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Trying to help my Wife - Should the children be told?

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Hopeful1
Trying to help my Wife - Should the children be told?

Hello

I find myself in a difficult position, so I thought it would be useful to get the views of people who have been in a similar situation myself and my Wife are currently facing.

 

In summary, my Wife was diagnosed with cervical cancer 12 years ago, she had a successful hysterectomy but the cancer returned about a year later. She had chemotherapy and radiotherapy and again it looked like it had been successful, but unfortunately it returned within 12 months and the only option was a pelvic exenteration, and she had a urostomy and a colostomy. Since she had this done about 10 years ago she has been cancer free and she is classed as “cured” despite a number of scares along the way. I’m a very lucky man to still have my wife, as the consultant told me she had a 20% chance of surviving for 5 years. Some would say she is one of the lucky ones when you see the tragic events where people don’t live to see their children grow up. This is where the problem arises and I would love to hear the views of others to help me deal with things.

 

My Wife doesn’t see herself as lucky, she sees herself as the unlucky one, yes she’s alive but because of the exenteration operation she thinks her life is finished. She worries constantly about her bags, but in 10 years she has had few major problems, but due to this worrying, she won’t do many day to day things and she finds being in public places and on public transport very stressful. She has gradually got more and more depressed and despite being prescribed medication and counselling suggested she hasn’t done anything. I feel guilty in saying that the last 10 years have been so very difficult for me in dealing with all this. When she was diagnosed and had the subsequent treatments she didn’t want anyone to know apart from her family, I was not allowed to discuss her condition with anyone so had to deal with things myself. We have 2 children who were only young at the time of the diagnosis, they are now adults but have no idea what their Mother has been through.

 

On a personal level, I feel that I am totally worn out and can’t take much more, I’ve had to cope alone with her condition, I thought I would probably be a single Father in the early days, I just want her to be able to enjoy life, but I can’t see how I am going to change things. She sees herself as a victim and tells me how lucky I am, she says she wouldn’t be here if it wasn’t for the children, not directly threatening to kill herself but indicating it. Anything I do or say is always wrong. She refuses to have anything to do with me physically and tells me to go and find someone else, I feel totally rejected after trying to do my best for her.

 

I know the current situation can’t go on, whilst feeling that I am at breaking point, I want to try and do something to help my Wife as she is becoming more and more reclusive. She always said she would tell the children about things when they were adults, but time has passed and nothing has happened despite me broaching the subject. I feel that telling the children would be beneficial to her, perhaps release some of her anger and not have to worry about things all the time in case they find out. I believe they would view her differently and want to support her, surely she would be in a better position with full family support. I want them to know what she went through and how they should be so proud of her. I need to get my Wife some counselling, but persuading her to do this is not going to be easy, I feel that if the children are behind her as well, there is a better chance that she can deal with things.

 

I am sure that even after so many years and knowing what their Mother has been through, they will have many questions. The point I would welcome your views on, is if my Wife refuses to tell the children, should I tell them so we can support her as a family, it would be a great help to me to be able to share the burden that I have carried for a long time and I’m sure it would ultimately help my Wife.

 

Any comments or guidance would be gratefully received to help us move forwards.

 

Thank you in advance.

nm_353
nm_353's picture

I can’t answer that question for you. I was honest with my children. But they were 8 and 11, old enough to understand when I was doing treatments. That said, PTSD after cancer diagnosis and treatment is a real thing. I was diagnosed with it too. I even avoided this website for  nearly a year because it was triggering for me. The emotional turmoil it causes can be a lot of damage. I think it’s up to each individual on how they deal. I really hope she can one day view herself as a survivor. I can’t wait until I can say 10 years ago.  She did it! The issue is, in our brains we are just waiting for it to come back. She’s frozen and unable to move on from that. It’s very challenging!

June 2016- pap, not up to date, results abnormal

Julyy 5th-  After followups diagnosed with Adenocarcinoma

July 12th 2016- Met with oncologist, clinically staged at 1b2, staging confirmed with MRI and PET. Tumor is endocervical and approx 7 cm.

August 2016- Started chemorads. Post followup after treatment, NED

Sept 2018- Still NED

55

Hello

If you look at my history you will see that I have been identified as at high risk of cc because of testing positive for HPV & cell changes & that I am still being monitored because of a discrepancy in results. I have told a few close friends & family about my treatment for cell changes but have not yet explained to them that HPV means that my risk of cc is higher. Should I tell them or should I leave them in blissful ignorance? 

