Rarely deep, sometimes meaningful. My reserves of positivity are severely depleted, however, and I’m getting less adept at masking my annoyance when she dives off into another bout of beating-self-up over the ‘why me?’ business, blaming anything from too much red wine to insufficient consumption of salad. 7cm IDC/DCIT 11/16 nodes incl. apical plus extranodal spread; it’s a shi**y picture which, of course, you *have* to spin positively, but five months on from DX I’m realising this is only the very start of a longhaul trip.
Discussions with my wife have been mainly practical. Mainly around what/when, arrangements for care for the boys (both sets of grandparents are reasonably local so helped out hugely). As I am a techie, I tend to follow the medical talk better than my wife, and often went over it later. I think I also managed to detach a little and thus listen better - I definitely heard more as my wife sometimes switched off a little when she got overwhelmed with info.
The deep meaningful stuff has been here, as I don’t want her to think I am worried too much. It is only a year on I have mentioned when I was most scared. My wife opted for chemo first then surgery. One of the chemos has a risk of causing heart failure. As she was getting ready for surgery she was tiring quickly, swollen legs, out of breath easily. Basically the symptoms of CHF. The side effects of one of the steroids used were also similar, and she had just had six months of reduced physical activity as she was on chemo. I was seriously worried abut how she would cope with surgery.
Fortunately, she has been very matter of fact about it, with no obvious bouts of self pity.
Hi Gent’s,
First of all I would like to express my deepest empathies to you all for your unfortunate circumstances, and I send you huge hugs for all the support that you have and continue to provide to us ladies.
Secondly I would like to apologise for crashing this thread, it’s jut that I’m not entirely sure where to post this topic to be honest, so I’m hoping you can shed some light on my question of ‘what support partners entitled to through their employers, if any at all?’.
My partner and I are in a bit of a unique and unfortunate set of circumstances as I am 28 years old, we have one daughter 16 months old and I am currently 27 weeks pregnant with our second child and I was diagnosed on 12 January this year.
So far my employers have been excellent, but my partner’s employer seems to operate a ‘one rule for one, and one rule for another’ policy when it comes to dealing with people thrust into our situation. His collegue for example was permitted to take whatever time he needed to help his wife through therapy without the need to pay it back to the company even though his wife was his only dependant to take care of (as the kids had all moved out), whilst my partner has to work back the hours when he is not in the office whilst caring for me and our children. This to me seems very unfair…
Again, so sorry for crashing this thread…
Lorna
Hi Lorna,
You haven’t crashed the thread, you’ve revived it! You raise a very good point about what, if any, support partners get from employers. It probably does vary from employer to employer and, I’m not surprised, even within companies. There are some rights for employees who ‘care’ for others such as being able to request flexible working whether hours of work or being able to work from home for example. At the moment I have an informal agreement with my line manager that means I am able to leave work earlier by adjusting my hours. It may be in the future that I might need to arrange/request something more formal but the current arrangement works for now. Your partner would also be entitled to request flexible working but the employer is not obliged to agree it if it doesn’t suit their operational needs. Unfortunately the “one rule for one and another rule for another” is all too common. Often managers are given local discretion as to how they operate and inevitably this leads to unfair situations. If your partners company is large and has a HR department he could talk them about what his options are perhaps. Is he a member of a trade union? If so they could advise. If your partner is getting stressed, and who wouldn’t, it might be worth him going to his GP and getting signed off. I have done this when I needed to be around when my partner was in hospital.
Might be worth talking to McMillan! They give very good advice.
Hopefully some others will be along with further advice>
The very best of luck to you and your family
Lorna, I’m in the mood for handing out electronic hugs this evening, and it seems as if you could do with some. The helpline might be able to help, so give them a ring in the morning. Also your BCN might be able to suggest some practical support.
Good luck, and repeated thanks to you lovely chaps for being their for your loved ones.
CM
x
Hi Lorna
I was diagnosed in October. My husband was advised to go to the doctor and get signed off with depression due to the stress of caring for me. He was signed off for 6 weeks in total which helped as I got an infection from the operation and had to have skin grafts.
maybe he could chat to his doctor, my husbands was very understanding and is work encouraged him to go to the doctors
hope it gets sorted for you.
