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.

Hi Everyone,
Sorry to hear your news, queenie. It's such a lot to take in and I know that even when you think you are coping, underneath you are knocked for six. So many questions and so many tend to remain unanswered!

Your DH's experience at William Harvey sounds dreadful too triplets and I hope your DH is at least a bit more comfortable now.

I've been AWOL for a week mainly because we've had one of a rare weeks without a hospital appointment. However, DH starts his chemo this coming Thursday with a day at the Sussex Cancer Centre having the IV part. Then he comes home with the tablets. He's been tired but coping although the teeth are still merrily falling out and the front one went AWOL last Saturday. More and more he looks like a pirate. He's also still re-writing his own diagnosis again too but I don't feel that the time is right to bring him down to earth if his version of events keeps him hopeful.

This weekend sees the last of the easily arranged social stuff too with a Sunday lunch with friends. For the next 6 months spontaneity is going to be off the agenda.

Best wishes and hugs to all. x

Hellen, hope that the guidance from the consultant for your DH to take his AD's helps, sometimes they can be a bit stubborn about these things can't they? And i really do hope they help.

Thank you for the advice about the dietician, thats very helpful to know.

Pandem good to hear from you- I hope you managed to do something nice with your week in between hospital visits. Good luck to your DH with the chemo and hugs to you.

Some lovely lovely friends of ours have actually booked for DH and I to have dinner, spend the night and have breakfast at a beautiful hotel in London next weekend. It will be the first time we have left our little DD overnight, but think it will do us both the world of good. So generous and kind of them and a good chance for DH and I to relax before what he has described as the 'circus' starts.

In answer to gingeroots, sadly dh has not had that much support since the op. We did not see the surgeon at all immediately after the op in hospital, which we expected. Although other doctors confirmed the op had been successful, we kind of wanted to hear it from the horses mouth so to speak! Someone (one of the ward nurses I think) said it was a good thing as it meant everything had gone well. So we tried to take some comfort from that. We have a follow up with the consultant (also the surgeon) in September.

Having said all that the ward nurses were fantastic, and we are able to speak to the stoma nurses, either at the hospital or the visiting nurse, who are all lovely and very helpful. So we are not completely left alone.

Have been for chemo appointment today. They said that it is dh's choice as to whether he has the chemo or not. For him it is a preventative measure rather than a treatment IYSWIM, as his tumour is removed with a clear margin. But as one lymph node was affected, they will offer chemo. Obviously it reduces the risk of any cancer returning. We don't want to take that risk, so will go ahead with chemo, whether we like it or not! Unfortunately he will have to have a PICC line and visit the hospital once a week for the whole 6 months. He can't have the tablet form as they cause diarrhoea and because of his stoma, the risk of dehydration is too high. So that is a pain, as the hospital is the further away of the two in our city. He had the op at the nearer hospital which was easier for visiting, but back to other for chemo.

lizard, I didn't mean to imply you were being insensitive re the age thing, I know exactly what you mean, you just think I shouldn't be having to deal with this at this age. It is difficult to cope with the day to day stuff at first, as you are in such shock, and its all you can think about. But it does get a bit easier, you just have to adapt to a new routine. Although I was back at work this week, I ended up working only 3 days and even those were less than full days. I am lucky in that my work is very accommodating and I can take time off at short notice. But it is a worry, as I will have to use holidays. All I can say is get as much help as you can, and don't be afraid to ask people for help. Those that offer, take them up on it. I have found that people really are willing to help. Oh and don't worry about the housework for a bit.

Pandem, good luck for thursday.

Thinking of everyone else too.

I'm still lurking and hand holding. Had to at Pandem's Pirate DH (sorry)...
I do hope you can all get the info you need. I found we had to be very self sufficient support wise. The specialist nurses were brilliant if we needed to know stuff. Tbh you have to incessantly ask in order to get the info. We had no clue what to expect, we craved to know what was in "normal" range for symptoms and chemo side effects. yes we know everyone is different but a guide was all we wanted! some of this info almost impossible to get.
good luck to all. you are a strong bunch and will get through this shittiest of times. very strangely it becomes normal quite quickly (and so does the worry ) it is boggling how we just adapt. hang in there you lovely folks

Hello everyone, how are we all doing?
I just wanted to pop in quickly to ask for a bit of advice. I went back to work yesterday for first time since last weeks news. My direct manager is being very kind & sensitive about things. However seems like there a few hoops I will need to jump through to get some kind of special leave approved when I need to look after DH when he comes home. I feel like I just want to be upfront about everything so that the team can best plan & it doesn't leave anyone in the lurch but its like trying to get blood out of a stone getting a firm answer on anything.

Also I've had a bit of a horrible incident with a manager at work today who knows about the latest news with DH as my manager informed her (she is in my management chain so to speak). She came up to me in front of the whole office & said I'm very sorry to hear about your DH. I thought it was nice of get to say but then she said "so what happened with the biopsy then? They couldn't find stuff and it wasn't conclusive?!" It's not a big secret & her insensitivity doesn't change anything materially for me but it just made me feel like crap. I told her I couldn't really hear what she was saying and then she said "oh ok I will talk to you in private another time".

