This is a great blog to take a look at written by an OH
best wishes to you both, great to have one visit done - a couple of thoughts but bearing in mind we are all different...
-my worst days were day 3-6 of each chemo week
-being angry at treatment is really normal for OHs, but we don;t get to do that cos we have to see it as a friend so go carefully on sharing the anger!
-I needed help with everything pretty much at different times, but just didn't ask; part of my coping strategy was to grit my teeth and get through it. My OH waited to be asked, but offering to help or just doing things on my behalf might have been a better reaction to my particular coping strategy. Its so hard for OH's tho - mine waited to be asked in order to leave me with the power, but some days I didn't even know what to ask for!
-my OH was wonderfully kind and loving and it helped hugely, just someone being nice in the face of all the horrid things that happen to your body meant a lot.
-as the chemo progressed I wanted company more and more, and felt unhappy being alone, thats just for the chemo week...so watch out for that.
I should just say (in case I'm scarring you) the Drs said I had the most severe reaction to chemo and the most widespread SE they had seen for years so hopefully your wife will be more like Julie or some of our other friends who had less SE.
best wishes Nicola
Lovely to hear you asking for help - think I was very slow in asking my husband for support. I know what you mean about seeing the FEC as poison - I did too initially and then part way through my first dose I thought "this will make me better" and that fight feeling went away and I felt a sense of acceptance that has helped me since. Do make sure you ask your hospital for help with any side effects - I had some bad nausea for first two doses but they finally got the medication right and that made everything so much easier to manage. Their view has been - let us know and we will see what we can do to help; don't struggle more than you need to. My buzz word is "managing chemo" - knowing how you might react after first dose really helps and then you can work out what what do medication, food and energy wise. Hope it goes well for you both
That's it, Richard the E is the Thin Red Line, going in to eliminate the enemy. (However much I hate its effects for a few days afterwards. I still feel trampled over nearly a week later, but at least it's halfway now.) To continue the military analogy, there will be collateral damage and your job is to help limit and repair that.
I was dx last year at 36. The thing that shocked me with my fec side effects was the impact on my hormones. I did a thread on it as it didnt seem to be specifically mentioned on the se sheets/info. It was a totally different kind of upset than the dx shock and felt like bad pmt or the week or two after childbirth, hormones whooshing all over. I was ok with it once we figured it was hormone disruption but it scared me and was hard to cope with for everyone once we had sussed it out. I dont think the info sheets are aimed at pre menopausal women particularly so there is a glaring hole in the info they provide, and it seems a pretty common se. My husband learned quickly that my upset was not me behaving badly and woukd just hug me and tell me it would pass and how well i was doing. We also did a quick diary of symptoms as the subsequent cycles were easier as you knew, for eg, that you were crying all day on day 7 last time but thAt by day 9 i was functioning, felt well and was making tea again.
Glad the two of you managed to get through today, and I'm sure you'll be a big help and comfort to your lovely wife.
Best wishes to both of you.
The cancer nurses at St John's Livingston are just superb. This morning was full of aprehension and I just wanted Alsion to be at home, but she was calm and just wanted to get on with it. The other women there having treatment were full of beans and it helped seeing one of the ladies having her last cycle and how upbeat she was, so something for us to aim for.
There were a few complications with the treatment, insofar as a nasty rash that suddenly appeared (something that is an ongoing issue with allergies to GA/antibiotics)but the excellent staff got it under control. The effects are starting to manifest and I think that Alison will find the next few days difficult to adjust to, but she has a tough frame of mind.
I have to say that watching the FEC being administered was tough for me, as I could see the red stuff clearly going in and just the colour said poison to me. At first I resented the nurse putting that awful stuff into my Alison and how it was possibly going to affect Alison's health and the fertility issues etc etc but then I saw the drugs as the army on it's way to seek and destroy those little cancer cells, and so began to thank the nurse (in my head) for helping rid Alison of it.
Well we are on our way now and only 5 more visits to go.
Time can't travel any faster.
