Dh diagnosed with lymphoma last night

[GuyMartinsSideburns]

i think exhaustion from crying knocked me to sleep last night but now I'm wide awake and my headache won't go.

Feels like it's a nightmare, first doctor said gastritis back in jan, then recently possibly Crohn's disease, and yesterday dh got this diagnosis after further scans etc,

We're waiting for more tests to find out exactly what we're dealing with.

I'm so worried. My mind is racing like crazy and I can't help thinking the worst. We're renovating our first home at the moment and due to move in during the summer hols, dh has a business that I'm now wondering how will manage, and with moving I'm going to be alone dealing with this. That sounds selfish I know and isn't my intention, I'm just aware of how strong I need to be for dh and our children and I'm terrified of what might be around the corner and how il cope. I'm nc with my family.

I just can't believe this is happening. Dh is 38. Any hand holding would be really appreciated right now, sorry for rambling.

[Lizsmum]

Just take one day at a time -- easier said than done I know but it's the only way I can cope with my daughter's lymphoma. Any anxiety reducing techniques that work for you?

[GuyMartinsSideburns]

Hi Lizs, I hadn't really thought about anxiety reducing techniques tbh, I find that the dc tend to keep me busy and my mind off things to some degree. It's just those times when it hits you and I think omg I guess at those times I try and watch my breathing, have a cry and then get back on with things. I just feel so drained now with it all.

[JE1234]

Guy anxiety reduction/relaxation techniques may help you but there's also no harm in feeling this. You have an important day on the horizon and it's natural for you to worry about what that will bring. Have you thought of asking his haematologist how they think he's doing. They are likely to already have some indicators at this stage. Obviously they won't yet have all the detail a PET scan or similar can give but they may be able to relieve some pressure. Sometimes a cry and a hug is actually what you need.

[velourvoyageur]

how are you today Guy? thinking of your family x

[GuyMartinsSideburns]

JE1234 well the haematologist and gang are really happy so far with how the treatments going, I'm just cynical and preparing myself for the worst - like, "well they would be bloody saying that wouldn't they" kind of thing, cos dh says to me "they're all really happy so far, it's nearly over". I don't believe they'd be all doom and gloom at the moment or you'd never get through it, though I like to hope that maybe they wouldn't be quite so chipper about things at the moment if they didn't think so?! Dh had a scan a while back which was encouraging but I'm so scared I'm convinced it's going to do a 360, does that happen very often? I'm dreading going for the meeting after the PET scan. What if it goes initially, then returns? I can find little info to tell me the chances of that, so I don't know if it's worth me worrying about iyswim. Or if it goes would his chances of getting cancer then be the same as anyone else's?

There's nothing on Macmillan etc to help, and the lymphoma association have nothing on his particular type either. I went to the last consultant meeting but it wasn't ideal as I had to take the toddler (no family near us) and by the time we got to see the consultant after a few hours waiting ds had thoroughly had enough!

He Velour, we're not doing too bad today thank you, dh popped into work again but it's keeping him satisfied so that's ok. I had a rant earlier as someone was telling me how 'amazing positive thinking is', I appreciate people are trying to be kind but bloody hell. All this 'he's a fighter he'll beat it' stuff, to me it just sounds like a huge disservice to anyone that's died from cancer - did they not fight enough? Dh had someone tell him about a bloody rainbow diet that would sort out the cancer, I said to dh lucky I wasn't there or I'd have bloody sorted out the bloke that said it! I know it's all meant well but ffs. Sorry for the rant xx

[GuyMartinsSideburns]

*Hi, obv

[JE1234]

From experience if it's not going well haematologists will tell you. The NHS is so heavily and rightly about informed consent. Even if it scares you they tend to be honest. I know there are no guarantees yet and nobody has a crystal ball but it does sound like you have reason to be positive. Statistics for recurrence are frightening for every cancer, I would strongly advise against looking for them. The best course of action is to ask about the best ways of preventing a recurrence- lifestyle factors particularly and then accept all monitoring they offer post-all clear.

[GuyMartinsSideburns]

Thank you JE1234. I will avoid trying to read up on anything like that, also I've been told more than once that a lot of stuff online is very out of date when it comes to cancers and treatment so I'm best off sticking with what the consultant tells me.

Regarding lifestyle factors - dh was always active - out on his mountain bike a lot and doesn't smoke or drink, and his job was pretty active but I guess it's just one of those things and there's always room for improvement I'm sure. I know he's keen to get fitter than he was before once this is all over. He will most definitely be going for all monitoring, I shall make sure of it!

