Firstly apologies for what is going to be a miserable rambling post. Lying in bed crying my eyes out for the most stupid reason. My 15 year old son has just started a week of work experience - he has gone up to Leeds (we live in Hertfordshire but his grandparents live in West Yorkshire) and he had just texted me to say he has navigated the train from grandmas to Leeds and got to his work placement. Why am I crying? Ever since this recurrence I’ve felt so ill, I’ve been in hospital, I’ve had constant sickness and nausea and now I am so weak I can hardly make it downstairs - all I can do is get from my bed to the reclining chair in our lounge. I feel like I’m missing out on being a proper mum - I should have gone up to Yorkshire yesterday to wish him luck and I couldn’t, all I can do is text. My daughter gets home from school and has to do so much to help and my husband is permanently working from home now. I feel like such a burden on everyone. I’ve never been this ill before - I’ve always had more normal days than I’ll days with previous treatments and I’m finding this so hard to cope with. I haven’t even finished round 2 of this chemo yet - I have my gem top up on Wednesday and then I’ll be a third of the way through but the end seems such a long way off and as much as I try I just can’t get my positive head on. I’m sorry for another wallowing post but I know you will understand how I am feeling. I know I need to man up and get on with it - so many of you have and are facing just as much and worse than me so I think I just need a strict talking to!!!
Becky.
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You won't get a strict talking to from me! I send you virtual hugs and understanding. I'm lucky that I don't have children to worry about, chemo is bad enough without having to put on a brave front for the kids,
I had a period of worrying that my hubby would get fed up of having to do do so much for me, but he never has. I spoke to a counsellor who said that maybe my hubby can cope better if he has to do things for me. It was true too!
You need help. Have you tried getting financial help for a cleaner? What did you do first time around? Maybe you didn't need so much help then but it's worth contacting those who offer support now. Go back to basics and look up all the support offered first time around, maybe.
Tell us more and we may find something you haven't tried yet.
Stay with us,
Lots of hugs,
Iris XX
Being a parent is tough being an ill parent is super tough, a lot of us know exactly how you feel.
DEAREST Becky, I felt so,so sad for you when I read your pos I so agree with Iris you absolutely do NOT need to man up you need help. Great suggestion about getting some helparound the home and then you can concentrate on the important stuff. I also think if you haven,t you should contact the specialist nurse and or the chemotherapy unit. In this day and age they should be able to do something about your nausea and vomiting and relieve any other symptoms you have. With all my heart hope you feel better soon. Love Chris
As others have said please dont apologise , you are dealing with so much and feeling so I’ll no wonder you feel like having a good cry . I’ve learnt a good cry does me good . I think we all feel guilty about how much this sh **y disease impacts on the lives of our loved ones especially our kids . But I’m convinced dealing with all this emotional and physical crap will make them stronger in the long run .
My husband got obsessed with doing the washing when I was recovering from chemo and surgery. Said it gave him some sense of achievement. ( poor thing !). as he felt alot was out of his control . I think our loved ones need to feel they are doing something to help but our kids are older so sounds a great idea to investigate options for a cleaner or support to take the pressure off .
Would also agree maybe a chat to your CNS to check if they can help with your symptoms and make you feel more comfortable.
I am a mum that has always been teary and emotional when my kids reached a new stage of their lives , going to nursery , school , work experience . Nothing to do with the OC just an emotional mum ! 😭
Sending a big hug. Love and best wishes for the rest of your treatment .
Oh Becky I understand so so well how you are feeling - I have felt the same way many times, my kids are similar ages to yours and I've missed out on life events, missed out on taking my daughter to university open days, was in hospital when she was doing her work experience, can't do anything practical for them etc. It's so hard and so frustrating but the advice I've found most comforting is remember that you are still there with them and loving them and that is the most important thing. Who you are, just being, without doing anything. And that is mothering and being a 'proper' mum. You are doing it. And you are doing brilliantly.
