After being so full of beans and positive, I’m having a blip.
Saw my new consultant today. He’s lovely. Very informative and softly spoken.
He told me though that my cancer is in my lymph nodes in my abdomen and a lymph node between shoulder and neck as well as it being on the peritoneum near the liver and bowel. The other doctor said that bit in the neck was probably an infection. He also didn’t even mention lymph node involvement.
I’m going back on carbo/taxol in 2-3 weeks. Might have surgery afterwards. I’m worried about work now. I hope I can work while on chemo but it wore me out before .
Bit fed up but I’ll perk up again.
Hoping all you lovely ladies are doing ok.
Hugs xxxxx
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Suzanne333
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I know what it's like for the bubble of positivity to be burst. So much that I wanted to say, I know that you will regroup and glad you know that too. Take care x
Suzanne, you sharing these blips are just as important as being positive... You do an AWESOME job of being positive. We love you for everything you are. I found a direct correlation between how quickly I rebounded days after chemo treatment to how much water I was consuming the day of chemo as well as those immediate days following. I pray your downtime will be minimal. I am sure your employer will understand and knows you always give 100% of yourself when you are there.
Keep your chin up Suzanne. Remember. Attitude and positivity will go a long way to keeping the beast at bay. You and your immune system are a team. Don't waste time and energy worrying. You will get through this!!! We are all here for you! XxCarol
The thing that I think would get me is being told different things by different doctors.....which one is giving you the correct information? This I think causes so much more anxiety.
You will bounce back, you know you will, and we are right behind you cheering you on.
You are so right. This oncologist told me that the lit up area in my shoulder/neck was a lymph node with cancer. The other doctor said it might be an infection and he wasn’t concerned. Different chemos were always discussed. Timing of chemo varied with different Doctors. It gets so confusing and it’s so conflicting.
I recurred in my retroperitoneal lymph nodes in October 2016 and also now have one or two in the neck area. I was on a trial for six months which stopped working in May and since then I've had no treatment. Will be starting weekly taxol in two weeks. I seem to remember that Lily-Anne has had one in her neck for years so although lymph node disease sounds so worrying, perhaps with Ovarian it is less so than other cancers. I read that somewhere once, but I don't know where.....
As regards working through Carbo/Taxol, I'm in the fortunate position of being retired so didn't even have to try. However, I had a lot I needed to do with the garden, allotment, bees, chickens and a dog. Horse-riding and Pilates. I did do all the things I wanted but without the same vigour and with rests between. Some days even turning pages of a book seemed onerous, but I had audio books. Thinking back, I don't think I could have worked but it might be possible if you're allowed to do very reduced hours and not turn up at all other days. You need to discuss this carefully with HR and your union if you are a member, as sometimes your entitlement is affected if you do any work at all rather than none. Such silly employment rules sometimes.
I work from home, but I take my hat off to you for managing to go out to work through this horrible process. I do think positive thinking is important, and you seem to have that in spades.
Suzanne, so sorry to read this. Sending hugs. I applaud your desire to keep working, albeit can't remember, do you work with children? Just need to be careful re your immune system. Had a friend who worked in a school & it was a bit no-no cos of all the bugs going round.
Yes I work with young adults. College age. I had 6 months off before. They paid me full money. I don’t think I’d get full pay again. My other half was made redundant so I feel I need to work. I know what you mean about the germs though. I’d have to wear a mask.
I think reading all 8 books in the Outlander series while I was recovering from chemo has given me sciatica. I think I should have moved about a bit more, so my advice is keep active!
I like reading but think I’ll probably have a bit of a walk too. If I have the energy. It might be better this time. I want to carry on working. Lol. Xxxx
Hectoria, I LOVE those books! I can't wait for the 9th book to come out. It's my chemo plan to re-read them this time around. Have you seen the TV series on Amazon? The actor who plays Jamie Fraser is very delicious
Don't get me wrong, I love the books too but she could do with a wee edit now and then. Yes, I have been watching the rather gorgeous Jamie Fraser. My husband has taken to calling me Mistress in a low growl, and I respond with ooh Maister! He thinks his best man was the spitting image of the actor who plays him when he was younger, but I can't see it myself. ( otherwise I might have run off with him, just kidding.) my husband is a fine figure of a man who looks splendid in a kilt
I know what you mean, but having read interviews with the author, she deliberately puts extra detail in the chapters narrated by Claire, because Claire is so detail-focussed. I never noticed that until I read about it. That being said, I speed-read the chapters about the less interesting characters, because it can go off on a bit of a tangent, and I really only am interested in the sex scenes
I’ve read all the outlander books too, the second time when having surgery and chemo. I’m not watching it on amazon though it’ll spoil the pictures in my mind of Jamie, Claire and Brianna and their houses especially the one in the mountains. They’re huge books aren’t they! I read them second time on my kindle as far more portable. Not read the lord John gray ones though. Hope your sciatica gets better soon ❤️Xx Jane
Hey Suzanne, sorry for taking over your post I had never heard of the books and only started them after watching the first few episodes when it was aired by Channel 4. I think it's really well done and I love all the Scottish historical detail which seems very accurate to me.
I am a bit obsessive when it comes to books. I started watching the TV show, so then bought all the books one after the other on Kindle. The books are very long, incredibly boring in places and stuffed to the gunwales with sex. In the end I had to skip all the sex scenes as I am no prude, but they were just so bloody tedious! Be warned. S xx
I like the idea of an Ovacome book group! My regular one has been going for about 12 years now - we seem to eat and drink a lot, go on holiday together and talk about books for all of about 10 minutes!!
