Hello everyone. I'm new here. Not quite sure what to say next..

Hello Sally,
I'm so sorry to hear about your husband's diagnosis, I'm sure you are both quite shocked by the news which is completely natural. A lot has been said on other places on here that it is really difficult for family and friends to know how to help etc. I'm sure there will be some lovely people along soon who will be able to help with your question.
In the meantime a big hug for you and I will keep you and your husband in my thoughts. I hope all goes well on the 20th. Take care

pheonix xxx

I think we can all equate with the state of shock you're feeling at the moment. It's horrendous when the diagnosis comes out of the blue. It does sound as though the local hospital has got your husband in at the earliest possible opportunity to get the surgery done, and unless you have been disatisfied with the way your husband's case has been handled and have doubts about their competency I think your husband should be fine having the surgery locally, especially if there is any follow up.

If they have told you that the outlook is good, it may well be that your husband is trying to show some of what we term "pma", positive mental attitude, rather than denial. It may be that he does not want to keep going over and over the situation, but just compartmentalise it in order to cope with the prospect of the surgery. Everyone comes to terms with the diagnosis in different ways. I have a friend whose husband never discussed his cancer, as he didn't want to think about it. My partner doesn't encourage me to talk about my cancer, as it upsets him. Everyone is different! Have you and your husband been assigned a Cancer MacMillan nurse yet? If not, it might be a good idea to ask - either at the hospital or at your gps, because they are there to provide support not just for the patient but also for the families: it may be the personyou need to talk it all over with.

Wishing you both all the very best. Please keep us posted. xxxx Penny

Hi Sally, I'm a relatively new patient to this illness a 56yr old male in a 32 yr relationship. I have a patriarchal position in my relationship with my partner and seven kids. (I'm not advocating that this is the way it should be just the way it has worked for us). Given the forementioned I felt that I had been hit across the back of the head with a bat when I was given my diagnosis and felt I had nobody to turn to, until in fact I found this board.
During my initial period of malaise I had my devoted partner in tears, not by intentionally being brutally forthright ,but in hindsight I was much less considerate than she had come to expect of me over our lifetime together. On reflection I ,the fixer, was frightened and out of my depth.
I can happily say that having found this forum and after speaking personally three times to cancer nurses I became more accepting of the nature of the beast and subsequently far more civil to my family. Seeing me back on track has given my partner and kids a good leg-up and I can see the happiness in their faces again.
I can't know how your husband feels about his diagnosis but i he is anything like me it might take him a little while to adjust.

Hoping everything works out well for you and yours. Johnny

Hi Sally,

I'm the caregiver as well, 27 years married. What everyone has said so far is quite right. Each of us deal with this news in different ways. Part of it is based on our personality, part of it is our "hat" or "role" in the family, part male, part female, confront, courage, fear, etc. The best thing you can do right now is to come here and get support for yourself. The stronger and more sustained you are the better you will be as his partner and caregiver. You will find strength here as everyone seems to offer incredible and enlightening perspectives whether they have the cancer or are a caregiver. I can tell you that in my marriage I'm the optimist and hubby is the pessimist. Its always been that way with us, our personality make up. We deal with it very differently. But I'm very sensitive to the fact that it is happening TO HIM and me as well though differently. We can't talk about it all in one sitting, so little bits and pieces are discussed and I defer to him and what he can comfortably confront is what is discussed. I come here to get my shit out and what I'm feeling most of the time so as not to burden him. I learn a lot about what it must be like from those here who are dealing with cancer very personally. They teach me a great deal and help me to help my Dave.

I get frustrated that I do all the research, all the reading all of the learning about the cancer HE has! But he just can't confront it yet. Since I can, I do and then I spoon feed him bits and pieces so he understands what is occurring and what will happen next. I encourage him to learn for himself, but he just isn't there yet and that's why we have each other. We do what the other can't.

He has just been diagnosed, so don't expect too much. Your fears and worries are not going to be the same as his. So try to confront your fears as best you can and don't lay them on him right now. I call it guerilla warfare. I feel the fear coming on, I grab my oozie, run in and look at it, handle it in my universe, shoot the hell out of it and get out! I know it sounds silly, but it is very much like that. Don't try to take on the whole war in one battle. Little skirmishes are much more confrontable. I worry about him, money, being bankrupt, our children, how will I support myself, what if he loses his job, etc. I can really ratchet it up if I want too. But I try not to go to those dark places and get sucked in. So hang in and come often and get yourself uplifted. Try the chat room when you can. Its friendly, sometimes crazy, very light in conversation, not to heavy, but you'll find a camaraderie there. - Lori

Thanks so much for your replies, everyone.

