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Life-limiting illness

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DH has a brain tumour

350 replies

AndNoneForGretchenWieners · 06/01/2019 15:05

I've posted before about my DH, who was diagnosed with stage 4 lung cancer in 2017. He had a lung removed, chemotherapy, and was told the cancer had spread to the lymph nodes but was dormant. His last oncology appointment in November was quite positive and he was cleared to go on holiday in Germany in December.

While we were away I noticed that his memory was quite bad, but he's always been a bit absent minded so didn't think anything of it. He had been having headaches, but was due to have his eyes tested so again thought it was that.

Over New Year he started slurring his words, drooling, and being quite abrupt and snappy. My parents remarked that his personality had changed and wondered if it was his meds.

Yesterday I couldn't understand anything he said, so against his wishes phoned 111, who spoke to him and sent an ambulance. He got very distressed and stopped speaking, so that his speech couldn't be assessed. The paramedics thought he had had a stroke but he wasn't meeting all the FAST markers. When he got to a&e they sent him for a brain scan and the results showed that the cancer has spread into his brain. He has two lesions and a tumour, which is "not small". He was put on steroids and is now going to be an inpatient for the foreseeable future.

I am devastated. I don't know what to expect, he hasn't seen his oncologist yet but she is due to come round today or tomorrow. His speech is even worse today and he is speaking out of one side of his mouth only, and drooling every time he speaks. He's in denial and is convinced he's going home tomorrow, even though I have tried to break it to him that he won't be.

Had anyone been in this position? What do I need to ask the oncologist? Any tips for what could make him more comfortable? What happens next? Please be gentle.

OP posts:
nippey · 06/01/2019 15:12

I’ve no advice but just wanted to send some hugs your way. I’m so sorry that this is happening.

BobbyGentry · 06/01/2019 15:13

Can you contact Macmillan cancer support? (Call free 0808 808 0000) They’re were beyond amazing when my dad passed in similar circumstances. Tell him he will be home, gently encourage him and make him as comfortable as possible. I am truly sorry that you are going through such a very impossible time. (Ice cream with protein powder might be refreshing for his palette.)

BobbyGentry · 06/01/2019 15:14

palate

HollowTalk · 06/01/2019 15:17

What a horrible situation. It must have been such a shock for you. I wouldn't talk about him coming home but would just leave it at "Let's see what the doctor says" - there's no point in talking about it if it's going to upset him. I hope the doctor sees him quickly.

Flowers
Cuntcuntcunt · 06/01/2019 15:20

hugs x Flowers

Whoateallthecheese · 06/01/2019 15:21

I'm so sorry you're going through this. There are several brain tumour charities who may be able to offer you support and advice. I would wait and see what the oncologist says, and maybe have someone with you as a second pair of ears or make notes while you are talking of what they say, you've had a terrible shock and you may not take it all in.
Flowers

AndNoneForGretchenWieners · 06/01/2019 18:29

Thank you so much, it's so good to be able to talk about it. I will give Macmillan a call tomorrow and the tip about the ice cream and protein powder is great, he loves ice cream. I have tried to encourage people to visit over the week but for short periods so he isn't too tired out.

Flowers for every one who has been through this too xx

OP posts:
OllyBJolly · 06/01/2019 18:35

So sorry you're going through this.

Lost my DSis last year to brain tumours. The support we had from McMillan was fantastic, I really don't think we would have managed without our nurse. We also had a neuroncology nurse who was great, and helped us make the right choices and interpret what the specialists were telling us.

It's obviously horrible for the patient but I think it's also difficult for family and friends to cope with. It's hard to see the personality and mood changes as the illness, and many friends and family just stayed away. Which was fine. Do look after yourself and take every opportunity to restore your own energy. It's tough going.

Willowkins · 07/01/2019 01:42

I'm so sorry you're going through this. You've already been through so much. I think I would ask the oncologist what the options for treatment were including what the radiologist and surgeon have said. I'd also want to know how long we had. I would also ask for an urgent referral to the local hospice (where I live anyway it's not just for people who are end of life) and community care teams (to assess any possibility of getting him home). I hope you get all the support you need as well.

ILoveChristmasLights · 07/01/2019 01:48

💐 I’m so very sorry to hear that.

I hope you can get a good support team in place x

chickenfeathers · 07/01/2019 09:14

AndNone I am so, so sorry to hear about your DH. I have followed your previous threads, and had my fingers crossed everything was going well for you.

My DSis had secondary brain tumours a few years ago - and we only found out about them after she collapsed suddenly. She was operated on to remove a couple of them, and there was an instant improvement in her symptoms.

