help

hi there
i,m struggling terribly to deal with my partners breast cancer. Earlier this year we got a lump checked out, which was just fatty tissue but they were concerned about calcium deposits in both breast. Anyway after the test which i,m sure your famiiar with the diagnois was DCIS and a double mastectomy was needed. This was a real shock but pre cancer sounded better to me than cancer? Poor Jill had the op and i was just a mess. Have to be strong i keep telling myself. Think possitive. Some times easier said than done. Jill is so strong and a real inspiration that makes me feel even more useless. After op jill very un-comfortable still after over 2 weeks. Can hardly move her arms, cant cuddle her and we are a very loving couple. I am careing for her the best i know but after todays results i am well i dont Know how to describe it. Results not what we wanted to hear. Histopathology reports are dificult to understand but invasive cancer, tumours and possitive lymph nodes(19 glands removed?) are some of the words mentioned. Now she looks like having cemo and/or radio. We,re only 40 and have a beautiful 3 year old son to gether as well as 4 older boys(12,12,15&17 years) i have so much living to do with jill but i am so low. Sorry this is not a cheerie letter but am hopping to help myself so i can help jill better.
Lee

Hi Lee and welcome to the forums,

I have put below the link to BCC’s publication ‘In it Together’ which is aimed at partners of those diagnosed with breast cancer. You can either download a copy or order a copy on line. Hope this helps:

breastcancercare.org.uk/content.php?page_id=3067

Best wishes
Lucy

Lee
I am sure you will do lots of living with Jill - the next few months may not be easy but life can be like that sometimes - whilst the results are not what you would have wanted there are treatments available to her so that is something really positive. Its difficult for partners - I know mine has been wonderful but many aren’t but the fact that you are asking for help means that you want to be which is wonderful. If cuddling is difficult have you tried a snuggle from behind - my partner often holds me either sitting or standing from behind (doesn’t crush the important areas that way) but you can still be close.
I hope all goes well - its a long journey but you will get through and you will both be stronger for it.

Take care
Helen

thank you helen.
kind and reassureing words. Can give her gentle cuddles but not big hugs. Time will hopefully heal.
Hope all going well with you. Suprising to read that many partners are not very supportive but i suppose many people handle things in there own way.
All the best
Lee

sounds as if you got a huge shock from pre cancer to double mastectomy and then invasive cancer in the space of a few weeks, when both of you feel healthy. It’s a nightmare and no wonder you feel you can’t cope. I’ve found support groups a help and reading about other people’s experiences.

Let us know how you get on,

Mole

Hello Lee, I am so sorry to hear about your recent experiences. As others have said, you are still in a state of shock, and that makes things seem unreal and makes it difficult to think straight. I am so glad that you have shown your support for Jill by coming on this site. What she needs more than anything is someone to travel with her on the journey ahead, and someone to be completely honest with. It sounds like you are the sort of person who can handle that.
You can help by listening to her, giving her (and you) treats (just a night in with a DVD and chocolate can work wonders), by doing practical daily stuff around the house, and spending time with/supporting your children, as she may feel guilty that she doesn’t have the emotional energy to be close to them at this time.
Everyone is different and thier relationships are different, but it seems to be generally thought that the more honest you can be with children, and allow them to ask any questions they like, the better.
Also, go to appointments with her and write things down! Take a list of questions and make sure they get asked, as it all goes in a blur often.
You can manage the treatment - you will get through it, and there are all sorts of sources of support and help.
Just keep on coming on here and ask anything you need to, and others will always help you out with info.
Would Jill like to come on and read some other people’s stories? It really helps to know you are not alone.
Wishing you both all the very best
Jacquie x

