I'm not usually one to feel sorry for myself, I usually try to remain upbeat and see the positives. That's not to say I haven't had some really low spots since diagnosis in December 2015 and recurrence in December 2017 after 7 months remission.
My 2nd line treatment is taking the form of Caelyx/Carboplatin. This is week 4 of cycle one so I had really hoped this would be a good week where I could go out and do stuff. But I feel so fatigued and just can't be bothered, the last 2 mornings I have had nose bleeds that have continued for 2 hours+. I am sitting here sniffing as I daren't blow my nose! I know my haemoglobin count must be low and only hope that there is enough time between now and Monday (when I start cycle two) for it to come back up. I am on a clinical trial at the Royal Marsden Hospital, Sutton, Surrey which is a 2.5 hour+ drive from here. I am the driver as my husband is sight impaired. I was desperately disappointed to pull the standard arm of the trial but decided to continue with the RMH as long as I am able as they are one of the best cancer hospitals in the country and I reckon now that I am on their radar when I need further treatment down the line I will be best placed for any new drugs/trials.
My husband is wonderfully supportive and I could not imagine myself taking this "journey" without him but he has his own health issues and I am very concerned that I am dragging him down with me. I just cannot seem to jolly myself out of this low mood.
I love this forum and read the posts and updates pretty much everyday. I don't contribute as much as I should but I do try to add my own thoughts every now and then.
If you have stuck with me this far - thank you, I think I feel a bit better just for writing my thoughts down.
Good luck to everyone who is affected by this horrible condition and thanks for listening.
Janine xxx
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Hi, I am sorry you are in this position, & a two hour nose bleed is not good. My advice would be to get in contact with your CNS or GP. I have suffered nosebleeds in the past & was naseptin not sure if this the correct spelling but it does stop the bleeding until you can get sorted out. It is only available on prescription though.
I think that we all get down days,I had one of those on Monday & like you I am normally very upbeat & get on with most things that are thrown at me. I always get like this before my checkup,which is a week tomorrow & I will be glad when it is done. I suppose like everyone there is this huge fear of it returning.
I do hope that your next treatment can go ahead as most of us just want to get on with it asap. Love Caledaxx
We all understand Janine. It's hard to be positive all the time and you are allowed to feel down now and again, in fact I think if you have a down time it makes you more positive ( if you know what I mean)
You are doing well. Considering you didn't have long in between your cancers. Please don't beat yourself up .xxxx
Regardless of where we are on our journey we all get low moods, I know I do and I'm in my tenth year and currently NED so when going through chemo I found it tougher as the worse you feel the lower the mood. We can't be upbeat and positive all the time, I know I'm not. I believe that once you start to feel better physically your mood will improve. In the meantime be kind to yourself. Sending you a big hug. Kathy xxx
Hi Janine - Like you I'm on caelyx/carbo and I am so pleased that we're able to post like this on the forum. We all have down days, and sometimes these days seem to run into each other, don't they? But when this has happened to me, I've listened to advice and shared my feelings. Not only here online, but I've contacted our local Maggie's Centre for drop-in counselling and advice. Do you have one near you? They've been a good resource for me, even though I used to like being private, and didn't naturally "share" my problems!
I can also imagine that the long drive to the Marsden takes it out of you, and of course I understand your concern for your husband. I think sometimes that that's the most difficult part of all of this - seeing the effect our treatments have on our loved ones. But you must look after yourself first, and it's certainly not always easy to be positive and upbeat. It's a GOOD thing to talk things through with friends, and virtual friends here, if possible.
Looking outside today, we've got a bit of spring sunshine so I'm trying to focus on this. Hope your day is getting better, Janine. Thinking of you. x
Thank you for your response. I have heard of the Maggie's Centres but the closest one to me is in Cambridge which is an hour's drive from here. There is actually very little locally by way of support for OC specifically which is frustrating. Like you I never used to be one to share my feelings, I always dismissed counselling as not for me, but now the idea of people to talk to is more appealing, which is why this site is so welcome.
And yes your point about this being hard on the family is the worst thing. I can bear anything for myself, it's causing heartache for my husband, children, grandchildren and elderly mother that is by far the worst.
Take things very easy and don't beat yourself up about not doing very much. Watch some films and enjoy or read a book. It doesn't matter for as soon as you feel well again you'll be able to do more. Do try and get outside every day though even if only the garden and fir a short while; it lifts the mood so much.
Speak to your CNS about the nosebleeds, there's probably some medication that will help.
Thank you for your reply. You are right about the fresh air - I do try and get out most days with the dog, at least the weather seems to be improving. I will definitely mention the nosebleeds to my oncologist on Monday
Like everybody else has said we all have these periods where we feel a bit blue. The weather doesn't help either does it? I think we all feel a little brighter when the days are brighter? And you will feel rotten with the treatment so you're allowed to be down in the dumps.
