felt the need to put everything in order pretty quickly which I now regret. Give yourself time and don’t be pressurised by anyone least of all the people who have been the least supportive through your journey.
Like you I feel let down and felt that if I saw another flippin advert about all the cancer support out there I could scream cos it was invisible despite us both being nurses and having a bit of knowledge of the system. I now have a clinical negligence case against the hospital and GP and have an admission of liability in writing from the hospital which helps me channel my anger.
I am 4 and a half months down the line and still feel raw and overwhelmed at times. It makes it all the harder with the current restrictions and there is so much to deal with when you are in shock and grief. I agree with others who have responded to you. Try not to rush into things you may regret. Stuff Keith’s family and do what feels right for you and yours. Take time to rest and recover. I have given myself the label of becoming a blob sitting about staring into space and watching crap on telly but now realise that I need this just to get over what has happened and come to terms with it all and what life may look like in the future.
Hope you find comfort somewhere. My thoughts are with you and your family. Take care xx