chat and hand-holding for those of us supporting a DH with cancer - new thread for the new year

[MrsShrek3]

sign in, folks :)
Hoping that 2013 brings better stuff for all of us.

Hello cornydash. Good news about your ds, hope he continues to do well and that he has a successful reversal. Had his cancer spread from his colon? Dh did have a CT scan and all was clear, so we're not sure at the moment whether he will need chemo. We'll know more when we've seen the consultant next week. Good luck to your ds.

Daisy how are you baring up?
Thinking of you this week and sending you hugs to help you through this tough time, stay strong
X

oh no I don't know why I posted ds - it's my dh that's been ill I'm sorry

just been on the crafting/ knitting thread, blanket in progress for Daisy if any of you hadn't seen.
hugs, Daisy, if you're around.

MrsS Sorry to say I am useless and can't find that thread, can you link? Daisy you are in my thoughts constantly, the minutes, hours, days, must be terribly unimaginably difficult, hugs and love.

Thanks to all for your responses on DH, especially Daisy can't believe you were responding to my concerns re DH while facing such a difficult day DH did contact Macmillan nurse (especially when I told him everyone here was agreeing with me!) It is looking like it is to do with reduced circulation in his leg as a result of surgery and following advice is improving, but he also has an appointment to check it, so am a bit less stressed about it now. Thanks all, mostly keep the stress bottled up anywhere else, but always find I can say what I feel on here - in fact only realised how stressed I was about it after posting here.

Hope everyone else doing ok - any further forward on the results MrsS?

Hugs again to daisy

Well done Turning for getting DH to doctors .
Keep posting ,I think it helps us all .

Another one thinking of Daisy ,sending love and light .And wishing I could do more .

Hello everyone
I'm grateful to have found this thread but sorry to see that so many if you are going through similar struggles, I've been reading back through some of the thread.

Firstly if like to say I'm so sorry to Daisy about Mr D, thinking of you & i know we've never spoken on here but just know you are in my thoughts, sending you strength.

Our situation is that my DH was taken into hospital last October after he was found to have extremely high blood pressure which caused him to loose sight in one eye temporarily. He was in for about a week whilst they controlled his BP & then they started a number of tests to rule out other things. Just before Christmas we found out he has a small tumour on his adrenal gland. It could be the case that this is causing his body to produce too much adrenaline and is pushing up his BP. During all of these tests & scans a second tumour in his pancreas was also found in February. We found out about this after being copied into a letter sent to his GP, no phone call or consultation

DH was then referred from our local hospital to a hospital in London where he has further scans & blood tests. This week he has had 2 scans in the nuclear medicine dept to try to establish (we gather) the characteristics of the tumours and this must also mean whether they are malignant or benign.

It's been a long long road here. I keep thinking of it was serious surely they would know by now I am trying to hold in there hoping the final diagnosis is just around the corner.

Look forward to sharing support with you all.

Lizard - hi ,gosh that sounds a long and horrible road and I wish I knew what to suggest .

Could you get your GP to explain to you what the situation is ,even if this involves the GP contacting the hospital on your behalf ? They should do this for you so don't be put off or afraid to ask .

Maybe start a new thread with "tumours in adrenal gland and pancreas ,could this be cancer ? "

There might be people who have experience in this area and know how things are diagnosed .

Do you know when you are due to get results of this weeks scans ? Can you phone consultants secretary and ask ?

Sorry not to be more help ,what a horrible position to be in .

Maybe someone else can offer better advice ?
There's loads of knowledgeable people on here on the Tamoxifen thread ,and they have experience of all different types of cancer and tests .

lizard my DH has a rare type of cancer called neuroendocrine, it started in his pancreas and can also grow in the adrenal glands.
It could be worth mentioning when you go for scan results but your DH would need a biopsy to diagnose it.
I don't want to panic you but it could be useful to know?

Daisy thinking of you, sending you strength for tomorrow

Ginger & Helen thanks for your advice. I didn't make my first post too long, I've been trying to write it all day & it sounded like I was going on. We knew they are testing him for neuroendocrine tumours- that's what they think it is. There is a possibility that the one in his adrenal gland is pheocrotoma (sp?) but they aren't sure. This tumour is 1cm so I think they would probably look to remove it & then test it afterwards according to what Macmillan said rather than operating there twice. But they still seem to be unsure about the pancreatic one whether it is an endocrine tumour or not. We think his hormone tests were ok so possibly (from what I have read rather than what has been explained to us) it is non-functioning, but this is larger, 6cm.