Lori, as a fellow caregiver, you echoed a lot of what is happening with us. My husband also can't have a long discussion about his diagnosis, and the horrible thing is that we have actually had rows., too. It seems appalling this should happen at such a time. I'd always thought that things like these bring people closer, even bring a new understanding to the relationship.
So far, its become apparent that we differ wildly on our ideas. He just wants to go along with everything he's been told; ask no questions, do no research, and not think about treatment options.

I'm the opposite - I don't have so much faith in the NHS, having been a long term sufferer of asthma and depression. My husband is a clinical psychologist - that fact alone has caused many problems, both for myself in that it's been incredibly hard getting to see see counsellors and other psychologists as they all know him, so there are confidentiality issues. The problems for him have been that he had recently been penalised for taking time off work to come home to me when I was very ill earlier in the year.

.That had already hit him very hard, as he has worked for the NHS for 33 years - a devoted and loyal employee.Now this happens, and our role are reversed - he was my carer - now I'm his.
So he has bit hit by a double whammy, so to speak, and is at times extremely bitter, angry and depressed. (At least, in my view he is depressed).
The operation is looming, and so is the final visit to the consultant. Andrew doesn't want to make a list of questions to ask her - for example will he need chemo afterwards. One thing that makes me worried is that this consultant doesn't do laparoscopic surgery, which I understand would be easier on on the body.
So I'm dreading this visit as much as he is. Another issue I am going to have to discuss with him soon is that I have just learned, on this site, that there is a drug that can cause numbness in the hands and feet. Andrew's great love and talent in life is music - he's a keyboard player. And he ought to know about this side effect, because playing his music it what centres him, gives him emotional outlet, and has always been his major resource in life.
The other thing he won't discuss is his mother, who phoned me up a few days ago and accused me of making him ill. This was dreadful, and I feel she may be right. But that's off limits too. So I feel I've lost him already, in a way. We don't have the right to a Macmillan nurse apparently, because my doctor said Macmillan is only for terminally ill people. So I do feel isolated. Hopefully this site may help, so I can talk to others and not worry him. Sorry for going on so long...
Thanks again
Sally

Oh Sally, I feel for you. Well, try mentioning small pieces of information, not all that you know. Pick some of the important things you have your attention on and gently mention just one of them. You know, like, "Hon, did you know they can to this surgery laparscopically at such an such hospital and that your recovery would be quicker?" Stuff like that. I can't tell my husband all the stuff I have learned or found. He just can't confront it. So I eek it out in small doses in light conversation, kind of matter of fact.

My husband and I had bad fights in the beginning as well. It was horrible. I totally understand how crappy it makes you feel. Tell him you are sorry, you love him, and you are just scared. You will keep trying to do your best and don't ask anything of him, except to forgive you.

Take your list of questions with you and you ask them. Most important ones first in case your husband gets squirmy. I ask ALL the questions, its hilarious. Dave is like sitting there while the doc and I are having long conversations.

Ok, on the numbness. The drug they should give him for this is called gababentin (generic name for neurontin). Its a safe drug. However, I avoid drugs if possible, but will take them if needed. I like to try other things first. My husband's doctor put him on

B6 50 mg/day
Folic Acid 1200 mcg/day
B12 shots (every other week) - I've heard you can't get these in UK
Neurontin 300 mg/day

Now I got rid of the Neurontin by replacing it with an antioxidant called Alpha Lipoic Acid. I give him 600 mg 2x/day but can go up to 2400 mg/day. My doc supported and is thrilled that it worked. He later found out one of his colleagues was prescribing it for his cancer patients with L-Carnatine (sp).

Peripheral Neuropathy is what it is called and it is important to keep it under control as it could cause permanent nerve damage. Peripheral Neuropathy is often caused by the chemo, but can also be caused by a vitamin B deficiency.

You are in my thoughts Sally - hang in!

Oh Sally, I feel for you. Well, try mentioning small pieces of information, not all that you know. Pick some of the important things you have your attention on and gently mention just one of them. You know, like, "Hon, did you know they can to this surgery laparscopically at such an such hospital and that your recovery would be quicker?" Stuff like that. I can't tell my husband all the stuff I have learned or found. He just can't confront it. So I eek it out in small doses in light conversation, kind of matter of fact.

