Great scan results but losing husband.

Public Archive
1

Don’t really know where to start! I’ve just completed 9 weeks of 8 weekly taxol and 5 Avastin and largely been very positive throughout despite the devastating diagnosis of secondaries in my lungs and lymphatic system at the end of Feb which is my 3rd brush with breast cancer in 5 years.
I’ve tolerated the treatment well and kept my hair with the cold cap (though it’s rather thin and balding in the middle now).
My husband has found it very hard but has kept supporting me but when I got a chest infection after my 8th Taxol and had 2 worrying waits at hospitals within 2 days while my temp had gone high he just started to fall apart.We had a terribly emotional and stressful couple of days when he was really in bits and I got in a state too so deperate for things to be ok.
His mum came to stay to help out a week ago and after talking to a holisitic therapist he rallied round and seemed better and managed to drive me to London for my PET scan (after the 9 weeks of treatment)last Friday. He was up and down over the weekend but we were pulling together and trying hard.

I then got fantastic results with my scan. The 4 affected lymph nodes around my upper clavicle and another affected lymph node in my lung are all completely clear now with no sign of anything suspcious. The 2 tiny nodules in my lungs only measure 4mm and there’s no further deterioration so I hoped we could really be pleased but it all felt rather numb after the few days we had and it didn’t seem to really cheer up my husband although he was pleased.

Anyway the next day (Tuesday of this week) we headed off as planned to the French Riviera for a much needed holiday but it was a disaster as my husband just kept bursting into tears (completely unlike him)and just could barely function at all or enjoy anything. It was heartbreaking and we ended up coming home yesterday after just 2 nights there. He’s decided to go and saty at his mum’s for at least a month to try and get himself together but I’m very worried he may not come back. It’s devastating and I’m all over the place trying desperately to hold it all together and be strong and just hope we can work things out. Our relationship is great but he just can’t cope with the burden of the cancer anymore. He’s 34 and I’m 38 and he’s been fantastic over the past 5 years we’ve endured this disease and I don’t hate him or resent him as I can see he’s really in a bad place and it’s not the “real” him. He says he desperately wants to hang onto his job so that he can continue to have the BUPA through work which is enabling me to have Avastin and I can see he fears if he stays here as he is he will soon not be able to function at all.
I see the oncologist on Monday (at the moment alone although I’m hoping a friend may be able to come with me)to find out what happens next and I’m dreading him saying more chemo as I’m really not sure I could cope with that right now with all this hanging over me. I’m scared to tell friends and family even as I feel ashamed to admit I’m struggling and always try to keep positive but don’t feel I’ve got a lot to be positive about but I hate self-pity.

Sorry to rant but I needed to get it out!

Anne

2

Dear Anne

I’m sorry to read that you are having such a difficult time, if you need a ‘listening ear’ please call our helpline team which is staffed by breast care nurses and volunteers who have had an experience of breast cancer themselves. The number to call is 0808 800 6000 and it’s open Monday-Friday 9am-5pm and Sat 9am-2pm.

Kind regards
Lucy

3

Hi Anne - just logged on and wanted to send you my prayers for a successful reconciliation.

No matter what age you are when dx 5 yrs ago (I was 58 yrs, husband 75 yrs), and 30 yrs of marriage then (2nd time around for both of us), it can be extremely traumatic to have a dx of a life threatening disease. I was on a huge dose of steroids and got psychosis - I went completely mentally unbalanced, fled the apt at midnight after a ridiculous argument because I spent 2 hours on the phone on the night of dx counselling a friend whose husband was threatening suicide. My husband was incandescent at her insensitivity and the whole situation escalated out of all proportion, with me calling the police and spent the night in a neighbour’s apt. Police came after me to see I was okay. It was an appalling situation- on both our parts. Just a terrible situation to deal with, that neither of us were equipped for. Hubby told me to leave the next morning and go buy an apt in the nearby city, but I refused, and he wouldn’t go either. A dreadful stand-off week, but that was 5 yrs ago, and it is never mentioned these days. I am pleased to say our relationship is stronger than ever now, but it was such a traumatic time that I know we will never face again, having been there once. Life does at times through some unusual curves.

A life threatening illness can send some very grounded people into a tail-spin - often both of you cannot verbalise your emotions and fears, not wishing to hurt the other partner. An extraordinary situation that the majority of people don’t have to deal with.

