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I’m struggling as a wife of someone who has had cancer but is now living with the effects of treatment. It’s been five years of cancer affecting our lives and even though my husband is cancer free he now has a PEG and has been in hospital twice in 5 months with complications with his airway. I’m really struggling and fear he will go back into hospital again, I listen out for his breathing and can’t sleep due to the noises he makes. He works but it exhausts him and I’m really struggling with work and I’m fearing I’m now having health anxiety. I’m awaiting a ECG for heart palpitations and monitoring my blood pressure, I’m off work and feel really low. I feel I need someone to talk to but I don’t know where to start.

Tracey x

  • #Young

    Hello Tracey

    I’m very sorry to hear about the challenges you and your husband are having with your health. We will forward your enquiry to our team of nurses who will be able to help you about this further.

    My name is Stacey and I am an adviser from the Work Support team here at Macmillan.  I would like to offer you some information and advice about your rights at work – both as a carer and for your husband as a cancer patient too.

    Firstly, if your husband is suffering from the effects of his cancer treatment, he does have protection under the Equality Act 2010 (if you live in England, Scotland or Wales and the Discrimination Act 1995 in Northern Ireland) This means that cancer is automatically classed as a disability and if his employer has a knowledge of his cancer condition, he has a duty to provide reasonable adjustments for him at work. This would still apply even if his cancer diagnosis was in ‘remission’ but he was still suffering from the effects of his treatment – and it still has an effect on him when in work. You say that work exhausts him and so one example of an adjustment would be to work less hours (although he may have a drop in salary unless stated otherwise in his contract) or longer rest breaks, lighter duties etc. These should be there for as long as needed, with the intention that he can return to his substantive post when he is able. Here is a link to our booklet about ‘Your Rights at Work’ which explains his protection in more detail:  Your Rights at Work

     

    Secondly, you may also have some protection and access to reasonable adjustments if you are not well and have suffered a health condition that has affected you for over a year and likely to affect you for some years in the future. But you will chiefly have some rights as a carer for your husband. Carers who are employees have a legal right to take some time off work for an emergency if it involves the person they are caring for (Employment Right Acts 1996). This may be for an unplanned hospital appointment or if they suddenly become ill. (The time may not be paid for – unless there is  work policy for carers that says that they will pay for a number of paid days’ time off).  If you have  worked there as an employee for more than 26 weeks you can also submit a request to your employer once a year for flexible working.  Examples of this would be working flexible hours, working part time, taking flexible holiday. If an employer turns down your request for business reasons you can appeal against it too. The best arrangement though is that you and your employer might come to an arrangement that would work best for you both. Here is another link to one of booklets and it is information for carers when working and caring for someone with cancer:  Information for Carers

     

    However, it seems that your priority just now is to discuss your own health as well as you husbands. Please look at the reply from our team of nurses for further help and advice about this.

     

    I hope that you find the above information useful in the future. Please get back in touch with us if you need to talk about your work situation further. The other option is to talk to our Work Support team by phone if you prefer this option. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or by email

    Stacey

    Work Support Adviser

    Remember, you can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am – 8pm) or by email.

  • Hi Tracey,

    Thanks for getting in touch at what sounds like an incredibly difficult time for you and your husband. I hope you found Stacey’s reply helpful.

    We are happy to read that your husband is cancer free, but not so that he is struggling with the long-term side effects of treatment as it’s affecting day to day life.

    It’s completely understandable you have fears about him going back into hospital. Checking his breathing while he is sleeping is going to have an impact on your own physical and emotional health. I wonder if you have been able to speak with either your husbands GP or hospital team to let them know your concerns. They might be able to give you reassurance about why he is making noises when he is sleeping.

    I appreciate you are worried about going to sleep because of the previous admissions your husband has had due to his airway. However, I wonder if it would help to look at the NHS information about ‘trouble sleeping?’

    I would also encourage you to speak with your own GP about how you’re feeling. This will also give you the opportunity to discuss any anxieties you might help about your own health.

    Looking after someone you love can be extremely rewarding but it can also be tiring, so it’s really important you remember to look after yourself too.

    We have a family and friend’s group and also carers only group you might find supportive. This is where people in a similar situation can share their experiences and support each other.

    Going forward, I hope you are both able to speak with your employers as mentioned in Stacey’s reply and are both able to get reasonable adjustments put in place. This will hopefully help with the exhaustion you’re both feeling just now.

    I hope this information is helpful, please don’t hesitate to get back in touch if there’s anything else we can help you with.

    You’re more than welcome to give us a call on the number below to chat things through.

    Best wishes and take care

    Sarah (Cancer Information Nurse Specialist)

    You can also speak with the Macmillan Support Line team of experts. Phone free on 0808 808 0000 (7 days a week, 8am-8pm) or send us an email.

    Ref/ LM