I'm sorry to hear that your husband has this Helen. How long ago was it discovered? How is he doing? Sorry you may have said this on the thread before I've been trying to follow where everyone is.

Unfortunately ginger the GP hasn't been that helpful. He's a useless GP anyway, but stubborn DH would never change. Need had need to- need went to the doctors- I can't even remember when he has had a cold let alone anything else before this.

He is back at the hospital on Monday for a test for Cushing's syndrome. I am going to go with him as it will be in the PIU & hopefully we can get some answers then about when we'll
Know. DH has been reluctant to chase the hospital, I am sure that he is terrified but I'd rather chase them up & know where we stand.

thinking of Daisy tomorrow

hugs to all, hello Lizard. hope you get the answers you need soon.

thinking of Daisy tomorrow anket-for-Daisydotandgertie-Lovely-donors-and-crafters-we-need-your-help blanket thread

nothing much to report here. as far as DH goes, they are doing watch and wait. Accepted way to deal with it apparently.

we are having a weekend away. It's a bit strange tbh, the same weekend last year (it's our wedding anniversary) was the last time he felt well. By a couple of weeks later he had developed the tumour. All feels weird

linkfail

link again to blanket thread
[crossesfingers]

I'm sorry we have two new joiners on this thread. In the nicest possible way, I wish you weren't here.

Tomorrow is the day I have been dreading. It has come so fast. The church looks fabulous - just as I wanted it and I finally feel confident it won't be empty (neurotic?). I had a shite day yesterday but today has been better - I have been able to keep myself absolutely occupied. There was a bit of a blubbering, snotty mess on this afternoon's dog walk, but apart from that it has been under control.

I am sitting here in bed trying to work out what to write on the card which is going in the flowers. Nothing seems meaningful enough - nor do I feel literate enough to express exactly what I want to.

MrD's family are here - and in such a mess. Tears, tears and more tears. I have found myself trying to put perspective on this awfulness - to try and make them feel less despairing. I feel concerned tonight - that they'll think I don't care enough - because I am so controlled I know I'm brittle.

I cannot allow myself to think too deeply about tomorrow or my heart will split into a thousand pieces and I fear the grief will be physically painful. I am frightened of the grief (see - a new fear now the cancer fear has gone) the little glimpses I've had of it so far have been enough to make me fear it.

This morning, I got new hair and deep red nails. A wiser, cleverer lady than me once said that red nails will always make you feel stronger. And she's right. So right I've just done my toes too.

Think of me tomorrow and send up a little prayer. I can't express how important the thoughts and support here are to me. I'd never have thought it, but they really, really are. Thank you.

Daisy I'm so sorry that you're going through this. I'll be thinking of you tomorrow x

a prayer and a little candle will be here at the shreks.

MrsS Thank you for the link, I have got that underway. We just recently reached that same 1 year on point and it is does suddenly focus you on the before and after. Can understand the weirdness of it.

Welcome Lizard to the thread we wish no-one had to join. Sorry you are having such an awful wait for answers.

Daisy I am so glad you have got everything the way you wanted it to be for tomorrow. I hope you find the words that you want for the card.

It is hard to find words to write to you here that really seem in any way adequate. I am thinking of you so much and am so sad that you are in this situation.

I too will be thinking of you all through tomorrow and sending prayers. May those red nails continue to give you strength through the day xxxx

Daisy thinking of you today & saying a prayer for MrD, you & your family. I am sure none of his family will think you are being too hard, everyone needs to do what they can to get themselves through & manage the best that they can. I hope that there is support & strength for you from the family & friends you will have there today.

So right about the toes daisy. I hope all went for as you would wish.

thinking of you today daisy x

Daisy sending thoughts to keep you safe and cared for .

Have lit a candle .

Red nails and toenails - very excellent thinking .

Please think of yourself and try not to be too drained by others grief .

G x

Daisy, my thoughts and prayers are with you after such a difficult day today. I hope things went well today, or as well as can be expected.

I want to say more but I don't have the words.

Dear Daisy I woke this morning and thought of you, and the strongest thought was of your red nails and the hope that they would keep adding strength to get you through today. In a possibly slightly crazy moment, I thought I would paint a couple of my nails red too so that throughout the day I would see them and think of you. So that is what I did and I have thought of you and sent my prayers every time I have looked at my hands today. I hope that the day has gone as you would have wished and that you have got through each moment.