Unfortunately, there was no cure, as her cancer was very aggressive and had spread to her entire body.

Macmillan were very supportive, and she was moved into palliative care for her last few days. This was a homely environment, and more peaceful than a hospital.

Things that helped were cool flannels on her forehead. Ice cream and ice lollies. Later on, sponge swabs dipped in cold lemonade were refreshing too.

It is an awful situation to be in. It is incredibly draining both physically and mentally, and you must, as others have said, look after yourself too.

I'm sorry I can't give you a more positive story, and I hope I haven't upset you posting this. Please keep us all updated - we are here for you.

Take care Flowers

AndNoneForGretchenWieners · 07/01/2019 15:49

Thanks for all your replies and helpful/ kind words. The oncologist is going to phone me after her clinic finishes, but so far I have been told that he will be discussed at the multidisciplinary meeting at Queen Elizabeth's hospital in Birmingham with a view to being transferred there from where he is currently being treated (elsewhere in the Midlands). He has deteriorated since yesterday and the ward sister has said he can't leave the ward without a HCA. Luckily my sister is a nurse and will be visiting him later so she has offered to take him for a coffee to give him a bit of a change of scenery.

I've been out with DS this afternoon buying him some soft comfy clothes to wear on the ward, and slip on shoes, so he can get dressed if he wants to without having awkward fastenings to do. I just feel stunned and helpless. Luckily, my manager has been great and has said to just do what I can - if I find it's too much and I can't work, just let him know and the other team leaders will cover for me. I just started doing a part time masters and DH has told me he wants me to study because it would make him so proud if I graduated. I can't let him down.

Sorry if I'm rambling, it helps to just get it out sometimes. I worry that I'm going to have to start keeping secrets from DH for the first time in 20 years - I need to know how long we have together, but I know he won't want to know - he won't even look at his scans, he gets me to look instead. How do you reconcile the lying/withholding info when you have always been able to tell each other anything?

OP posts:
Cuntcuntcunt · 07/01/2019 15:52

Oh love I'm sorry I don't know what to say. x

BaaBaaBaaMoo · 07/01/2019 15:59

You sound like an amazing woman. Thanks

sarahC40 · 07/01/2019 16:05

So sorry you’re and your dh are going through this, op. I have nothing but best wishes for you and to say from experience that QE Birmingham is a really awesome oncology hospital, so I hope your husband gets some really expert, kind treatment. Sending you some light.

Izzy24 · 07/01/2019 16:08

I have a lot of personal experience of the QE - it’s an amazing hospital with incredible staff right across the board.

I’m so very sorry that you, your DH and your family are in this situation .

FWIW, I would go with telling your DH as much as you feel he wants to know and no more. I don’t think that’s lying to him. I think it’s loving him.

I don’t think there really are any rights or wrongs, just what’s right for you and your family.

GrandmaJane · 07/01/2019 16:22

Just sending thoughts for you and him.

AndNoneForGretchenWieners · 07/01/2019 20:30

Thank you all. Good to hear positive things about QE - I've shared them with DH to reassure him that he will be in good hands.

When I got there tonight he had had a shave and was sitting up laughing with my mum, who had brought him some Christmas cake and little pots of fruit cocktail. He seemed to be bearing up better today than yesterday, so maybe having hope that things are moving and scans being shouted for tomorrow is helping him to cope.

OP posts:
TheGonnagle · 07/01/2019 20:34

Just another one to say that the QE oncology department is utterly brilliant and you couldn’t be in better hands. They looked after my uncle brilliantly.
Sending you and your family Flowers

notapizzaeater · 07/01/2019 20:43

He probably doesn't want to know as then it's real and you need to discuss it. ((Hugs))

chickenfeathers · 07/01/2019 23:00

I agree the QE is a wonderful hospital. Put your trust in them and take each day as it comes.

Hope all goes well for you. Flowers

greathat · 07/01/2019 23:02

So sorry you're all going through this xxx hope he's as ok as he can be

shuthefrontdoor · 07/01/2019 23:20

Hand hold OP. X

Effic · 07/01/2019 23:20

With the HUGE caveat that everyone will have very different experiences, my experience was that the improvement after only a few days in steroids was remarkable. When it happened, I really thought he must have permanent brain damage but the steroids reduced the swelling and the improvement in speech, memory, temperament was remarkable. Back to old self Sadly one has to remember it’s treating the symptoms not the cause though.
As other PP have said, we only discussed whatever he wanted to know .... no more.
I send you my very, very best wishes - this is a hard road to travel x

DramaAlpaca · 07/01/2019 23:22

Sending you love & strength. I remember your previous threads Flowers