I think you need a big hug and to know it’s okay to feel like that. I know what it’s like to feel as if you’re doing the Mum thing wrong because at the moment life isn’t as we know it. My youngest was 13 when I was diagnosed. But they are also young adults learning about life and this is a very valuable learning curve even if it’s one we would prefer not to be part of
You must be so incredibly proud of how they are not only looking after you but themselves too
Once treatment is over and you start to find your new normal. Family life will settle into whatever that will be. Personally I found recurrence much harder than diagnosis
Be kind to yourself, rest your body, let the tears flow but to get rid of the negative energy. Talk to us all a problem shared is so much better than one locked in. Look at me I’m in constant needy mode at the moment and have given up fighting it lol
I live in Ware. I am in constant awe of you LA - and at the risk of sounding a little bit like a stalker (lol) I follow you on Facebook and your blogs because despite everything you are going through you make me smile and give so much inspiration to so many of us. You are right - I am so proud of my children and that’s what makes me so sad sometimes, that they have been dealing with this the last 3 years of their lives. Since 2015 despite a 14 month remission we haven’t had a year without cancer and chemo and I’m not coping with this one. It’s making me think very seriously about whether I will take this course of treatment in the future but who knows? I hope you’re feeling better today - it’s frustrating being miserable!!!!!
Awww Becky you wont get a strict talking to from anyone. I don't know if it's the Gem but I so recall feeling as you do now, I even cried when I went to chemo because I hadn't done my dusting! Can totally relate to how you are feeling now and it's total rubbish. Be kind to yourself, bet your family are 'happy' if that's the word to be caring for you and doing what they can. Before you know where you are you will be back able to do as you were before. Rest and it'll come sooner than you think. xx Big hug. Kathy xx
HI Becky, No, no, no you don't need to man up, you don't need to be positive all the time. What you do need is some hugs & to let go of that burden feeling. I have been there so many times with feeling a burden to others but none of my family have complained yet. All cancer treatment is difficult so please don't beat your self up.
It just shows you how well you have bought your son up that he has been able to do what he has done. The feelings you are having over not being there for him is normal I really do understand . When my son was in his teens I was a nervous wreck & I didn't even have cancer then!!! I used to panic if he was 5 minutes late from school & no way would I allow him to go on a train or bus even to town on his own!!!! Now looking back on it I do regret that I was far too over protective & my son often mentions it. So feeling like you do is understandable. Also chemo can have side of effects of giving you anxiety & depression it depletes your serotonin levels. So if you feel like crying do it. I have had so much chemo & crying & being a complete mess is very normal for me. This might be how your mind deals with such a sh*t situation.
Have you got someone close you that you can talk to? Putting on a brave face in front of children is the hardest thing to do its so exhausted. Please look after Becky because she needs more love & understanding. Thinking of you take care Cindyxx
Oh Becky, you get big hugs from me. It's hard to adjust to the changes in our families.
I don't know if this will help or not, but imagine it's your husband being sick. Wouldn't you just roll up and your sleeves and do whatever needs to be done, and be grateful you can help your beloved?
I believe it's perfectly fine to use what little strength you have on a bad day to try and get through it, and focus on yourself for a bit... and to leave the rest of life to others for a while, including cleaning/household, and doing more than sending a text.
Maybe, if it gets a bit much for your family, and if budget allows, you could hire a cleaner, order suitable take away food (if that exists), order groceries for delivery or somesuch, every once in a while?
Really hope that your medical team can adjust your meds (or the chemo dose), so you start feeling better soon. That just doesn't sound right.
Sorry you’re feeling low and no need to apologise it’s completely understandable, we are all with you and it’s a total emotional rollercoaster that’s for sure. I’m at the beginning of the journey and have cried every day since my diagnosis 3 weeks ago, it’s so much to try to comprehend.
My kids are 12 and I do worry about the effect this could be having on them but they are more resilient than we think and I’m sure your kids are the same. I’m sure that once this treatment is established you’ll start to feel stronger and before you know it the treatment will be done and you can enjoy the summer months ahead.