We have talked about those things you raised although she holds a very good poker face and doen't show weakness if she can help it, so holding her to that promise is a challenge in its own right. With reagrds to a counsellor, we have an sterling set of friends who are a great set of ears and it also helps them get throught this too, but I will be looking in at Maggies at somepoint soon as I am aiming to complete a mountain marathon this summer with sponsorship on there behalf. Ironically Alison did the same last year a few weeks before she was diagnosed.
Thanks again Annie for your kind thoughts.
Hope today wasn't as bad as you thought; it was never going to be fun, but at least there is one out of the way.
My only thought re: how to help, is to sit down and declare that it is going to be difficult and to ask that your wife is clear if she needs help. Explain that you may not read the situation correctly and that you need her help as it might be better than you second-guessing.
Have you thought about getting some counselling to help you? My OH has and at least I know that I don't have to be looking out for him all the time as he's got support. Maggies or Mulberry Centre can help
Good luck on the journey - and just keep talking and being honest as I'm sure you will.
Cheers to everyone for all your help and advice, it has been more than helpful and appreciated.
Tomorrow (23rd) is the big day and off out tonight for a nice meal to try and relax. Wish i had a time machine and I could make the next 6 months fly by in a second, but we are just going to have to grizz it I guess.
All the best and i may have to come back here to ask for more advice as we head through the journey and new unexpected things pop up.
There's 2 Edinburgh R4Ls - you just turn up and speak to an organiser - thas all David last time - I think they put out an appeal over the tannoy. Be warned tho it's a very emotional experience - I found it so when I did them before I was diagnosed (mine's genetic so I did it for my sisters and grandmother) - the sea of pink back markers brought a lump to my throat then. Not done one since I've been diagnosed, and having discussed it earlier theis year decided I wasn't fit enuf (no muscles after too much time bed bound ) - saw the first TV ad and promptly went away and signed up! Now I have to be able to waddle that far - amanaged .75 km on the treadmill and was cream crackered!!
There's a group of ladies who lunch in Edinburgh on this board - may be worth a look? I used to be Linlithgow til we moved to Gods Own Country 4 years ago so keep an eye on whats going on down south.
We are in Edinburgh, but provided that I am not required at home I might very well take you up on your offer. Who do I need to speak to? That'd be a good thing to get stuck into for the Edinburgh R4L as well.
My life in green taught me "no plan survives contact with the enemy" it just makes me flexible and able to deal with any incoming. I just like to be prepared in advance for a multitude of situations/possibilities so I can help move along the most comfortable path as things present themselves to us. Some call it OCD 🙂
Come up to aberdeen (you're Dundee?) on July 3 and volunteer to hand out the goodie bags at the end of the Race for Life at the Beach - I'll be last in hobbling with a walking stick and David will be there too proudly wearing his red vest!!
Seriously, you sound as if you're aiming to do all the right things for your wife in this shitty period - it won't be easy but you do get thru it, easier if you do it together as you are. You will need support along the way tho so feel free to use this forum - you've already seen I think what kind of people we are, all united in one cause - to beat this thing, if not for us then for the people who come later.
My motto, given to me by someone on Cycle 5 of FECT when I was starting out was 'plan nothing, expect anything' which was about right - good luck!!
Thanks to you all.
I have made good notes, but obviously we will wait to see which pointers work for us and which don't. You have all been through the mill and I take your positive outlook and help as a way of inspiration. You are all just superb. I have been roped into a few races for breast cancer so you might see me in pink at somepoint in the future, the least I can do for the amazing support network and research into getting this peril firmly squared away!! 🙂
You have had a lot of good suggestions.
One of the main things that sticks out in my mind is the waiting about for the chemo whilst in the hospital. My husband used to bring the paper and we did the crosswords and wordplays etc., and he used to make me LAUGH and keep me upbeat, and funnily enough that is what i remember the most!
