Page 2 | My husband has a brain tumour

funkystars123 · 2022-04-10T02:58:37+00:00

My husband had a seizure today... went to a and e and he's been diagnosed with a brain tumour.... We have 3 kids, 23, 15 and 13... they youngest are autistic and are already struggling post pandemic. I have had to leave him to come home so I can sleep and talk to the kids tomorrow. I love him so much and am so so scared

WorryMcGee · 11/04/2022 07:52

@funkystars123 we’ve got everything crossed for the MRI. My husband also struggled a lot with not being able to drive, especially at first. He got used to it eventually but it was hard. It was an amazing feeling last October when he got back in his car and drove us to Morrisons 😂

If he voluntarily surrenders his licence rather than has it medically revoked, it will be easier to start driving again - a doctor told us that and I’m glad he did because the DVLA is a shambles right now!

Original poster

funkystars123 · 12/04/2022 07:14

[quote WorryMcGee]@funkystars123 we’ve got everything crossed for the MRI. My husband also struggled a lot with not being able to drive, especially at first. He got used to it eventually but it was hard. It was an amazing feeling last October when he got back in his car and drove us to Morrisons 😂

If he voluntarily surrenders his licence rather than has it medically revoked, it will be easier to start driving again - a doctor told us that and I’m glad he did because the DVLA is a shambles right now![/quote]
Thanks that is really helpfull, going to look into surrendering his license this morning

OP posts:

southern15029048683 · 12/04/2022 07:17

I'm so sorry to hear this and the positive stories. Thinking of you all

WorryMcGee · 12/04/2022 07:42

@funkystars123 voluntarily surrendering the licence meant that my husband could start driving again one year after his craniotomy while waiting for the DVLA to process the paperwork - he had no seizures after removal and his doctor (who told us to voluntarily surrender) said he was fit to drive. He wrote us a letter after the year was up to say that, in his opinion, my husband was fit to drive and could rely on s88 of the RTA while he waits for the DVLA to do the paperwork. Had he waited for his licence to be medically revoked, he wouldn’t have been able to drive until the DVLA issued a new one - and we applied in September last year in anticipation of it being fine in October. April now and still haven’t heard a thing! I’ve heard on the grapevine that the DVLA Medical Group have delays of up to a year, so it’s worth doing.

This was the advice we got. AFAIK it is still accurate:

To continue driving under Section 88, you must meet all of the following criteria:
• Your doctor must have told you that you are fit to drive.
• You have held a valid driving licence and only drive vehicles you have applied for on your current application and were entitled to drive on your previous licence.
• If you hold a Group 2 (bus or lorry) licence, your entitlement has not been suspended, revoked or refused by a traffic commissioner.
• You meet any conditions that were specified on your previous licence that still apply.
• DVLA has received your correct and complete application within the last 12 months.
• Your last licence was not revoked or refused for medical reasons.
• You are not currently disqualified from driving by a court.
• You were not disqualified as a high risk offender on or after 1 June 2013 (a high risk offender is a driver convicted of a serious drink driving offence).

I hope you’re all doing okay x

Redkatagain · 12/04/2022 08:02

This was me almost 5 years ago to the day.

I was so scared that I was sick.

In our case, we found out that it was benign and the worst thing was sorting out that he had to stop driving for a year.

He went back to work fine although it was like having a 50 something teenager always asking for lifts to hobbies etc.

The worst part was definitely the initial shock and fear.
We made it through and you WILL too.
Writing this post has made me cry because it brings it all back.

Eventually we found out that 1 in 10 people aged 50 has something in their brain (so the neurologist said) but most people just never know.

The link w point for me was dropping the car park token in the hospital car park just after I got told.
The token rolled under the car.
Sensible and rational me would have driven the car out and pick the token up. Instead I sat down on the concrete car park floor and cried.
A total stranger saw me. He got down on his hands and knees and picked up the token and handed it to me. That was the single kindest thing another human has ever done for me and you will find support now.
You have to be strong and you MUST believe it will be ok.
I'm going to get a tissue now.

Redkatagain · 12/04/2022 08:04

And don't surrender the driving license voluntarily. It's an absolute PITA to get it back!

Original poster

funkystars123 · 12/04/2022 08:13

He has had a full body CT scan last night and planned MRI this morning.

Then hopefully home and we wait for results...

Now we know we can see he's had symptoms for a while, headaches, tiredness, and tingling in his arm which the GP said was to do with his diabeties.

They have said it's large and on the left side from the CT but not much else.

He's a bit physically brighter which I think is to do with the steroids they have given him to reduce swelling...

One day at a time.... we are very very lucky, have great friends who are being fantastic and keeping life as normal as possible for the kids....

OP posts:

choosername1234 · 12/04/2022 08:19

Thinking of you today. We had exactly this a few years ago, although it was found in a different way.
The wait for the full body CT/MRI results was a killer. Fortunately it firmed out to be a begin tumour that required nothing more than a scan every 6 months to monitor it.
Really hope your results are the same

Whyishedoingthat · 12/04/2022 08:42

Sorry to hear this news. I hope it’s something that’s easier to treat. Just a warning, the steroids can really mess up blood glucose control in people with diabetes (can also cause steroid induced diabetes for duration of treatment), so he’ll need to keep an eye on his levels, and possibly need his medication altering while he’s taking them.
Hoping you both get some positive news today.