 

1st ever abnormal smear hpv & severe high grade dyskaryosis August 2019 lletz September 2019 polyp & nabothian cyst found Results hpv & mild cell changes polyp innocent Repeat colposcopy Dec 2019 test of cure January 2020 results of test of cure; no high risk HPV present , check up colposcopy appointment in June because of the discrepancy between initial smear & lletz result
Jazza
Jazza's picture

Hi 55

How much any individual tells their family and friends about their health issues is a very personal thing and depends on a range of factors.   In my own case I haven't wanted my family/friends to worry about me partly because I don't want them keep asking me questions about how my follow up checks are going etc;  I want to have control over my situation otherwise I get a bit stressed about it.  The thing that is most obvious about me is I can't do many of the things I used to because of the side effects of my treatment e.g. I needed to explain why my lymphoedema and bladder problems make it difficult for me to go on long walks to one of my relations.   In fact my side effects have had such an impact they concern me more than my risk for reoccurence of cancer and I don't see much point talking about the latter - I prefer to talk about what is real and happening and not what could happen.  Sometimes if I feel people are probing about the cancer thing I tend to say no one knows and that I am taking a philosophical approach about it.  When I tell people about my diagnosis  and treatment I am mainly focussed on how to put it across in such a way that they understand how important it is to keep up to date with cervical screening.

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: post menopausal vaginal bleed
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1  squamous  cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
55

Hi Jazza thank you for your reply. I understand what you mean about wanting to be in control of your situation and also your privacy. When I had to have my lletz treatment I only told a few trusted people, partly because I needed to ask for practical help with a lift home and also to make my line manager at work aware of the advice not to do any heavy lifting. I also let some family members know that I needed time to recover as there was quite a lot of pressure on me (before lockdown) to visit elderly relatives who live 40 miles away. I told my 28 year old daughter and discovered that 2 of her friends had had the same treatment but also that she herself had never had a smear through anxiety about the procedure but thankfully has now had her first one which came back clear. So some good has come of it. She also had the hpv jab when she was younger and so is presumably less at risk than my generation. My main worry is whether I should explain in more depth the links between hpv and cancer as I realised how little I knew until I myself received my test results and subsequently had a crash course in it all. Since writing this post I have ordered some information leaflets about hpv from Jo's so that if ever I feel the need to explain  I have information at my fingertips. I don't want to scare my daughter but nor do I wish to be dishonest. She lives quite far away from me at the moment and I feel this is a conversation which is better to have face to face. I have decided to cross that bridge if I come to it at the moment especially with all the anxiety everyone is feeling about Covid. At the moment until after my check up in June I still don't know exactly what is going on with my health so I am trying not to worry about it until then.

It sounds as though you have been through such a lot Jazza and yet you never seem to complain and you offer so much support to others. Thank you again for your support.

A

1st ever abnormal smear hpv & severe high grade dyskaryosis August 2019 lletz September 2019 polyp & nabothian cyst found Results hpv & mild cell changes polyp innocent Repeat colposcopy Dec 2019 test of cure January 2020 results of test of cure; no high risk HPV present , check up colposcopy appointment in June because of the discrepancy between initial smear & lletz result
Jazza
Jazza's picture

Hi 55

So one of your main concerns is to ensure that your daughter (and maybe your friends and others in your family) understands enough to be motivated to always keep up to date with cervical screening.  It's good that you have acquired some Jo's leaflets as they really help to back up what you say to people.  In terms of trying to get your daughter to stay on board with cervical screening maybe just say how it is - how your experience has made you realise how little you knew and that cervical cancer can potentially happen to anyone, how alarming it is to think what might have happened if you hadn't had a smear test.  Maybe drop in a simple and memorable message and ask her to promise you that she will never stop attending for smear tests.  It's also important that the younger generation understand that HPV vaccination is not a reason to be complacent about smear tests.  It's good that you've already got the ball rolling and she has had a smear now.

It might help to reinforce your message in your daughter's mind if you feel you can suggest that she distributes some Jo's leaflets (on behalf of her Mum's scarey experience) maybe even if it's just to pin one or two up in the wash room or tea room where she works and/or studies.  I find quite a lot of people are happy, even keen, to do this simple thing and it's a nice thought that someone might be spared cervical cancer in this way.

x

P.S.  I do complain as my husband is only too aware.