hello again
did write a letter last night or should i say in the early hours as i cant sleep again and oh these darn computers. I do often struggle with them.I dont know where it went.
I think again, i was just searching for some one to say, don,t worry, everything will be ok, but i know i am really finding it hard not to break down. My eyes seem constantly to well up the hole time. Mind is raceing,prob about all negative stuff. Heart beats fast and tummy churning all the time.
I will put it to Jill to see if she interested in chatting to you all, but must say i dont know if it will help her if she reads my letters.
Kept busy yesterday chasing boys and doing hosework. Then after jill had her sleep treated her…wait for it…to a trip in car, to the tip to get rid of our old washing machine that lays in garden. I know i can here you say"you know how to treat a lady ha ha". I will ad that we bought one of those bl***y take aways and sat in a beautiful park and ate which was nice.
Did get out earlier while jill slept and took youngest, Johnny to park with my other 13 yr old son, which was good therapy.
Oh well i suppose i better stop going on and get another load washing on. By way can anyone shed any light on why jill, still in big discomfort with both her arms. I am sure it is because lymph glands and so many have been removed but this is really slowing her down. You can not gently touch any where on her arms without her winsing in pain and it almost impossible for me to wash her arm pits so you i,m sure can appreciateit if not yet , will get her down. Love to you all. Thats all for know. Thank god i hear you say.
Lee

Hi Lee
I can’t talk from experience regarding the pain as ine was inperable - but i know from posts on here that many women have alot of difficultly with their arms after especially if alot of lymph nodes etc were removed. You may want to talk to your breast care nurse (BCN) or see a physio as I know its important and they are often given exercises to do post op etc. There are some leaflets etc on this site that may help.
Also if you want to be a help to Gill you have to look after YOU too so don’t try and be superman - if somethings don’t get done don’t worry.
I though the trip to the dump was lovely - my partner is into aircraft so when i was going through chemo he would often take me out to watch the planes and we would grab sarnies and coffee etc and make a picnic of it - its just special time together it doesn’t have to cost a fortune its the thought that counts!!!
Regards
Helen
PS post as often as you like that what people are here for

Hi Lee.

This is a really difficult bit of the whole process that I remember well, so does my OH (other half).

I had a bilateral mastectomy back in Feb and for a few weeks (around 3 or 4) I couldn’t bear the area being touched, it hurt for the first 2 weeks and then just felt too odd. Turns out it was the nerves joining back up that makes everything feel so strange. The exercises she’s been given really do help but they aren’t comfortable to do, they do pull on everything a little, if she does a little bit a couple of times a day she’ll get strength back faster. I know some ladies took pain killers before doing them (not me I’d rather the pain personally).

I know my mum and OH found it really hard not being able to hug me properly but within a month they could and it did feel good (although in all honest not too hard for a couple of months).

The shock for the first few months hit us really hard and we coped by drinking far too much red wine and watching movies late at night. We’ve backed off on the wine (but not the movies). Gettting out for fresh air and seeing nature doing its thing really helped me, just innocent little things like ducklings in the river cheered me up no end.

We’re still coming to terms with an uncertain future but we’re living it to the full and that’s all I think you can do really. It is getting easier with time.

I’ve just finished chemotherapy which wasn’t fun (understatement) but it wasn’t as bad as I thought and I now feel like I can start doing some really recovery and living now… in time she’ll get there, as will you.

Do talk to each other about stuff. To start with me and OH avoided certain things like what if I don’t make it but it turned out we were both thinking it and needed to talk about it then we could move on a bit, you may be different but just keep talking to each other.

And don’t forget that you’ll all be in shock and as such your own health and the kids will have taken a bit of a battering… poor Tommy’s exhausted after 8 months of treatment and I have to remind him that it’s OK for him to join me in a little heap on the sofa and to take his vitamin supplement too. It’s amazing how hard it hits you but a new kind of normality does come around… eventually.

Lots of love. and give her my love to as one bilateral mastectomy woman to another… it does get easier.

Angie

Bless you Angie
and morning girls and any other half’s if your out there
hows it all going?
I think i feel bit better today, if i can force myself to block things out. Have been getting bit more sleep but am up this morning soon after 5. Blo***y ironing last night and i,m still not too the bottom of basket. Its just about level with top know, and stop laughing. It really does make you appreciate how good a job you girls do and how in-efficient i am. Mind you i dont wont get to good at it for obvious reasons ha ha.
Whats with all this weather. Its been beautiful here. Real medicine. Not looking forward to dark,wet windy days but hayho, maybe stronger by then.
I can just hear the roads getting busier know. All those suckers going to work ha ha. No but seriously, work is another issue as money not going to last many weeks, maybe few months. Mixed feelings. I,d like to get back to work as it will divert my mind and relieve financial worries, but i would miss and worry about jill. Plus i know how my concentration was affected on getting jills diagnoses. God we,ve still got go through more test and dreaded blo**y results and we have no good news yet. Tummy doing yet another summersault just thinking about it.
Any way this wont do. Sun coming up so must get the wash out on line and see if i can break the back of that bloomin ironing. Talk to you later
Lee

Morning Lee.

