Numb & gutted 😡

[jools53]

Holiday wedding all cancelled week today! 57mm nodule in bowel not happy for me to fly! Chemo ASAP cisplatin! Need your help sisters! So scared and trying so hard not to crack 😥

[Manchesterlady]

So very sorry to hear this , can’t give you any advise , I’m sure more experienced ladies will be along soon .

Sending hugs and love

Sheila xxxx

[jools53 in reply to Manchesterlady]

Thanks Sheila x

[MostlyHarmless]

I'm sorry, that is really upsetting for you. Hang on in there. See how the chemo goes, then think about reorganising. Where were you going on holiday and were you planning on getting married there?

[jools53 in reply to MostlyHarmless]

Yes married in Barbados & honeymoon 😪

[harpist_UK]

So sorry to hear this bad news for you. Cisplatin is do-able and can kick ass. It knocked a third off my tumours. Make sure you have good anti-sickness. All the very best xx

[jools53 in reply to harpist_UK]

Thank you 😘

[Caroles1]

Hi love,

I’m so sorry, I can’t help regarding Cisplatin, but ,the fear, we have all been there and it is always helped by a plan in place. Cancelling realistically is the right thing, to get yourself sorted so you feel better and enjoy your wedding, practically, you should get all your money back because of the circumstances.

My daughter had to re arrange her abroad wedding because of me, I felt very guilty, but by god, when I felt better, we all went and had an amazing time.

Our thoughts are with you, but it will come right in the end, just get focused, you will get it done,

Love,

Carole xx

[jools53 in reply to Caroles1]

😘 thank you

[Neona]

Thinking of you but don’t have any knowledge of cisplatin.

[Maxjor]

I am so sorry you have to go through this and so sorry about the wedding plan delay. No experience with Cisplatin but I DO hear it is very effective. Maybe delaying the wedding and knowing your treatment worked will make it all that much more special. And yes, every dime should be refunded based on the circumstances. Wishing you luck oxoxox

[jools53 in reply to Maxjor]

😘 x

[Artgreen]

I’m so sorry to hear this and I am so sorry you’re going through this at such a stressful time. But the wedding can wait though your health can’t.

Even if it can’t be the dream place when it’s rearranged the important thing is it is the right person who supports your real needs that counts. Love will find a way, it always does.

Good luck and may you get it all sorted very soon

Alex x

[delia2]

I am so sorry for you to have to postpone your wedding in Barbados. You must be crushed but have obviously made the decision to put your health first. I haven’t had Cisplatin but it’s a heavy hitter so take your anti-nausea meds! I hope you will have your destination wedding afterward.

[jools53]

Thank you all so much! 🙏🙏🙏

[Lyndy]

Oh buggeration! OC does not respect our plans.... but the chemo will jump on this disease with any luck and hopefully you will be able to enact your plans afterwards. xx

[jools53 in reply to Lyndy]

Thanks, feeling better just wish I could switch off! Thanking all my ladies for replying 😘😘

[Welshandproud]

Sorry I can't help with Cisplatin but just wanted to send you my best wishes. You will have your wedding and it will be amazing wherever and whenever it takes place xxx

[Maus123]

That's horrid and it's no wonder you're distraught right now. Maybe try your best to take the next weeks in small bites and single steps? Any distraction could work.

Who knows.. you could even elope in secret, to the nearest wedding office, and just wait with the big party/holiday until you get a break in treatment.

We married for 88.50 USD to start with, at a registration office far away from family and friends. That did not keep us from from celebrating with them later though.

