Struggling

Hi Everyone.

I didn't think I'd write so soon, but I'm really struggling with the news we got on friday. I don't even think it's the cancer diagnosis itself, deep down i think we both knew it was coming.

Its the waiting, the what if's.

Its all going round and round and round in my head. I'm looking at websites for survival rates, chemo/operations what to expect? Can we keep our pets? Will I have to go sleep in the spare room? What will happen to the the kids? Will they still visit me (I'm stepmum) what about work, house, cars?. It's just an endless cycle of questions and scenarios in my head and most of it is absolutely nonsense.

It's the feeling of waiting and wanting to move on and can't as we are at the mercy of others at the moment. I know once we have a treatment plan and get into the medical part I'll be 100% fine. I'm a pharmacy technician so I have an understanding of drugs, side effects, why they'd give one over the other and I also understand the medical terminology which I think will help immensely. But maybe that's whats wrong. The little knowledge I do have is perhaps too much. I know where to find the nitty gritty data, I have access to professional NHS employee information etc. I know I need to stop looking, but I can't help it just now.

How do you guys deal with this part though? The waiting? I'm normally the sensible, logical person. But I just feel absolutely useless. Husband is having to comfort me!!!! And thats just not right. I know I can be strong for him and I WILL be strong for him and I'll do whatever it takes to get him and us and our family through it, but what do I do in the meantime?

I actually wish it was me who had it. I know that sounds mad, but I'd be able to get a plan in my head sorted.

I'm sorry for going on and if this isn't the place for me to post, then feel free to delete. I know so many of you are on your own journey without me prattling on as an onlooker. I'm not what I would describe as a "woe is me person" far from it, but I am struggling with the waiting and just need a plan put in place.

Thank you.

11 Replies

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  • Lucy so many people feel sorry for those of us that have or had this illness but the ones that suffer most are our loved ones and I really feel for you. When I was diagnosed back in 2009 I didn't even tell my wife until after I had all of the tests scans diagnosis and treatment plan, indeed it was only when I went to meet the consultant to discuss the operation date after deciding on the operation that I took her with me. In retrospect it was the wrong thing to do but I wanted to try to avoid the uncertainties in her mind. Statistics can be made to verify or confirm anything so my advice for what it's worth is try to see the positives in everything. I can't say don't look at I even watched the operation on line so I knew what was coming but of course things had moved on from the one I watched and my experience was much easier due to the progress of the surgeons skills etc. Life is full of uncertainties but rest assured your family will pull together to get through this and will be stronger regardless of what the final outcome may be. I wish I could wave a wand but I can't so all I will do is send my best wishes and hope that all goes well. I am now closing in on 8 years post op and life is good, my family are closer than ever and we are thankful that I had this illness to bring us closer together now I never thought I'd say that when I was diagnosed! Good luck to you all on your journey and don't hesitate to post on here I wish I had found this site earlier :). All the best. Ray

  • Hi Lucy, I don't know if it will be any consolation I am a survivor of OC twice, the first time was 24 years ago, the second 5years it was a very hard journey both times, but the main thing I'm still here.

  • morning lucy ,

    saying im on this and strong and coping are one thing and doing it another . you are in my opinion , still in shock from your husbands diagnosis . i have been there so many times with my husband and parents ,as one of my replys said . it does go off this initial terror and is perfectly natural . try and accept the feelings and allow yourself to feel like you do . i know how you feel saying your worried about , pets and sleeping in spare beds . when my husbands accident happened his spine started to collaps and then his body immune system faught itself and he developed all sorts of ailments .had to have several big operations . we actually have an ajustable medical bed in the spare room ,i thought he would have to stay in there . he has used the bed once in the fifteen years ! a disc replacement in his neck where they went in from the front . i wont elaborate ! otherwise he has always prefered to be in our bed . i think its the normal people want after these traumas and being next to there partner . we have always had dogs and cats and our children were mixed ages when our life changed , they all adapt and cope in there own way . dogs had sometimes to not get there walk or shorter ones ,but i believe they know just like the rest of the family and adapt and accept and in the end its being with you they want .

