Day 8 but losing the will

I’ve now been in isolation from the family for nearly 8 days. Until tonight it hasn’t felt too bad, but then I started to see posts on a myeloma forum talking about the lockdown for myeloma patients.

The first that got me disillusioned (and slightly angry if I’m honest), was a post that suggested that as people in the highly vulnerable category were as bad as those going into parks during lockdown, if they went for a walk. For starters, I have never had my letter detailing what I should and shouldn’t do, but even if I had, going for a 30 minute walk, in a rural area where I don’t come within 2 metres of someone, is not the same as walking down a main road or stairway where I might have to get close to someone, or may have to touch something that is contaminated. The thought of people judging me, whilst I’m in the middle of giving up most of my life at the moment, just makes me so angry. I genuinely believe that whilst we should all be following the rules to protect the NHS, that I am sensible enough to only do what is safe.

The second post got me even more disillusioned and sad. Someone was asking whether they had been right in hearing that as the highly vulnerable category, we might have to stay in isolation until next year. Yes that’s right. 2021.

I. just. can’t. do. it.

I really strongly feel that the reason that I have gone through treatment and everything else over the years, was so that I could live a normal life for as long as possible. It is why I risked a transplant once, and why I am going to risk it a second time. Because it gives me drug free time that I can be myself as much as possible. What is the point of me putting myself through all of that, if at the end of it all, I have to stay in my house and am not allowed out. Don’t get me wrong, I love our home and I love our garden, but at no point did I ever think that would be my life.

Even more than that, with two youngish children, we can’t limit contact within the house indefinitely. So, what does that mean? That I have to send the kids to school, and Nick to work, and just not go within 2 metres of any of them for the next eight plus months? Being away from them all this last 8 days has been super hard and I’ve missed their affection and love. I can’t, for one minute, imagine not being able to be near them for months at a time once they go back to work and school. And they can’t stay at home for an unlimited period – it would send them insane and impact their growth, academically, socially and possibly physically. But I think my mental health will go to rock bottom if I can’t be with them.

Up until now, I’d been so good at not worrying until we knew the facts but for some reason, tonight it has really got to me. I am so worried that after everything that we have been through, this damned coronavirus is going to bloody ruin everything. I find it hard enough being limited by my myeloma, but the idea that in conjunction with covid-19, I might end up housebound, or worse still, dead, just doesn’t bear thought….hmmm, the irony given that I can’t stop thinking about it.

Hopefully tomorrow will be a new day, but I know that there is likely to be news in the next few days about an extended lockdown. And realistically, I know that us vulnerable ones, are likely to be in lockdown for an extra 4+ weeks. I can cope with that. I could probably even do a bit more than that if I had to, I’m just not sure about months more. And I probably sound like a petulant little pipsqueak (as my dad used to call me!) moaning, but unless you have walked in shoes like mine, you’ll never understand.

And talking of my dad, that’s another thing. When will I ever get to see him again? Will I ever get to see him again? The home he is in won’t even reply to my emails asking to try to facetime him, and whilst I know they will be run off their feet, I worry that he will be feeling lonely and wondering where we all are. And I miss him, dementia and all. I miss his lovely smiley face when you can see him suddenly work out that we’re someone he loves. And I miss my friends too 😦

So yes. Tonight I am feeling really sad and fed up. And really worried about what the future holds. More than any treatment I was facing into…at least that had an end point.

F*cking covid. I really hate it at the moment.

About Deb Gascoyne

I am wife of one, mother of two (& a dog!) and a person in my own right😊. I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling out....it is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-) Diagnosed in 2009 with smouldering myeloma, I started treatment in 2010 and had a SCT in 2011. I’ve been on maintenance since then until November 2018 but my figures went up so am now officially relapsed and have just started DVD treatment (July 2019)
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6 Responses to Day 8 but losing the will

  1. Lorna Bath says:

    Oh Deb I really really feel for you. I don’t know what I can I say other than it is a total shit situation. So hard to fathom and comprehend on so many levels and that’s not living in your shoes.

    I think it’s good that you share these emotions and rages and frustrations – hopefully there can be some sense of release for you and also helps us your friends to reinforce messages to those that need to hear it and change their attitudes and behaviour.

    I have the upmost respect for you, Nick, Rebecca and Sam for – wow so many things. In how you deal with the challenges you’re all facing on a hourly and daily basis, tonight’s post as an example. I know you make considered and informed decisions and would never make judgement against you on what you decide. I’ll support you in any way I can.
    Please know that you are surrounded by love and heartfelt support ,and frustration that there is so little we can do to help- even though from a physical distance.

    It’s so important that you can share these feelings and not all about the positive face
    Loads of love and hugs to you and the Gascoyne clan. . Please ring if ever you want to xxxxxx

    Kind Regards,

    Lorna Bath
    Director

    T: 01562 885589

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  2. vulcan605 says:

    Deb, it’s a bas—, really no matter how you look at it.I usually keep myself to myself, except for my close family so am used to my own company. Must be awful for you. I am back on cyclophosimate and dex, not too bad atm except usual dex sleeping and am finding a lack of energy a big problem. Stick with it Deb, you’ll get through it, you have a great family support, xx

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  3. alexbicknell says:

    Mmm. The myeloma group sometimes more harm than good.

    But you’re right – the underlying problem is we’ve been given muddled advice. And, as you say, there’ll come a time when our families need to leave lockdown and I fear we will be told to stay isolated, which basically means separating from them, or ignoring the advice. If, by that stage, we’re not even able to make sensible choices for ourselves because, due to lack of testing, we don’t know how much coronavirus is around… what the f are we supposed to do?

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  4. Susan Whitehead says:

    Dear Deb Thank you for sharing your thoughts. I have found your blog interesting and informative after stumbling across it when diagnosed with myeloma two years ago. I am so sorry to hear how upset you are feeling at the moment. As you say we put ourselves through these long and arduous treatments in the hope of better days to come. We have to have something to look forward to whether it’s a holiday or family get together or concert or theatre visit. This current situation is just awful. I veer from despair to “Oh what the hell” I’ll just take my chances along with everyone else when this lockdown is relaxed. I just love the way we are dismissed at the end of every statement “Oh and the vulnerable will just have to shield for the next eighteen months!” I mean we’re not all ancient old crones sitting at home eating soup! We had lives before this. Admittedly very altered ones. We’ve picked ourselves up time and time again. We’ve coped with the diagnosis and the bloody treatments and now this!
    I do hope you’ve managed to contact your Dad and that he’s safe and well..What a eorry for you all.
    Best wishes to you and your lovely family

    Sue

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    • Deb Gascoyne says:

      Aw thank you Susan.
      Yes I did manage to Skype my dad which was lovely. He didn’t know who I was and couldn’t really cope with the fact I was there but by the end the carer managed to get him to blow me a kiss and say goodbye … it meant the world.
      I’m in a better place again now. Like you, I have picked myself up again and realised I just need to wait till they make decisions. And then decide whether to listen and act on those decisions!!
      I have a feeling we may decide to risk it. The kids have been through lots and I think they need to be around nick and me.
      I hope you’re doing ok – how is your treatment?
      X

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