I think your wife is really lucky to have such a caring husband when so often we hear about men who have run a mile! I myself am single so can't give any advice from myself but chatting to a lady in hospital yesterday she said her husband got on her nerves asking if she was ok all the time! Just a warning! lol
I found really difficult to remember things during chemo. I normally keep myself, my husband and my daughter organised but suddenly seemed unable to remember appointments, birthdays, shopping lists or even why I'd walked upstairs. I'd start a sentence and forget what I wanted to say.
This was incredibly frustrating for me and it takes a lot of tact to take over some of these things without appearing patronising but you're already half way there by wanting to be supportive.
Wishing you and your wife all the best for the months ahead.
You've had some excellent tips on here so far. I've just had my last chemo.It's been a difficult time for myself and for my hubby having to watch me go through it, but he's been fantastic. Chemo effects everyone differently and even each dose was different in many ways. I kept a journal through it, which helped me keep note of side effects and open up about how I was feeling. If she's struggling with any side effect seek help from your BC nurse. There are meds to help with everything, so don't suffer in silence!
We set up a bed in the spare room again, which I slept in often during the first 10 days after each chemo. This was so we could both get the best rest possible and to reduce infection, as my immunity was so low.
He would cook dinner in the evening if I wasn't having a good day, which really helped. Arranged little outings on the weekend, lunch out, gentle walk etc. We arranged little breaks away to look forward to when it was over, which has kept us both going. Lots of family and friends phone and want to visit, which can be daunting at times and he took many of those. When family did come up we ate out.
Most of the housework i've managed to keep on track with most of the time and it's important to have ordinary things to do, so you feel like your achieving something normal, so don't go overboard on the offers of help!
Take care of yourself too, see your friends occasionally and keep things as normal as possible. It's hard but you'll both get through. Talk to each other and cuddle often!
Hope things go well for you both. x
Hi Rich what a lovely thoughtful Oh you are coming on here for a start for information and wanting to do all the right things ( which ofcoarse you wont even if you are ). I was very lucky and thankfully wasnt too bad throughout treatment ( infact we joke now that nobody noticed i was poorly ha ha ) because I still managed to potter on and do my normal things especially weeks 2 and 3 in between chemos . I was a bit achey and nauseous ( a bit like early pregnancy ) in 1st week . I think the best advice I can give was just to be there for support for appointments and treatment to listen when she wants to talk ( somtimes this being in the middle of the night) to rant at and not answer back when she has down days and do litle chores like the ironing , washing up shopping when shes not feeling 100 % without been asked and when she is feeling better in week 2 and 3 do special things together a nice day out in the country or a picnic and a little walk or a nice meal. Just still make her feel like you love her and think shes amazing even when you look at her with that bald head, extra weight with the fluid retention, and when shes having the menopausal hot flushes and tantrums ( its pmt with a vengence) but dont be OTT just treat her " Normally" Im sure you will do just fine and believe me the only way she'll change is it'll make you both stronger together and appreciate the simple things in life much more xxxx good luck with her treatment and message me anytime Julie
Ps we never ventured into the spare bed at all cos even with the hot flushes I still need a cuddle
I was very unlucky and had septicemia mid way thru my chemo and the combination floored me - my husband had to take me to the loo, plonk me on it, leave me alone(!) and then lift me off - and I ain't a little lady (tho I did lose 3 stone during this period!!). That's love!!
Good point Nottsgal and should have mentioned that in my earlier post. The SEs of chemo haven't been as bad as portrayed in the book for me also, and I haven't seen anyone mention someone taking them to the loo on this forum either!
Sorry that you and your wife are having to deal with this so early on in your marriage but I'm a strong believer in things happen for a reason, so your wife would have got BC anyway, the bit that happened for a reason was you meeting and marrying her so she has someone to help her get through it.
The one thing that has annoyed me at times during chemo is my husband going out a lot in the evenings (this is during good weeks, the bad few days after chemo, I'm often in bed by 8, so it doesn't matter where he is). I know he needs sometimes to take his mind off my BC and do something else instead and I know it's unreasonable to expect him to be here with me every evening. All I'd say is just be a bit aware of how often you're out in the evenings - when your wife has little energy during the day and therefore not done much all day, she'll be looking forward to you coming home from work.