    family and friends always want to help when these life changing events happen and often feel helpless perhaps helping with pets if you are busy caring for your husband or visiting could be a way they can feel usefull and alay some of your feelings of how you will cope .

    after mums cancer and dads and my husbands ops , it amazes me how quickly they recovered . the innitial post op was always hard to see but knowing they were in expert hands was comforting and let me be off duty for the times they were in hospital being looked after . like you i know just too much from past experience .i was a nurse and have seen both sides of illness and we cant help but search the web ,its just clicks that may answer our fears and questions , but can add so many other awfull ideas to run round our heads .the feeling you would rather have the illness yourself is i believe a natural one too when we really love someone , we would do anything to take there pain away . watching one of my daughters endure a four day labour was beyond stressfull and i would truly rather it was me going through it than her , but that is now part of her life journey and apart form our wonderfull little grandson , she has grown and learned from the experience .

    when i knew an op was looming i would occupy myself with making lists and doing things that i had mabey planned for later months incase your days become very busy or you just feel you dont want to leave your husband alone . my strong big husband needed a lot of company and reasurance over the years ,even if its buying yourself some autumn fashion now to look forward to wearing , its often the little things we dont do because the big picture is so overwhelming . when i started going through my own investigations this year i bought myself a little lola rose butterfly bracelett , a small thing but i put it on and said to myself i will be looking at this one day soon and all the scary tests will be over , i actually was allowed to keep it on during my scans as its not metal .. i am looking at it now and its all in the past , while what i have is not as seriouse as your husbands its another life changeing condition we will both have to cope with . but i know we will cope as you know you will , its just these hard frustrating waiting times . again believe me you will lean to wait , i am now also an expert in waiting !

    one other thought are mc millan there to help you now ,they must get so many partners feeling as you are now ?

    always happy to talk . feebs

  • People often say that this is the most difficult time. It is when you have the emotional and psychological aspects of the grief of losing your previous good health, but no clear understanding of what is likely to happen. It does take time for the various scans and other test results to be brought together, and, overall, the system is better nowadays than it was. The decisions of the Multi Disciplinary Team get things better for the patient, but it may take a couple of weeks.

    It will all depend on the TNM staging analysis. There is an explanation from Cancer Research UK here:

    cancerresearchuk.org/about-...

    The thing to hold on to is that at the very early stages of when cancer is detected the outcomes are very good. It does all depend on early diagnosis, and the general statistics get rounded up with the all-too-frequent occasions when there is no real curative treatment that is possible.

    You and your husband are in this together, and I think, for what it is worth, that you are doing OK because you are facing things together, regardless of how the emotions catch you at the time. There will be times ahead when each of you has to support the other; try not to shield each other from how you are feeling more than you have to.

    This period is one where you can start to gather your thoughts together about how you are going to face the future treatment process. It is also worth thinking about how many people you want to tell about your situation. People's reactions vary enormously, and some people will accidentally say the wrong thing. So to some extent you have to gather your own strength before giving out this news to others.

    But you will find extra strength from completely unexpected sources, and friends who surprisingly rise to the occasion.

  • Hello Lucy,

    This is a hard journey you are taking together. But - here are a couple of things that helped us 6 years ago.

    - Try to organise some FUN during the non-chemo weeks when he's feeling less horrible e.g. go to the cinema, see friends/family. Between the end of chemo (a long 3 months) and the op itself, we snatched a week away, which was a welcome change.

    - Plan AS MUCH HELP as you can for when he gets home after the op. He will be frightened. after all the care in hospital. And don't be afraid to call your local Macmillan nurses beforehand. My neighbour was wonderful and sat with him while I went out. YOU NEED OUT TOO.

    Finally, keep telling him how brave he's being and how proud you are of that.

    Good luck!

