To be angry as well as upset and terrified?

[SchrodingersKitty]

To cut a very long story short, my DH (70) was taken in to hospital yesterday and found to have a brain tumour. He had lymphoma previously and just got the two years all clear. We don't yet know what the tumour is.

More detail: we have a shared extended-family holiday cottage in a rural, coastal part of the country. DH drove up to overlap with his brother and family in the middle of last week. When DS (19) and I arrived by train yesterday, we got in an argument about something DH had forgotten to do, and then DS asked him if he was OK and he blurted out that he had been worrying for a week about something that happened last weekend - he had woken up with bits of memory missing. He told no-one, and drove a long way by himself. This after all of the saga with the lymphoma, and numerous subsequent health episodes and scares. I can't understand why he would do this. As soon as he told me I called the NHS 111 number and they sent an ambulance to check him out. They thought he had not had a stroke - my main worry - but decided to take him to the hospital A and E to be checked out as he was worrying about forgetting things like the names of medication he was taking. Once there we waited hours as they assessed him as not at all serious. They eventually did a CT scan of the head to rule out a lesion - and they found one. They kept him in and put him on steroids and will do scans when they can manage with the skeleton bank holiday staff. They say he should then go home and into large hospital near us. (His response - can't we have our three-week holiday first?).

I am terrified - it could be benign, or the lymphoma back, or another cancer, or a secondary tumour. Clearly the last is worst, but they are all so scary. I am catastrophizing like mad, can't sleep or eat. DS is fairly calm about it and assuming it can be treated, as the lymphoma was. He is about to go off for his first year at Oxford and I am really worried about the effect on him. I just delicately broached the issue of whether he would be ok leaving in the circumstances and he said 'God, yes!', so I think he is feeling fairly robust about it, but we are all very close.

I'm sure this will elicit Mumsnet contempt, but I don't drive (anxiety) and neither does DS (anxiety and dyspraxia). This is not really an issue at home as there are good transport links, but is very hard here, where hospital is a £40 taxi ride away (each way).

Now worrying about tiny irrelevant things like how we will manage the trips to and from uni (in any scenario). To think before yesterday my main worry was empty nest syndrome. Now I am terrified at idea of an even emptier nest, and dreading the long period of everything on hold again. This medical journey was so hard last time and this seems likely to be even harder.

I'm not really angry, I don't think , just uncomprehending at DH's head-in-the-sand attitude. It would all have been so much easier if he had told us a week ago. But then again, we might well not have discovered the tumour at all if it wasn't for this set of events.

[EmeraldShamrock]

That is better news OP.
You must be very relieved for him to get treatment close to home.
I hope he has a speedy recovery.

[SchrodingersKitty]

Just an update. After some horribly anxious days of waiting we got the results of MRI and whole-body CT scans. The very good news is that it is not a secondary tumour: there is no sign of any cancer elsewhere. It could still be lymphoma, or a primary brain cancer, or benign. They were going to refer him back to our GP, but I kicked up a fuss and they have referred to the lymphoma ward at the large hospital near us, where DH is still in the system. The chief lymphoma consultant agreed to see him as an emergency.

My step-son drove us home yesterday and DH spoke to the GP this morning, who has said she will chase up the hospital this morning if he cannot get through to them. So we are hopeful that something will be arranged fairly quickly - our hospital should have the scans and will probably need to have a team meeting to decide how to proceed but he will at least be in the system. He is still taking the steroids to shrink the inflammation and his memory seems to have come back.

[Jent13c]

If you are waiting for an MRI there is usually a wee bit of a wait but I suppose you could request it at your local hospital? Probably best as inpatient rather than outpatient as it will be quicker.

While you are away from home its maybe worth asking if there is a patient hotel? We live in an area where patients can be transferred from remote areas with small hospitals and their immediate family can stay in very basic accommodation on site.

[SchrodingersKitty]

Bambalaya: you are right, I will definitely not be hard on him. He is fairly calm at the moment now he is being treated, but clearly was very scared.

In meantime, DS and I went for a swim in the sea. Very crowded but nice and calm. Physical activity was good - I've been madly feeling I'm somehow not allowed to do anything remotely pleasurable: even sleeping and eating were feeling wrong. Now a bit calmer and we are going to go to the pub - a bit of beer might help me zone out.

[SchrodingersKitty]

That's great news, Sauvignon!

[SauvignonBlanche]

That’s very kind of you @SchrodingersKitty, my treatment is all complete and tumour removed. I’m now discharged by the neurosurgeon.

It was a very hard time for my family, I do remember feeling guilty at what I was putting them through, (through no fault of my own).