I have also thought about your description of your grief and the new fear this has brought. I could not find the right words last night and hope that these are not the wrong words now. This thread and this forum are a lifeline, but the one thing I find hard about typing words onto a screen is that day-to-day communication is about so much more than words. This thread is not casual chat, we are all experiencing some of the most challenging situations we will face in our lives. So I constantly hope that I pick my words carefully and they give support when possible and do not cause further stress.

So I hope this is helpful to share. I experienced the loss of my first boyfriend. I met him when I was in my mid teens and he died aged 21. He had cystic fibrosis so we always knew he had a life-limiting illness. 6 months before he died he had a heart and lung transplant. Not a cure but the aim was that he would get a period of better quality of life. It all seemed successful but there were suddenly complications and he died without any real warning. I remember experiencing the feelings you are describing now. The grief did physically hurt. I had to keep cutting it off and bottling it off or I felt like I would lose control and never get it back. The combination of unexpected (at that moment) and premature death was more devastating than any other loss I have experienced and there was not the added component of the knowledge of avoidable loss that you have to deal with. If this were DH now it would be worse, simply because we have been together and our lives entwined for so much longer. What you are experiencing is totally understandable and I just wish with all my heart I could take it away. It took me time to let it out a tiny bit at a time. You will experience your grief in your way and in your own time and you have so much to come to terms with.

It can be very hard to deal with grief with other people, because if they are in front of you then you somehow have to deal with their grief as well as your own. I am sure that most people will understand that you have to deal with things in your time in your own way, but if you are really worried that anyone does not understand, then maybe you could write it down and send it to them ? ? it can be easier to write than speak sometimes. If you just wrote the way you do on here then they would understand the measure of your feelings, just as we do But I am sure everyone knows anyway.

Anyway, I hope this is in some way helpful and not more distressing and that you have survived today, and given MrD the day that you would wish. My nails are still red and I am still thinking of you. Much love xxxx

pm'd you turning.
Lisa... hoping the results are better than they seem, do I take it that PAT is turning up with her suitcase again?

weekend is lovely, ta Unfortunately gotta return to rl tomorrow (today?!). It's been a bit odd too, the same weekend last year was the last time DH seemed well, a couple of weeks later the tumor was making itself visible and you know the rest... Had a few tears as all I hoped for during his chemo was to eventually get DH out on walks in the countryside and a camera back in his hands, we share a love of photography and his pictures are amazing. This weekend has allowed us to do just that. so and rolled together. Lots of things are like that on this journey, I've found.

good luck and hugs to everyone here. Extra hug for Daisy

It went well! The weather was fabulous, the church was absolutely packed with people even having to stand at the back and a very lot of people came back to our house for tea and buns afterwards. It's an odd thing, but I actually enjoyed parts of it. If I ignore the fact that a lot of people were weeping when they spoke to me, it felt like our wedding day. It was the love, support and caring which did it.

The red nails made such a difference (I know I am sounding a little bit peculiar). Every time I looked down at these perfect red gel nails they gave me that little boost which helped me to keep myself together. There were tears, of course there were - but not the overwhelming painful ones which turning you have spoken of so eloquently. My grief is exactly as you describe it and the painful bits sneak up on me when I am not expecting them. I am sorry you experienced such awfulness so young, the enormity of it is hard to understand even at my age so in your early teens it must have been horrific.

And I LOVE that you painted some nails red in solidarity, really really love it. Red nails are my new coping mechanism; I'm glad I got gels done for the first time - they may even last a few days.

Lisa - I hope you're OK; do let us know won't you? And of course that MrL's blood tests are good too. I expect the old cow PAT has unpacked her bags and made herself at home by now.

MrsS - I'm glad you got your normal back again for a while. And even had wonderful weather for it too. We had a holiday booked for exactly the same reason and were due to go on the Friday after Mr D passed away - I took the roofbox off the car yesterday! I am so pleased that you got a lovely - and I understand the tears - weekend.

Thank you all for your support and kind thoughts - it must be especially hard for all of you to think about where I am and your sympathy and kindness is appreciated all the more for it.

I must now head over to the wooly hug thread - I am utterly overwhelmed by the offer of a blanket, and even more overwhelmed by the number of people who are giving up their time for a complete bloody stranger to make it. Not sure how to express that when I get there, but I'll give it a go.