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: post menopausal vaginal bleed
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1  squamous  cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot
55

Hi Jazza thank you again for replying. You are correct when you say that one of my main concerns is spreading the word and I feel that my daughter has grasped the importance of screening and has acted on this. She is already quite forthright when she feels strongly about issues and I am sure that she will encourage her friends to attend screening. We have a close relationship and I feel that her generation are better at talking about health matters openly than my own generation. She would probably feel willing to distribute leaflets too. I think what I am struggling with more is the fact that I initially found this whole experience quite terrifying and I don't see myself as someone who scares easily. I have now calmed down quite a lot but the awareness of my being at risk is in the back of my mind; it's just that I've learned to live with it. In fact it has changed my world view quite a lot and made me question my lifestyle in the sense that I feel this has possibly been brought on by extremely high stress levels last year due to my mother passing away and working long hours in a stressful job. This must have lain dormant for decades as I have not had a partner since I split up with my daughter's father when she was small. I never saw myself as at high risk and very nearly didn't attend the screening appointment. I have played down the cancer risk to some of the people I have had to tell but this has shaken me up emotionally and as a friend of mine once said I feel like I have narrowly missed being hit by a bus. I don't want to burden my daughter with how terrified I felt but with the exception of one friend I have found some people quite dismissive and so I think what I'm saying is that I am in need of a bit more moral support and understanding from some people and I don't feel it is fair to burden my daughter with this . Hence my continued presence on this site. I know that I am fortunate to have caught these cell changes in time but I feel like this has given me a massive wake up call. So many people on here have been through so much worse, yourself included. I think a lot of people don't understand or want to understand things outside their own experience. I also fear the judgement and the stigma because of misunderstandings about hpv; this is the main reason why I haven't shared the information with my parents' generation.  However the pressure my family put on me to play the role of carer adds to the stress I am under and the smoking habit of one of them increases my risk.  I think now I am just having a rant! 

A

1st ever abnormal smear hpv & severe high grade dyskaryosis August 2019 lletz September 2019 polyp & nabothian cyst found Results hpv & mild cell changes polyp innocent Repeat colposcopy Dec 2019 test of cure January 2020 results of test of cure; no high risk HPV present , check up colposcopy appointment in June because of the discrepancy between initial smear & lletz result
55

Hello Hopeful1

MacMillan offer support to families and so it would be worthwhile to go on their website to find out about the support they offer.

I know you posted some time ago & don't know if you will get this message 

1st ever abnormal smear hpv & severe high grade dyskaryosis August 2019 lletz September 2019 polyp & nabothian cyst found Results hpv & mild cell changes polyp innocent Repeat colposcopy Dec 2019 test of cure January 2020 results of test of cure; no high risk HPV present , check up colposcopy appointment in June because of the discrepancy between initial smear & lletz result
55

Hello Hopeful1

MacMillan offer support to families and so it would be worthwhile to go on their website to find out about the support they offer.

I know you posted some time ago & don't know if you will get this message 

1st ever abnormal smear hpv & severe high grade dyskaryosis August 2019 lletz September 2019 polyp & nabothian cyst found Results hpv & mild cell changes polyp innocent Repeat colposcopy Dec 2019 test of cure January 2020 results of test of cure; no high risk HPV present , check up colposcopy appointment in June because of the discrepancy between initial smear & lletz result
Cecylia

What?! Im scared now. I thought after you had a hysterectomy that was the end of having cervical cancer. 

 

How is cancer able to strike if you remove the cervix and uterus?

Jazza
Jazza's picture

Hi Cecylia

A diagnosis of cervical cancer means the cancer started in the cervix.  However, over time the cancer can grow beyond the cervix to whatever is near the cervix or maybe to other parts of the body via the lymphatic system.  A hysterectomy is often a successful cure for cervical cancer if the cancer is confined to the cervix and possibly the top of the vagina; a radical hysterectomy involves removing the top part of the vagina.  In my case, it was initially thought my cancer was only in the cervix but tests after the hysterectomy showed I had perineural invasion (PNI) and lymphovascular space invasion (LVSI) and also the tissue removed had cancer cells very close to the margin; hence I was advised to have chemo-radio as well.  Sometimes, these treatments don't entirely deal with the cancer at which point the next curative option is pelvic exenteration.

I hope this doesn't scare you any more than you are but I think it's as well to know because I think it helps people to realise how important it is to keep up with screening and to get appropriate and timely treatment when required.  Screening and treatments do not guarantee prevention or easy cure of cervical cancer but, statiscally, women who do not follow the medical advice are much more likely to get advanced cervical cancers which can be very difficult to cure if at all.

x

  • Feb 04:  (age 47y) Smear test normal
  • Stopped going for smears!
  • Summer 16: persistent watery yellow vaginal discharge
  • Dec 16: post menopausal vaginal bleed
  • Jan 17: Hysteroscopy under GA for ?fibroids - abnormal cervix observed -multiple biopsies taken, 1B1  squamous  cell cc diagnosed - confirmed by MRI/PET scans
  • Feb 17: pelvic lymphadenectomy - nodes negative, Da Vinci radical hysterectomy- close anterior margin/LVSI/PNI, restaged to 2A
  • Apr/May 17: 6x chemo, 25x external radio, 2x brachy
  • May 20:  NED.  Various side effects notably hypotonic bladder since hysterectomy - ongoing ISC, unilateral lymphoedema lower abdo/groin/leg/ankle/foot

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