Hi everyone... early Christmas good wishes now we are well into December!! Lovely or Aargh!?
Last Spring I really didn't think I would get to this point, and funnily one thing that bothered me was that I wouldn't/ couldn't get to see the show 'Beautiful' in Manchester which we had booked SO early with friends for 2nd Jan 😆 2018. No problem now...
Have woken today with a sore throat, but low temperature, this morning but I know I am going to get to end of this committing 18 week taxol treatment. Overall it has put me into a good phase though I still yo yo massively with the additional premeds to avoid a second reaction I had on first line a year ago.
CA 125 has come down massively from 5000+ to 234 on last test, rate slowing down now inevitably, but still in the right direction...
Seeing the oncologist every third week. Tomorrow will be my last appointment with him before a break for Christmas then scan and results early January to see if the feeling of being better matches up with what is actually going on inside me...
It's weird but in a strange way I have come to rely on the weekly hospital visits as a kind of physical and psychological prop towards how I am doing. When people ask now how I am I can see the look of relief on their faces when I reply , " Well actually......😌"
I am relieved too BUT the demons are knocking....I am beginning to feel anxious about what might happen when treatment and meds stop. Should I ask my onc if there is anything I can do/ have to keep my body on track when I stop ? How has anyone else been after getting to the end of weekly taxol ( or other longer on going treatments)? All an unknown of course but so hoping for a period of remission and recovery...
Love from janet x 🌲🎄💝🍷🌈 x
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Janet235
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I'm so pleased you are sounding "up" and happy. I emphasize with you completely. With only 3 more weekly chemos to go myself - I finish on the 19th - I'm starting to get withdrawal symptoms already. It is like a comforting blanket each week where it becomes someone else's responsibility to make me well again - or at least that's how I see it. I'm plucking up the courage to ask my oncologist tomorrow for weekly taxol for my last three weeks since my CA has only dropped a small amount in 5 weeks. It's not good for my morale. My dear friend is coming today to coach me on how to ask in a firm but controlled manner. Sounds a bit over the top but I need coaching as I'm a bit of a blubberer when I have to speak up for myself. Now I know I can alleviate the neuropathy I'm willing to give it another go. Don't even mind my hair falling out again as it' only just a bit of stubble at the moment.
So, I think for some, like us, stopping those weekly trips comes as a bit of a wrench. We seem to forget all the pain, sickness, constipation, tiredness, weirdness etc as soon as the end date draws nearer. I shall miss the friendliness and kindness of the nurses, especially little Tomas who has become my favourite and always goes that extra mile for me, getting me drinks, going through my blood tests with me, or just sitting and talking with me about life in general. It is his last day tomorrow as he's moving onto geriatrics for a couple of months. I was his first human port user patient so we share a bond - stupid but true. I shall miss the other nurses who have been so supportive of my knitting attempts, especially when my hands did not work properly. It's those little things that seem to matter and not all the nasty stuff. I think you and I must be from the same planet from out there somewhere.
I am keeping everything crossed for you that your future will be bright and sunny, despite the snow. Ours has now gone thankfully. It doesn't linger long. A bit grey and miserable today though. I like sunshine. I don't do winter very well.
Sorry Janet. That first bit came out a bit wrong. You sound happy but not happy if you know what I mean. Happy about your CA result but also a bit down with the demons. That's really what I meant but I've only had 3 hours sleep last night but that's no excuse. There, I'm blubbering again. Shut up Kryssy !!
You put that so well, the comfort blanket of responsibility of healing nurses... yes I too have my favourites but at Christie's there are five teams with at least half dozen on each.... so busy.
We will be raising glasses to each other then towards Christmas...🥂 X
Hopefully we will. Had my "lesson" and blubbed. I know I will break down tomorrow. But, nothing ventured, nothing gained. I'll cyber wave to you tomorrow. You'll have to cyber wave back on Wednesday. xxxx
I’m about to finish Avastin which I’ve had every three weeks since December last year. I have to have another scan in January and, although my CA125 has started to rise - 30 at its lowest, 230 now - the scans I had in September and November both show no significant progress. I’m torn between the relief of a treatment break and three monthly appointments and having the regular visit safety net removed!
I would chat to your team about what you can do to stay as healthy as possible - personally I don’t believe that any extreme regime like changing diet or taking supplements will make any difference - for me they risk doing me harm as I would find it hard to stick to it and then feel guilty.
I have a holiday booked for March - skiing in Italy, but am going to see if the consultant thinks I can make it to New Zealand maybe in February as I think it might be the healthiest I can be, what with ovarian cancer and burgeoning old age too!! We’ll see!
Enjoy your show - and I suppose the phrase is a bit overused, but ‘Carpe Deum’!