You’re not sleeping properly are you hun. God those first few weeks are really hard… don’t think about stuff like money right now, you’re still waiting for results and to be honest you’ll still both be in shock. It only really sunk in for Me and Tommy after a few months and we’re both self employed and were worried about money etc but you do manage somehow and you’ll be able to concentrate better in time. the hardest part is not knowing what’s coming I think and yet whatever treatment you have to do you do manage but trying to imagine the whole lot up front is enough to wind you.

We have a border collie that Tommy walks every day and after my diagnosis I joined them, every day since Feb apart from 2 days when I just needed to sleep but it’s our escape time when we get to see nature doing it’s thing and getting some fresh air. I don’t know how we make the time but we do and it really helps you sleep at night if you’ve been blasted with a good dose of fresh air… You should both take a drive to the sea or something, fill your lungs with good salty fresh air and sleep better.

Make the most of this time, I’m glad we did rather than just the interminable waiting for bl**dy results, we all here know what it’s like and it’s hell but you will move on… eventually.

Ironing… what’s that, we apparently have one somewhere. One of the benefits of working from home and only wearing clothes with at least 10% lycra :wink:

Oh yeah the Haven DVD… I’ll send you a link in a sec.

Thanks Angie for link you clever girl.
Had look but i dont know if it for us. Maybe later.
What was i saying about feeling better. Should kept my bl**dy mouth shut. Jill in bed sleeping and i,ve just had to take a call from hospital.They want scan her liver on sat. Oh hear we go again. Feel like my guts twisted up, down and tearful
Lee

Don’t read too much into the scan Lee.

Almost all chemo is hard on the liver so they might just want to 100% sure that there’s nothing there seeing as some nodes were involved. I’m sure it feel like it’s all piling on top of you right now but it’s good they’re being so thorough.

My hospital doesn’t do scans as routine and it upsets a lot of people (and I’ve questioned it myself) but quite a few hospitals have a policy of doing scans if there’s any lymph involvement at all so really don’t panic just yet. Sometimes a patient is diagnosed with secondaries at the same time as the primary cancer, ie they’ve got symptoms of spread right from the start and I’ve read that in these cases they don’t tend to do surgery so I don’t think it necessarily means what you fear it does.

You could call the helpline on this site, it’s manned by people who’ve had BC and know the answers to an awful lot of questions.

Hugs

Angie

Hi Lee

Jill is fortunate indeed to have such support from you. She will need you to keep on doing the household stuff which I’m sure you will. Some OH’s (mine included) think if they do it once that is enough!

We have found the book ‘Mummy’s Lump’ published by this website absolutely fabulous when explaining things to our children aged 4 and 2, so it might be worth getting a copy - it’s free - for your 3 year old. It is written for toddlers. The older boys might use a website for children of people with cancer, it’s aimed at teenagers.

For you, there is partner support available from breast cancer care, and do accept all offers of help cos if you keep saying no people stop offering, and it does make people feel better if they are allowed to help.

Good on you for coming on here and good luck.

Kinden
x

Hi Lee

I was also called in for a liver scan just three weeks after my mx in Aug. I had had blood tests to see if all was well for me to start chemo and my liver function tests were not good enough. I had the scan and all was fine. My OH and I went away for a week to Cromer, did lots of walking and breathing in the fresh sea air and when I went for my next bloods all had righted itself. They thought that it could have been due to leftover anaesthetic from the op. I am now 8 days after my first chemo and so far so good.

I know it’s difficult not to worry but keep your chin up. I’ll be thinking of you both.