Hi Suzanne---I know you will feel better mentally after it sinks in but its good to share with us all here/vent. My doctor never seemed to think the lymph nodes would be a problem after chemo/surgery and I did get to NED. I also never heard of a lymph node affected in the neck/shoulder. CT scans don't go "up there" so how did they find that one???
When I was going through chemo, I had treatment on Friday and took Mondays off of work. The three day work week was so much better and I had three days to get over the hardest part. Maybe something like that would work for you too.
Wishing you a relaxing time, less stress time, until chemo and then hopefully it won't be like it was the last time. oxoxo Judy
I'm sorry you've had a mixed appointment. I don't have much more to add to what the other ladies have already said, but as you know, you and I are in roughly the same position at the moment.
I know you'll get your mojo back, but don't give yourself a hard time for feeling down.
Hi Suzanne,Glad you have found a consultant you feel comfortable with that is important,he sounds like he will keep you well informed. As for the blip I know you will push that aside and once on treatment will be back to your positive self...Take care Lorraine xx🎉🎉
I feel your blip. Very simiar to you. Last chemo August 2016 and have known since May its back. I was okay with that but this week my chemo has been ordered and the reality has knocked me. I dont know where mine is and have a scan tomorrow. Last scan was clear but rising CA. Not being able to work is a horrible thought and makes you feel less a person but you need to put yourself first if you are not well. My oncologist wouldn't let me work with children because of tbe immune system. Easier said than done though isnt it. We will bounce back because negativity is not an option. Take care xx
Hi Tracey. Do you know what chemo they are giving you this time? Presumably as you went over six months before recurring, you are classed as platinum sensitive. Are you having Carbo again mixed with something else?
Well im in the process of transferring to Royal Marsden from Southend as i moved and only 10 miles away but 55 from Southend. At Southend on Wednesday the oncologist had ordered me Gem to start. It will be interesting to see if that is what i get. Just hoping now for speedy referral and appointment.
Yes you’re similar to me. My CA125 was rising. CT scan was clear. PET scan showed recurrence on peritoneum investment loving lymph nodes. One lymph node in shoulder too. How the hell did the cancer get there?
I hope you get on ok. The peaks and troughs of this disease are unbelievable.
We cant keep smiling and upbeat all the time. You are allowed an off day or two. It might be good for you to speak with a Cancer Support Counsellor, your hospital should be able to put you in the right direction. I know what you mean about working through carbo taxol, well I couldnt and didnt but I was paid by my employers for six months while on treatment. It can be hard going so if at all possible I would advise you to go sick.
I went sick last year. I don’t know if I can go sick again.
I want to try and work if I can.
I did get whacked out before with carbo and taxol.
Xxxxx
Hopefully you can work something out with your hr even reduce no of days, I had no option as I was open to infection handling money and meeting members of the public
I'm sorry to hear about your blip. I'm sending you my love and hope you have a reasonable time on the concoction. Sometimes we owe it to ourselves to take it easy for a bit - easier said than done, I know.
Bugger! Isn’t it frustrating when you get differing opinions from the medics. It’s difficult to know which one to believe sometimes, I’ve always worked with the principal of lets tackle the worst scenario and the rest will follow. I hope the carbo/ taxol is extra kind to you this time and you don’t get too many side effects.
Simply wigs have got a huge sale on at the moment, I got an e mail yesterday from them and there are some wigs reduced from over £100 to under £50 so may be worth a look.
I hope you are able to carry on working if it doesn’t tire you out too much and watch out for infection. I couldn’t work as I was patient facing and came into contact with some horrors so it was decided it was in my best interest that I shouldn’t work until 3 months after chemo finished.
Keep as well as you possibly can, try to keep your wonderful attitude going and take lots of care of you lovely lady ❤️Xx Jane
Thank you for your message. It is very frustrating when we get so many differing views. I think I’ve been told everything then wham, they tell you something you neither knew nor were expecting.
I will try and work but I work in a college with students who are always sniffing and coughing lol.
I’ve got another prescription for a wig. Th last one I got was £230 but with the prescription I got it for £67. I think this time I’ll get a shoulder length one. Last one was long.
Hi Suzanne, so sorry to hear your news, but don't let these bast...d cancer cells beat you. As you've said already once you get your head round new information you'll fight back. Re wigs when I had my recurrence I thought stuff it, if I'm going to have to wear wig I'm gonny be a big blond diva. Prayers & hugs.
Hi Suzanne So sorry to hear about your blip. We seem to get our fair share of them with this nasty disease! Just want you to know I'm thinking about you. You can do this, and I know you will get your positive spirit back again.
Hi Suzanne - I really liked your earlier post from your trip out with your students I work in a special needs school too - I'm behind the scenes doing admin but it's a very special place and I work with lovely people so I can understand why you like your job.
Your blip is understandable especially given that you'll be back on chemo soon. I'm NED after first line (I think I'm just a few month's behind you) and most of the time I'm upbeat and managing to enjoy life but sometimes I just crash....even without the prospect of more chemo.
I hope you can find your way out of your blip so that you can have a good couple of weeks before you start treatment again.
Thank you for your lovely message. It’s so rewarding working with students with learning disabilities. I love my job. It’s tewarding. I feel I’m helping them.
Cancer really sucks. I guess I have to look at it thst it’s always there but now and then it will lay dormant.
Hi Suzanne - I'm doing OK thanks. I have managed to be positive since treatment and am trying to enjoy life. I had a major wobble this week after seeing the surgeons. I've had a really tiring month and being back in the hospital made it all feel current again.
Also, I came away feeling a bit like it's a when rather than if it recurs so you're right, it's always there and we have to learn to live with it xxx
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