Perhaps your husband is doing the right thing for him, and you…getting some space to think about the situation and in the meantime contine with his job and of course, your health insurance.
Give him the benefit of the doubt for the time being…he sounds as if he has been a supportive partner in the past and may continue to be so in the futute. You both sound fairly young, and he may feel quite impotent in that he is unable to help you. I do believe the fairer sex are much better emotionally equipped to deal with serious illnesses - my late twin brother only went to see my mother once after she went into a home for stroke, whereas my sister and I were left to sort matters out.

You sound as if you are coping very well with the bc treatment - don’t know where you live, but if I was near I would go and hold your hand at the Oncology consultation. I don’t think you have anything at all to be ashamed about in telling your friends and family - you have a life threatening disease, and you may find some of your family/friends really want to be supportive. I was incredibly surprised when a neighbour, whom I barely knew then, offered to drive me the 2 hours, by car and ferry, to hospital for my second surgery. It was winter, dark, and my husband was waiting for 2 cataract operations so could not drive me. I can’t say we are bosom friends, but have been able to help her out recently when she and her wheelchair bound husband got flu and had no food, Raided my freezer for 3 days worth of home made cooked food and frozen milk, hubby made bread for them, as we live miles from a shop. What goes around, seems to come around - and I am sure you would help out your friends if they were in the position you are.

I too am very independent, but there really are times when you need help…and for now, for you, think this seems to be the situation. Lean on your friends - if they are true ones, they will be pleased to help out wherever they can…even if it is only a glass of wine and a heartfelt chat. They are not mind readers, and can’t help if you don’t ask! It is not self-pity - it is self survival, mentally and physically.

So sorry to hear how unhappy you are…pm me if I can help further.
Take care,
Liz.

4

Hi Anne

One thing that is obvious to me is that he seems a very decent bloke who loves you - which is the most important thing.

Being a bloke he may have been trying to be too strong and not getting enough release and he’s just imploding. I would say that he needs professional help. Nothing wrong with that. At least he’s now showing that he needs it.

I know that my OH has been more affected by this than I have - and when I casually asked him if he thought I was going to die (he’d said something suspicious) he just burst into tears - and I nearly came close to dying as he was driving at the time!

I think you need to both go and see the doctor together for referral to some sort of help. He’s not the sort of chap who is going to leave you - but the is just trying sooo hard at the moment without enough release that he just can’t cope. The impact that any problem has on us depends on how we deal with it. He needs to relax more.

Hope it all goes well for you
Big hugs
Love FizBix xxxxxxxxxxx

5

Hi Ann
Firstly I would like to congratulate you on fantastic scan results and wish you good luck with your continuing treatment.
Secondly what a lovely caring and sensible post from Liz I think she is in Cornwall as I am and her posts over the past few months have really helped me. Plus Fizbix is coming from a different angle but just as supportive.

Thirdly I know how hard it is for our partners to cope with the reality of living with someone they love who is dealing with this horrid disease. My previous husband died of stomach cancer 22 yrs ago when I was 35 our daughter was only four it was a horrid time and my emotions were all over the place. I have seen it from the perspective of the carer and the cared-for.

I asked my husband Ian to read the postings and share his opinion because men are from Mars etc. His take on it is that the situation will sometime overwhelm the man and of course they never really verbalise their worries. The man will probably feel both that he has let his partner down when she is frustrated or angry at something and also he might feel it’s unfair. When in fact all they want to do is support their partner. Basically us men approach emotions very simply - if the woman is angry and we are in the same room we assume it is somethig we have done wrong but if we genuinely cannot think of anything we might have messed up on we feel it is really unfair when in fact maybe the woman is worried about something but will only show her distress in private to her partner.

That was husdands take on it. urm . Do you think we have issues that should be discussed!!!

Anyhow before a sign off and belt him because I obviously have anger issues that need to be dealt with…

Seriously it is so hard for us to deal with the day to day normal married life with hospital visits effects of chemo financial worries is it any wonder that we find ourselves needing time out. Ian is 46 and I am 57 we had our ups and downs before my cancer diagnose so we had pretty much decide to go with “The for better for worse richer poorer SICKNESS and in health” And boy is that being tested.

You are both so young and this is all so difficult to deal with. My advice would be please keep all lines of comunnication open and get help and advive from trusted friends.

Hope we have not waffled on and this post will help.