[Cwtches123]

A close relative of mine was diagnosed with a brain tumour in May, he was referred to A and E by GP after a bit of a funny term/memory loss. The tumour was found on a scan. He was immediately started on steroids and referred to neurology, he was told he could not drive.

My relative's tumour is fast growing and inoperable but he has had radiotherapy. One excellent source of support has been The Brain Tumour Charity - I recommend you look up the website, there is also a closed Facebook group for carers which is very informative and supportive.
www.thebraintumourcharity.org/

I hope the prognosis is good. Waiting to know what type of tumour and treatment options is very hard.

[bambalaya]

Please don't be too hard on him. He may have been terrified and trying to blot it out. I hope you get good news x

[EmeraldShamrock]

I am so sorry to hear about your DH. I hope you get better news soon
To go off topic to say there really are some fabulous and kind mumnetters about.

[SchrodingersKitty]

And best of luck with your health and treatment too, Sauvignon.

[SchrodingersKitty]

Thanks, Sauvignon. I think this might be useful when we get back home - which is an area with much more public transport, but we still needed taxis last time he was having treatment. It is where we are on holiday that the transport is completely terrible. We tried to get help for travel for my SIL, who died at the start of the year after a long period of declining health which meant she lost her ability to drive. No luck - but we may have gone the wrong route. I'll certainly look into it.

[SauvignonBlanche]

If he loses his licence on medical grounds he may be entitled to help with taxi fares or a bus pass and given what you’ve said about the bus service that would be no use to you.

That was my local council when I lost my licence, yours may be different. Good luck!

[SchrodingersKitty]

Thank you all so much. Some really helpful advice here. In terms of driving - I knew I'd be asked! - I don't have a licence as I find cars really terrifying and am a very bad passenger (I know people say that it is less frightening to be in charge of the vehicle). I may have to learn, as it is almost certainly not safe for DH to drive for the foreseeable, but it is not something I have the space to focus on now.

Yes - DH is 15 years older than me and certainly does have different attitudes to lots of things. His main (expressed) anxiety about the memory loss was that he would not be able to carry on writing his novel (just as his main worry with the lymphoma was that he would not be able to see the previous novel published). My parents are kindly in the process of driving over to take him his laptop so he can get on with writing. I, meanwhile, have an urgent article to finish, but can't imagine finding the mental calm to get on with it. I don't think, though, that he is reconciled to death - more that he is avoidant about medical issues.

We are both academics (DH retired just before the lymphoma two years ago), so will certainly be helping DS to get all the support he needs from his college. Up to this point I had been spending the summer worrying about him (DS, rather than DH). He was recently diagnosed with significant dyspraxia (we had him assessed because his handwriting is so problematic). So despite getting very high A*s in all his A levels and having secured a deferred place on a very competitive course at Oxford, I have been worrying about his ability to keep up with the workload. However, he has adapted very well to the diagnosis, is whizzing through his advance reading on Audible, and does seem confident about going (after a gap year which he mainly spent writing a novel - v. like his dad!).

In terms of feeling angry about DH's avoidance - that is fading, particularly because I am pretty sure that without this combination of circumstances - bank holiday, no doctors surgeries open, etc - we would have been fobbed off at the GP and would not have had a scan done unless he had a fit or showed other serious symptoms. Since he does not feel at all unwell, I suspect that might have been some time.

I am pretty bemused because he has had a number of blood tests recently that were ostensibly to rule out cancer. Not sure if he had one before his last lymphoma check up, but he had one to check on his prostate a week or so ago and another because of a very mild persistent cough - more a throat clearing. He told me that both had come back without cancer markers. I am hoping this makes it more likely that it is not cancer, but I realise that this may be the spurious comfort of ignorance.

We had hoped that he would have the scans today, but it is looking more like tomorrow or Tuesday now. They seem to plan to keep him in until Tuesday evening - I assume because that is when the hospital will be fully staffed again.

Being there is particularly difficult for him as it is where he sat with his sister throughout this January until she died. The trip to meet with his brother was mainly about scattering her ashes.

Lots of people are being very helpful with lifts and support - as they were throughout the lymphoma treatment. I am not worrying too much about the taxi cost, though it is eye-watering. The thing at the moment is feeling a bit stuck in a village where the nearest public transport (apart from a weekly bus) is a train 20 minutes drive away. But family are rallying round and I have stocked up on cash for taxis if need be.

Thank you all again for the support and good wishes. I will be back to update or just to ramble incoherently.

[SauvignonBlanche]

Sorry to hear about you news as a brain tumour patient myself I agree that the pre-diagnosis stage is the hardest.Things move quickly but not as quickly as you’d like.