My only concern for New Zealand is for getting insurance. As for skiing, I spent quite a lot of time on the ground and it’s worse after sampling the local bar offerings at lunch time! 🎿🍺🤕
Hope you get your results quickly after the scan - nothing worse than waiting. Xx
Good luck with NZ...I know just what you feel. After hesitating, I took off for a month to Australia and points en route. Had a clinic 3 days after returning. Was fine throughout and had a great time. I found Insurancewith good to deal with, having been turned down by MIA who I had been using before. Probably cheaper too.
Have you got a Maggie's Centre near you. Ours is brilliant and I have attended a where now course for gynae cancers. It has been so helpful. Sending big hugs xx
Yes we have and I have been sadly neglecting making use of them whilstdeep in my own little chemo treatment world... will call by before Christmas to see how they can help in this interim period in the new year...
Hello Janet, so pleased you are now nearly at the end. You’ve done well and from the sound of it you’re feeling much better than when you started.
It’s not an easy feeling that you’ll lose the comfort of seeing your team every week but there will be plenty to do over Christmas and New Year.
And getting your brain back in working order. Yesterday I thought we’d have plain roast chicken as there were lots of other things to do. I thought an old-fashioned sage and onion stuffing would suit. What did I make? Sage and onion dumplings. Oh me! And I found my credit card that I’d told the Bank I’d lost at Charing Cross station underneath the handbrake of my car. It never left East Sussex......
Sure we’ll speak before Christmas but good luck for results in January.
had a nice Xmas lunch out with friends today, thought I would stop off at Superdrug to get 2 for £10 offer on the Moroccan argon hair oil, but why was the shop not in the precinct where it's always been ?
So I asked someone - and told it's on the corner of the car park... ( where it's always been) . Chemo brain DUH!!
Well done, Janet, on completing the weekly taxol! I will be very interested to hear how you get on, as I am just embarking on this, and I too have thoughts of 'what next?'. I am sure you are in the best of hands at the Christie and they will advise you. I had two months off treatment October/November after my second line didn't work, and although I knew the taxol third line was waiting for me I felt ok and managed to do all the things I wanted to do, so I was just grateful for that time of not feeling full of chemo!
Yes it’s such a strange feeling coming to the end of treatment , you think you should welcome it but the uncertainty of what’s to come can mess with your head , and I think it’s also linked to control .
I am due to finish Avastin after a year in January ( no 16 of 18 today ) . Have been living my life in 6 week blocks going from each CA125 test result and reluctant to plan anything past the next 3 months . despite them being good .
When we are having treatment we feel more in control ( slightly !) but without it we feel we need to be doing something to stop it progressing or returning . I even went for a second opinion to check I should be stopping the avastin . Have also asked about supplements and diet in an attempt to be doing something. Both oncologists I spoke to were unhappy with me going the ‘old as new’ drugs regime ( This isn’t to say it suits some and think everyone is different ) They recommended a sensible healthy diet , but did say exercise is important so I have focused on this . After some physio at Guys which was excellent ( couldn’t believe the improvement over the 8 weeks ) got myself some PT sessions at the local gym and back to Zumba which I love .
Counselling is really helping , am learning to acknowledge my fears but to try not to let them control my actions . (Easier said than done! ) am sure Maggies will have lots of options to support you .
Enjoy your treatment free Christmas and best wishes for your scan in January .
Last but one tomorrow for me, you on Wednesday. It hasn't got any easier to cope with, in fact worse. Chatted to the nurse this morning who came to take blood. He's lovely and despite being rushed to collect all the bloods to get them off to the testing centre he takes time if I'm a bit upset about anything.
Just so anxious now that the end draws nearer. How are you coping? Any tips? I've flung myself into something completely unrelated to health and involves reading law in French to help someone out. It's a flipping nightmare - thank goodness for google translate - but has certainly driven away the anxieties for a few hours a day. It's the nights. They don't get any shorter and the insomnia gets longer.
Hi KRyssy , yes those pesky cumulative symptoms keep getting worse and all we can hope for is that these subside after treatment stops but on the other hand that the darn disease doesn't recur too soon... it's all a terrible balance
I sleep for about 4 hours, need the loo then the brain starts whirring, usually up by six ... hubby drifts down about 8 to 8.30.
I was definitely having a wobble about treatment ending a couple of weeks ago but somehow I've distracted myself with getting our house straight after the big decorate, Christmas shopping and best of all getting on a plane last week from Manchester to Southampton ( only a 45 min flight) to stay with our son/ wife for a couple of days to stay in their new house. We came back to snow!
Lots of friends and family coming and going over the Christmas period so until 3 rd Jan scan I am hoping and trying to put worry on a back burner.
I am coughing like a trouper, feel heady and don't feel too wonderful so hope blood counts ok tomorrow. As we live so close to Christies I do this two day thing rather than wait around. Afterwards coffee here with some good friends and a lunch out ...
Well hope it's ok tomorrow for you - nearly at the mile post -
Last doctor has given me on going low dose steroids to keep me up over the holiday period. I have the rosiest fat cheeks, no eyelashes and scraggy hair which is still just about there, like an aging elf!
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