Will waiting mean dicing with danger ?

[IrishMollyO]

Hi to all who have been helping me since I put up a very stressful post on 18mar and a subsequent one a short time later re diagnosis of swollen peri aortic lymph nodes. I am in the process of trying to get a second opinion and change hospitals . A consultant has been suggested to me who is highly recommended. The only problem is he is away for 2weeks at a conference . As I have already been waiting almost 2 months from private appointment , followed by wait for CT scan , and 2 week wait for results , do you think anything major can go wrong in those 2 weeks ? I have to make up my mind between now and tomorrow so I would really appreciate your thoughts on this one. Thanks for listening once more . If you do reply and don't get an immediate response from me it means I have gone out for a few hours and will reply  when I return

XXX

[Hidden]

Hi Molly O, I suppose if you find it helpful to have a second opinion well go for it.  Two weeks wont make a lot of difference at least we were told that a delay in treatment doesnt affect the response to it last year in Cork.  I would be careful though and plan it thoroughly so that whoever you decide to go with will be ready to start your treatment soon after that.   Have you got a date for treatment from the first consultant if so, I would go with that but that is just me.

[IrishMollyO in reply to Hidden]

Thanks for your reply Suzuki. I appreciate your reply very much. No. I don't have a date yet as Easter Holidays took care of that. I have thought of changing hospitals for a while for various reasons. If I am to change now is the time rather than starting treatment and then changing which probably would not be possible or even wise . When i first got ill it was via A and E to nearest hospital and that is where I stayed. Thankfully i got the right treatment and went into a fairly long remission which I am grateful for.  Now having looked into my whole situation my friends and family are behind me in my move and fully understand why I need to do this . I just have a niggling fear of what a delay may do. However I also remember that with this illness they don't want to start treatments too soon either. I will just pray for guidance that I am making the right move. Thanks again. 

XXX

[kittie]

Hi MollyO , I am sorry you are going through so much at the moment I can not give you any advise except a lady I was talking to today had breast cancer in 2014 and has full private insurance and was seen quicker by going through the public hospital. She lives in Dublin ,so don't know if the larger population was a factor.I know some of the Ladies on this site will be better able to help you. Take care Kittie.

[IrishMollyO]

Hi Kittie

Thanks for reply . I have no preference for public or private and that is not the reason I am changing. I have more or less made a choice based on advice from various people. In the case of both hospitals the delay is due to holidays but the new one may have a week or more longer delay. That is really my only worry and I need to make a decision fairly fast. You are very kind to reply. Just pray I make the right decision. 

XXX

[Hidden in reply to IrishMollyO]

Hi Molly

You are in a difficult situation I truely empathise with you. I was angry with a delay in my treatment due to holidays and not enough theatre space. I had a cyst rupture which has affected my prognosis. Having said that all doctors follow gold standards of care. There is a menu they use its on the Internet... my oncologist showed it to me yesterday. So its likely that a second opinion may mirror the first one! It's really important that you trust your doctor your life is in their hands. I hope this helps. And good luck

[IrishMollyO in reply to Hidden]

Hi MARYrose

Thanks for getting back to me. It would appear everyone is on holidays right now and that is what is most frustrating. Unfortunately Cancer never takes a holiday .  I do recognise that doctors and nurses must also have holidays along with their families and so it appears my blooming Cancer shows it has very bad timing ! On the other hand the delay is giving me a chance to weigh up all the pros and cons and it now appears my original hospital has given me an appointment towards end of next week. It will give me a chance to talk to the original oncologist and put my fears to him. I have prayed a lot about this and maybe this delay is meant to be. Thanks so much for your insights . To have such knowledge and experience on tap on this site is an absolute gift. 

XXX

[thesilent1]

Hi, I'm not certain what has prompted your decision to move hospitals and its none of my business.  However you have mentioned that you had a fairly long remission following treatment from your original oncologist.  That is good, isn't it?  I only had 8 months remission before the wee blighters came back although I was managed on watch and wait for a further 18 months after that before commencing treatment.   Better the devil you know than the devil you don't!  Good luck with your decision , whichever you choose to do.

Ann x

[IrishMollyO]

Thank you Ann

I do value your reply. It is difficult to explain in a public forum without identifying doctors or hospitals and I don't want to do that. Believe me I have come back to the idea of the devil you know etc. I will now keep my appointment and hope I can clear the air about certain issues I had. It may just be to do with personalities or extra sensitivity on my part. I will keep you posted. I do feel bad about appearing ungrateful for such a long remission as I see so many women going through much worse.