To all you partners writing on here we are lucky that you are all understanding. hope all goes well with your partners treatment
xx
Hi theloner.com, summer20 and ChoccieMuffin,
Thanks for the advice and support from you all, it’s very kind and much appreciated 
x
I don’t know about you ladies and gents but I find thinking about the logistics of the entire situation to be worse than thinking about the treatment at the moment (I’ll be starting Chemo in a week or two, no date yet! so I guess my feelings could change by then, lol).
Thanks for the advice from you all about getting signed off, ordinarily something I wouldn’t advocate, but if you can get no support through anybody else, then I think it’s definately worth a shot! My partner and I certainly wouldn’t have though of that!
My partner has a meeting with his trade union this morning, so I’m very much hoping that they will be able to get him the same treatment as his colleagues received in their hours of need! and if not I’ll suggest the ‘getting signed off scenario’ and see how that sits with him.
Hopefully it’ll be good news from the Union, but I’ll keep you all posted with any development that could be of benefit to the lovely caring partners
Hugs to you all,
Lorna xx
So anyway, here we are on our weekend away. Partner in bed asleep and I’m watching match of the day. Herceptin side effects have meant she hasn’t got a lot out of this weekend. A nice hotel and good food doesn’t mean a lot if you don’t feel well. We’ve agreed not to do this again until she’s finished treatment and is feeling better. Feel old, tired and lonely…
Good luck everyone.
Just as important as the weekend away is the care that you’ve shown in wanting to do something to make her feel special.
So you enjoy your football, and I hope you’ll both enjoy someone else doing the washing up. It’s not the sort of weekend away that you might have had 6 months ago, but the little things like someone else changing the bed and hoovering up the crumbs can be very relaxing.
You can also have a think about where you might want to go and what you might want to do for your next little jaunt. If a weekend is a bit much, then just a little day trip can lift the spirits. If you’re not too far from the seaside, take a drive down there, have fish and chips, a walk on the beach if your OH is feeling up to it, or just sit in the car or on a folding chair and watch the waves. then come home again.
Little pleasures.
How I agree with you choccie muffin about the little pleasures in life. Certainly, in my situation, I don’t need grand gestures all the time just the feeling that I’m loved and thought about.
Currently going through second chemo with herceptin and pamidronate so some days are not very good and then my OH comes in from work with a little gesture like a bar of choc , a magazine or even a takeaway so I don’t have to think about dinner and suddenly the sun is shining again. To feel loved is the most important feeling when living with this horrible illness and to know that there is somebody by your side willing you on and not letting you give up when the dark clouds descend is a really good feel factor.
Now the sun is shining here so just going out for a walk with my OH holding my hand every step of the way.
How blessed am I.
Liz x
ChoccieMuffin and NannieSpiky, I know what you mean about enjoying the little things etc and we will continue to do that as best we can. I wrote that last message from within the hotel room, we’re back home now, and was probably feeling a bit sorry for myself. I found myself reflecting on how it would have been before all this kicked off. We had a leisurely drive home today and stopped at a pub for sunday lunch which was nice. We did agree that all said and done it was just about worth it to go away but that second, and even third, thoughts might be taken before we do it again! Speaking for myself I seem to have entered a kind of twilight zone whereby I am feeling very disconnected from life and am finding it very hard to enjoy anything at the moment.
Loner, please do me a favour and keep an eye on that disconnected feeling. That’s not a rare sign of the start of depression, and given the situation you’re in it wouldn’t be unexpected. There you are, trying your darndest to be strong and supportive when you’re also feeling the scary stuff.
It might not do you any harm to have a quiet word with your GP at this stage, just so he or she understands that you’re feeling the pressure too. Or if your cancer centre has a support thing associated with it, drop in and have a chat. Some places have Maggies or Haven, my hospital has a support centre just down the corridor from the chemo suite, and they’re wonderful. You might even find a couple of counselling sessions helpful, before things get out of control for you. You will probably be able to get that at no charge, so have a think about it.
I really feel for those people who are in a supporting role and the pressure they are under. For me, my lovely daughter who is only 22 has been dumped on with all sorts of rubbish lately and she’s been a complete tower of strength. The Fountain Centre has said that they’d love to have her come in even if it’s just for her to have a massage or a bit of pampering, because they acknowledge supporters as well as patients have a huge weight on their shoulders.
And of course there’s always the BCC helpline. They’re not just there for crisis help, but to be a listening ear.
You do sound like you are on the edge of depression. It is not unusual at all.
