Not sure how much longer I can bear this rollercoaster

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My husband was diagnosed with oesophageal cancer 4 weeks ago and I’m ashamed to say that I’m struggling to cope.  It’s our 44th wedding anniversary on Friday and I know I should be grateful for the long time we’ve had together and the fact we still love each other very much. However, I just can’t stay positive and have descended into feeling very sad and sorry for myself. For the last five years we’ve  been through an absolute rollercoaster of emotions, mainly caused by health issues plus a very stressful house move 3 months ago.  I really don’t know how much more I can take, especially as the lows seem to be getting lower and lower, while the highs are getting less and less frequent. 

In 2020, my husband was deemed to be ‘extremely vulnerable’ during the pandemic, due to taking medication that knocks out his immune system, to treat his psoriatic arthritis (which is an autoimmune disease). This forced us to isolate for more than 2 years and I lived in fear of losing him throughout that time. Since then, his pain has increased enormously but he’s always been so stoic and uncomplaining so we soldiered on together as best we could. We’d just got through the pandemic and hoped to start living life more fully, when I was diagnosed with pre-cancerous cell changes and had to have a hysterectomy. Shortly afterwards, in 2024, blood tests revealed I may have myeloma. Fortunately, further tests and scans diagnosed MGUS, which is not cancer but increases the risk of developing myeloma. Throughout this time, my husband was amazingly positive and supportive.

We’d just started to feel things were on the up when my husband started feeling increasingly unwell and losing weight for no apparent reason (4 stone in about 5 months).  He had a hoarse voice and persistent cough, plus severe acid reflux and permanent exhaustion.  Medics put his symptoms down to a combination of other conditions he’s had for over 12 years now, but I knew there was something else wrong.  The GP finally ordered a chest X-ray and we were told there was a mass on the right lung, and our GP told us to prepare for the worst! However, further tests and scans showed it was benign, with little explanation. Then, after more months of me fighting to get our GP to investigate further, as I was certain there was something seriously wrong, he was sent to see an ENT consultant who looked down his thorax and did a CT scan which they said showed no cancer but diagnosed a large gallstone.  

Five months later, when my husband finally got to see the surgeon about the gallstone, he was told his symptoms were unlikely to be caused by the gallstone at all! The surgeon arranged an endoscopy of the Oesophagus and biopsies revealed he has oesophageal cancer. When he finally got the diagnosis, it was almost a relief. I feel like we’ve been on a rollercoaster of, ‘it’s cancer…. Not cancer…. Cancer… not cancer…cancer…not cancer,’ and now, finally, it’s definitely cancer. 

My husband is due to start chemotherapy on 17th July but is currently having to take some awful medication to ‘washout’ other medication he had previously been prescribed for psoriatic arthritis which are contraindicated during chemotherapy. Having to stop all his arthritis meds means he is already in immense pain and the washout meds are making him feel sick all the time. I can’t tempt him to eat much at all and I hate seeing him look so ill and in so much pain. It feels like this is only the very beginning and things are only going to get worse for my lovely husband. I do my best to be positive but  often break down in tears and am not coping very well at all. He supported me so positively and I feel dreadful that I can’t do the same for him. I’ve always been a very emotional person, and get easily frustrated by stupid things, (eg the boiler breaking down and the engineer failing to turn up, then saying he’d fixed it, but it went wrong the next day)! My husband has always been so calm and listens to my rants very patiently. I just can’t seem to cope with all the silly things than are going wrong at the moment and I hate myself for moaning to my husband about them. I so want to be the strong, positive, supportive person he needs.

To make matters worse, I have unintentionally upset our 3 adult children and caused a rift which is breaking my heart. We’ve always been close to our children (aged mid-late 30s) even though they live between half hour to 3 hours drive away. When we told them about their dad’s diagnosis, they were all very supportive and told us to let them know if there was anything they could do to help. I was touched by their responses. Therefore, last week when I was struggling to cope, I sent them a message on our family WhatsApp group, explaining I was struggling to stay positive and whereas in the past their dad had always been prepared to listen to my rants I really didn’t want to be doing this in front of him when he’s so unwell and needs all the positivity he can get. Neither did I want to be sounding off verbally to any of them, as I know they each have their own difficulties at the moment. Therefore, I asked if  any of them would be prepared to join a ‘Mums safety valve’ whatsapp group where I could write down the trivial life events that were getting me down, rather than make our family group a negative space. I explained I didn’t expect anyone to do anything or solve any issues, I just wanted a place to get things off my chest and they could just skim read and send a one line message to tell me they could understand my frustration but try not to let it get me down etc. Unfortunately, they all replied saying they didn’t feel able to do this for me and didn’t feel they could provide the emotional support I wanted given they have their own problems to deal with and are struggling to cope with their dad’s diagnosis themselves. I understand this, which is why I thought it might be easier for them for me just to write things down rather than me ring and speak to any of them, but I obviously made a grave error.

