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.

Goodmorning Ginger, no not Kings for this one, the William Harvey Hospital in Ashford. His bowel consultant works from there. The joke is Mr Harinath said Harry wouldnt have had a hernia if <strong>he</strong> had done the ileostomy reversal etc instead of Kings!! We had a call y/day from the hospital to let us know that Mr Harinath now wont be in next week so it will be the following week he will check him. Told them it wasn`t good enough and that he would need dressings etc before then. So as from tomorrow we have a nurse coming out from what they call The Hospital At Home Team, apparently a much better service than the district nurses. No sign of the drain sites drying up, 7 weeks today since he had the op!

Oh for heavens sake !

Or something ruder .

Where is the hernia ?- forgive my fuddled brain

Hospital at home sounds good ,possibly even funded separately ( again good ) .

7 weeks ,just aaargh .

And how old are your triplets and you have another child as well don't you ?
Please dont tell me you have exam hell as well ?

Hi..........its an abdominal hernia, it was massive! Caused by 6 previous cancer related ops. Our trio are 15.5, quite a handful. Yes we have another son, Matthew, he died in 1994 aged 14 :(

and yes the boys sat a science gcse y/day, they are yr 10 doing double science. My dd is doing b-tec in science.

Hello all

Hello triplets, we haven't chatted before but I'm just totally at the treatment of your DH! Read your posts just shaking my head in amazement.

Hugs and wine if it will help all round, sounds like there's lots on here who could do with them at the moment.

Just a quick update from me- DH went for the biopsy last week, it went ok, he was a bit spaced afterwards. We are booked back at Kings next wed to find out where we stand, I'm hoping its promising that they just surely have results by now but we haven't had a phone call & follow up was booked at same time as biopsy. Strange feeling to think next week we will know which way this never ending journey is going to go. Support on here has been amazing so thank you all x

Hello and thank you lizard, the waiting is an awful time, 5 years later and my stomach is still in knots waiting for scan results. Once you get them though, good or bad its a relief, you feel more in charge. Such a lot of us on here, love and strength to you all. x

triplets I'm so sorry for not realising about your son Matthew . Loosing him at 14 ,devastating .

Good Lord you've been through so much .

Lizard good luck next week at Kings . It's such a nail biting time ,nothing makes it any easier .

Though I guess keeping busy ,getting out etc helps .

Sadly I 'm not one drawn to cupboard clearing as a means to get through the waiting ,I tend more towards retail therapy ,on line if necessary and being out of the house .

I'm not far from Kings ,will be thinking of you . What day is your appointment ?

Thanks everyone, it's on weds ginger.

Am I right in thinking that no news so far is good news?

My distraction would be retail therapy but after our week away my credit card says no. It's my bday on Monday but we've just decided to see where we are after weds before we plan anything, plus we've got a busy weekend today & tomorrow with family do's & DH throwing himself into an extra days work tomorrow.

I just feel I need some proper sleep- does anyone else find this? Pretty much constantly tired these days think its just being awake in the early hours worrying

Its very draining, it takes it out of you big time..............you do have have to learn to be kind to yourself, leave uneccessary jobs, treat yourself if it makes you feel better. I can tell you that time does help, when I think back to our first two years we just lived in a state of fear and uncertainty. I know its hard, but believe in the treatments, they get better all the time. If you can, stop thinking of it as the BIG C, its an illness, which like many others may not be curable but certainly treatable. Harry is now 5 years down the line, bowel/liver/lungs all affected.................but he`s been in remission for 18 months. More and more people are living with cancer, just hold on to that fact.

I've heard that people say " I'm not fighting cancer I'm living with a chronic condition for which I'm having treatment ."

You are high amazing. What wonderful words x

Meant to say both not high!

yy to the living with cancer. Lots of us here doing just that. and fwiw we also tend to refer to lymphoma rather than cancer, dunno why we need the precision but we do. Wise words about be kind to yourself. Not easy as you want to look after everyone else, but absolutely essential. I found out the hard way (surprise surprise, one day I'll take my own advice) see it as an investment to refuel. the nocturnal worrying is still the worst bit, that doesn't seem to get easier but most other stuff does.

Hello all

Shitty shit news I'm afraid. At kings this morning, consultant says DH has to have part of his pancreas removed & possibly his spleen. Biopsy was inconclusive, there was a mixture if fluid & solids & they didn't want to risk spreading anything further so we won't know for sure that its cancer until after removal but they say they highly suspect it is although they say there is a 1/6 chance it isn't. DH was so so brave, held it together stayed positive, & has all day. I wish I could have been stronger but just couldn't help myself. He'll go in for surgery in the next 4 weeks & then afterwards when they know what it is he may be offered chemo if needed.

We have spent the day seeing his patents & some of my family. My mum has had our little DD all day & I've booked tomorrow off work anyway so at least that gives us a bit of headspace. He'll be 38 this October, I feel like saying AIBU for thinking this is absolutely no age for something like this.

I feel I should be doing something/ sorting something/ getting something ready. But what? Do any if you lovely ladies have any advice of what I might need to sort out when DH has this surgery?

At the moment queenie just give yourselves time to process the news .

I think it must be positive news that they're going for surgery as it means it's treatable .

Though having said that I have to restrain myself from slapping people who tell me how lucky I am to be having surgery

Can you ask consultant or his secretary if you can talk to someone who has had similar surgery ? Or phone MacMillans and talk to them ?
Guess you need to know predicted length of hospital stay and best guess at recovery times .

Hugs and

Thanks Ginger Yes at the moment it feels like my brain is in overdrive, DH hasnt said much so I think at some point he'll open up again, I don't want to push him will just try to quietly support him.