Just felt I had to vent somewhere!

lizard, hugs. and sigh.... you can't account for some folk just being idiots tbh

fwiw you are likely to be entitled to some compassionate leave or some employers have carers leave for care of dependents - which, sorry to put it that way, it's likely to meet the criteria.
I told my line management and the head, and told them explicitly that I didn't want it going anywhere else. So that is three people. I chose to tell one other colleague. The support I got was absolutely amazing, and still is. I do hope you get the same, it makes an enormous difference. For many months they told me to just come and go as I needed - in practice I managed almost full time. I absolutely believe that this made it possible for me to continue working. good luck. keep posting

Thanks mrs, I feel and at the same time. Maybe I made a mistake but I told her to tell the senior management if they needed to knew to organise work which they possibly do. However I think now i am going to ask to be copied into everything - I didn't know my manager had gone into the detail of what the biopsy results were (although she is very sweet) . I told her I didn't need her to tell the whole team although she did ask me about that but things go around like wildfire in there & this manager who came up to me just seemed quite gossipy in the way she was asking things. She isn't my friend & I appreciate her offering her best wishes but really why does she need to ask anymore or check the details?

I'm really pleased that you got the support you needed & that they kept your business just between those people you wanted to know.

I really feel for all of you who have to cope with work politics and special leave on top of everything else. I work for myself and am not taking on much at the moment which doesn't do a lot for the bank balance but does mean that I only have to make arrangements with myself, so to speak. DH, on the other hand, who is general manager of the organisation he works for still seems to think he'll be able to fit chemo around work much in the way you can a bad cold!

Thanks for all your good wishes. I'm feeling more than a little thoughtful tonight as we start this completely uncertain journey into the unknown. I plan to drop him off at the hospital and then take the dogs for a long walk beside the sea.

My DH only got his diagnosis today and it came as a big shock. He had been in hospital with anaemia and had a stomach endoscopy which was clear. Today it was the colonoscopy and they found a tumour which they are 99% sure is cancer. He had a sigmoidoscopy at another hospital last year and they found nothing so we were amazed. The tumour is right at the end of the colon where it joins the small intestine.

The next thing is a scan to see if it has spread and then they are having a case conference to decide on the right treatment.

I am in total shock.DH is philosophical about it and just wants to get on with the treatment. I feel so selfish being this upset after all it's DH it is happening to.

How did you all decide who to tell and when/what to tell them?

hugs, drudge. Many of us will say it hit us much harder than the DHs. sorry you're joining us but you will find amazing support here. Sounds like quite a shock. no right and wrong as to who you choose to tell, not to tell, when

drudge I have cancer and I do think it's harder on the partner .

When you're the one affected I think there's more to do IYSWIM ,plus I think it's even more of a shock and that it sort of protects you .

Though I guess further down the line things might alter .

Best piece of advice I read was to bear in mind that stuff on google is based on trials/studies done some years ago .Also that they are averages .And that treatment is honestly improving very quickly ,many people now live with cancer as if it were a chronic condition that they are being treated for when once they would have been regarded as terminal .

Allow yourself time to process it all and know that waiting for tests and results is absolutely the worst of it all . Try and pin professionals down as to how ,when ,etc you will get results .

It's hard telling people ,I would tell as few as possible and then only when you have a clearer picture of spread ,stage etc . But that's just me .

Have a hand to hold and

Hi Drudge welcome to the club

I would say think carefully about who you want to tell. I had kept it to only close friends then word got out at school and I had parents shouting dumbass comments at me across the playground. Such as 'keep thinking positive'.

Or people start telling you how ill they are. Like my neighbour saying she had terrible diarrhoea.

Honestly, you feel like you have to deal with other people's insecurities and issues with your situation! Unfortunately until people have first hand experience of cancer they just don't know how to react.

yy to these two wise people, they sum it up perfectly. I posted only a couple of days ago about how few people we told. I keep private life private. seriously cba with all sorts of people telling me about their friends/relatives/someone on facebook/imaginary friend, who had had a totally different sort of cancer [rollseyes] and regaling me with all the details.
do exactly as you see fit and at your own pace.
ohhh the waiting. hideous

Thanks for that. I have told my children and DH wanted to tell his oldest friends so I suppose it will trickle down the grapevine.

I just want to have a good cry but I have to stay positive in front of DH as he is bearing up so well. He is a natural optimist while I am just the reverse. My children are being wonderfully supportive but I am already tiring of hearing "they can do such wonderful things these days".

I just want them to get that horrible thing out of him and make him better
but we have to wait for scans and case conferences and it's all wasting time.

I am so glad I found you all because only people going through this can understand.

Hi drudge, sorry you have had to join the thread.

It is horrible waiting for results, but in our experience if they are fairly sure it is cancer, they will move quickly.

My dh had an endoscopy, at which they found his tumour. Within a week, he had had CT, MRI and colonoscopy. We were given all results at the colonoscopy and they had already decided on treatment and given a surgery date. From diagnosis to surgery it was about five weeks.

