My experience of a haemorrhage stroke

[Winkie Ankler]

Around the time of my haemorrhage stroke (August 2018) I was exhausted and living on adrenalin for several months before it happened. My husband had been diagnosed with a brain tumour a few months earlier and had undergone his craniotomy to remove it in early July ‘18. That was a success, but he had some serious complications in the month following his surgery, which included sepsis.

 

He was transferred back and forth between the Royal Derby Hospital where we live and QMC Nottingham where he had his surgery. In the meantime my mother (93) had had a hospital stay in June ‘18 and needed a lot of aftercare to get her on her feet again. I was her carer. 

 

Back to ‘stroke day’. It was a Saturday and I didn’t have to be anywhere until 1:30 - visiting time at the hospital. I was determined to have a bit longer in bed as my wider family would be visiting my mother that day. 

 

I woke up and about 10:30am decided to check my emails. There had been one from my husband’s neurosurgeon at QMC which I had missed the day before. He stated that he needed to transfer him back to QMC from Derby in the near future because he wasn’t happy with his progress. That was in reply to an email I had written to report I’d been worried about his progress.  His reply had been delayed due to the holiday period.  When I read it I began to cry, and felt a certain panic because I had missed his email earlier.  

 

I was very disappointed because at last he was in Derby, where he wanted to be. It would be less driving for me.  I leapt out of bed and tried to get dressed ready for another transfer - again.   I just couldn’t function with my clothes. I stared at them, not really knowing what I had to do. I presumed I was in shock because of the email.

 

I went downstairs to make myself a cup of tea, hoping it might ‘snap me out of it’. I found spilt milk on the floor. I still have no idea how it got there as I remember nothing about it. I was alone in the house. I didn’t know it at the time but I had no use in my right arm. I had just forgotten it existed.  Again I didn’t know how to mop up the milk. I just stared at it. I never got the cuppa in the end.  

 

My son had arranged to meet me for visiting time at the Royal Derby. He phoned to confirm, but I couldn’t seem to get the words out to explain about the transfer to Nottingham.  Sensing that something was wrong he came straight round to see me. None of us have any experience of strokes so he thought that I had overdone it lately and was having a nervous breakdown (the most likely scenario).  He drove me straight to his house where I could be cared for, then went to visit my husband. 

 

For the rest of that day, and the next day, I still could not get my words out and I could not manage to put on my clothes myself. I couldn’t hold my fork at dinner. They invited my mother and a friend of theirs who is a psychiatric nurse to Sunday lunch to see if she thought I was having a nervous breakdown.  

 

During her visit the Royal Derby phoned to say they were transferring my husband shortly to QMC. We delayed lunch to allow my son to go with him in the ambulance. Meanwhile I was left with my mum and Angie, the psychiatric nurse.   Angie found it very difficult because she had never met me before, so she couldn’t really tell if I was any different from ‘normal’.  She suspected I might have something neurological going on because I wasn’t using my right arm at all.  

 

When asked I just dismissed it, not having realised there was something wrong. She dialled 999. Even the paramedics didn’t realise it might be a stroke (as far as I was aware).   My son, having just arrived back from one ambulance trip, found another ambulance outside his house. He escorted me to A&E in the second ambulance trip of the day.  First his father, then his mother!

 

It was only after I’d had a CT scan that anyone realised for sure that I’d had a  haemorrhage stroke. That was on Sunday evening by then - some 33 hours after the stroke actually happened. I was transferred to HDU on the Stroke Ward. Whilst on the ward - some four or five days later - I had a seizure 30 minutes after being moved to a ‘normal’ ward within the Stroke Ward. I went back to the HDU for a while.  

 

I cannot praise highly enough the care and attention I received on that ward.  It is a fine example of the NHS at its very best.  

 

Today most people wouldn’t know I’ve had a stroke. I occasionally suffer with fatigue and its side effects if not managed well, and ‘twinges’ in my head, like nerve pain. I’m not sure of their cause. I’ve taken redundancy recently so at age 65 I have officially hung up my hat and retired - as of yesterday.  I’ve improved so much in the last 12 months that I can finally enjoy my retirement and relax. 

