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To be angry as well as upset and terrified?

(35 Posts)
SchrodingersKitty Sun 25-Aug-19 11:29:14

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.

PumpkinPie2016 Sun 25-Aug-19 11:41:26

Oh gosh - that sounds awful. I'm so very sorry OP sad

Firstly, easier said than some but try to forget about your husband driving etc. That's not important now.

Of course it may be bad news but again, doesn't necessarily mean absolutely nothing can be fine - chemo/radiotherapy may be an option even if operating isn't. Once you know what's what, you can make a plan of sorts moving forward.

Do you want to wait for scans where you are or can you safely travel to a hospital near home? Clearly the holiday is out of the question now but your husband may well be in denial, hence him asking if he could have it.

Look after you and your son as well - remember to try to eat well and get some sleep.

Don't forget Macmillan have a support line - even if you just want to talk, they will listen.

How does DS feel about going off to uni? If he is still happy to go then great. If not or unsure, he should speak to them and explain the situation. He may be able to defer. Even if he goes, he should let the tutors know so that they are aware and can support him.

Sending you and your family lots of luck flowers

PumpkinPie2016 Sun 25-Aug-19 11:43:34

In terms of financing taxis etc - speak to Macmillan - they may be able yo help.

Just seen DS is happy to go to uni - that's great! It may help all of you to be focusing on getting him ready for the off. My advice about letting tutors know still stands though.

Actionhasmagic Sun 25-Aug-19 11:46:05

So sorry to hear this. Try and explain to your DH how worried you are and how health must come first. I hope it works out for you x

cantfindname Sun 25-Aug-19 11:54:18

It's not really a head in the sand attitude. I expect he is scared silly and trying to minimize it all. As above poster says, emphasize how his health has to come first and how much you worry when you feel he is hiding things from you.

What a horrible set of circumstances for you all. I know you say you don't drive due to anxiety but do you have a driving licence? Maybe get yourself to your GP and some help with your anxiety to enable you to make life a little easier by being able to use the car? You could have a short refresher course with a decent driving instructor first if it makes you feel happier.

flowers

bionicnemonic Sun 25-Aug-19 12:03:56

Neighbours may well be happy to help with driving, you could pay them a token amount in kind (actual money may invalidate their insurance)

MrsMozartMkII Sun 25-Aug-19 12:04:27

He could well have been scared and / or his thought process not doing as it normally would: I've had a bleed on the brain (horse riding accident) and thinking clearly was not always possible.

Your mind is going to be all over the place. You need to put the 'not urgent now' thoughts aside. Focus on the immediate practicalities and who can do what to help you.

Your son going to uni as planned is, probably, the right thing. If anything changes it can be reassessed at that time.

All tightly crossed for a good outcome lass.

CharlotteUnaNatalieThompson Sun 25-Aug-19 12:10:14

So sorry you are going through this, I'm not surprised you're so very stressed and terrified.

Just to add a different perspective (not necessarily the right one but an alternative one...) I'm a consultant who works with cancer patients.

Your dh will probably start to feel a lot better after a few days of steroids. If he's physically well enough to leave hospital and have your holiday first, it wouldn't be a strictly terrible idea.

If your dh had lymphoma 2 years ago he's probably still under follow up with a haematology consultant. You could ask the team who have done the scans to send these with an urgent referral letter through to his consultant. This will get him back in the system quickly, and they can arrange for his images to be reviewed and decide what needs to happen next (there might be several options). If the scans indicate this might be a new problem they could do the same to another relevant specialist, although someone who doesn't know your dh might want to see him before planning the next steps.

You could stay away on holiday until you know what is happening, and go back for a definite appointment when there will be a plan. This may be for the full 3 weeks by the time everything is sorted, or at least for part of that time. You can ask the consultant's secretary to call you with appointment times rather than relying on letters.

It would be worth having a frank chat with your dh, if you can face it. It may be that he's wanting to wait until after your holiday in case he gets really bad news, or needs unpleasant treatment that will make him feel rough, in order that at least he has these 3 weeks of quality time with you. Of course this will be difficult for you if your instinct is to rush home and get on with it asap, but this is a valid option and may not make much difference to the time it takes to get him seen or indeed to his prognosis. I have these kind of discussions with my patients often, and would always try and fit appointments and treatments around holidays and other important plans if possible.

Happy for you to pm me if you want

Rachelover40 Sun 25-Aug-19 12:13:00

I'm so sorry, Shrodinger'skitty, this is very worrying for you, for all of you.

Mrs Mozart said:- Your mind is going to be all over the place. You need to put the 'not urgent now' thoughts aside. Focus on the immediate practicalities and who can do what to help you.

Agreed.

mumwon Sun 25-Aug-19 12:15:07

there may be volunteer drivers charity of some description in your area - google on web & check (local usually)council to see if there is -these are often a great help. Check at your doctors surgery & PALS at the hospital they may know of organisations that do this. Usually they do this for small cost some which is considerably less. Of course your son should go to Uni no question =he can come back to visit when/if necessary. & you should check (later) to see if there are coaches or trains to visit son (we use to stay in cheapest b&b (or nowadays air b&b) Once a term - if dh cant drive son will have to travel down by public transport & perhaps order bedding etc on line from argos etc to be delivered to uni -end of term he maybe able to store things at uni. as others have said contact Macmillan but there maybe other hospice or cancer charities locally that might be helpful to - I would also suggest you contact local carers organisation as they may be able to offer emotional, physical & information gateways to support (they may know of transport & might help you with organising it) Do you go to Church as the local church might be able to help? Your dh is in shock & it is a common way of coping to just day to day.

timshelthechoice Sun 25-Aug-19 12:16:51

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.

S1naidSucks Sun 25-Aug-19 12:18:35

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.

ObtuseTriangle Sun 25-Aug-19 12:18:53

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 flowers

S1naidSucks Sun 25-Aug-19 12:19:13

Sorry Your husband was probably panicking

SeaToSki Sun 25-Aug-19 12:22:38

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 💐

RelaisBlu Sun 25-Aug-19 12:24:58

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?

Kaddm Sun 25-Aug-19 12:29:59

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?

Carno13 Sun 25-Aug-19 12:34:28

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

OllyBJolly Sun 25-Aug-19 12:59:12

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. flowers

Babyroobs Sun 25-Aug-19 13:05:13

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 ?

SaraNade Sun 25-Aug-19 13:11:15

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. flowers

SauvignonBlanche Sun 25-Aug-19 13:21:48

Sorry to hear about you news flowers 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. brew

SchrodingersKitty Sun 25-Aug-19 15:54:19

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 Sun 25-Aug-19 17:22:41

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 Sun 25-Aug-19 17:32:53

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.

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