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.

Pat?! the old bag turned up here for weeks on end at one point. suitcase and everything.

I spoke too soon. With the onset of peripheral neuropathy, PAT's feet are now firmly under the table again.

oh that's a delight. Pat AND peripheral neuropathy - enough to do your head in completely. Both temporary, both an utter pain in the @rse and both mentally and physically debilitating ((hugs))

Morning All! I hope all is going as well for you.

DH starts the second course of chemo tomorrow four boring hours plugged into an IV. He then has another 9 days on tablets.

However, by sheer good fortune I discovered that as well as the blood test he needs to have done today, he also has an appointment with the oncologist at the same hospital. So he's off this afternoon, straight from work, and I truly wonder what version of events he plans to discuss!

Don't get me wrong, it's fantastic that his first course of chemo was remarkably free of side effects. But I simply know that he's going to skate over the facts and do his usual anecdotally based selective reporting. I think I have managed to impress on him the need to take the peripheral neuropathy seriously but beyond that it is anyone's guess what the oncologist will uncover from DH's cheery way of saying absolutely nothing at all!

This is the first time he's gone to any cancer related appointment alone and it is only a routine follow-up. I also don't want to treat him like a child but for all that, I know what he's like. Did any of you have similar problems?

Sorry ,seen this too late ,was going to suggest you phone his specialist nurse .

Umm any chance he might be more honest if you're not there ? I know I find it hard to discuss fears ,real issues with DP next to me .

Clutching at straws ,sorry .

How did it go ?

It went fine. He appears to have been upfront about everything although in fairness, there wasn't anything much for him to get "anecdotal" about. But he reported back that he'd now got appointments in September for his next scans and that they reckon he should breeze through chemo. I seriously doubt this last, somewhat over-confident assertion however!

As it happens, today's chemo really wiped him out and he's developed cold sensitivity too. He also reports what he describes as "gastric unease" although the anti-sickness meds seem to have kicked in. But I fear that things aren't going to be quite as breezy as he's decided they are.

Hi, how is everyone doing?

Pande my DH is losing teeth too! Got to go into hospital to have a second one removed, think it is linked to cancer?

lizard did you get an official diagnosis? Hope you are ok

Where is Lisa?

Latest with me is hilarious....asked DH if he could possibly help out a bit more with childcare, he offered to walk DS to school, fell over and fractured his elbow

So he can't lift, drive etc doing even less than before! Ironically yesterday he had his blood transfusion and is feeling really well!

Hellen, if you didn't you'd cry.... dh started doing a lot more with the dc than he had before too, in between chemo. fortunately no broken bones though Hope your dh has a speedy recovery.

pandemonia, the hypersensitivity to temp goes with the territory ime. dh still ridiculously sensitive to heat and cold. we had hilarity on this thread in the winter when all the mid-chemo dhs were going around looking like bank robbers.... wrt peripheral neuropathy, dh had the drug that caused it left out of cycle 4, then it was put back in to 5, with the blunt remark that you're better off alive with numb fingers than the alternative it is almost always temporary, revolting but temporary. the worst bit for dh was losing his fine motor control and me having to do up his buttons. a whole bunch of other stuff related to self esteem goes part and parcel, so just be aware. He couldn't pick up cups and plates when at his worst, nor type, and he loves fiddling with computers. Horrible few months. Thankfully completely recovered now.

I must say that I'm glad his chemo has started in the summer MrsShrek because the idea of him staggering around toothlessly in a balaclava is one I could do to avoid for a bit. I was expecting the cold sensitivity from the outset so I guess it's a bonus that he's got to the second course. He's also decided that the peripheral neuropathy - or what he now calls his "chemo leg", has advantages. Only he's managed to get out of at least two outings that I might otherwise have insisted he came along to!

Oh, and of teeth, Hellenbach, I'm convinced that it is cancer related. He's lost 3 in the last 2 months and the remaining front tooth is now at an ever more jaunty angle. With the likelihood of his chemo shrinking his gums I'm betting it'll be history soon.

Tomorrow we find out what the treatment plan for DH is. The consultant,radiographer,oncologist,pathologist etc have a meeting together in the morning and our nurse specialist will give us the result in the afternoon. Fingers crossed.

DH seems to have got used to the idea of having cancer and is in a sort of 'phoney war' state of mind. Tomorrow will be a harsh dose of reality for him.

I know people don't know what to say to us but I am so sick of the positive attitude line and if anyone else tells me that 'they can do such marvellous things today' I may scream. Someone we see everyday almost keeps asking him how he feels with a meaningful look and I got so tired of hearing it that at the nth time I said,"DH feels as well as anyone who has cancer can under the circumstances", Naughty but I was fed up.

