Looking for some support and hope

This topic contains 17 replies, has 11 voices, and was last updated by  thespider 10 months, 3 weeks ago.

Viewing 15 posts - 1 through 15 (of 18 total)
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  • #140869

    thespider
    Participant

    My husband has just been diagnosed with myeloma having just recovered from Prostate Cancer. I feel desperately sorry for him and am struggling to help him and keep positive. His liver and kidneys are fine and he has also just had an echo cardiogram that showed his heart was fine. He is awaiting a bone scan (in about 2 weeks) but he doesn’t have any bone pain so they are hopeful. He has just today had his first chemotherapy – he will be having injections twice a week and will be taking steroids and some other tablets. TBH, it’s all very confusing. I can’t seem to get my emotions under control! Is this normal or am I just being weak and useless? Did anyone else feel the same?

    #140870

    tmcintyre
    Participant

    Gosh yes, I remember how overwhelming it was at the beginning – a timetable of tablets to take, injections twice a week and seemingly endless appointments over several days. We were lucky to have a nurse who understood how it seemed all too much for us and she sorted out the appointments so we weren’t going in what felt like almost every day.

    After a while the injections went down to once a week and a nurse came to the house to do it. I got my husband a set of pillboxes and fill them up weekly. This year my husband is being monitored every four weeks but hasn’t had to go into clinic – he has his blood tests and then the specialist nurse phones him to discuss how he is and prescribes the next lot of meds.

    I can assure you that things do settle down and you will be able to take it all in your stride. It is a long term condition so life does change but you learn to live with it.

    Wishing you both all the best,

    Teresa

    #140918

    judithwaite
    Participant

    I dont think you are being ‘weak and useless’. You need to be kind to yourself as a carer. Its all very overwhelming at the beginning. With a range of emotions and it can be a bit of a roller coaster.

    Things will settle down for your husband and you will hopefully come to terms with his diagnosis. My husband is on 2nd line treatment now. We have always found the clinical nurse specialist very helpful. The myeloma uk website is also a very helpful resource. As Teresa says it is a long term condition and you will pace yourself in the end.

    Best wishes to you both

    Judy

    #140932

    starfish10
    Participant

    Hi, my husband was diagnosed 5 weeks ago and you’re right – the roller-coaster of appointments, terminology, drug regime etc etc etc is so overwhelming. Unfortunately I’m not really aware of his blood results, only that the paraproteins were incredibly high (I want to say 90+, but may have got that completely wrong!). Although they practically halved after 4 days of steroids. They used the phrase ‘he is heavily burgeoned’ with 75% of his blood/marrow (?) infected.
    I’m sure I’ll get my head around it all and know what questions to ask & what details are important.
    I just feel the info given so far has been quite vague and I suppose we’re not knowledgeable enough yet but it’s been great reading all the information and stories on the forum. It’s starting to make a little more sense! 🙂
    He’s just started his first cycle of treatment (3 days ago) and our main problem for the last week has been pain management.
    He was going to work most days up until 10 days ago, now he can barely get out of bed. The pain is excruciating for him. It’s hard watching a man cry……
    Tramadol wasn’t touching the pain and I got an emergency prescription for Oxynorm today – but that hasn’t made any difference. Lying horizontal on the bed is the time he gets any relief. Trying to turn, sit up, stand up etc is practically impossible. Is this amount of pain usual? They said his scans were all fine with no lesions etc showing. He has lost a lot of weight and I’m struggling to get him to eat much at all.
    He’ll barely have a few mouthfuls as sitting up is just too painful but he knows he has to eat for his medication.
    I’m just concerned something else is wrong or they are missing something. I understand this is a very painful condition but being unable to practically move sounds and feels worrying to me – or is this par for the course and will improve once the treatment kicks in?
    I hope this late night ramble makes sense! Any thoughts & advice from the wise & experienced would be really appreciated. 🙂 Thank you! x

    #140935

    thespider
    Participant

    Dear Starfish. I am so sorry to hear about your husband. I feel lucky as my husband feels quite well although tired and breathless and has VERY swollen legs. All of the initial information is all very confusing and I think some of that is because myeloma affects different people in different ways with a very wide range of symptoms. If it is any help, my husband is 4 weeks into his treatment and he is beginning to feel some improvement so I truly hope that your husband will do the same.