Many thanks, you lot are brilliant x

[velourvoyageur]

oh god, how insensitive of them! rainbow diet, indeed I get people feel awkward and meaning well, but surely you can think before you say something...and yes positive thinking might be important sometimes but so is dealing with all your other feelings.
Feel free to rant away!
hope you have a good evening tonight & get some sleep :)

[GuyMartinsSideburns]

I can't sleep I'm so worried. My head is banging and I feel sick with nerves. Allsorts running through my mind and I can't switch off. All the things that dh takes care of and I'd have to learn to do, silly little things that seem so huge and things like getting someone in to look at the damp, getting us all to dentists appointments etc that feel too big for me to cope with. I feel silly and completely useless. Ds has been playing up at school, I know he's worried and the school are supportive but it's just something else for me to worry about. We're new to the area and I wanted us to fit in and make friends.

I really don't want to do this anymore.

[echt]

I'm so sorry it's all getting on top of you. I've never been in anything like your situation, so won't presume to offer advice. I'm thinking of you, Guy

Many many

[GuyMartinsSideburns]

Thank you v much, I know I put my phone down around 2.30 so got a few hours before getting up at 6. I feel so tired this morning.

[GuyMartinsSideburns]

Dh is now in hospital for the week for his final fingers crossed treatment. The PET scan is booked, he has the consultant appt booked and they're talking about when to remove his line.

I'm anxious of course, dd has been very teary these past few days (she's 7) but the school is being wonderful with supporting the children. I guess it's all dawning on everyone now, it feels a bit surreal to me. I also can't believe its been almost 6 months from diagnosis, I used to think 'ok, so we'll be done not long after xmas' and it felt so far away but now we're almost there.

Just wanted to thank everyone that has posted support, or maybe just lurked and sent their wishes to us. I don't have much contact with my family so I've really appreciated the hand holding, esp in the middle of the nights and ive re-read this thread more times than I could tell you.

[velourvoyageur]

lots of warm thoughts & hope going your way Guy, hope it goes smoothly this week & you don't miss him too awfully being away for a whole week! Your kids and DH are lucky to have such a brave, strong mum & partner xx

[GuyMartinsSideburns]

Thank you Velour, I don't feel strong I feel like a wreck but thanks for your kind words nonetheless

[Twodogsandahooch]

Guy I just want to wish you all the best for the PET scan and results. I have been on a mumsnet break and not posted in ages, but have been thinking of you and your DH often.

He has done brilliantly to get through this really tough chemo regimen,and the fact that they are talking about line removal sounds promising.

Really hope that you get some good news this time.

[GuyMartinsSideburns]

Twodogs thank you very much. He texted me half an hour ago to say they're taking the line out next Friday.

I'm looking forward to having him home tomorrow

[velourvoyageur]

how are you my lovely? happy he's home I bet :)

[GuyMartinsSideburns]

Hello velour! Yes nice to have him home Was our sons birthday yesterday so on Sunday we went out for a meal, was nice to feel 'normal' for a while. Dh is at work today and was there yesterday, he's happy to be able to do that. We can try and have a normal month and then he goes for the scan etc.

I feel incredibly tense, I'm not sleeping well and keep waking up with neck/back/mouth ache which I'm putting down to stress and shifting position all night

[GuyMartinsSideburns]

I should say I'm putting the mouth ache down to clenching my jaw! Dentist on Thursday to check anyway X

[starpirate]

hi I havent much to add, but came across your thread and i am so thrilled that you have had a good xmas and that you got out for a meal.

I can however comment on the jaw thing, as i have bruxism and it's a bloody pita. It is incredibly tricky to live with, but you can get a mouth guard from the dentist. I used mine and it did stop it after a few weeks. xx

[GuyMartinsSideburns]

Thanks starpirate. I think I'm doing it during the day too without noticing, until I realise I'm clenching down and my jaw feels tight. I will see if the dentist can help me tomorrow, thanks :)

[velourvoyageur]

ooh yes jaw clenching, it's not nice at all no, but very possible to break the habit - ditto what star said, mouth guard sorts it. They put clay in your mouth for it, yuck! I think it was free though.

happy bday to your son! time goes by :)
sorry if this is totally unhelpful, but have you tried sleeping without your pillow or a different one for a bit? plus heat compresses on your neck. I go through headachey periods and often it's as simple as the pillow being awkward.

bon courage to all of you

[GuyMartinsSideburns]

Teeth all good for the time being, thankfully. Still waking up with a sore neck or headachey but guess it's all stress. When we've got some decent money again we will be getting ourselves a new mattress and bedding!

These weeks leading up to the scan seem to be taking forever. Dh is very anxious, he had a cry this morning and I had a big bawl once the kids were at school and dh at work. All the not knowing of whether it's worked is horrendous.

Just me moaning on today. I don't hear from family so I sometimes feel quite alone with all this going on. The toddler won't nap today and I am so tired, I can't wait for bedtime! Dh has been sleeping downstairs because he's been keeping me awake with loud breathing/snoring, but then I feel bad because it feels like I should be spending all the time I can with him, just in case but if I don't get much sleep I'm useless.

On a lighter note, I booked my first ever piano lesson for next week! Always wished I could play but never had the chance to learn. Usually nerves stop me from going ahead with stuff but this time I thought sod it, let's have a go. Might not come to anything but it's worth a look I thought. X