If you catch a cold, then it would be wise to sleep in the spare room; otherwise, play it by ear - you don't want your wife to feel you've abandonned her.
If you do read the C Word, as Pinkrose suggested, don't be too scared. I was panicked as I read it before starting chemo and thought am I going to have to have someone help me get to the loo? but it's been no way as bad as that.
Very best wishes to both of you. It will go quicker than you think now.
I think Nicky you have nailed it on the head all your suggestions are brilliant. Love your idea of a chemo fund - how clever is that!
Part of my private health insurance is a £50 every time I go for chemo (this is the only perk I've had from the health insurance, but that's another long story), so we are off for a day trip to Paris.
Sounds like you have loads of tips now and hopefully can feel your way through.
I am on treatment seven of eight and cannot wait for chemo to be over, even though I think it has probably been quite kind to me compared to the experience of some.
The most helpful thing my husband does for me is to keep a well-stocked fridge! I find constant grazing for the first four or five days after each treatment keeps the nausea at bay and the fact that he never raises his eyebrows or passes comment at how much I can pack away makes me feel so much better!!
The one thing he does that causes upset is he wants to try and 'fix' everything, when this is one thing he cannot fix. Sometimes I would love him just to acknowledge that this is crap instead of trying to find solutions to everything.
However, he is absolutely fab, and although I am sometimes so crabby,even I don't want to be near me, I am so lucky to have his love and support. I am sure your wife will have moments of feeling the same.
Wishing you both lots of luck
I see you've had some good advice and been pointed in the direction of the helpful hints thread.
I had chemo 3 years ago and the things that my husband did - or was told by me to do were:
to move to the spare room for the 1st few days of chemo - I said it was for him but it was really for me!
to buy me flowers (if he wanted) when I was feeling good not when I was feeling bad - I didn't need the reminder 😉
for both of us to plan a treat for the weekends when I felt good and an extra treat for the weeks when chemo was delayed - however small, it was good to feel 'normal'
generally not ask 'how do you feel' until day 5 when I felt better - the answer would otherwise always have been 'crap'
help around the house with cleaning etc but generally I was OK to do most other things myself
The other thing I did was set up my own 'chemo fund' and I added into it the money for anything we had to stop doing or would have done during the chemo months. Eg haircuts, cancelled charity dinner tickets, hotel when visiting my brother, my gym membership - all the costs we didn't or couldn't make went into my fund and we then had a few extra special treats for when chemo was finished. Again something to look forward to.
Good Luck to both of you and, I found, I had more good days than bad during chemo so I hope the same happens to your wife.
I hope you don't neglect Scott, your tree!
About the hair thing, I got my long hair cut a couple of weeks ago as soon as I knew I'd be having chemo, to give myself the chance to get used to not having long hair before I have to get used to not having ANY hair at all. I think I mentioned Little Princess Trust on another thread, I found it helpful to get one little positive out of this for the benefit of others, so if your lady is cutting her hair see what she thinks about letting someone else have the use of it. It might help her feel a bit better about parting with her hair.
She's a very lucky lady, and I wish you both all the very best through the treatment.
Hi Rich, Sorry to see you here.
There are some good tips in there. Being prepared to turn people away is one of the big ones.
While wanting to be in and out for treatments is a nice target, be prepared to spend the day there, especially if you are seeing consultants on the same day. Take things to read, puzzles, whatever to keep yourselves occupied.
It can seem quite busy once it starts - a three week cycle means you always have something coming up.
Be prepared to cook, clean wash up, or whatever, but also don't treat her like an invalid.
Hi Rich, it sounds like you are already doing the most important thing - just being there and caring for your wife. You would be surprised how many men many walk out because they just can't cope.