Best of luck with Cisplatin. xx. Maus

[julia8163]

I have just finished cisplatin, I was able to function as normal during the day but come the evening time wrecked. The cisplatin is strong and I did not lose my hair. Hope this is of help to you . Best of luck. Julia

[jools53 in reply to julia8163]

Thanks Julia ! Have you had hearing problems or anything! I was told sickness is bad but we are all different and not all react the same, how many more you scheduled for xx

[tara108]

Hi Jools. So, so sorry to hear what has happened. Must be aweful for you and so disappointing. Apart from anything else, the timing sucks! Sending lots of hugs and hoping the cisplatin works for you. Love from Australia

[jools53 in reply to tara108]

😘thank you

[julia8163]

Hi , I was never sick but I would have ringing in the ears but it would go and come. When it would start I found it hard to hear if there was back round noise. But y will be very tired in the evenings and for the three days after y come off steroids. I was able to do my walking, yoga and I took up line dancing while on the treatment. Be positive. Julia

[Katmal-UK]

Hi Jools So sorry you have had to postpone your wedding etc! BummerTo say the least! I have had cisplatin as I became allergic to carbo. I wont lie its tougher than carbo but totally doable. Make sure you get the correct anti sickness med as you dont have to put up with the nausea which can be bad but manageble. I found the fatigue worse than on carbo but be kind to youself and rest as much as you can. On the plus side it knocked my second recurrence into NED after three doses. Oh and your hair may thin slightly but you dont lose it. I was back at work both times after 6 weeks. I hope all works well for you. Kathy xx

[jools53 in reply to Katmal-UK]

Thanks kat, really hit me hard with the passing of Suzanne! Just gone into this dress mode not me st all always the kick it’s ass girl, it’s such a comfort us all bd hear in ties of our Despair, so concerned about my bowel nodules now 😘😘

[Hidden]

What rotten luck. This disease plays havoc with all our plans. I found Cisplatin less tiring than carbo - maybe because I've just got used to chemo tiredness? Didn't have a problem with nausea, but did have with the runs. So stock up on Loperamide. Good luck

[jools53 in reply to Hidden]

Really, make a nice change from constipation 😂 did you have a good result on it xxthanks mac

[Iwillbeatit]

So sorry you have had to cancel your wedding and honeymoon. Have no experience of this drug. But positive thinking being sent to you. Fight it girl so you can rearrange. Big e hugs.

[jools53 in reply to Iwillbeatit]

😘😘

[January-2016-UK]

I’ve got one more cycle of Cisplatin to go and it is doable. Depending upon your frequency (mine is once a week for two weeks with one week off) you may be able to get away during treatment if your oncologist agrees and your insurance allows. If so, I’d recommend going relatively early in your treatment cycle, once you know your side effects are manageable, as tiredness does worsen.

Good luck and Barbados will be waiting for you!

[jools53 in reply to January-2016-UK]

Every three weeks six booked? 🙏 have you any bowel issues 😘😘

[January-2016-UK in reply to jools53]

Loose motions until two weeks ago when I had tremendous diarrhoea. An infection / contamination rather than the chemo itself it is thought. Still not quite right.

[ShropshireJo]

Such a disappointment for you to have to postpone your wedding as I imagine it must have taken hours of organisation. Still at least you’ll have done all the hard work when it comes to the new date.You’ve had some good advice which I hope will go some way to reassuring you. I’ve had cisplatin twice. First half way through second line treatment when I became allergic to carboplatin then all the way through third line. As others have said, it is tough but manageable. I was given an extra anti nausea drug called Emend which really helped. Constipation was an issue so arm yourself with laxido or whatever else suits you. Listen to your body and rest as much as you need. Stay well hydrated. There is light at the end of the tunnel. All the best. Jo 🌺🌼🌸🌻🌹

[jools53 in reply to ShropshireJo]

It’s the constipation that worries me as I have cancer on the sigmoid colon as well , how you doing with results with it 😘😘

[ShropshireJo]

I have a tumour which I understand is near not on the sigmoid colons so constipation was always an issue. I kept a diary detailing meds taken, nausea levels and tiredness, bowel movements, food intake etc which helped me to see a pattern which in turn helped to manage the laxatives. I had partial reduction in larger tumours and the disappearance of the smaller ones. Now on Niraparib for maintenance it very early days!