Sending you lots of positivity and a big virtual hug,
Dear Becky. So sorry to hear you’re having such a rough time. You have every right to feel perfectly miserable. My children are much older than your two but I found it hard to accept their practical help even though I knew it was willingly and lovingly given. I think it has something to do with the fact that nurturing is OUR job as a mum and we feel bad when we can’t do it but goodness me, your son deserves a big pat on the back for getting himself to his work placement and it will really help his self confidence and when you’re feeling more like your normal self, I bet you’ll start to feel pride in your mothering skills. Sending you love and a big bunch of 🌺🌻🌹🌸🌼🌺🌻🌹🌸🌼 Jo xxxx
Becky, I too am crying reading this. Have been doing a lot of it lately. Can’t help it and neither can you probably. I just feel sorry for myself and worn down. As I speak I’m in hospital yet again getting bloods and chest x Ray as I’ve had a rotten weekend at home spent after having this pleurodesis, mostly in bed unable to do anything. 2nd Chemo due again next week....
It’s hard.
Cry away. Get a proper real life hug if you can.
Reach out to someone maybe on the helpline, Ovacome, Target?
You’ll get through it in time. Keep talking in the meantime and putting one foot in front of the other...
You have no need to apologise for a good cry and you certainly don't need to man up. Your son is showing you what a strong independent young man he is and you have helped him to get there. As for Uni open days I think our offspring talk to more students when we aren't there and they can ask all the questions we might possibly frown at!!!! Don't give yourself a hard time, try and get some alternative meds from your team and let yourself be looked after. You are so worth it and you'll feel so much better when this chemo is over. Sending big but gentle hugs xxx
We have all been there and you won’t get any criticism from any of us. Your children are younger than mine, they are just finding their way in life, but doing very well may I say.
I just had my first grandson and used to stubbornly pick him up from my daughter to look after him and just about make it inside with him before I threw up!
All our families have helped to get us through and it’s surprising when you rally, the good times come back and it is quickly forgotten.
So,you are talking to people who know and are here to support you, don’t beat yourself up, just be kind, get yourself through and don’t feel guilty,
Oh Becky I know exactly where you are coming from and have beaten myself up many times about the same things. And indeed probably will again when I get to feeling low and ill but it is only a temporary situation.
Give yourself some slack as they say. You are unwell at the minute so everything is more difficult including being kind to yourself. Getting upset is just a waste of precious energy. No you are not going to be able to do everything the way you would have done before you were ill but that just makes it different not wrong.
It is only natural to feel guilty about how this illness affects our family’s but it was not something we chose. This cancer is not us, it is not our cancer and the situation is not of our creation. Guilt is a useless emotion it does not help us or anyone else. I too hated to see my husband and children having to take on my jobs at home but two thoughts from someone much wiser than me helped me through. Firstly that I now had a new full time job which I had to do and no one else could and this was overcoming this vile disease. And secondly that if my family did not want to care for me they would not and therefore it would hurt them if I refused their help.
Finally and then I promise I will go away. As others have said do get a cleaning lady. It has made so much difference to the well being in our home it is unbelievable. To this end apply for PIP benefit and ask your CNS to get the paperwork done for you. Receiving treatment for cancer and/or recovering from cancer makes it very much easier to get this benefit which is not means tested.
All the very best and I know you will feel better soon.
You need to be absolutely gentle on yourself just now aNd not worrying about punishing yourself. You sound like a great mum abd your family will really know this. Is there anyone local tobyou thatcuou could ask for support or help from? Sometimes they can take that burden away from you a while you so you can focus on resting and getting better. Do retry and do too much. And don’t feel pressure to do more than you can. Remember, this will pass. Your family will be fine. You evidently care for them the rest of the time This is your time to get better.
I know what the endless slog of chemo feels like. Can you get your side effects under control via your Dr maybe? It seems to be this which is making you feel so rubbish.
Becky--I seem to come late to the response part at times but what I found (just finished my 6th of six treatments on Carbo/Caelyx) is there is a cycle to treatment mentally as well as physically. I tend to get depressed as I start to feel crappy, then as I "come out of it", my spirits start to rise as well. Its so predictable but unstoppable. I try to comfort myself by saying this will pass and it always does, then I am able to put things into a much better perspective. Not while I feel sick though.