I'm pretty sure he will have chemo at some stage and I don't know what to expect. I realise that everyone reacts differently to it but could you prepare me for some of the things he might experience. Does everybody lose their hair? Will he get very tired? etc.

It does depend on how aggressive the chemo is and everybody's is different. The consultants/specialists should be able to give advice on his particular chemo possible side effects.

Good luck tomorrow

Drudge, it all depends which version of chemo it is, with which drugs. there are loads of regimes, and with or without antibody treatment. also different cycle lengths (dh had 21 day; there are ones where people go in as inpatients for treatment, some for one day, some 14 day, some daily meds at home) once you have more clues about which chemo drugs then quite possible that someone will have pointers for you. I think we all know how that need for information feels, I was exactly there and very at why nobody would tell us enough info. Once dh had a treatment plan, things felt more in control. we knew when his chemo days were, which days he needed which other drugs. steroids went throughout treatment. our area goes straight for top rate antiemetic meds, some don't. can give you names if / when needed. White counts drop mid cycle and there are regular blood tests throughout chemo, with boosters to get neutraphils back up if needed. loads more info when you need, try to take notes if you can at the appointments/ phonecalls. hugs.

I hope the meeting is productive, drudge. It may well be worth taking notes at this sort of appointment too. I agree that it is really frustrating getting the "positivity" cliches all the time too. What I found really irksome (and still do) is being constantly reminded of how wonderful the treatments are nowadays. Although in reality, the treatment and management of cancer has come on in leaps and bounds. Not least because it is one of the most well funded conditions out there. However, there are still no miracle cures and it gets very irritating being given this mantra, especially by people who haven't had, or been very directly affected by a diagnosis of cancer. Be prepared for your DH to go through a whole range of emotions though. It takes quite a while for a diagnosis of cancer to actually sink in.

As for chemo and what it might entail, MrsShrek has it pretty much summed up. Different cancers are treated by different drugs. Every patient is affected differently by these drugs. Some significantly, some not particularly but there will be side effects. However, chemotherapy is carefully managed since it isn't in anyone's interests to make a patient so dreadfully ill that they simply refuse to carry on.

DH has bowel cancer and his chemo drugs don't usually cause hair loss. He is on a 14 day regime - 10 days on, 4 off with the first day involving a 4-hour stay in our nearest Cancer Centre being given one of his chemo drugs by IV. Then it's another 9 days of a different drug taken in tablet form plus accompanying anti-emetics. He has to have a blood test 24 hours before each course to check that his white cell count is acceptable to proceed. Other people with his type of cancer get a 21 day regime. Our area also goes for top rate anti-emetic meds which makes a huge difference.

You will almost certainly get a specialist Macmillan Nurse. They are excellent and can answer all your questions and provide support.

So sorry to hear about your DH too, Hellen - just what none of you needed!!

Well the meeting today raised more questions than answers. The CAT scan showed some masses in the liver so he has to have an MRI scan to find out if they are cysts or tumours.

We see the consultant on 24th who no doubt will repeat all the nurse specialist has told us but according to her he has to see DH by law before he can operate(?). He is then pencilled in for a section of bowel to be removed on 8th August so more waiting. Might be keyhole, might not.

DH was in quite a state before today's meeting with specialist nurse but seems calmer now. Started rambling on about random things that had no bearing on the meeting so I did all the questioning.

Bit worrying, they thought he had Parkinsons disease(he doesn't) and had had a pulmonary embolism in the past (DVT in leg 15 years ago).

Oh Drudge it all sounds very stressful and difficult for you both.

I think the unknown is so hard to deal with. Hopefully when he has had the op you will be able to move forward.

Re the chemo I think one thing that makes a difference is how ill or well the person is prior to the treatment starting. Unfortunately my DH was already ill, he had lost weight and was quite weak, so he couldn't tolerate it very well.

I have met others who have just had a couple of bad days after chemo and then bounced back. Hoping that will be the case for your DH.

Sounds like a very difficult day, drudge. I'm afraid that quite often, in the early days after diagnosis you do feel that more questions are raised than answered. However, because cancer is such a personal condition it is often hard to get one single opinion - on chemo, for example - or a clear long-term plan.

I'm a little surprised that your DH didn't get booked in for an MRI scan at the same time his CAT scan was ordered though because it is the combination of these two procedures that provides the best information.

Have they mentioned chemo, either before or after his planned operation?