I have only a couple of things to add to the above advice - first, there are lots types of anti-sick meds which work in different ways. If she is or even feels sick the first day, get onto the hospital straight away for a different prescription. I was never sick, but felt lousy for the first 36 hours, however then changed meds and was fine after that. Sometimes you have to push as the stronger ones can be much more expensive.
Second, don't assume life will change dramatically, for me it carried on pretty much as normal. Although I was never really 100%, I only had a couple of complete rest days each cycle. We still went out, saw friends, even went on holiday. The more I did normal things the less frightened I felt, as it kept me 'grounded'. My partner encouraged me to do stuff, and although initially I was reluctant (putting it mildly!) once I got going it took my mind off cancer. So be prepared to go with the flow!
best of luck
Hi Rich, as far as the snoring goes, what about having a spare bed ready and then see how you both get on? There are likely to be nights when your OH can't sleep and might prefer to switch to the spare bed so she can put on the light to read, watch telly, whatever, without disturbing you. Similarly, if a bit of comfort and cuddling is followed by snoring, then you can move. (My OH rarely wakes, even when elbowed rather vigorously, so I'm usually the one to move if I can't get him to roll over so he stops.)
Sometimes the brave, strong face that many men adopt even and especially when they don't feel brave or strong can seem like not caring or not appreciating how scary and difficult treatment can be, so occasionally acknowledging your fears and worries for her can be very loving.
You've already had some good practical suggestions. My OH has been wonderful about chauffering me to and from the many, many hospital appointments, doing the shopping including treats that I like and he doesn't, and so on. The other big thing is to be flexible, because life may be able to go on fairly normally at first, but the side effects tend to build up and can come on suddenly and unexpectedly.
A joint project could be very helpful, remembering to be flexible about her contribution or at least the timing of it.
Best wishes to you both,
If you and your wife can stand to read any books on BC I can recommend Lisa Lynch The C Word - it's funny, made my hubby and me cry and helped me explain to him how I was feeling and vis versa.
The hair thing is really difficult. I was hysterical over losing mine, but when it finally happenend I couldn't believe that I was actually relieved and that I could cross it off my list of things to get through. I didn't use the cold cap cos, like your wife, I can't stand the cold. My hubby is brilliant about it and says it really doesn't bother him at all, he encouraged me to get out of the house and see people, do things and go back to work which has helped my confidence of wig-wearing immensly.
Thank you to Nina for letting you hijack her profile for a bit. Sound advice that I'll take on board. My wife has decided against the cold cap as she doesn't do cold very well (funny for a Dundonian :-)and wants to be in/out of the hospital as quickly as possible during each session.
This wasn't how we were supposed to be beginning our lives together. Having only just moved to the same city as each other last year we were just getting used to finding our way round each others little habits. So getting shouted at is pretty much the norm round here:-)
All my mates that I can chat to are back down south and talking on the phone is quite hard, much rather do it over a pint! But I too need to develop a project that'll benefit the two of us after it is all finished. We are planning our honeymoon for this time next year (only 15 months late)so at least we can do something together at the moment to look forward to.
Hi - there are books around for blokes that are written in the best intentions, but nobody takes this poison the same so find your own way but use this channel for support. My wife kept a lot of her hair, thanks to the 'cold cap' treatment they offer at Aberdeen Royal Infirmary. It does not work for everyone and it is painful for the first few minutes, but it might be worth looking at if your hospital offers it?
She wil probably have a different view of life after this, and so will you, but she really won't change into a different person. Her attitudes to what is important in life undoubtedly will though.
The best advice I can give is spoil her at times when she is able to enjoy being spoiled, and give her the space she will need at other times to deal with it in her own way. Be ready to get shouted at, because you are the one person she knows she can shout at and who will not walk away because you love her whatever - but also make sure that you make time for the things you need and want to do for you. I was lucky - I had a 'project' to get my mind round in the shape of a race truck, converting it to carry two racing cars once Nina was fit to drive again, and it helped, if only to give me something else to think about. I also had a great male friend who I could go and see just to chat, and that helped a lot.