I too had the nosebleeds, aren't they spectacular? I was on blood thinners so it was a bit like a massacre had taken place each time I had one, One of my chemo friends had a particularly full on nosebleed one day and some splashed on her wooden kitchen worktop and it totally stripped the colour out of the wood, it's fierce stuff they put into us isn't it.
The royal marsden had really good results and an excellent reputation so I can understand you wanting to remain under their care despite the long journey.
I really hope you do feel better after sharing with us, but you don't have to be cheery and bubbly all the time you're allowed to be fed up but if it becomes worrying for you then your CNS will be able to put you in touch with people who understand and can help plus we are all here and anytime you feel the need to rant a little go for it.
Take lots of care, sending big hugs and love ❤️ xx Jane
Thank you for your reply,Jane. The nosebleeds are pretty spectacular! I will mention them to the oncologist on Monday. I don't have a CNC assigned to me, I have found you don't get the personal touch at the RMH like you do in the local hospital.
Janine- I am so sorry you are having a tough time. I don't think there is a single one of us that doesn't have low points and feel extra sad. I have had a particularly hard week but am so grateful for the support here. Please- feel free to vent, complain, cry or release whatever is building up. We understand. We are with you, and we all go through it. You got this! 💜
Sounds like you are feeling a bit low at the moment,so, the only way is up!
I am ok at the moment,but I do still have down days and I feel so ungrateful,I think it's what we have been through/still going through,life isn't the same.
I have a husband with Parkinsons,he's ok,but, it's like double bubble and it's not fair,life isn't,but we have to pick ourselves up and carry on.
On the bright side, spring is coming followed by summer and we are all still here in varying stages of our journey.
I just want to wish you all the best,we are always here for each other,good and bad,hoping you have a better day tomorow,one day at a time love
I read it all and I can relate with you. What a lot you're going through and have gone through and yes it does get to us every so often, it can't not do can it?
Whilst you were initially not happy about being on the standard trial arm you should have more checks etc on the trial and I was told that was always a good,thing.
You drive 2.5 each way, what a tiring thing to do and yet you do it, you are a start and don't you forget it.
Again I can relate to the impact you think you are having on your husband. This weekend for quite bad for me and I looked at my beloved hubby and thought how sad it must be for him at the moment, it's all about me - when he comes home how am I? How are my bowels, how is my pain, how is my Ascites? Etc etc but we forget they are are lovely hubbys and they want to be with us don't they?
Is there anyone you can talk with if you feel you need a bit of extra support to talk things out loud?
Your nosebleeds alone must be taking it out of you, that must be hard to cope with without everything else going on.
At the moment the only thing I do is walk around the house every hour! Don't beat yourself up but if you are getting depressed and it's not the 'down times' we do have related to,our lives then I think you need to speak to someone , feeling down is not good.
Thank you Clare for taking the time to respond to my post, I know you are going through a bad patch. Your wise words are much appreciated. I do have lovely supportive friends who I do pour my heart out to and I do try to meet up with them as much as possible.
My husband is so supportive but I know it's really hard for him, this is not what we had planned!
I do hope you are getting the answers you need for your treatment going forward, I follow your posts closely.
Oh my goodness no wonder you are feeling down! Who wouldn't be feeling this way in your situation as it is right now. In order to stay upbeat all the time you would have to be out of touch with reality. Sometimes it is all too much - if you are in touch with yourself you will probably feel down at these times!
I think Annr5h is right - when some of the misery comes through and you get though it - it helps you to stay in touch when things are a bit better and to feel genuinely more positive.
I myself have a tendency to be stoical - carrying on as if all is OK - not letting people see I am worried or upset. In recent years I have come not realise how much this denies the people who love me the opportunity to support and take care not me, how important it is for them to do this and how hard it is for me to receive it! We all struggle on....
When you are sad and alone - remember we are here - we are with you - you do not have to be brave for us!!
Thank you for your kind words and advice. I like your point about denying those who love the chance to support us if we make out all is well - I hadn't thought of it like that before.
Hang in there Janine-your remission could be right around the corner!! Stay strong!! We are here for you! Vent to feel better as we have all been there!! Spring weather should brighten your mood a bit!
Hang in there Janine-your remission could be right around the corner!! Stay strong!! We are here for you! Vent to feel better as we have all been there!! Spring weather should brighten your mood a bit!
Xx Carol
Hi Janine. I had 6 months of Carbo/caelyx for 2nd line. Caelyx isn't the easiest drug. But it's got me a good remission. I was finding the side-effects hard to take following my 2nd dose - all food had to be blended due to severe ulcers. My onc reduced the caelyx dose. After that, I still had the same side-effects but at a manageable level. Don't know if you'd get a reduction of dose, due to the fact you're on a trial but it's worth asking. Good luck. Pauline.
Thank you for your reply, Pauline. I've not had mouth ulcers or the dreaded hand and foot syndrome so have perhaps got off lightly this first cycle. I suppose it is all to come but I take heart that doses can be reduced and a good outcome can still be achieved.
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