I will keep everyone posted. Right now my stress levels are really high. I am so exhausted I want to cry and I have very bad pain in my lymph nodes. I guess I am feelin really really sorry for myself. Thanks again 

XXX

[Hidden]

HI Molly, I understand your exhaustion because it is a roller coaster ride.  My friend did change from one hospital to another in Dublin because of personalities clashes.  The lady she changed from is very good but a  little abrasive.  So she moved from City Centre to a hospital at the end of the Luas line.  She did this several years ago and was extremely happy with the move.  She has CLL so might often end up in A and E and not treated very well but once she made this known,the issue is now gone.  Her first hospital was a private one.    Maybe if you can clear up any issues you might be happier with the devil you do know, its a hard one isnt it?    Keep your appointment and your options open with the other consult at the same time.   It is a very stressful time with a recurrence, I know I have been there and done the sentence, 

[IrishMollyO in reply to Hidden]

Thank you Suzuki for your very helpful reply. What you said is so true. One minute though I think I know what I am doing and next I am worried that I am making a huge mistake with either decision. Then people who know the. Hospitals and doctors involved have so many different experiences and opinions that I am back to square one again. All I do know is that if I am to stay with my original team I need to sort out issues that have upset me since I completed treatment. On the plus side I have been lucky to have a long remission with them and I really am grateful to them for that . Right now I feel like I have been through a wringer and on the way back in again.

I am praying a lot and getting lots of candles lit that I will do the right thing. Tomorrow I see my GP as paracetemol are not helping with swollen lymph nodes and I need a concoction that does not upset my insides any more than they are already 

XXX

[airfemale]

Hi MollyO, you poor thing to be going thru all this.  I know exactly what you are going through as I have written to you before with the exact same thing. I started Chemo yesterday and had Gem/Carbo. When my Oncologist came to see me in my chair he discussed my results. My kidney function had started to deteriatevin one week but onlymarginally. 

[airfemale]

My computer posted before I was ready. I was going to say that my lymph node is pressing onto the tube that leaves the kidney. I believe that a week or 2 probably won't make much difference. I hope that you get the prompt attention you need. The system here in Australia seems much faster. I am lucky that I am in the private system. Please know I am thinking of you. Lots of Hugs. Sharon

[IrishMollyO]

Thanks Sharon

Here in Ireland we have a 2 tier system and because I have health insurance I have access to both. However there is meant to be no difference in access to medical attention for cancer patients . They are given priority in either system. The problem for these few weeks is the Easter holiday. I am trying to persuade myself that the delay will give me time to choose the right option. I feel that it is such an important decision that my life depends on it. Oh what I would give to go back to my carefree life in a past that seems only like a dream now. Hope you are doing well yourself Sharon. Did you have operation on lymph nodes or chemo or both ?  Thanks for your kind words

XXX

[Julie40]

Molly I went for a second opinion and changed hospitals    It saved my life.  I was in a different position than you though as It wasn't a difficult decision at the time because my prognosis was so poor therefore I had no choice but to look elsewhere.  My biggest decision back then was what hospital and  in what country I was going to go with.   I ended up making decision to go with Christies and travel from Belfast.   It's tough going at times and comes with a financial burden but it's working so I can't complain.    

It is maybe worth speaking to your existing team and trying to get reassurance you need and if not satisfied then seek an alternative. One thing I've learnt through this is that I will not just shut up and accept what they say.  It's our lives and even a glimmer of hope and positivity from our medical team makes it all easier to deal with xo

[IrishMollyO]

Dear Julie

Just getting to reply to you now as read your post just before I went out this morning.

Thank you for telling me of your experience. I realise that although we are all on the same journey that in the final analysis we have the task of making the major decisions ourselves. It has been so helpful to read other women's stories and I have read each one so carefully. In one way the Easter holiday delay has given me the time to weigh up everything . Believe me I have prayed that I will make the right choice. At the moment I have an appointment with my original oncologist to see if I can clear up any issues I have . I owe it to my team who got me through the first time to explain where I go from here . This will be next Friday so it will be an anxious week. In fact having just reread your last paragraph this is exactly what you advise. That just reinforced my decision not to be hasty . Thank you for taking the trouble to reply. It really does clarify things in my mind. I have no doubt though that over the next week I will probably have a few sleepless nights revisiting this and agonising over my decision. Bless you !

