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AIBU?

To be angry as well as upset and terrified?

34 replies

SchrodingersKitty · 25/08/2019 11:29

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.

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EmeraldShamrock · 25/08/2019 17:38

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

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bambalaya · 25/08/2019 17:57

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

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Cwtches123 · 25/08/2019 18:08

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.

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SauvignonBlanche · 25/08/2019 18:13

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).

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SchrodingersKitty · 25/08/2019 18:15

That's great news, Sauvignon!

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SchrodingersKitty · 25/08/2019 18:20

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.

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Jent13c · 25/08/2019 18:40

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.

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SchrodingersKitty · 30/08/2019 09:35

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.

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EmeraldShamrock · 30/08/2019 10:24

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.

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