No ranting today as I now have my first chemo appointment for next Wednesday the 25th, preceded by my pre-chemo blood test and general check this Friday and the long-winded kidney function blood test on the 24th.
This last jobbie is a bit of a drag as it involves taking three separate bloods with an hour and a half between each one - so a lot of hanging around. But I am NOT complaining. I am pleased that suddenly all the treatments are lining up ready to kick the FC where it hurts.
You must all now have heard that Avastin is to be widely available for OC. Very excellent news and I hope many of you will be able to have it. It's going to be interesting to compare stories and results. If you missed it there was a discussion about it on Tuesday Woman's Hour which you can hear on BBC iplayer. Thanks to my sister for letting me know about it.
On the down side I finally told my kids (38, 31 and 27) on Sunday about the FC returning. This is the worst thing I think - having to tell those you love to bits that their mother has been daft enough to get this wretched illness yet again. As always they've been so brave and supportive, and my younger daughter who still lives at home has arranged time off work to come to the first chemo with me. But she had a big wobble on Monday evening when the reality suddenly hit her and she sobbed in my arms. We sat on the sofa having a good cry together but I finally managed to make her laugh, telling her about the BBFC Rant Club!
Love to you all
Patsy x
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PatsyH
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It's wonderful that you and your daughter can cry together about it. So many family members feel they have to reign in their fears and saddness - and it's so much more intimate and 'real' to express it together. You are lucky in that respect - lets hope, in others too. We all need luck!
All the very best with the chemo and kicking the FC. Let's hope that you and your daughter will look back on the tears with tears of relief and happiness soon
Patsy, Great news on the chemo - good luck. It is wonderful to have the support of your kids, I wish I did, but I live in Spain and they live in the UK. Although if my son is over here and I have chemo he does drive me, which is wonderful.
I am copying and pasting something I put on another post re Avastin. There is so much talk about it at the moment and I have had 2 years and 10 months experience with this wonderful drug. Forgive me ladies if any of you are reading the next bit for a 2nd time but I think some of you know my feelings towards this drug.
I can't comment on what is happening in the UK with Avastin, I have heard it has become available but people are having difficulty getting the drug.
I am an ex pat living in Spain and exactly 3 years ago, after many different lines of chemotherapy, my cancer was spreading (I was originally diagnosed stage 111c in Oct 2006). My Oncologist here sent me to the Royal Marsden in London for me to talk to someone in 'my mother tongue'. He also has a working relationship with Prof Kaye there. I was more or less told, go home arrange your funeral, you have months to live.
My Oncologist here however thought better and immediately put me on Avastin and a daily pill Cyclophosmide. My secondary tumours in the lungs and lymph nodes were put into remission and my tumours near the liver, right kidney and abdomen have shrunk by well over 50%. Unfortunately due to a rising CA125, but still no evidence of tumour regrowth my Oncologist decided in July of last year to put me on Avastin and Carboplatin.
Although another scan in Sept 2011 show a minute tumour shrinkage my CA 125 was going up slowly. The thoughts are that cancer cells are trying to settle in the abdomen but the chemo isn't letting them. At the end of Nov last year I was put on Cisplatin and Gemcitibane, a deadly treatment, but once my CA 125 goes down I hope to be back on my liquid gold or my Avastin as I call it.
I do so wish I could present myself to these so called people who make these statistics, as living proof the drug does work. It doesn't work for everyone, I know ladies who it didn't work for and others are not suitable candidates for the drug. For me it has been my life saver.
I will add that I was on drug trial, but not run by the drug company but my own Oncologist with his team. He is a research Oncologist and ran the trials out of 3 centres - Malaga, Madrid and Salamanca. However I didn't quite get the monitoring you do in the UK, there was a lot of self monitoring, but this is how things go in Spain. No support, you get your drugs but for the rest of it you are one your own.
To all you ladies out there, I wish you all the luck in the World. This to me is an amazing drug, without the horrible side effects of chemotherapy, I hope you will be able to benefit from it.
One comment I forgot to mention, I have been quite plainly told my cancer is incurable, I will be on maintenance chemotherapy for the rest of my life. So I sit here and hope that more drugs like Avastin, or PARP inhibitors as they are called will soon be available to all of us.
My motto is - whilst I have cancer, cancer does not have me.
I was going to contact you to ask about your Avastin experience, but you've beaten me to it! And thank you so much for doing so. I am really hoping that my experience with it will be as good as yours has been and that it buys me lots more time. I was diagnosed in 2005, also with stage 3c, but I have been lucky in that it's taken nearly seven years to get much more aggressive. This time I am getting pain from it whereas in the past I had not so much as a twinge, so it was easier to ignore it and even forget I have cancer.