Hi I've been reading this thread over a couple of nights and feel a bit of a fraud posting here as my dh has not been diagnosed with cancer so far...however, on Tuesday he has a biopsy of his prostate due to it being deemed abnormal at a previous appointment (DRE) - he had a camera in his bladder today which found nothing untoward but he was told his PSA level was double what they would expect for a man of his age (he is 45).I know that he might not have cancer but there is obviously a chance and I am so worried - he feels I'm not supporting him because I tend to look on the black side of things and keep saying "what if?" whereas he is the eternal optomist.I just need someone to tell me it's all going to be ok-which of course it might be but then again ...it might not.We have two children who know their dad hasn't been well and is having tests but they don't know what the outcome might be.Thanks for reading if you've got this far xx

dont feel a fraud chatty !

You will find that everyone agrees that waiting for results is up there with the most stressful of times !

What is the next step for your DH - more tests ? Are you waiting for an appointment to discuss results ?

Thanks ginger I think the waiting is making it worse I could be stressing over nothing.He has 2 appointments next week the biopsy on Tues and a CT scan on Thursday but no follow up appointment booked as yet.I just keep thinking the consultant must think it is cancer to send him for these particularly the biopsy which sounds awful.We had a bit of a heart to heart last night but I'm still very emotional xx

I so feel for you chatty .

I've just googled prostrate biospy ,it doesn't sound a load of fun does it ?
But ....I expect the embarrassment factor will be the worst thing . The staff doing the test will want the patient to be relaxed and ok - not least because their job would be impossible otherwise .

I think if it were me I'd phone the dept and ask if they offer a short term sedative . If not I'd be asking my GP for a one off dose of lorazepam .

You need to ask how and when you'll get the biospy result . I would ask the dept doing the biopsy or ,more preferable ,phone the secretary of whoever you think is dealing with his case ( is there a consultants name on any letters ) and ask them .

To be frank ,I think if the biospy result is not good then you'll get a phone call from hospital pretty soon afterwards asking you to come in and discuss the results .

I had a biopsy on my throat and got the ( not good ) results a week later . Just mentioning in case that gives an idea . They have targets re dealing with things ,so that might be a guideline .

If it's any help ,I found being the one who went through it I was beyond shocked and really didn't believe it . I think that shock protected me in a funny sort of way and it was my poor DP who was thrown into despair because I suppose he was more in touch with reality .

Which is just to say how tough I think it is for the partners .

So post away on here if it helps

thanks very much for your kind words I suppose I do feel it's a bit unreal at the moment - they told him yesterday that the biopsy results are taking about a week at the moment and if they are clear they will let him know by phone - if not we will have to wait to see the consultant.

I still feel bad posting here as I read the entire thread and I know there are ladies on here dealing with far worse things than me - I had a good chat with my sister yesterday and she was very supportive although the nicer people are to me the more I get upset!I also told a good friend today and she offered tea and a shoulder if necessary but somehow it feels better to write it down here almost anonymously if you see what I mean xx

Please don't feel bad posting here .

I know what you mean about people dealing with worse stuff ,I always think that .

But it doesn't mean that your fears and distress are any less does it ? I find it just makes you feel unworthy/guilty on top of everything else !

The waiting is honestly one of the worst bits ,you're totally entitled to feel dreadful .

Thanks so much I've managed to go a whole afternoon without crying and spoken to my mom and my mother in law who didn't know anything about it so feeling quite pleased with myself!My eldest son shocked me by talking about cancer today I suppose I should have expected him to work it out he's a bright lad but does seem to have inherited my pessimism which is not so good!xx

Hello everyone, I've been thinking of you all although I've not been able to post until now.

Sorry to welcome you along chatty & I hope that your DH's results are positive- you are in the right place here for support & advice.

I can't remember if I have updated this already, my phone seems to be stick at the moment & won't let me load old messages but my DH has his operation to remove part of his pancreas and his spleen on 12 August. Diagnosis was 19 June- the time is getting closer but this just seems such a horribly long time to wait. It's like a blood horrible dream you have over & over again sometimes, things are normal for a bit & then you remember how things are going to be in a few weeks time.

Does anyone know how quickly they will be able to tell if it is cancer for sure & details about it after the operation? They highly suspect it but haven't told us what we are dealing with yet as the biopsy was not conclusive.

Holding hands all round x

chatty, you read the whole thread? goodness me....
hang in there. unanimous verdict that waiting for.results is THE worst thing, followed closely by Pat. (as you've read it all I won't have to explain,phew )
dhs specialist nurse said the "other half" is always hit worse than the patient....fwiw, me too, this is where these threads started a year ago this week...