My husband and I had bad fights in the beginning as well. It was horrible. I totally understand how crappy it makes you feel. Tell him you are sorry, you love him, and you are just scared. You will keep trying to do your best and don't ask anything of him, except to forgive you.

Take your list of questions with you and you ask them. Most important ones first in case your husband gets squirmy. I ask ALL the questions, its hilarious. Dave is like sitting there while the doc and I are having long conversations.

Ok, on the numbness. The drug they should give him for this is called gababentin (generic name for neurontin). Its a safe drug. However, I avoid drugs if possible, but will take them if needed. I like to try other things first. My husband's doctor put him on

B6 50 mg/day
Folic Acid 1200 mcg/day
B12 shots (every other week) - I've heard you can't get these in UK
Neurontin 300 mg/day

Now I got rid of the Neurontin by replacing it with an antioxidant called Alpha Lipoic Acid (there are newly released research papers on this nutrient). I give him 600 mg 2x/day but can go up to 2400 mg/day. My doc supported and is thrilled that it worked. He later found out one of his colleagues was prescribing it for his cancer patients with L-Carnatine (sp).

Peripheral Neuropathy is what it is called and it is important to keep it under control as it could cause permanent nerve damage. Peripheral Neuropathy is often caused by the chemo, but can also be caused by a vitamin B deficiency.

You are in my thoughts Sally - hang in!

Hi Sally

I can sympathise with the employment side of this sad story. I too was diagnosed with cancer and received no support from my NHS employers. I lost my job after having had 6 months sick, mainly due to the terrible time I had with sickness and fatigue from the chemo.
On the subject of the Macmillan Nurses. I was able to speak to my GP and was referred at my request to a Macmillan Nurse who in turn supported me and referred me to the local Hospice where I received fantastic care and support. Incidently, I am now 5 years down the line with lots of health hiccups on the way but have a mainly good, healthy life now. I might be wrong but I believe that you can contact your Macmillan Nurse yourself as a carer. Hope this info helps you.
Very best wishes to you both
Lily

Please do check on this issue out again - perhaps it would be a good idea anyway for you to ring the nurses on this site and speak to them about your husband's treatment. I am terminal but was not told about the availability of a Cancer macMillan nurse even though there was one working in the oncology department - whereas the patient who told me of her existence when we were in hospital three months later was definitely NOT terminal, and she had been offered the service upon diagnosis: I think it depends upon one's consultant. I would check up on this as your gp may be mistaken, or trying to save money or - I don't know, but I do know that there are plenty of people here getting all sorts of help who are going to be survivors! I think it is a bit of postcode lottery though the exact things on offer.
I am sorry about the music and the worry that the chemo drug may cause neuropathy. Of course this is another thing that your husband should be noting down to discuss with the consultant - but it all sounds very difficult. Oh dear - inlaws! We had a horrible time earlier this year with my partner's sister who was incredibly aggressive towards me, and eventually told me straight to my face that the only thing she was worried about was the effect my death would have on her brother financially. It's just otiose, one of the many tribulations that pile on top of us when cancer strikes, and I'm sorry to hear you have such an unsympathetic mother-in-law: well, you really wanted to suffer from depression, didn;t you: that's another condition that most people fail to understand. She probably told you to pull yourself together....
Anyway, sorry for rambling on, but this all really struck a chord, and I'm just hoping that things go better than you are expecting.
Best wishes xxxx Penny

Thanks so much for your replies - they were all really helpful and very comforting. The tip about neurontin to counteract the numbness is brilliant - I will ask the consultant on Tuesday. As I know I'm going to be in an emotional state then, which always affects my memory, do you think I might be allowed to record the interview? It's going to be such an important a thing to remember.

Regarding tMacmillan nurses, I shall contact them first thing tomorrow. Thanks for letting me know that I could do that.. I have been been feeling very scared about the post-op care. The hospital are sending him home after only 5 days - he may even have a colostomy bag. I asked if they would be sending a district nurse to check the stitches every day, but they said no, so it's all down to me. But if a Macmillan nurse could call in that would be a great load off my mind.

Perhaps the hospital ought to know they are sending my husband home to a very large shabby house which is not a model of sterility . (We are not practical people, psychologists and artists). I'm doing my best to get everything clean and tidy, but our golden retriever, Anna, tries to sabotage everything I do behind my back!

Anyway, thanks again for your support.

Sally