Maybe now might be worth a little more about me. I have been through depression (before the cancer) but I am a little unusual. I am very like my eldest, who is likely to be tested for asbergers. Much of the social niceties I have had to learn cognitively rather than intuitively.
With my make up it did help when I was diagnosed with depression. I was kind of OK once I realised that was what it was, and what had triggered it. I had gone to the docs worried about type 2 diabetes (over 40, over weight, tired, no motivation…). The up side is that I know what it is now, and when I feel it coming on I can recognise it and take appropriate steps to straighten myself out.
While we were in the treatment phase, I felt it gnawing at the edges a little. I am now perhaps better placed than many to spot it in myself, and deal with it.
Please, see your GP. It is NOTHING to be ashamed of.
Paul.
Hi
My partner the same buried head in sand .
I left went to my mums ,
In first week of chemo he has asked for help with me.
Meeting my bcn nurse tomorrow been to see his doctor.
He is taken some time off as well.
He thought he could cope with me and my situation,
We are taking things day by day and starting to re build
Our lifes ,
We are planning a holiday after my chemo in june ,
He is totally trying now.
I totally understand
Wishing you luck
Love rosie x
It is a very difficult situation, I know my wife is fed up of me asking how she is, constantly wanting to take her temperature, she is a very practical lady with a very strong personality and very strong willed you are damned if you do damned if you don’t in this situation.
When people ask ‘how are you’ I give the answer it’s not about me it’s all about Marg.I found to be honest once treatment started it was a lot easier waiting for results was horrendous, she has had one bout of chemo and she has had very few side effects (touch wood) and our life is near normal as this disgusting disease allows.
I am lucky in that my company allows me time off when I need it so that is fortunate.
I cope by talking to people and posting on here, my wife copes by living life as near to normal as possible and planning for the future you deal with it as best you can no one way is correct.
Thank you for your thoughts and comments. I have no doubt that I am hovering at the edge of depression, sometimes more in than out. I have been here many times and am very experienced in how to deal with it. That doesn’t make it alright of course. I went twice to my GP and was not impressed. He asked me questions written on his computer screen, pressed a button and the computer’s verdict was ‘Depressed’. I was then prescribed anti-depressants. The first time I didn’t take them but after the second visit I did. Unfortunately the side-effects outweighed any sense of well-being, so I stopped taking them. I think therapy/counseling may be more helpful and asked my GP for this but what I got was some cognitive therapy which I don’t need because I do it every day. Interesting that LargerBloke mentioned Aspergers because, well, I am an Aspie.
Anyway, this is in danger of becoming self-indulgent. This is not all about me. I am here to learn and talk about breast cancer and the above is for another forum.
What I will say though is that when something like this, breast cancer, happens in a relationship it exposes lots of stuff that was previously buried. Sometimes that can be good, sometimes bad. Make or break and all that.
Take care out there!
Loner, what you’re going through is caused by BC so it IS relevant to this forum. You’re not being self-indulgent, you’re trying to keep yourself as strong as you can so you can support your OH, and if you do that by talking about things that make you feel low, then that’s got to be a good thing. And all of us want to feel that our partners are also getting the support they need, it doesn’t just affect the person with the lump.
My local cancer support centre offers counselling not just to patients but to their family and supporters, so you might want to have a chat with your OH’s BCN to see if that’s available near you. I can certainly vouch for the benefits of counselling, as much as anything because they don’t tell you what to do but help you to work things out for yourself. (Well that’s what I’ve found anyhow.)
Dear ChoccieMuffin, thank you for your insight and support. In many ways your, and everyone else here who has commented, support means the most. I have had some counselling before, for other stuff, so know how it works and how useful it can be. I will bear your advice in mind.
I think us partners of those diagnosed often feel guilty about expressing our thoughts and feelings. Hopefully we can keep a little corner of this very fine forum for ourselves!
Best wishes to everyone.
You partners are a very welcome and important part of the forum community. On lots of threads partners have joined in and put “the other side of the coin”, which helps greatly to keep some kind of balance. Long may the forums remain open and welcoming to partners, friends and family as well as lump-carriers.
As for anti-ds, they can sometimes make you feel a bit rubbish when you first start taking them, but unless the SEs are really yucky it’s worth persisting, or even swapping to a different kind until you find one you get on with. There are loads out there, so you will probably be able to find one that suits you, if you go down that route.