    This forum is great whenever you feel the need to ‘talk’ so do keep in touch.

    With best wishes to you and your husband.

    Spider

    #140936

    starfish10
    Participant

    Thank you thespider 🙂

    I’m sorry to hear about your husband too and so glad that he’s starting to feel some improvement.
    With the prostate cancer first, it sounds like it’s been hard for you both.
    I’m just worried as I haven’t seen many people with the pain that my husband is experiencing. He didn’t leave the bedroom today as sitting or standing up is just too much. My GP said they would refer to the palliative care team to help with managing the pain ……… which really freaked me out although I have to remain calm and in control at all times so as not to worry him.
    I feel like my emotions are all over the place too but we will get them through this!
    Good luck with everything and yes, I will definitely continue to post on here. At least we all know what the other is going through, albeit at different stages.
    Many thanks again & best wishes to you both x

    #140937

    thespider
    Participant

    Dear Starfish. I’m not going to say ‘stay strong ‘ or ‘keep your chin up ‘ as they are said when people don’t know what else to say!! All I will say is, try to take one day at a time and not think too far into the future. I am sending positive vibes and hope your husband improves soon.

    Keep in touch.
    Tx (Spider)

    #141129

    bigb
    Participant

    Hi There
    You are not being weak and useless at all – its such a shock to get the diagnosis and it takes a while for everything to sink in.
    I can understand exactly where you are coming from. My hubby was diagnosed just August last year and has just come to the end of his 6th cycle of Chemo.
    It has been hard going – especially the last 3 cycles during which he has been in hospital twice (1st time with Flu and 2nd time with his kidneys playing up) and has had 3 small blood clots in his lungs.
    It has hit him really hard as he has always been so fit and well.

    We both have good days and bad days and the silliest little things can set off a row between us – the last one was about mushrooms!!!
    But its because we always know we can trust and rely on those people nearest to us.

    Today I have had a visit from the loveliest lady we met in clinic whose husband is also having treatment and had stem cell therapy last year.
    She was so knowledgeable and has given us so many hints and tips about what to expect.
    It was wonderful to be able to talk to someone who is also going through this.

    I am seriously thinking of trying to find a local support group to attend.

    Remember to look after yourself too as you need that care and attention too.

    #141204

    2020
    Participant

    Hi everyone
    This is my first time using the forum. My husband was diagnosed in 2009. In 2015 he had his first round of treatment and stem cell transplant and is in remission. My husband suffered from Myeloma Kidney which has left his kidney function impaired. He is suffering from really bad fatique and his mental health is very poor at the moment.
    My worry about Covid 19 as I am sure it is for everyone, is getting quite overwhelming. I just wanted to ask you guys what you think of my situation and if in your experience you might offer some advice. I work in a care home and when my husband received his shielding letter I was so nervous that I decided to isolate with him. In my working environment there was no way I could social distance and the care home uses agency staff on a regular basis which was adding to my anxieties. I have been off for 4 weeks and I am beginning to wonder if I should look at changing my career. We have both tried to do as much as we can to have as normal a life as possible and I have worked around his treatments and health difficulties where I could but I just don’t know what to do for the best right now. Covid 19 isn’t going away anytime soon and I don’t want to return to work and put him at increased risk as a result. I would appreciate your thoughts. Thanks

    #141205

    suew1960
    Participant

    Hello
    My husband and I were having this same conversation this morning. I was diagnosed two years ago and am now on watch and wait following STC last February.
    I was pretty shocked to discover that myeloma patients are at greater risk whatever stage we’re at whether having treatment or not!
    He decided like you to stop working and stay at home for the 12 weeks. We are halfway through I think now, but the situation is still so dreadful isn’t it? What is going to change for us? So many unknowns. He feels like you I think . How to resume working safely but still come back home.The guidance I’ve read just sounds impossible to social distance inside the house! To eat separately etc etc! It’s just ridiculous to be honest. I suppose we will just have to decide for ourselves in the end what risks we take. At some point at some time we are all going to need to attend hospitals or dentists for example. Obviously your job puts you right in the front line doesn’t it? I salute you for the work you do in such an underfunded and overlooked part of society. Keep well and keep safe. Hopefully one day soon things will improve.
    Best wishes
    Sue