 

PS. A word of thanks. If I had not had such amazing support from both my daughter, my son and my daughter-in-law who immediately started caring for my mother - who all put their lives on hold to sort me and my husband out, and my long-suffering husband for his endless patience, I wouldn’t have done as well as I did with my recovery.

 

Thanks go too to my friends from my church popping in with meals and flowers, and all the neighbours who looked out for us when we needed help with things like keeping our garden tidy, mowing lawns etc. and my colleagues from work who allowed me some slack when I was getting overwhelmed.  I thank God for my stroke, without who I would not have known the wonderful support of my family, friends, neighbours, colleagues, Headway and the NHS. 

[subzero]

 

Good afternoon and a warm welcome to BTG.  You will find much help and support from members of a wide mix of ages and degrees of brain trauma severity. Reading their experiences will be invaluable to you as you deal with your own recovery.

 

The stresses of your husband`s brain tumour surgery, then dealing with your own brain haemorrhage will have been such a dramatic and emotional time for you all. It is great to hear that it has brought you family and friends together as they have sought to support you both in these early days.

 

Your decision to take immediate retirement will certainly increase your recovery chances. 

 

Twelve months on you will be adjusting well to any restraints caused by your bleed, and I am sure that you will still be trying to improve too. Being patient and accepting change is so important.

 

Please continue to post with your thoughts and any questions you may have, and take time to look into the BTG  Green Room to follow the daily light banter from our members. 

 

Best wishes to you and your husband.

 

 

Subs

[Swishy]

Hello and another welcome to BTG...My goodness you and your family have been through quite a lot.  You certainly had a wonderful support group and wonderful medical health that helped you through all this.  Reading that you are able to enjoy your retirement and relax...how wonderful, I know we have never met but I sit here in USA happy inside for you.  

 

"I thank God for my stroke"...I am very moved by this...as it let you see what wonderful support you have....

Your letter is very inspiring, thank you writing and I hope you continue to visit BTG...you have much to share .  

I feel like I am looking for the good that came from my stroke...sometimes I think I see it but it seems illusive and I am unable to hold on to it...

 

I wish you and yours all the best health and joy in life..

Jean

[Winb143]

Hi Winkie,

 

We go through this and I realised what a good family I had 2 of my sisters sang to me, Hubby and Daughter took it in shifts. 

 

After my bleed I had 1 year of getting Ventriculitis  UTI and then Sepsis..They say I spoke but never made much sense, still nothing changes xx When eating food in hospital I thought I was in a cafe with Daughter and silly things my brain only kept me in good times.  

 

You have had a bad time of it also so be of good heart sing and smile whenever possible, as my Brother when he knew I was going to be okay, he visited me and we sang all old time songs as we did as kids.  Hope all is well for you now and hubby is getting better.  Wishing you all the best and hope to see you in Green Room one day ..This site is a good place to give vent to feelings. xxxxxx 

[Daffodil]

Support, advocacy , care and love are crucial parts of healing and adjusting post a brain event as significant as a SAH. It sounds like you are surrounded by all this and so continue to embrace this and ask for help when you need it and give yourself the time you need to continue to improve and build 

stamina.

 

i hope your mum and husband are both doing well .

 

[Winkie Ankler]

Thank you Everyone (Swishy, Subzero, Winb143, Daffodil) for your good words. I am having to learn to ask for support, help and advice etc. because I have always been proud to be independent. I have found that it was wrong to be proud of my independence. It doesn’t allow people to be blessed by helping me. I have to ask for and accept the help when I need it. I think it is giving me more humility - and I feel better for it. 

 

Thanks for asking about my family. My Mum has recently been diagnosed with Vascular Dementia so is living in a care home now which is near my own home. My husband had another bout of Sepsis a few months ago, and heart failure and cardiomyopathy so will have a pacemaker with a defibrillator fitted in the near future. He is hoping, and looking forward to, his  va-va-voom (energy) returning, but has already made great progress so far. We are both determined to make the most of our retirement. 

[Winb143]

Perhaps one day Winkie, when you feel okay we will see you in Green room it is under Forums.

 

Sounds like you have enough to keep you going for a while though !! We are here for you if you need to chat.

 

So good luck to you and yours  xxxxx

 

Win xxxx