Your doctors in Spain sound terrific and you have them to thank for not writing you off as the Royal Marsden appeared to do.. But it's not pleasant knowing those vile little cancer cells are now lurking around looking for somewhere to take up residence so I pray that a way can be found to stop the blighters achieving their goal.
Wishing you all the very best and I love your motto
I can only imagine how hard it was for you to tell your children the news... But I am so please you are able to talk to them and I know they will support you throughout your treatment.. you are indeed blessed to have a loving family around you.
I wish I could be more like you but find it so hard to talk to those closest to me., and its not that I am one to 'reign in my fears and sadness' just find it easier to keep it to myself than talk about it, which I know is not a good thing, just dont want to admit its really happening I guess! So I come on here and rant and gain strength from seeing other peoples posts such as yours, before surgery and then again now after with positive attitude, as my surgery is next week.. so thank you for sharing.
Maybe we should change the name of the group to the BBFC Rant Club!!
There's no right or wrong way to deal with cancer so please don't think you should be talking to everyone about it if you don't want to. It's good you're part of the community here.
Good luck with your surgery next week. You must be feeling pretty nervous about it. Let's hope the news about Avastin will have a positive effect for many of us. I particularly hope that the surgery and new drug treatments work for you. xx Annie
My heart goes out to you and you every right to feel so angry and sad. But I'm not brave at all and keep my worst fears to myself as I dont want my family to be even more worried, especially the kids (big ones!) who have careers to think about and their own futures to work towards. I feel absolutely terrible that my FC has returned just at the time when my older daughter is looking forward so joyously to her wedding next year and all the planning it involves. The last thing I want is for her happiness to be marred by my situation. I think we all put on a brave face much of the time, and make out we feel confident when the fact is we jolly/effing well dont!
NB In the BBFC Rant Club expletives in very feeble disguise are allowed - nay, positively encouraged. As is sticking pins into a drawing of a cancer cell (thanks for that one Eleni). Any more FC kicking ideas very welcome!
I will be thinking of you and hoping your operation goes well next week. Please let us know how you get on.
Jules & Patsy, I think it is very hard to talk to ones children, we don't want to worry them, but at the same time they have the right to know what is going on.
My daughter works within the pharmaceutical industry dealing with a drug for terminally ill people with a heart condition, so she is well used to seeing and dealing with terminally ill people. She is quite, I would say almost hard, with the dealing of my cancer, although my son says this is her way of dealing with it. He on the other hand is very sensitive and whilst doesn't always understand the goings on, big sis is there to support him.
I was very ill before going on Avastin. Here in Spain they were seriously worried about me pulling through. It was that moment in time the kids made me promise to always tell them everything about what is going on. No lies, no skimming over the surface they wanted truth and I have done that ever since. Of course they don't know on a day to day basis just how ill I am sometimes, although at Xmas again they did see it when I was so ill and had to go into hospital for 3 nights.
Hubby takes the brunt of it all, he gets upset and worried, he is suffering as much as I am.
Patsy you have done very well and I am sure you will continue to do so. I do have a wonderful Oncologist, the best in Spain, no exaggeration and it was a sheer fluke I was put on his list. He is the most wonderful and caring man I have ever come across. Last week I was really down and said to him I just can't go on any more. This chemo is knocking hell out of me and I feel so ill. His comment was ' you are not giving up on me now' I am one of his star patients on his Avastin trials and he is really willing me on. With his support and the right drugs I am determined to do so. His comment too is they would rather spend more on the military in the UK than drugs !!
Glad the rant club is continuing, where else can we be not quite pc!
Patsy, I am so glad you are starting chemo, I find limbo land very frustrating and seem to spend my time waiting for test results and drs appointments.
Here goes a rant, I cannot believe I am sitting here, saying its is good to be starting chemo, what planet do we live on!!
Most 'normal sane people' are getting on with lives, and at this time of year making resolutions and worrying about the latest way in which to change themselves.
We ladies of the club are just trying to stay on this planet for a bit longer, bugger the diet and all that crap!!
On a serious note, does anyone else feel that being in this place somewhat isolates you? it almost feels like you are in your own bubble.
Gosh, I could continue, but I will not give the pesky monkey the chance to ruin my day, the dog needs a walk and being out in the rain is a better way to spend my time.
Take care Patsy, go and eat all the things you will not feel like eating when you are on chemo!
What a tonic you all are and a source of information. I am due a post op review a week today followed by a period of monitoringq. I am goingq to ask about avastin, caelyx & gemcitabane as I developed the allergy to carboplatin and cisplatin had no effect. I am lucky that my children and I discuss outcomes. My daughter gavke me a wonderful month's convalescence after my op though my son finds facing the inevitable more difficult. I live alone and they are very supportive.
At 71 I aim for the longest period of really good quality that I can not just staying undead for as long as possible.
