I'm just about to start weekly taxol only a few weeks after carbo/gem. I'll go through with it because I have to, but I am finding the prospect rather daunting. All those hours spent hooked up when the sun might be shining outside. I have also been known to have the odd panic attack.
So how do you all cope? Do you listen to ipods, meditate, watch a film? I don't think I could concentrate on reading - all we've done so far is the crossword.
Also I am going to give the cooling cap a try (I've lost my hair 3 times in the past). Has anyone else managed to put up with it?
I know I am 'an old hand' at all of this now but I am feeling a bit sorry for myself.
Thank you all of you.
Sarah
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sarah1963
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I know exactly how you feel, I started with carboplatin /taxol, next year gem/carboplatin, now on weekly taxol no.16 I am meant to have 18 but think OC is fighting back as tummy has got bigger and ca125 started to rise again so very disappointed. At my chemo unit they have individual chairs with a television but I tend to fall asleep. I must admit it all gets too much I just want to feel strong and fit. Good luck sending you a big hug x
Thanks Nikki. You have got through 16 - which from my perspective is brilliant. Even if your CA125 has started to rise, the taxol may have done some good. I feel really well at the moment which makes starting treatment all the more depressing. But when you come off taxol I bet you will feel strong and fit again too.
TVs with your chair sounds good.
Thanks for the hug - one back to you too. They help!
Just sending you my best wishes, (don't forget that the cool cap will make your sitting in the chair longer though) I am sorry I haven't any tips for passing away the time apart from a good book or sudoka I talk a lot as well LOL but I must admit I don't easily get bored.
Thanks for Gwyn. I bet I won't manage the cap but I will give it a go. I'm not that vain but I know from experience that trying to live a normal life (and not embarrass your children) is more of a challenge when you have no hair.
Yes I am a chatty person but I tire myself out being cheerful sometimes!
During my first chair times, I took a crochet project to work on, but I found that they gave me plenty of drugs to make me feel better and so I got very relaxed and ended up sleeping almost the entire time. So now I don't even bother to take a project. The time goes by fast. Try not to worry about it. I know that's easy to say, but hard to do.
Wishing you all the best Sarah. I found I couldn't concentrate on reading books but did have a supply of magazines to flick through. I also had some good chats with other patients. One lady said she pretended to herself that she was having a beauty treatment
The time did go pretty quickly on the whole.However, if it does seem to drag, comfort yourself with the thought that this means nothing unexpected has happened. When you'e in the chair, that's good news.
I was taking everything but the kitchen sink with me but didn't even open my book! I made friends with the lady next to me and I don't think we stopped talking for the six hours we were there. We laughed and joked and soon the other patients were joining in with us. The time flew by and every chemo session is like that. Even the nurses join in. I think I'm lucky that I can start a conversation with anyone.
Love
Jean
Xx
I know Sandra hates the process of sitting during the treatment, she tries and read a mag but her mind wonders. A therapist is avail for foot and hand massages while you wait for those who want it. I tend to spend my time on a wifi tablet reading the news etc etc. Love Paul xx
An iPad loaded with films/books? Start drawing on an iPad? Or on a normal sketch pad? Do a photo diary on an iPad and publish it here? There's quite a cancer community on Twitter - tweet on your phone? You'll make lots of new friends. Plan a little different treat before each treatment - a good cappuccino, a browse around a favourite shop, a trip to a bookshop? A silly mag like Hello or OK? Have a go at writing Lines from the Chair, or whatever. Write a list of things you can eat - taxol often plays havoc with appetites and we could use the advice.
Compose stroppy letters to MPs etc about OC treatment. If you said 'this is written as I'm having chemo' you would be bound to make an impact.
Draw cartoons of the nurses and doctors with slogans. Run a sweepstake on who has the most cannulation attempts and give the proceeds to Ovacome, or the poor soul who wins.
Think of something that you will enjoy doing immediately after each treatment, such as watching a DVD, phoning a good friend, just having a long hot bath and going to bed.