Jackie

Hi Lee,
Just wanted to pop back in and say I’m still thinking of you both and sending cybersupportive vibes.
The trip to the dump made me laugh…! But as someone else said, it’s the small things, and just getting out of the house and being together. We have even managed to make an outing of going to the hospital canteen for a hot chocolate!
I know what you mean about the tummy somersaults - a horrible dread feeling. I promise you it will start to feel better when the tests are over and you know exactly what you’re dealing with and what the plan of action is.However unpleasant the news, knowing what you are facing and having a team around you with a plan gives you a boost of strength.
love jacquie x

well girls
what can i say but thank you so very much for all your re assureing words and experiences. We all know what this cancer can sometimes be like, and of course i feel all you hear about is the horror stories.
I think im going to have to keep coming on here for a while as it feels like, this, and getting out,specialy with Jill, are my only things that help.
Well, another early rise 5am again. Fell asleep crying. Woke up crying. Cant just lay in that bed. Jill, some times, i think a bit better, but sort of made her do a few, and it was just a few, exercses last night and i dont think that was the right thing to do as arm was painful after. She wanted pillow support under them this morning too, so will have be careful.
I was unsure about talking to jilly last night about my concerns about scan but decided too. I am worried if i talk to her about certain things it will make her think, or set her mind reeling(like mine does). She says that she,s just going on the fact that its just in her armpit (lymph) and thats it. Typical jill, strong and possotive which makes me feel weak and of not much help to her. She tells me to talk,as i do her, so i did and i think she knows what i,m like anyway. How can we do this journey together if we hide things. Think i,ve just answered my uncertainties.
Took jill for a little plod around the houses last evening and she did say that felt better so thats a plus.
Today,well, what was i saying about weather. Dark and wet so thats prob it for sunshine. I was just gettin to like hanging out that washing. 3 loads yesterday, and 2 i got dry on the line. I know, carm down girls, i am good , aren,t i. Love it.
06.30 now so prob get the iron fired up. Hoping to drag jill to garden center today. We have a couple window boxes that i made couple years ago, that need filling, so prob get some hardy, pretty thingy,s to go in. Any green fingered experts out there with any ideas. Thanks again you girls for helping me. You’re the ones with all the sh*t and there you are helping me. You are true soldiers. Look for ward to talk later. Bye for now
Lee

Hi Lee
If the weather where you are is anything like it is in Surrey you probably haven’t got to the Garden Centre today - anyway a few suggestions Winter Pansies - available in a full range of really bright colours, also Primulas again good colour selection and if you want you can put some bulbs in to pop up in between in the spring. There are some lovely small daffs called tete a tete which work well in window boxes as do crocuses. I am sure you will find lots ot inspiration as you walk round.

hint with regard to the ironing - if you have to tumble dry due to the weather- if you hang it up straight away (tshirts, joggers jumpers sweatshirts etc not proper shirts and trousers) then you can normally get away with out having to iron them. During chemo we concentrated on the essential rather than the non essential. We applied this to the general housework too - we have caught up with ourselves a bit now but in the big scheme of things it was better to concentrate on the important stuff.

I think you will find and Jill too that you are now part of an exclusive club of strong people that are very good at being there for each other. As much as others often offer help its not the same if they haven’t been through it too. It may only be cybersupport but it can be invaluable.
Take care and hope the scans go well

Regards
Helen

thanks helen
invaluable is the word, certainly for me. Jill has a read forum sometimes and i talk about what ive written and what you,ve all said. This is helpful specialy when we laugh.
Sussex not to far from surrey so, no dont look like we,ll go garden centres today. Jill got up about 9 for her breakfast then went straight back bed. Real tired. Just got up about 1300 hrs. Prob wont go till friday now as have another hospital trip to the torture chamber but i think this just chat with chemical sam.
Have tried winter pansies before and they tend get a bit of a bashing as up on 1st floor. Bulbs good idea. Will put some in but want something thats nice now for instant effect and make jill feel bit brighter.
Got the one about dryer, nice one. Cheers me dear
Lee

heya lee.

may sound odd but have you thought about herbs, smell lovely, can cook with them and rosemary has the prettiest little blue flowers in early spring but stays green all year round. Maybe put a little rosemary bush in with the flowers for a little warming fragrance in the winter months. Not really a flowery person so not sure what to suggest there I’m afraid.

As for the excercises if she doesn’t do them often enough it will hurt more I’m afraid. The trick is just to stretch a little and when it starts to feel strained or hurt stop. just do a couple of each stretches and then stop and do that again later. Don’t do loads at once and don’t try and push it like you would say areobics, this isn’t about getting fit it’s about stopping things seizing up. She could go and see her breast care nurse and get her to show her how to do them and where to stop so that she doesn’t end up in lots of pain but does find it gets easier.