Hi ladies. I don't comment much on here but read all your daily 'posts' . I just wanted to wish you good luck for your treatment next week Patsy. You've done so well getting this far from first diagnosis - this gives me a real boost (diag 3c in Sept 2009). I am on 2nd line chemo (carbo/gemcitibane) at the moment for recurrence in lymph nodes. Otherwise really well so hope the little buggers get zapped to bits!!!
Like Fiona I too feel isolated at times. I took early retirement from my busy job 12 months ago to do those things I kept putting off. Have to admit I haven't done many of them, yet, but working on it - unfortunately chemo has got in the way, again!! But I've stayed in touch with work colleagues, and contacted old friends who I haven't seen in ages, so now I am a 'lady who lunches' on a regular basis.
I have 3 wonderful grown up children who are my support, along with hubby. They always text or phone when I'm having chemo to check on me, two of them live nearby and youngest son still at home. I know I can discuss things with them if I want, and often do, but only hubby gets to hear my deepest fears and emotions. Patsy I, too have a wedding to plan for, in 2 years time,(eldest son) and possibly one the year after (daughter won't commit just yet, although engaged!) so I'm planning ahead and don't intend to let this BBFC (not sure exactly what it stands for but I can guess haha) get the way of my plans. I plan to be around for a very, very long time !!!!!! Good luck everyone. Have a 'good' day. xxxxxxxxx
BBFC stands for Bloody Bollocks to ####### Cancer. Upgraded to the BBFC Rant Club for when we really want to let off steam at the bugger. (Ladies of a sensitive nature should perhaps steer clear!)
Like you the FC is now in my lymph nodes but roll on next week when the zapping starts.
I was just about to ask what BBFC stood for, now you ghave left me laughing. The times I call it all the names under the sun. its good that we can oepen up like that on here without offending anyone. I`m sure all of us will agree the BBFC fits perfectly well with the bastard that it is!!!!
I think we all have to protect ourselfs in our own little bubble more often than not doing. OMG we`d have no friends or support if we talked about it everytime we had things on our mind which is lets face it more often than not 24/7.
After my first consultation and scan appointment that both my 30 and 27 yr old Daughters knew about. I asked them if they wanted to be told should it be bad news. I told them I would never lie about anything however, I needed to be aware how much they wanted to be told and if they would want me to be open and honest and talk to them freely about it, even if it meant lots of tears and wobbly`s? They both wanted that.
I was so pleased because I was so young when this happened to my own mum, I was just 14 when she fell ill and 16 when we lost her. It was never talked about, only that mum was very ill and needed home care. We were told not to make too much noise, not to go into her room without permission and not to mention her illness to her. Mum obviously wanted to protect us but afterwards I realised that Dad was actually protecting mum from it all. As if anyone can be that ill and have no idea of knowing. It was soooo tremendously hard for my self and 3 yr older brother. But now I think about how ruddy difficult it must have been for our mother. She was indeed isolated, she had no modern communications like we have with on line communications with others. Although she had friends, mosty of them didn`t know what to talk to her about and she just painted the false smile to protect them from the reality of her pains. There wasn`t even macmillan in those days, a daily district nurse was the best support she had.
Thank goodness times have changed.
And because of how it was 37 years ago, I decided it would be much easier on all of us if we talked openly.
I also cried with both my daughters, and my husband I needed that as much as they did. Now, I make it perfectly clear they can ask me anything, anything at all regards the cancer, my future etc.
If we protect loved ones too much by hiding the reality of it all - we lose their trust very quickly and then they won`t know what or who to believe, this actually causes more worry than being told as much as we know ourselves.
Also never make false promises. None of us can ever know if we can beat this, if we say we will fight it and it gets the better of us we feel as though we have failed or our loved ones may feel we have given up.
You can`t fight cancer, it will never be our choice where it ends up, its luck of the drawer.
However, we can make the most of the good days and learn to be happy, do something that makes us happy every single day. Stop trying to be the perfect people pleaser but learn hard how to please oneself.
This is not being selfish, this is being kind to ourself. It combatts stress, frustration and anger and resentment. It helps us cope, it gives us strength and energy to get through each day.
Take each day at a time. live in the moment, the here and now is what is important, stop dwelling on the past, try not to think too far into the future. Enjoy the here and now and make the most of the life we still have. If we cannot continue with certain tasks or hobbies or doing for others, stop beating yourself up over it, gulit is a negative. Embrace what we are gievn and do with it what we can. If we feel fatigued allow rest for as long as it takes without the guilt. Always accept help even if we can manage, it makes others feel happy to be useful and to do something for us.
Hope this helps girlys - love you all with all my heart, even though we have never met in person, we are new friends to one another, feel blessed we have this. We may not be able to conco0r the cancer but we can concor the isolation quite a lot of the time. Nothing is ever off limits for discussion on here.
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