Love Debs and Ianxxx

6

Dear Anne,

I have read and re-read your post - trying to understand it from your husband’s point of view - and I have to admit my love, that I am struggling. You seem to have to carry the weight of the world on your shoulders at present - and that’s not right. This is not about him - it’s about you. I am so sad that you feel you need to support him through all of this??? He needs to relax more??? He needs to get a severe grip and grow up. Sorry Anne - this is probably not what you want to hear. I cannot believe this man! He’s decided to stay at his Mum’s for at least a month!!! I am speechless.

Anne, you are what matters- not his sensitivities. Don’t try and rationalise his behaviour - concentrate on you. He doesn’t need to relax more - he needs to sort himself out and GROW UP!

Love
JAneyb
x

7

Hi Anne

I am so sorry this is happening to you and your husband. I am usually very cynical when hearing about how husbands or partners arn’t coping with ‘our’ illness. I usually think tough, it’s us that have to go through it all, and us who ultimately may have a shortened life, and our lives that will never be the same again. But your thread really hit home with me, and I think in your case, your husband has reached a breaking point and is having his month away for self preservation, but you may also benefit from this. All marriages need breathing space with or without BC. Providing you continue to have close support from others, you can ride this hiccup and I am hopfull your OH will return, refreshed and more able to cope. I hope so.

My thoughts are with you. Take care.

Irene

8

Hi again Anne…
so glad you have had so much support from other forum users…I have taken it all on board, especially Debs remarks. (Debs - I live in South East Cornwall, near Kingsand - the Forgotten corner of Cornwall -if ever you get up here, come visit! we have an outdoor heated pool, tennis courts, and right on Plymouth Sound).

Anne, you are you…and nobody can really advise you how to deal with your current situation. I don’t believe for one second that your husband needs professional help, as my husband also didn’t - they both need/needed time to sort out a very difficult situation in their own way. As we did too…

You seem very well balanced…wish I had your take on life at your age…my best advice is to chill out, take time for things to get things into perspective, relish the caring and supportive husband he has always been… he will hopefully come back…perhaps you need to.give him the chance.

My friends call me the “white witch”… I always seem to know who is ringing before I answer the phone - 99% right… and I get the vibes that you will be okay.

Sleep well,
Love, Liz.

9

Hi AnneS, My wife has triple negative breast cancer. She had it originally 4 years ago, but it returned in April 2007. We were both devastated and could hardly put one foot in front of the other. After 2 days my wife wanted to go to a Spiritual Church, I was very dubious as I did not believe in any religion but I went along because I love her dearly and would do anything for her. When we arrived we found that rather it being a church service or meeting it was a healing evening. We both had healing and we could not believe what happened, it made us able to cope more easily with such an awful situation. We have had healing now for over one year and the effects are miraculous. We still have very down periods and many tears but it has certainly been of huge benefit.
The healers say they cannot promise a complete healing but it may be possible, but they know it will help us deal with the emotional side. The many different effects that I have received have forced me to reconsider my views on religion, I now believe in God and that we will continue to live in Spirit after death. This helps a little but does not allay the fear of losing my wife, as I mentioned earlier I love her so much and it hurts so much to see her endure this illness, I wish with all my heart that I could take it from her. I still get very low and have many tears and my wife is of great comfort to me. I then feel guilty because I should be stronger, as we all know dealing with cancer is such an emotional rollercoaster. We tend to be strong for each other when its most needed. With great love comes great pain and for those who are left behind the pain continues. Believing that we will eventually be together in spirit will not reduce the sense of loss or pain. I feel on many occasions that I should be stronger for my wife, I am usually quite a strong person yet the pain of this is too much to deal with. I hope your husband can find some strength he is not alone in having to face such an awful time. I hope he remembers that love is the most important thing in all our lives and that he needs to be with you and that crying and feeling scared etc. is all part of showing his love for you. Please try going to a Spiritual Church healing session it has helped us enormously, the healers will heal people from any religion they do not tell you anything about spiritulism unless you ask. All of the healers I have met are the most sincere and the nicest people I have ever met, they are very sensitive and loving people who enjoy having a joke with you. My wife and I have healing twice a week and it has made such a difference to our lives. One of the healers recently lent me a book which is written by a lady called Angie Buxton-King and tells the story of her ten year old son who died of leukemia after 3 years of treatment. Angie is a healer and gave healing to her son during those 3 years and the doctors and nurses were amazed by the effect it had on her son. After her son’s death University College Hospital London let her heal patients on a voluntary basis but due to the demand for her services she is now employed as the only Spiritual healer in the NHS. I am a Medical Engineer and I would never have believed in any of this if I had not wittnessed it. I would say to ant other cancer sufferer to give it a try I am certain that at the very least you will find some comfort. I wish you and every other person who has this illness and their partners etc. all the best Love LarryL.