    #141206

    2020
    Participant

    Thankyou Sue
    I really appreciate you taking the time to reply to my post. I hope you and your husband are well and that lockdown is going ok.
    Your comments have reassured me that I have made the right choice for my husbands wellbeing. I don’t feel so bad now that I hear your husband has felt the same. I have been torn between my duty to the people I care for and my home situation. I don’t think people realise the complications there are when a loved one has Myeloma and I can sometimes feel that work colleagues, neighbours and others think it can’t be that bad. I think the NHS shielding letter brought home the reality and the risks when you are living with Myeloma. My husband is relieved that I am at home but also he feels sad that I have had to stop doing the job that I love at one of the most crucial times for our NHS and social care. I really feel for my husband as he blames himself that things can’t be simpler.
    We will all need to get used to the new normal as the politicians keep saying.
    Take Care Sue, looking forward to better times soon.
    Wishing you all the very best.
    Margaret

    #141229

    deb
    Participant

    Hello,

    Until today I have been an occasional reader of this forum, and have asked a few questions of the Nurses which I have always found an incredible support, and lifeline. My Husband was diagnosed at 52 in November 2018, had 6 months of induction therapy prior to an SCT in July 2019. He achieved a really good partial remission, and has since been on 2 monthly reviews with the Haematologist. Having read the last 2 posts I had to register today to respond, as I have found myself in a very similar situation over the last few months. I work as a Nurse in the private sector, and the fear and uncertainty of what to do during this time was all consuming, and for me a very lonely place to be. After much sole searching, goggling everything possible, and asking the experts it became apparent to me that I could not continue to work unless I moved out. Through out all of this the one certainty for me was that I would not leave my Husband to face shielding alone, my GP has supported me and I am off work until the end of June. I too feel incredible guilt at not doing the job that I love, and I have no idea what I will do as June comes to am end. It is such a difficult situation, I hope this post somehow helps,as your posts certainly helped me know that I am not alone. I wish you all the best and hope that you all stay safe and well. x

    #141230

    2020
    Participant

    Hi Deb
    Reading through your post has provided me with reassurance that I have done the right thing. I think I know how your feeling and I completely understand and glad my post may have helped you in some way. We live in Scotland so we are slightly behind in the move to ease the restrictions. I watch the UK news in horror and my anxieties increase when I see the crowds gathering as the lockdown eases. I think we are all at a point where we are re- evaluating our way of life. Covid 19 as awful as it is, has allowed me to identify that my husband needs more help than he has ever admitted to. I am taking a positive from the situation in that I now know what I need to do to support my husbands wellbeing.
    I hope you are ok and for what it’s worth don’t put too much pressure on yourself to go back at the end of June.I know as the weeks have gone on I have been more comfortable with my decision and I hope that has been the case for you. Reading the Posts on the forum has been invaluable to me in the last two months. Just knowing your not alone is a massive help.
    Take care and wishing you well.
    Margaret

    #141231

    deb
    Participant

    Hi Margaret,

    Yes it is worrying when you see how crowded places are, and I was even more worried when the advise that the shielded could go out on Sunday was made. Several friends have made the assumption that that means my Husband is no longer at risk ,so I am pleased to see the updated notes on this site today which certainly reflect how I feel, and gives clarity.

    I am pleased you made the right decision for you and your husband, and I hope that I will as well.

    Thanks for responding to my post

    Both stay safe and well,

    Deb

    #141232

    mark-j-underwood
    Participant

    My Wife is shielding with me, since she works on Adult Social Care and it was just too risky for her to bring the infection home with her from her place of work. Thankfully, her employer has Furloughed her on 100% pay for as long as it takes, their words, and she will be off work far past the current 12 week Shielding period. I do know of some care organisations insisting already that partners of Shielded people return to work in June. That is rather uncaring and puts people at risk in my opinion, especially considering the death rate keeps hovering around the 300 mark, thousands are still catching it every day, plus the ‘r’ and ‘k’ rates are showing signs of taking off again.

    Having had six chest infections last year and a spell on ECMO after contracting viral pneumonia in later 2015, we won’t be taking any risks for the foreseeable future.

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