I hope this helps
Sounds like you have met my wife already 🙂 I figure that'll it will be a wait and see what transpires, but I am a planner by nature (although I do not impose this on the Mrs) but I prefer to have an arsenal of options and ideas, and if I don't use most of them it'll not be a drama, but best to be prepared than have nothing in the bank when duty calls 🙂
I am developing a skin like rhino hide at the moment (caused by three months into a marriage and 4 months into the 'journey'), but I also have my gooey soft centre that cares so much for my lady.
Cheers Mel, very good link, that's where my wife got her 'shopping list' from. I'll take time later this week to read the 33 pages.
Rich - you're a man - you breathe - you don't have a crystal ball - therefore you will do something wrong - guaranteed! Half the time the problem is (when having chemo and most of the time otherwise!) - you don't know what you want yourself and don't know what you don't want until someone does it / says it and then you erupt!
But 10/10 for you for trying to do the right thing!! I'll ask my OH if he's willing to hijack my id and post something! He's been thru it all and didn't do bad!
Good pointers as a starter for ten 🙂
It's also the things I never thought about before, like do I move into the spare room permanently so she can get as much rest a possible (snoretastic :-(, I know this is something that we need to talk about but, she is more the type that'll leave it to me to decide, where all I want to do is hold/cuddle her when she's feeling rubbish, which is something that is probably the last thing she'll actually want.
Is there anything that your OH did with honourable intentions that wound you up the wrong way, through an honest lack of understanding??
Hi Rich,If you click on the link below it will take you to a top tips thread on here.It will take you to the last page,if you go to page one there's lots of tips,hope it helps and hope your wife doesn't suffer too badly whit side effects
Best wishes Melxx
chemo is so different for everyone but one thing for sure it makes you feel pretty cr*p at times.
Hair for most doesn't start to fall out until about day 16, and looking back I wish i had just cut it shorter at the start and then been prepared to shave it when it actually happens. I know friends who held , hair shaving parties and other things like that, it depends on how you are feeling at the time. losing my hair was one of the hardest things.
Take advantage of the 'Look good feel good programme', which is run through most hospitals and cancer centres. I know lots of women get a real boost attending this. Also breast cancer care run workshops on losing hair.
I found the simple things a help, coming home to clean sheets on the bed. I prefered doing actual chemo on my own, but everyone is different. I used my laptop a lot in bed and having it set up so I didn't have to struggle with wires etc.
If you have problems with sickness etc ASK the chemo team. i stocked up on ginger but was really sick with my first chemo and couldn't face ginger again. I loved having fresh fruit chopped up when my mouth felt awful.
I didn;t want to see lots of visitors etc at times and its great to have someone who can say ' sorry not today'
I am sure you will have loads of responses. I will ask my other half if he has any tips.
take care rhi
After an eventful rollercoaster ride and all operations behind us (I pray and hope!!!) the long postponed chemo (due to fertility treatment and compliactions from surgery)will start a week on Wednesday. My wife has booked in for her hair appointment with a friend this Saturday, where she will shear off her amazing mane of long brown hair, in preparation for losing it all, something she is putting on a brave face about. She has stockpiled the items for oral care etc and lotions for the feet etc, and has purchased a few headovers etc. So we now wait .......
The prelude to the next 6 months is actually the bit that is,for me, quite hard. Up unitl now it has been fairly full on with relatively short times (seeming like years) between Ops and results etc. but this seems to be taking forever to start and I am very nervous. It's strange but I feel that I am saying goodbye to the wife I love and cherish, knowing that for the next few months she will not necessarily be the person I know and that coming out the other side she will have changed.
Has anyone got any tips for me as to what I can do to help her through the hard times ahead? Anything from how to deal with the issues in my own head, things I can do/buy to make it run more smoothly, things I can do to help ease the pain/sickness etc? Has anyone on my side of the fence worked out any tricks of the trade and has anyone on her side of the fence found particular things that their partner has done which they found great or just plain annoying?
Thank you for your help