You are right about that- about the surgery, its trying to look at things realistically and its not being over positive or unrealistic to say that surgery is a good option and a good sign.

yes i will prob give macmillians a call tomorrow. we also have a phone number for them directly and for a specialist nurse. DH said when he saw the nurse in the room he kind of knew, I still didnt twig (despite reading on here about extra nurses being in the room) thinking "oh she might be training or something'

They have given us a lot of info about his stay in hospital- probably a week to 10 days and then recovery at home which will be around 3 weeks.

Sorry I didnt even ask earlier but how is everyone else doing? x

Poor you Lizardqueenie what horrible news.

My DH had most of his pancreas removed along with his gall bladder and some other bits (this op is called a Whipple).
Surgeons always try to remove all of the growth, hopefully they will get it all out for your DH.

My DH's cancer couldn't be identified by biopsy so they sent the tumour to the Royal Marston after the op. They took a while to identify it as it was rare.
Rare isn't necessarily bad news, in our case it was very slow growing.

You are back to more waiting and unfortunately that never goes away but you are a step nearer to getting more answers.

Hang in there x

Hellen nice to hear from you lovely .

How are you doing ?

And triplets ,pandemonium ,toriana* - how's life ?

Hello all, we are doing ok. Dh is slowly recovering from the op, four weeks ago today! We had a further trip back to hospital the other night, as dh had been having pains in his side and feeling very breathless and tired. Doc suspected a blood clot and wanted to get it checked out. Luckily all clear and it now appears it could be some of the painkillers side effects possibly causing his symptoms. So he is off those for now to see how it goes.

He is still very weak and tired, but slowly improving and its still going to take some time to recover fully. We have chemo appointment tomorrow so will know more about that. I am also back at work now, so been difficult juggling everything.

triplets, sorry to hear about the bad time your dh has been having, after all he's been through. Hope he is starting to feel better. Can I ask you, how long was it after the initial op that he had his ileostomy reversa and wasit successfull? My dh also has bowel cancer and will be due for a reversal at some point.

lizardqueenie, sorry to hear your news also. It is hard to get your head around once you get that news. You are NBU at all re his age, my dh is 41 with cancer, its just not fair is it . But then it would be just as bad at any age.

hope everyone else is doing ok.

Hi all, hope you're all okay / coping as well as poss. Sorry to hear it wasn't better news lizard, but at least there's some kind of a plan of attack now.
Haven't posted recently, am more of a lurker anyway, but my husband has completed 3 cycles of ECX now, had a week's break due to bloods being to low and will have his 4th cycle tomorrow. He's been coping amazingly well!

Not too many side effects, nothing like I thought it might be.
Had a CT scan a fortnight ago and appt with consultant yesterday and apparently the situation is stable - phew!!! Finally a little bit of good news (even though his eating is still terrible - he's gone from 22st, obese I know, even at 6ft3. Latest measurement 14st2...). We went through his wardrobe last week and had a clear out, variety of trouser waist sizes from 46, 44, 42, 40, 38, wearing 36 now.

Anyway, he's incredibly positive, which helps. They also mentioned radiotherapy yesterday, as second line (is that what it's called?), but palliative, so potentially just a few sessions - we'll have to see on that.

Hoping that the chemo will continue to do good. Wishing you all the very, very best, hugs and we all need to hang on in there! Hope you are all getting support from somewhere.

I've found the Macmillan website great, as you can join specific groups for the particular cancer and find out how other people have coped, what treatment they've had etc (even though everyone's different...).

Over and out!

Inaminute so glad things are more settled for your DH .Sorry about the eating ,it's exhausting in itself . Soft eggs and spinach ? I find it's much worse if I'm tired /extra hungry /rushing . But none of that will be news to you both I know .

I'm on ECX and it's definitely doeable .

Could you post me a link to the relevant MacMillan group ? I can't seem to find much .

Toriana,must be hard being back at work ,but glad DH is getting there .

Can I ask you both what sort of support your DH have had post op ?

Lizard how are things ?

Helen how is your Dh doing now?

I think my dh will have a similar op but will be the lower end or tail of his pancreas plus His spleen which it appears can create other problems such as diabetes & low immunity but i there is a lot they can do medicine wise to counteract tthis.

Posted too soon damn tablet

Also Helen would you mind sharing how he was post op? Anything that helped? I just want to try to do things to busy myself & feel like I'm helping & making things easier or more comfortable in some way.

Torina how are you doing? Sorry to hear your dh had to have a trip back to the hospital but good to find it wasn't a clot & I hope that things have settled a bit more for him now. You are so right about the age thing, I'm sorry if that came across as insensitive, this is awful for anyone to deal with no matter how old or young you are.

Inamin pleased to gear your dh has been managing His cycles so well but I hope he can find some things that he would like to eat.

I'm going to have a look at Macmillan, I go to & then I can't bring myself, I'm almost afraid to read anymore. Trying to be strong, dh us being so brave % positive it puts me to shame. Feel I need to get myself in gear & go back to being the string line for a while, its just hit me hard, maybe because there has been such a wait u never thought there would be bad news at the end of it.

Can u ask advice on how you get on with work & all the everyday stuff you have to do? I've booked this week off anyway & only work pt but my concentration is a bit all over the place at the moment. Work have been supportive so far but just thinking about how I share latest news with them next week.

Hugs all round x

Hi, DH saw his consultant on Monday who told him that he must take his anti-depressants (let's hope) and that he can have an iron infusion as he is anaemic and still very tired.
He seems a bit better in himself.

Lizard after the op try and get to see a dietitian. We had to figure things out for ourselves and DH kept bringing up bile when he ate anything. Soup is good and any 'baby food' type stuff (soft, cooked fruit and veg).

Please PM me if there is anything you want to know. My DH had most of his pancreas removed but isn't diabetic. He takes pancreatic enzyme tablets with his food though.