Hi Rich,
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!
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.
Hi Rich
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
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!
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!!
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!!
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
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.
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.
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.
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.
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.
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.
Richard
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
Richard,
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