XXX

[Julie40 in reply to IrishMollyO]

It will be a tough week for you but I think it will have given you the necessary time to think about what you really need and want from your medical team.  Sometimes we can make hasty decisions but thankfully circumstances aren't allowing you to do that as you have to wait for a week.  I would say that is your prayers being answered exactly in the way you need them to be. 

You need to have plan a and b sorted so that if you make the decision to move then you're ready and can move swiftly.  I hope you can get the reassurance you need from your existing team but get that plan b ready to execute if not.   You need to keep yourself very busy so that this week flies by.  Keep praying and stay positive.  Hugs xo

[IrishMollyO]

Dear Julie

It is only 7.25 am as I write this. I had very little sleep and woke up too early. Reading your reply has calmed down the terror of the night. Last night I cried in my room as I wrote my journal for the day. I am on the last few pages of this very large journal and I asked in my last few lines if coming to the end of this journal was symbolic of coming to the end of my life. I know that sounds so dramatic but it is where my head is at right now. Also if I could message privately the women including yourself  who have been following my case it would help so much.However I have never known how to do that even though a few women like Suzuki have offered to continue talking privately . I have only been able to write so much on the public forum and it's not the complete picture of my reasons for talking about second opinions. 

As you say the past 2 weeks have been a blessing in some way. It has given me the breathing space to take stock of everything. As well as being a blessing it has also been a curse as my thoughts have gone into overdrive. I have also felt hurt by a few friends who have not got in touch even though they now know that I must be going through the horrors. I will never understand that. Thank God for a brilliant big brother who has been a rock through all this.

Anyway Julie just seeing your reply to me early this morning has given me that lift I need for the day. I will try to replace my negative thoughts with positive ones . I am now going to put my Ipad away and try to get another 2 hours sleep thanks to you.

XXX

[Julie40 in reply to IrishMollyO]

Molly I don't always check this because I have to log in but my email address is [e-mail].   Please feel free to mail me at any time as I pick them up on my phone rather than having to log on.  

It's hard not to let our minds wander.  I find myself either planning holidays for next year or events and next day I'm back to making notes for my funeral !  The still of the night can be our worst time.  Mine is definitely after midnight ! Maybe I'm like Cinderella 😀     

I'm no longer surprised by family and friends reaction.  Some step up and some step down. It can really hurt but I have taken be positive out of it and instead of spreading myself so thin trying to please I can be selective about who I want to spend my precious time with.    I've been badly let down by my own mum and believe me that took a while to accept.  My kids hurt too because of it but I've chose to let go of the hurt and not let it drag me down.  We still speak and that's enough for Me not to have to live with regrets.  

I think that once you get to sit down and properly assess your treatment you will settle down.  If you're not content then you have to move on and find another Oncologist because this is not good for you. It's tough enough going at the best of times.  

It is time to buy a new journal ! Get another large one for all the notes you are going to make in the future.

Hugs xo

[IrishMollyO in reply to Julie40]

Sorry Julie but first post flew away from me ! I was just saying that I was glad I was not the only one with some totally thoughtless friends. One called me a month ago from the U.S. to arrange a series of reunions while she was visiting here. I said great I will be there to celebrate at 2 of them. Then of course my world was turned upside down on 18mar. I texted to tell my story then and that I would possibly  only make one of them . No reply and I then I was upset to see photos up on FB with still no communication. Then call this morning as I explain that this week is stressful time for me . Now I find myself agreeing to meet on the same day I meet the oncologist . I must be mad but I am very bad at saying no. However I did get to ask why nobody bothered to ring to find out if I was dead or alive ! 

I will start my new journal tonight. I will have a separate notebook for the hospital as my journal is just recording the rest of my day and my thoughts. Maybe someone can turn it into the story of my life sometime.  It may be too boring though ! Thanks again Julie . I will keep you posted. Tomorrow I plan to put up a post just asking for advice on questions to ask . Take care 

XXX

[Julie40 in reply to IrishMollyO]

I have a "cancer" book. I take it to all my appointments.  It's a small slightly smaller than a5 flowery notebook and I record everything in that.  It means I don't have to look at it in between appointments.  All my other stuff is separate.  Hopefully one day I can burn the book lol 

People can be so self centred but let them crack on. You won't change them and even though you can say no you're being nice and thoughtful so don't change that about yourself. Sometimes it is easier to sleep better when our own conscience is clear despite how others can behave.   