[jools53 in reply to ShropshireJo]

Looking positive thanks, when finished that’s my next course niraparib! Also seeing plasma jet consultant Thursday for opinion 🙏 😘😘

[Solange]

So sad for you. Sending love and a big hug. Hope the chemo will do the trick and you can re schedule soon after. Solange 😊

[jools53 in reply to Solange]

Thanks 😘😘

[Alifit]

Hi, I’ve not had Cisplatin so can’t advise you on that. I hope it’s not too tough for you. It’s such a monstrous thing when the cancer jumps in the path of real life, but if we stop making plans the the bugger has beaten us.

Lots of love, Ali x

[Hopefulgal1]

Darling Jools - I know ( I really know...) how disappointing this is. It breaks my heart to hear yet another wonderful plan go to bits - but you know you will do it and you will try cisplatin ( I’m due to start to try cisplatin with gemzar on Monday after a dodgy start!) and you will manage that wedding soon. That is a weeny nodule and sure the chemo will zap it! Please do not dispair - although it is so so hard not to crumble at times like this. You deserve a good howl and then... we pick ourselves up again.

Sending you virtual hugs and a shoulder to howl deeply on. And wish you so much luck on this miserable chemo - we can compare notes!! Xxxxx ps we ended up marrying on the side of a mountain where we were living in the end : and managed to arrange it all in 9 days! It was an incredible wedding to give you hope.. so there you are - you CAN do this. And I’m here for any advice on “ wedding in a hurry!” When you are back and up for it. Xxxx

[jools53 in reply to Hopefulgal1]

Omg ! Now ism in tears! Good ones, you must be reading my thoughts , looking at a quick wedding befor chemo lol! Where did u get married? 😘😘

[Hopefulgal1 in reply to jools53]

We were living in Cape Town (!) but it is still possible to do a quick wedding here. Note though... realized we had forgotten the rings until about 4 days before! Luckily a jeweler v kindly obliged. We also had a very small amount of guests which worked so well as there can be a while to-do with families... 😄 Now don’t worry I think a good cry again is right for you and sounds like you’re already picking yourself up! Good on you..😘💕

[ZenaJ]

Sorry to hear your news but your health must always come first. I had to cancel a really big expensive holiday (not as important as a wedding, I know) but since my treatment I've been to America, Czech republic, Hungary, Austria, Germany, the Belgium Grand Prix a cruise and have booked for Poland and India for this year. (Hope this doesn't sound like I'm showing off, it's just supposed to let you see what you can still do, even with cancer)

When you get through your treatment you'll have so much to look forward to. Just take one step at a time.

Wishing you all the very best, Zena xx

[jools53]

Thanks zena that’s so reassuring 😘😘

[janmark43]

I had six sessions of cisplatin and etoposide in 2016 and tumour was reduced significantly. Subsequent operation and still going. Not much fun, felt ill all time but survived. Ondasetron anti emetic very successful but do take lactose or similar at same time. We went to Barbados every year for about 20 years and loved it. Where was your wedding planned for? Good luck and hope treatment goes well. Janet

[jools53 in reply to janmark43]

On a cruise round the Caribbean as you are married at see xx

[jools53 in reply to jools53]

Did the avastin stop for you too?

[lorraine71-Australia]

Hi My Love , Sorry you had to miss your lovely plans but good your team is starting tratment and as the other ladies have said once you start Cisplatin ,then you can rearrange that welcomed wedding, don't forget to post a wedding photo we will will be waiting for one ,Chine up and take care Lorraine xx💙💙

[jools53]

Thanks Lorraine coming to terms with it , just feel so low xx

[Eleni]

Of course you're scared.....and frustrated and angry and deeply upset I'm sure. Such a horrible thing to be going through. However, your health must come first and you can be planning lots of lovely things for when you're well enough to have that dream wedding and honeymoon. I've no experience of Cisplatin myself but have heard that anti nausea meds are important. i recommend everything ginger!! Stay strong and know that you're being thought of and make sure that fiance of yours keeps giving you plenty of hugs....xx

[Melody6]

So sorry to read your news - I don’t have any advice but thinking of you and wishing u as easy a journey as possible with Cisplatin...it’s just a delay - you will have your lovely wedding and honeymoon in Barbados after treatment - stay strong 💪. Much love, Mel xx