As far as kids--I think they are more astute than we may want them to be and if you feel like it, maybe just tell your son how you wished you could have been there but texting was great. Its a connection for both of you and one at your fingertips no matter how you are feeling. My kids communicate that way more than with actual talking (!!!) so for your son, my guess is he felt very connected when he told you he made it and your response--whatever it was--told him you were there for him.
Hoping you feel better soon and please take the advice to tell your team how much the side effects of treatment are affecting you. They always seem to be able to try another remedy when needed. Hugs, MaxJor/Judy
Hi Becky, you poor love. We all have our moments, I call them my pity-party days. We put so much burden on our shoulders as women, taking care of everyone else that it’s difficult to let others take care of us. One of the hardest things I had to learn. My poor husband felt so helpless that it broke my heart to think I was causing him this pain. That’s been one of my worse things to work through, the guilt of causing pain to others. Which is totally ridiculous, none of us asked to have this disease. Don’t forget that going through these treatments is hell (forgive the language) on our hormones, mixed with drugs and everything else it’s a wonder we even lift our heads some days. Just remember you are strong, you are a woman which by very definition hi think) means strength. Good luck to you and know that all of us here are rooting for you, even as far as from across the pond.
Where does the energy go to? I am surprised that you find strength to text. Its a mission. Tell the onjco that you are flat and need your bloods taken for analysis.
Aaaw Becky, don't apologise for rambling, you're feeling like shite and we all completely understand so if you can't tell us, then who can you tell. My boys were 9 and 13 when I had my op and the eldest became a dab hand in the kitchen and the youngest a master with the Hoover. fast forward two and a half years and I was having chemo whilst also working part time. By the time I got to cycle number 3 of 6 I was struggling. Nausea, fatigue, mood swings (bloody steroids), acute hearing so even the slightest unexpected noise made me jump and I just felt so miserable. Again the boys stepped in to help when hubby was at work and I hated it, I was supposed to look after them, not the other way round and this just added to my bad mood. I also remember my mood dipping terribly about 4 days after chemo and i would be vile for about 3 days. Again this was the steroids. Just before I started chemo we booked a holiday to Cornwall for a week which fell just before cycle number 6. When I found myself having really bad days I just focused on that and it really helped me as it felt like the light at the end of the tunnel. There were times when I wondered if I would be fit enough for it but surprisingly I was as knowing I only had one session left to go when I got back really spurred me on. We had a wonderful family holiday and it was lovely to watch the boys be teenagers again. Could you maybe look at planning a family break for you all once your treatment has ended ? In the meantime please stop being so hard on yourself Becky, the treatment is tough but you will get there, I promise, Kerry xx
I had carboplatin and gemcitibine by far the hardest chemo to deal with. I felt so fatigued all the time. My mum used to come round and help me out with some cleaning
Am coming in very late in the day and can't add more than what's already been said. Just to add a bucketful of understanding and a huge hug. Chin up buttercup. Gem/carbo a stinger to get through but get through it you will. 😘 😘 💐💐💐
HI Becky. I've just read your post and I can't add any more then what the ladies have said be kind to yourself. I understand how you feel my husband has been so good, this trial drug has really knock me around he does all the cooking ,washing and goes to work.
Hang in finish this treatment and hope you have a good result it wont be long and you will feel better..take care Lorraine xx
Totally agree with what's been said. It's so tough so please don't be tough on yourself! I am really feeling for you. Sending hugs and really hope you feel better soon.
Becky, I think its difficult with 15 year olds....my kids are just about to have that birthday...you want them to understand you are ill but also want them to think you will improve....which you, at the some time,are hoping is true yourself!
Try to be kind to yourself....it is great that your husband can work from home, hopefully he'll be pleased he can look after you. Your treatment will come to an end and you are suffering as much as any of us...just slightly differently(!)
This is a horrible disease and the treatment is often horrible too......try to think of something to look forward too when this is all over. When you feel better you can encourage all of us but now encourage yourself and your family.
Becky, first of all immediately when you wake before you even begin to feel sick you need to take antinausea meds. Once your sick its too late. Try that you might feel better. 🌼Liz
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