Will have a look at your post tomorrow and see if I can add anything.  There are a few amazing women on here that will guide you. Nite xo

[IrishMollyO]

Thanks Julie

I have calmed down a bit since that very desperate early morning post and I so much appreciate you giving me your email address. I will only use it in emergencies ! I see niw I am not the only one with 

[Julie40 in reply to IrishMollyO]

There is no problem use it anytime.   I get my scan results tomorrow so nerves wrecked !  I'm in a hotel in Manchester with Steve snoring beside me so can't even get up and go downstairs ! It's going to be a long night.   Think I'm going to try and read for a while xo

[IrishMollyO in reply to Julie40]

I will be thinking of you and praying for you at half nine this morning Julie. I will also light some candles. My prayer will be that your results will be good and that there won't be anything you can't handle. I have been awake since 6 with mind on overdrive preparing questions I must ask my oncologist tomorrow . It would seem that you and I are facing our demons the same week. I want to put up a post later asking for help in preparing for those questions  from the experience of women who have been there, done that . I know you will be busy concentrating on your own appointment today. In any case you have already been so very helpful to me already. Let me know how you get on. Take care and God bless you. 

XXX

[Julie40]

Thank you Molly.   Good luck for your appointment.  Please keep us posted xo

[IrishMollyO in reply to Julie40]

Thanks Julie. It's half seven thu morning and I am about to get ready . Not looking forward to it. This man eats people for breakfast ! I lit a candle for you yesterday . I hope your own results are good. Take care

XXX

[IrishMollyO]

Hi Julie

I have been reading your post about your results and the delay in your trial. I know the reduction is not as great as you hope but it is still a step in the right direction. I don't blame you for being annoyed at the delay. Annual leave should never affect the care of vulnerable patients. 

I finally had a meeting with my Oncologist and I was not looking forward to it. In fact I was quite terrified but he turned out to be quite friendly and not as dogmatic as I expected him to be. He did say my lymph nodes were not very swollen and the only way to analyse them now was to do a biopsy in an area that is tricky to get at. He is not advising chemo at this time so it will be watch and wait again. I may still get a second opinion so he said that is no problem. I still have unexplained aches and pains plus extreme fatigue. He ordered more blood tests including CA125 to check any other source .

Thanks Julie for helping me get by over the past while . I was really losing it since the 18th Mar. I wish I could give you as much reassurance as you have given me. I will keep you in my prayers.

XXX

[Maus123]

Glad you've received a useful update Molly. 

I'm in a bit of a similar position in that I'm on watch & wait for a new deposit on my bowels and it's tough trying to determine when is the right time to act and when is it better not to act. Will the waiting possibly compromise the final outcome e.g. impact the operability (is that a word?) of the tumour etc. But for me the biggest deal is to trust my medical team and also accept that they may have MRI scanners but no crystal ball either, so there isn't any level of absolute certainty in this business. 

You'll want to have a good level of trust with your medical team.. even if it means switching hospitals (although it sounds like your original consultant may be ok now?). Less stress can only be good for us, surely. A second opinion sounds like a good idea as well, especially now that you've got some time while on watch & wait. The difficulty ensues when that opinion differs from the original guidance you received and you have to make a decision but it's good in a way. In the end the choice of treatment is yours.

Hope they gave you good prescription pain killers at least when you went to the hospital and the aches are more bearable now.

Be well.

[IrishMollyO]

Hi Maus

My Thanks for your very detailed reply . I do intend to put up a general post to everyone saying thanks for encouragement . In answer to the op question he asked me if I had asked the gynae/surgeon which I had and my answer from that quarter was that the extent of my Cancer meant it would have been too severe. As with many PPC patients there are no large solid tumours. Just lots of fluid and Cancer cells dotted around the pelvic cavity. That is what is so scary about it. At least with OC there is a tumour that can be seen and removed . For me it would sound like you would have to remove lots of organs or pieces of them at least . It might just solve the problem of my spare tyres but maybe little else ! 

I do intend to get second opinion and he is happy to facilitate that. Meanwhile I am basking in the relief of my latest reprieve and I have no doubt I will fall down from the clouds any minute now. Just hope I will get back up again ! 

XXX