Good luck to you and your dh.

hope you're all doing ok. we are approaching a year on this strangest of paths, a very strange feeling.

Drudge - sorry to welcome you along here, I've found it so helpful in terms of support & just talking to other people who feel the same.

Don't feel as though you have to be strong all of the time- I kept going all the time we were waiting for a diagnosis & then we found out (or they are 90% sure) my DH has pancreatic cancer I just couldn't hold it in anymore. I had about 5 days where I just couldn't help the tears & the way I felt but I think because I had the time & let it out so to speak I feel stronger & more able now. It sounds a bit of a silly thing to say but do allow yourself the time you need. My DH is being optimistic too but we both have our up & down days & kind of balance each other out. I guess that is what marriage or long term partnership is about really. Hugs to you as I know it's just such a huge shock.
I hope everyone else is doing ok & ticking along if that's the right word!
Wanted to ask you ladies some advice about waiting times- DH saw consultant 2 weeks ago for diagnosis & then we were told he would go in for pre -op & operation within 4 weeks. However found out yesterday by calling consultants secretary that he will go in for op on 11/08 which makes it 2 months from dx to op Does this timing seem normal to people? Unfortunately we don't have private medical insurance otherwise that might have been an option with this consultant.

Lizardqueenie, I have a friend who's husband has liver cancer and they have private medical insurance. They are waiting for his treatment to begin and the delays are just the same as in the NHS. Our GP told us that they like to get everyone's opinion on a case before they start but I find that incredibly frustrating because I just want the damn thing taken out of him.

I am beginning to get cross with people who keep on about 'having a positive attitude'. I just think about famous cancer sufferers who have been on TV saying they will beat the disease and the next thing you know they are dead.

I mustn't be so impatient, I know we have a long road ahead of us. My husbands way of coping is to tell everyone he knows, and I mean everyone, even slight acquaintances that he has cancer. That is his nature but I dread it every time we meet someone he knows because to me it is like hearing the bad news over and over again.

drudge the waiting for tests and treatment is very hard .

I guess it varies but I have found ( in London ) that the hospitals are very keen and succesful in meeting the targets for completing stuff in time .

Again ,different for everyone ,but I found ( I'm the one with cancer ) that I was telling random people ,strangers on the bus and slight acquaintances about my dx .

It was like I couldn't believe it and wanted to say it aloud ,like trying an item of clothing on - what did it feel like to be admitting it .
And also practicing how to break the news on people I didn't know well to help me do so to people I knew well.

That makes sense gingeroots. The more we use the word cancer the less power it has.

Sorry we have to meet here, drudge but this thread really is a huge source of comfort and support. We can tell each other all those things (rational and irrational!) that occur to us on this unknown journey and know that we are not alone.

My dh has rectal cancer which was discovered when he had a sigmoidoscopy after an emergency admission to hospital with a rather dramatic haemorrhage. He'd been ill for at least a year beforehand but is something of a "doctor refuser". He's now on chemo which is another step into the unknown. It's an up and down sort of world and in some ways, things are definitely harder for the partner.

I'm another person who has regularly wanted to get a wet haddock and slap it round the faces of all the people who have told me about their friends/relatives/neighbours who are now "cured" because (a) there are miraculous developments in cancer care and (b) they had the famous "positive attitude". Cancer is a hugely personal condition. There are similarities in pathology but everyone's cancer is their own. So platitudes are unhelpful at best and almost always enraging!

I should be careful about the internet too. Many links are way out of date and of course, you almost always get the worst side of things reported. Mainly because nobody tends to go onto internet forums to report that there's nothing at all exciting to report. What you will read are extremes.

As for who to tell, well DH decided two things. One, that he was not prepared to be a "brave cancer victim" and two, that he wanted people to know. He has stopped short of hailing vague acquaintances in the street but everyone in the family, at work, and all our good friends know he has bowel cancer. In fairness, he looks so very different from last year - very gaunt, very pale and generally unwell - that it was a lot kinder to keep people in the know rather than have them worrying. That's not to say that they don't worry but at least they have an informed basis to work from! Ultimately, this is something you have to allow the patient to decide though.

I'm a great one for coping. But of course that's easier to say than do. Many are the nights that I find myself roaming about at silly o'clock in the morning with a cigarette and a cup of tea feeling unsettled or even downright fucking cross that cancer has dared to cross our threshold. Let yourself get cross too. It's a perfectly good coping strategy.

I hope you get a diagnosis confirmed soon. Waiting is much worse than knowing and good luck to you and your dh.

Even a way down the line I still have to do all the "what if"ing and cover all possibilities of what each test or appointment may bring. So that nothing is a surprise [controlfreak] mostly in the middle of the night, but can be other times too. Have we told you lot about PAT?

Tell me about the mysterious PAT! References have been made but I'm none the wiser!

I've asked about PAT in the past ,apparently it's

"we have a name for it, PAT (pre appointment tension) so it you see us talking about PAT visiting thats what we are on about ."

Aha! All is revealed! PAT definitely stalked the hallways here last week but has now temporarily left the building as right now we have the almost ludicrous delight that accompanies a 5 day break before the next chemo starts.