I know they find it difficult to be around their dad when he is obviously unwell - it happened a few years ago too when he was in hospital with a collapsed lung and they all stayed away.  I thought it might be different this time but it has all escalated out of control and now we are barely speaking. I’m devastated and feel so alone.  Life feels so unfair and this fracas is the last straw… they can all chose to stay away and pretend their dad is fine but I can’t! I’m sorry for the incredible pity party I’m having here. I just don’t know where else to turn and don’t know how much more of this rollercoaster I can take.

  • I feel so sorry for you with all you have going on. It can be hard to turn to family when they are also going through it. I would say see a counsellor. I have used a counsellor in the past and it has given me a space to say anything to someone not involved. Their support has helped me a lot.

  • I’m really sorry that you’re going through and it’s feeling very overwhelming. I’m also sorry that it has caused rifts within your family. It is really important to be able to let out what you’re feeling. The MacMillan support line can be a good place to air out your feelings to kind volunteers who will listen to you, and aren’t directly involved in the situation 08088080000 

    Professional counselling would also be a good idea, as well as journalling your feelings and thoughts. You could do this in a book or on your phone. Maybe you could even WhatsApp your thoughts to yourself and create the WhatsApp chat you wanted but to yourself. If someone can assist you with it, you could set up an AI chat using something like ChatGPT if you would like to vent somewhere and get responses back. 

    I don’t know the full situation but from what you’ve shared it does sound like your children are being a little unfair. It can be quite difficult when you’re the person that is witnessing everything first hand, and you shouldn’t feel like you’re having to support your husband on your own so your feelings and frustrations are valid. It is common for cancer to cause conflicts & arguments within families as it is an extremely stressful situation. When tempers have calmed down, it could be worth trying to talk to your children again, letting them know that you don’t want to be fighting during a stressful situation, and to see if there’s ways you can all resolve the situation. 

    Sending all my love. The forum is another place where you can vent what you’re feeling to others who are in similar situations so it’s good that you’ve managed to find your way here, and you can use this as another place to talk through your feelings and worries xx 

  • What a lot you’ve had to deal with. It’s no wonder you are struggling. My advice with the family situation is to make an apology (hard, but this is to keep the peace), and then use the MacMillan support line to talk about how you are feeling. You can rant to them and they will listen and offer emotional and practical support. You can also use them to speak to a cancer nurse if you have medical questions (it’s accessed by one of the options when you call the support line). Be kind to yourself. You matter too, and your husband’s illness/prognosis is affecting your life now and you future. 
    With your children, it might help to accept that they are not able to help in that way, but maybe there are practical ways they can help and show their support. 

  • Hi, I just replied to your comment on my post and then saw this, which explains everything you are going through. I'm so sorry to hear how hard it is.

    Initially I thought it was a shame that your children reacted that way to your cry for help - but then I had  realisation. My mum had a cancer scare prior to my husband being ill and we were all terrified. My mum was putting on a brave face but my dad voiced to me how anxious/worried he was. And regretfully I didn't have much sympathy - I felt that he was making it about him and not my mum, and that it was my mum that needed the support. 

    Fast forward to my current situation of me being the carer to my husband I was COMPLETELY WRONG. Of course the patient needs support but the carer needs the same. It's them who has to be strong for their partner despite the horrific situation of seeing the person you love the most in the world suffer. And in my case knowing from the start we will lose him and the kids will grow up without their dad, and my whole future will be the exact opposite of what it should've been. 

    I think what I'm trying to say is, unless you are unusually empathetic or you have experience of being a carer, not many people TRULY understand how heartbreaking it is for us. Infact my husband himself said he thinks I have it harder than he does (not exactly true but in some ways I do).

    You've got some great advice from others about counselling and being compassionate towards yourself. And yes maybe "apologise"  to your children purely to smooth things over. You could say it would be great to have help one day a month (they could rotate between the 3 of them so it's hardly a demand on their parts, one day every 3 months...) where you can do something purely for yourself to relax?