10

If anyone wants to purchase the book it is called ‘The NHS Healer’ available from www.virgin.com/books price £9.99 failing that just go along to your spiritual church Love LarryL

11

Thankyou all so much for your very supportive and helpful comments. This really is a most amazing site and gives me such support and ability to share with others what is a very difficult journey.
It is very interesting to get people’s different thoughts and opinions and thankyou so much Debsin Cornwall for the insight from your you and your husband too. I am starting to reach out to friends and family now slowly as I find it hard to admit things are not perfect!
Thankyou lizziecee for your belief we’ll be ok. I’m going to just try taking each day slowly and keeping the hope that with this time and space my husband will be ok again and will be able to come back and I think that we probably do need this breathing space as it’s been a hell of a 3 months since I was diagnosed.
Thanks for you comments too janeyb. I have been feeling a bit like that underneath but on the holiday I realised how broken my husband has become by all the worry and fear. Although it’s me that has the illness and treatment it’s affecting his whole life too and I think he’s so worried about my premature death and feels at 34 he’s been cheated out of life and can’t contemplate starting again without me so I don’t feel bitter or resentful really just very sad but starting to be hopeful now that time,space and counselling from the holisitic therapist he gets on with so well will bring him back again as there’s no doubting our love for each other.

Thankyou all. It means such a lot. Take care all,
Love Anne

12

Dear Anne

First I am so glad that you results are much more positive. You are obviously fighting this bl… disease and winning!

I so feel for you at the moment and wish you every bit of love and luck for the future. Your husband is very young and I think when he has had some time to reflect he will have healed a lot and will be able to cope a lot better.

My poor husband lost his first wife to BC and two years into our relationship I developed it too. We have now been together for 4 years and are married and he is amazing.

love GraceT

13

Debs - really good to read your posting and the insight from Ian was really thought provoking

14

Hi Anne

I’m glad you’re starting to reach out to friends and family - doing that is not a sign of weakness but a sign of strength. You are strong, of that I have no doubt.

Your husband will be fine. We all deal with this horrible disease in our own way and this is the way he’s able to deal with it. Give him time, I feel he needs a ‘breather’ from the pressure of it all and to take stock. In the meantime lean on your friends and family, they’re just waiting to be asked . . . .

My husband lost his first wife to a brain haemhorrage 8 years ago when she was 45. I was dx with bc last month, I’m 46 - poor love, he went to pieces at the thought that he was going to lose another wife - it brought it all back for him so trying to be as strong as I can for him. I’ll be very suprised if he doesn’t break down completely at some point in this journey. I just think it’s very hard for partners.

Take care
Claire

15

Hi Anne and girls

Im gad things are getting better for you Anne, Cancer sucks doesnt it. Even though we celebrate every year that we didnt think we would have, It really is a L O N G (i hate to say it) JOURNEY, (got very tired of hearing the word when I was first dx 3 years ago, The only way I could cope with it when people would say it, trying to be nice and POSITIVE, was to call it a F###ing journey - all in my mind ofcourse!)

I often think it must be so much harder looking on the outside not being able to do anything to help the love of your life, especially for men who have this "hunter gatherer, provider, hero, being in control, instinct thingy happening. I know what its like when one of my kids get sick and how frustrating that can be not being able to FIX it.

My darling husband turns into this Nazi control freak with every hospital visit I have (brain mets). Being in control of every thing, our business and 4 kids is his way of coping, I must admit, the kids have a “sigh of relief” look on their faces when I return. We all cope with things differently and at different times, I think your husband will be back much sooner than you think, notice how he didnt go “walk about” until you got the latest scans.

Anyway, you take care Anne, and may God bless you, (It really sucks that you are both so young!)

Love Suzy

16

Hi AnneS
When I read that your husband was falling apart and crying all the time my heart went out to you both. Your husband sounds, to me, as if he is suffering from depression and needs help from a sympathetic GP. The ‘crying all the time, and it isn’t like him’ is the classic symptom of depression and he could do with some counselling and probably a short course of sedatives. For him to being going through a crisis is hardly surprising and there is no shame in that.

You both should be being supported through this and I am very sorry that the ‘system’ is letting you down. You should be able to access help via your Macmillan nurse, local Hospice (you don’t have to be nearly ready for your ‘box’ to access them - ours are brilliant and help the whole family, not just the patient) and/or your GP. I am sure his mum is great but he needs more than that.