DoleWhipFloat · 12/04/2022 08:46

Hoping for positive news for you all x

Emelene · 12/04/2022 08:48

I hope you get lots of information from the MRI and a really clear plan from the team. Lots of love to your family @funkystars123

WorryMcGee · 12/04/2022 09:18

@Redkatagain 😥 that’s brought back memories. I also did some floor sobbing - I went to make a phone call to parents in law and then got lost in the one way system and just sat down and cried. A stranger helped me back to A&E.

Re the licence - @funkystars123 ‘s husband had a seizure so he is legally obliged to tell the DVLA about it. If he doesn’t voluntarily surrender at the same time, they will make enquiries regarding his medical condition and may (most likely will) revoke the licence themselves. If they do that, he won’t be able to drive again until they have done all the paperwork to reissue the licence after the relevant time period has passed - whereas if you voluntarily surrender, you can drive straight away when you are fit again while you wait for their utterly shambolic process to finish. Totally agree about it being a PITA but it is better to surrender than leave it to chance and be unable to drive for even longer (in our risk-averse opinion!)

I’m so glad it all worked out for you x

caringcarer · 12/04/2022 09:19

Don't freak out OP. Exactly this happened to my dh. He walked to catch train to work but had some type of seizure at station and went to hospital in ambulance. He spent morning on a trolly with no memory. He did not know his name or anything except after a time he remembered he was an accountant. They rang me from number in his phone at about 11.20 and said the person with this phone is in hospital please can you come. When I got there he was in a side ward by then and they asked me about him. I went in to see him and he did not know who I was. I was so frightened. They did a scan and he had a largish tumour growing on his pituitary. He slept for 3 hours and when he woke his memory started to come back and he recognised me. He had to stay in hospital for 2 more days. He was released with an appointment to see brain consultant surgeon. He got appointment come through for about 10 weeks later. It was a dreadful wait. He went back to work. When he got to appointment they did lots of tests and found he had an issue with peripheral vision and another more complex scan. He was given another appointment and told he had a melanoma pressing on pituitary gland and optic nerves. He was told if it was left he would be partially blind within a couple of years and completely blind within 5 years. Sent away again and told would be recalled after 6 months so they could monitor growth. After 3 1/2 months he was recalled and we were told he needed surgery to prevent blindness. It was his choice whether to have surgery or not. He was told there was a risk it could go wrong and affect other brain function but generally high success rate for operation also told this type of tumour is unlikely to be cancerous. He chose to have operation which was through his nose. He got called in to hospital for op but sent home as emergency came in. He went in 3 weeks later again but again sent home as no ICU bed available. He needed ICU bed for 2 days after op. Third time lucky. He had op. He was really unwell after for about a week. He had a drain running from his brain down through his spine where spinal fluid ran off. He could see properly again. He gradually got well. He went back to work after 5 weeks. His tumour was not cancerous but there is a risk it could regrow. He has had 2 follow up appointment for brain scans and so far it has not regrown. He was so lucky as if he had not had op when he did immediately before Covid started he would have had to wait and gone blind.

caringcarer · 12/04/2022 09:23

DH voluntarily handed back driving license and he could not drive again until over 1 year after successful operation. He got all clear from brain surgeon. His vision is now better than before he had the the seizure. He could also not work more than 4-5 hours a day whilst waiting for op but only because staring at computer screen gave him horrendous headache.

Rainbowqueeen · 12/04/2022 09:26

Best wishes OP. I hope you get good news today
Remember a large size does not necessarily mean it is worse than a small one.
Lean on your friends and vent here as much as you need to.

ArtVandalay · 12/04/2022 09:30

How scary for you. Hope he can be treated.

My dh had a brain tumour. It was 13 years ago and we’ve almost forgotten about it!

MissyB1 · 12/04/2022 09:31

Good morning OP, how are you and dh doing?

OrlandointheWilderness · 12/04/2022 09:39

How did it go OP?

MakeMineALarge1 · 12/04/2022 09:54

Have you got any more answers this morning?

DilemmaOfCourse · 12/04/2022 09:58

Thinking of you OP.

Original poster

funkystars123 · 12/04/2022 16:26

Hi

We got a good result from the CT scan- no other tumours....

Had MRI today, no results until next week due to Bank Holidays.

But we are going home today which feels amazing..

His parents are home from holiday tomorrow so have to tell them and eldest daughter on Friday. That's going to be tough

OP posts:

MissyB1 · 12/04/2022 17:07

@funkystars123 yay for going home! Much better to be in the comfort of your own home. I know there’s a lot to process and you will be anxious for the MRI result, but both of you need to try and take one day at a time now.
Although it will feel huge to tell family, at least then you will have their support.

BlancmanegeBunny · 12/04/2022 18:10

I'm so sorry to hear you are going through this. I can't recommend this charity enough, their factsheets and members forum were a huge support to my aunt when my uncle was diagnosed with a tumor. You might find their website helpful too. www.thebraintumourcharity.org/

AliTheMinx · 12/04/2022 18:11

Sending so much ❤️ love ❤️ xxx

Emelene · 13/04/2022 02:38

Thanks for the update. I’m glad you’re home and I hope your family can support you both x