  • Oh..this is SUCH good advice. I think in particular the advice about help in home after the op is often overlooked. It's more of a shock to be released the better you have been cared for in hospital.

  • I just want to say a huge thanks you to each of you who has taken the time to reply. It means a lot and has helped greatly.

    We both ended up getting sent hone from work. Which was probably a good thing. We had a wee snooze this afternoon then had a good but difficult talk about the possible options that we could face. We are both definitely on the same page in terms of the future and what will happen if the news is really bad (and I mean really bad) after the PET scan.

    We had a wee holiday booked for next week and we weren't sure if we would go or not, but we've decided to go and if we have to come back to Edinburgh for appointments then we will. Think we need a change of scene and husband needs to recharge his batteries.

    Husband is still managing to get the calories in which again is really good. In fact he's just had a steamed syrup sponge with loads of custard.

    After our chat this afternoon we are both definitely in a much better place than what we were.

    Thanks to you all again. I really am ever so greatful 😀

  • Hi Lucy, Firstly I am so so sorry to learn of the diagnosis, a horrible time for you all.

    My husband and best friend, was diagnosed with stage 3 O/C last year, and we felt very much the same as you did. We had to wait almost 8 months for surgery due to internal bleeds and cysts on the liver which they thought may be secondaries.

    We also have dogs ( 2 and at the moment a foster girl!!) , I also work part time. We had nobody to help and didn't qualify for financial support. We have struggled BUT it can be done. One day at a time, which I know is much easier said than done. We can't change yesterday, tomorrow hasn't yet arrived, so today and only today is all you can focus on.

    This site is a friendly one and we will all do our best to help you through.

    Very much in our thopught,

    Lynn xxxx

  • Thank you so much Lynn.

    I think we'll be in a similar position except I work full time and we have 3 dogs and we too will have any financial support.

    Please, how is your husband doing? 8 months wait for an operation must've been torture for you guys. Did he have chemo during that period or was it simply just a case of waiting? Sorry for the questions, if you don't want to answer then don't worry.

    Than you for your kind words though. We're both feelI g a bit better today about things. Well, put it this way, We're both away to work, which is good.

    Thanks again

  • Work is good for both of you Lucy ~ some sort of distraction and almost normality!!!

    Dave did have chemo before the op, and was one of the lucky ones that despite having symptoms, was able to continue to work which lifted us both mentally. The wait was torture, but we got there!!! You will have positive and negative days, and I think that some of the emotions (at least for us) were/are tinged with a grief for the life you planned and have to a certain degree lost.

    Dave has had many complications and still does have, as he has very little motility and his stomach just doesn't empty much. Eating is a bigger struggle than we had hoped, and he has to go back every month for stretches (he's booked in for his 6th in 7 months!!) BUT I have him and we both try to remain up beat. I would rather have him like this than not at all.

    He has done amazingly well physically, and although still not quite as strong as he was, was back at work part time after 4 months and has been back full time since June!!

    You will find that the dogs will help, ours certainly did, as they need walking and cuddling, and brilliant medication!!

    Before Dave went in, I left some of my holiday for Dave's hospital stay so I could manage the dogs when he was in, and work let me take 1 week compassionate leave.

    Once he is home it will be possible for him to let the dogs in the garden if you are out ~ it's not easy, but is doable!!

    Good luck and do let us know how you both get on x

  • Try and find an OPA (Oesophageal Patients Association) group near where you live. My wife suffered like you when I got it and we went to a local meeting. It was the first time she broke down in tears, she was able to talk to other carers there and it really helped.

    The OPA site is:

    opa.org.uk

    and there is a section saying: 'support for you' and on there is an interactive map that should help you fine the nearest group.

    There is also a list on the site showing all the groups around the country with contact details.

    I can't recommend this strongly enough, there are people there who will support you and your husband through this journey, please contact the OPA, you can phone them if it's easier, they are there to help.

    The helpline is: Tel 0121 704 9860 and they are there from 9am to 3pm Monday to Friday.

    Good luck

    kind regards

    Bryan

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