Promise me you will get on the phone and get moving on that support; the pair of you are entitled to that support (he has BUPA for him too remember) and you cannot do this on your own and you don’t have to.

Blondie

17

Hi Anne - Hope the weekend was bearable and good luck today when you go back to the specialist - I hope you managed to take a friend with you. There are some great posts here - it would be good to share them with your husband if you get the right opportunity.

Geraldine

18

Hi Anne-You have been through so much. I wish I could just fix it for you. I am a guy and that is what is guys want to do, just fix things. I know I should just feel your pain but you have had enough of that. These posts are very supportave but it can be days btwn them. It looks like my wife may have secondary Breast Cancer and I, like your husband years ago, support her 100%. Like you, I am the support system and really can’t, or more to the point, don’t want to go to family. Anyways, I am here for you if you need to talk, email, anytime.

Mike

19

Hi Anne

I agree with Blondie that your husband sounds as though he is suffering from depression. Although very frightening it is highly treatable. Maybe he needs to see his doctor who can sign him off from work for some rest and treatment.

Cathy
x

20

Thanks for all the support and advice.
Am struggling through with this and it’s been a very difficult week and a half since my husband picked up his things to go and stay with his mother. I was keeping positive after the initial shock as I was keeping the hope and belief that with the right counselling, help, maybe drugs and support and space away from our situation that my husband would return and be able to cope again with our uncertain situation.
His mother,who has been extremely supportive throughout and had been coming to help us every week at home on chemo days, has not been in touch with me at all and contact with my husband had been limited to infrequent emails and mostly about banking matters. I then saw my husband at the gym on Sunday and then he came to the house to pick up golf clubs on Monday night. It was awkward but ok on Sunday but afterwards I was in bits and then on Monday I was determined to keep it friendly and relaxed and try so hard not to put any emotional pressure on him which is so hard as I feel torn apart that I can’t help him as he feels with me regarding the cancer. We actually got on really well and he was very loving but I think that probably really confused both of us and although he’s clearly still very broken and not yet back at work he was hinting as if he’d left for good although admitted he couldn’t possibly know that yet. He says his holistic counsellor whom he likes very much is telling him he must now think about what he wants in life after years of giving to me and to think what shape he wants his future to take. This really upset me as I just think he’s not likely to say “I want a future with a wife who may well die in a few years time” and I wish I could decide what shape my future will take as it just looks extremely bleak and just unimaginable at the moment. I feel apart after that meeting and had a terrible night and was extremely low and worried for my sanity. I have some wonderful friends and my sister who have been wonderfully supportive but I find it hard to talk about without getting very upset at the moment and find it easier when I’m distracted.

Following my excellent scan results my oncologist is putting me on 7 more weeks of the weekly taxol, fortnightly Avastin combo with 3 weeks on 1 week off starting today. I was supposed to have it this morning but a delay in pharmacy has meant it will be this afternoon.
Yesterday I just didn’t know how I was going to let them give me any chemo at all or cope with the cold caps but somehow I managed to sleep well last night for the first time in ages and feel calmer today.
I sent my husband an email about how I was feeling as I’ve kept it all in and I think he got the impression because I looked well and seemed strong that I’m coping fine but I just can’t cope with the thought he may no come back at the moment as I need all my strength to get me through the chemo or I’ll just end up refusing it which is not helpful for anyone.
He then replied saying he’d totally crashed since our meeting too and regretted coming which was a shame as there’s clearly so much love between us but just too much confusion and inability to cope at the moment.
He says he wants just minimum contact while he gets himself back to work and I get on with treatment and feels he hasn’t had much space over the last 2 weeks. He’s proably right and I certainly can’t cope with any more upset than I’ve got already and just have to accept he’s not going to be supporting me emotionally certainly at the moment and I just need to get on with that and not think too far ahead as it just all is too much to think about.

He went to the GP finally yesterday to get a sick note for work but said the GP was useless with the offer of counselling but not for weeks and the only other option antidepressants which route he’s adamant he’s not going down at the moment. He’s trying to get back to work for next Monday.

I just have to accept he’s not in the right frame of mind to see how hard it is for me especially with no family close by and I can’t help feeling so guilty that I’ve contributed in him being in this terrible state.

The nurse has had me prescribed something strong similar to Valium to help me relax for the chemo today as I’m just dreading it. A neighbour is coming to help out which is good but I just hope I can stay tear-free and the time goes quickly!!

Sorry to waffle but thanks for listening!

Anne x