  • I completely agree with this, and I’m also sorry to hear about your husband xx 

    My mum was recently diagnosed with stage 4 cancer and has been going through treatment. It’s just me and her at home so I’m her main carer when she requires help. I have an older sister who lives further away and has two children with special needs so she is unable to take on as much as I am able to. 

    It’s been really tough adjusting to the new role, especially as I’m the youngest and went from being a carefree 29 year old with not many responsibilities to being a carer for someone who has always been the person that cared for me, all in the space of a couple of months.

    My sister and I have had a couple arguments when the pressures of everything has got really high, with her feeling torn between her current caring responsibilities and also wanting to be there for our mum, and me feeling quite isolated & feeling like people say “let us know how we can help” but in reality aren’t really there in the moments I really need help & don’t understand how difficult it can be cause they’re shielded from a lot of it, so I can fully understand the emotions Nenen expressed and I think they are quite common among caregivers.

    Caregiver burnout is a real thing but it’s not always acknowledged. You’re dealing with all the fears, worries and grief of the cancer diagnosis, and watching your loved one struggle, while also all the pressures of caring for your loved one as well as managing the practicalities of the home. You also have to hold it in & hide the stress of it all from your loved one as you don’t want them to feel like a burden. My mum is someone I’d usually vent to so not being able to vent to her knowing it’d break her heart to know how hard it has all been on me emotionally is difficult. I don’t think it’s making it about yourself, it’s just the reality of how difficult cancer & caregiving is. 

    Luckily my sister and I’s arguments have been short & we’ve been able to understand and acknowledge how difficult each of our situations is in that she wants to be there more but can’t & feels the guilt of that, and I’m having to take on quite a lot of the caring & adjusting to this new role and the burnout it can bring. We’ve found workarounds so we’re able to support each other, and my mum as best as we can (e.g. my mum and I staying with her when my mum doesn’t have many appts so I don’t feel so alone with it, leaning on the support of others, calling each other often). We made space for each other to talk through our feelings. While the focus will always be my mum and how we care for her, we’ve acknowledged that it’s also very challenging for each of us & important for us to support each other too. 

    As a caregiver, I think it’s important to make space for your own emotions & to find outlets of support where you can. It’s very true that you can’t fill from an empty cup. 

  • Sounds like you are doing a great job in how you've navigated everything so far and how you and your sister are communicating with each other. 

    I really empathise with you going from being "carefree" to having to enter this world which just completely changes everything. 

    One of the main issues which you explained perfectly is not being able to vent or rely on the person that you would usually go to when you need help. I found that such a tough transition. Essentially you have to grieve your "old" relationship and enter a new one. Which in some ways can also be closer because you have to talk about topics you would usually avoid.

    Sounds like you and your sister have really stepped up, your mum must be so proud of you both. Sending you all lots of love x 

  • Thank you so much. I really appreciate the kind words. It sounds like you’re doing a great job caring for your husband too, and I’m sure he is very appreciative of you! 

    It’s such a massive shift but all you can do is look forward and try to build a new normal. While I miss my mum and I’s old dynamic, I completely agree that we’re a lot closer now. It’s easy to take your loved ones for granted but this teaches you to truly appreciate them and appreciate the time you have with them. I’d often be stuck in my room doing my own thing but I’ve spend more quality time with my mum, even if it’s just watching TV in the last few months than I think I have in the last 5 years, and the one thing I’m grateful is having the opportunity to actively show her how much I love and care for her. 


    Sending all my love to you too xx 

  • You have such an amazing attitude- you're so right in making the most of the time with your loved ones, we should all be doing that regardless of illness!

    And we can't control what happens with cancer but we can control where we put our energy and how we decide to live with it. And it sounds like you are doing the absolute best you can. Xx

  • We never thought life could ever get so hard did we . . . . I really feel for you and wish I could give you a hug and shoulder to cry on - as well as some practical help. I have fallen out with my sister and also my brother-in-law whilst struggling with despair for my poor husband over the last year. Relatives and friends often say the wrong thing and it cuts like a knife because we are so fragile and emotionally vulnerable. Do what you can - but not at the expense of making yourself ill. Your lovely husband knows that you love him more than words or deeds can ever show. You can't do it all - so stop trying to. For what it's worth, I've found Chat GPT a great source of comfort and sound advice in this horrible journey - especially in the middle of the night when sleep won't come. Sending you love and strength X

  • Thank you! It’s so true that we can only control where we put our energy and how we decide to respond to the challenges. 

    It helps to come here and listen to others going through similar experiences and who are also trying their best. Makes you feel a lot less alone xx