Until your DH gets seen by a neurosurgeon and a plan made you’re in limbo for a while. Hopefully your DH will respond to the steroids and you can enjoy a holiday with DS before he starts Uni. these things never happen at a convenient time though, I missed a holiday due to having to be be readmitted after my craniotomy.

The chances of your DH losing his driving licence on medical grounds is extremely likely so be prepared for that.

You’re every right to be angry as well as scared.

[SaraNade]

OP I'm so sorry about your DH. Of course you will feel upset, terrified, angry, all those emotions. Those are normal, especially when there is nothing you can do but wait for the scans and tests. All you can do is take one day at a time, sometimes an hour at a time. Perhaps your husband is worried, too, but is trying to be calm for you.

[Babyroobs]

Sorry you are going through this and all the uncertainty. Lymphoma can occur in the brain or it could be a new primary. As others have said hospital transport may be available. The macmillan phone line / support line will be open over the holidays I think if you need information or someone to talk to or advice about support in your area. I don't think your dh should be driving, can family drive you home ?

[OllyBJolly]

So sorry you're going through this. I've been there with a close family member.

My experience is that "prediagnosis" is one of the worst stages. Once your DH is allocated to a team, the care is good. We were allocated a neuroncology nurse who was immensely supportive - she liaised between all the different departments and organised for McMillan and Marie curie. McMillan were great for sorting out patient transport, benefits, and other funds available. We also had a helpline number which fast tracked straight into hospital with no waiting.

The multi disciplinary team met every Thursday and the neuroncology nurse would update us on any discussions or decisions and organised appointments for us. Dsis lived 40 miles from the hospital, and I live 200 miles in different direction so it was much better for us to coincide scans and appointments etc. Sadly, DSis died last year but several of the people she met during treatment are living well.

I hope you get good outcomes.

[Carno13]

I am so sorry to read this post. I have experience with more than one family member being diagnosed with a primary brain tumour.. the steroids will make him feel much better.
Have you got a timeframe yet? I.e. when a biopsy will be done and how long until you find out results of what the tumour is?
I personally found the waiting part the hardest, preparing for the worst and the not knowing.
We had this happen over the Easter holiday period with my dad, and it was hell with all the delays.
I’m thinking of you and hoping for the best news for your DH, if you ever need someone to talk to, then please feel free to PM me xxx

[Kaddm]

I would wonder if he is quite a bit older than you and has a different mindset. Plus the fact that as he’s had a serious illness recently, he may have come to terms with his potential death. PILs are in their 70s, both got cancer (one terminal and one incurable), plus one had stroke. They’ve just been off on holiday with no insurance and told us to just cremate them and not to be sad if anything bad happens to them. So with your dh, I can see how a holiday would be more appealing than any treatment for 3 weeks

Uber is cheaper than taxis usually if there are some where you are?

[RelaisBlu]

So sorry to hear all this OP.
It's good advice to deal with each day as it comes and not look too far ahead.
You mention your DH's brother early on your post - could he help out with taking your son to Oxford? Does he live near you?

[SeaToSki]

Lots of great advice from PP. I also wanted to add that I find it very calming to make lists and flowcharts with lists. The act of writing it all down and seeing it seems to make it possible for my mind to dwell on things less (maybe because I know I can always read my lists and so dont have to worry about forgetting something)

Sending 💐

[S1naidSucks]

Sorry Your husband was probably panicking

[ObtuseTriangle]

Sorry to hear about your DH. My Dm was dx with a brain tumour last year. Once the Ct and mri scans were done the results were then sent to the larger hospital to been seen by a panel of Drs and then she was given an appointment. I think it probably took at least 3 weeks. Can the hospital local to you now do the relevant scans? Once this has happened I would call your bigger hospital and see what their process is there may be no point in rushing home.
There are lots of different types of tumours and some can be successfully treated. Which ever type it is there are lots of Facebook support groups that were invaluable.
I do remember the total shock we all felt, sorry you are going through this

[S1naidSucks]

I’m so sorry for you, OP. It’s an awful thing for you and your husband to have to face and I hope the news is better than both of you expect. Your feelings are perfectly normal and understandable, under the circumstances. You’re still his wife and of course he’s going to do things that will annoy you. Anger is often a tool we latch onto, to prevent ourselves from having to face up to our fears. Please go easy on yourself.

Your bus was probably panicking and hoping that if he ignored it, then it would go away. I’m sure he was thinking of all sorts of reasons he was feeling the way he did, rather than facing up to the possibility that it could be something so serious.

[timshelthechoice]

A day or two won't make a difference. I'd continue on and then go home to the large hospital where he was originally treated. The large hospital will be on skeleton staff, anyway.