If you have wifi, play online games such as bridge.
Take husband/partner/relative/best friend with you and let whoever spoil you.
I love your list Crystyn - especially writing to your MP about treatment for Ovarian Cancer. Dare I say it I'm now looking forward to having this as a goal when the time comes. lol xxxxx Annie
in reply to
Just read the other suggestions properly. A Cannula Sweepstake, brilliant! But I particularly like the stroppy letter idea...
It's just horrible thinking of going back on the chemo ward so I'm sending sympathy and a big hug.
Jean's lucky to have a tremendously good ward with state of the art chairs which are close enough to chat to the neighbour. Our new ward in Cardiff has just opened so I'm hoping it has some of the add-ons that are listed above such as screens so you can watch a film, chairs that recline enough to have a snooze, and chairs that are close enough that you can strike up a conversation. We've had two meetings of our support group and I know how comforting and enjoyable it is to meet other women who are going through the same journey. I'd dread chemo sessions far less if I thought I was likely to strike up a conversation with a like-minded woman in the next chair.
I took in an i-pad and wi-fi though really hospital should be looking to install wi-fi these days. I also downloaded films and watched them or took in a radio. I found it difficult to concentrate on reading which I usually love as the wards were so noisy and I really can't abide Radio Wales which was on at full volume.
I hope the impending sessions go well for you and that the cold cap works. I was in the ward one day when a lady pulled off her cold cap and down fell this great mass of beautiful thick auburn hair. It obviously worked for her and I hope it does for you.
Feel free to feel sorry for yourself. We're all here for you with ideas to help, and jokes and banter to cheer you up. We'll be looking forward to hearing how you're getting on.
I just sleep, the chairs recline so I just put my feet up and before the anti emeitcs have gone thru' I'm asleep. I'm not too good at striking up conversation so I'm not too worried about the gaps between the chairs.
2nd Caelyx next week.
I did have occasion to complain about the noise in the dept on one session as I couldn't sleep for the noise and as I am quite deaf they were kicking up a racket.
How lovely to be relaxed enough to sleep. Mind you I might have nodded off after the pre - meds had it not been for the cooling cap. It was a novelty though.
All the best with the Caelyx - I had that a few years ago and got a whole year off from treatment after that. I didn't have many side effects either - just itchy skin.
First of all thank you for being such a universal support to everyone on this site. I'm sure everyone appreciates it.
First of the weekly taxols over with yesterday and that is a relief. The cooling cap proved to be a welcome distraction from the main event - its difficult to pay too much attention to the poison being pumped into you when you are having your head frozen. I also think I was given a particularly relaxing combination of pre-meds.
It was interesting to read the advice here. What impressed me was how tough everyone is - relaxed enough to chat. sleep etc. I have done both in the past but after 6 previous courses my nerves are beginning to fray.
My husband's advice is to treat is like a tough day at the office.
Thank you for the Peter Kay songs. My 16 yr old son and I watched it together.
I hope your pains are just caused by a bit too much gardening. I have found a recent enthusiasm for weeding has given me some strange pains.
I didn't enjoy the discussion about pus = I only want information on my own condition on a need to know basis.
I shall be following your progress on weekly Taxol because I'd like to ask my oncologist whether it's likely to be a good idea for me and if so whether I can try it even though Cardiff isn't part of any trials. As you say, information from others is helpful if its relevant to managing our own condition.
I'm also interested in your experience of pre-meds. It seems to me they might as well add some happy juices to the cocktail so we can drift off into a pleasant snooze whilst we're having chemotherapy. I shall add that to my discussion list when the time comes. It would surely make the cooling cap more tolerable.
I can't imagine how it feels to be on your seventh course of chemotherapy. I admire your tenacity and the strength of so many women on this site. it's an inspiration to get us through the bad times. That's what the site is for - to support, share helpful information, to laugh and to shed a compassionate tear too.
Sending you love and hoping the remainder of the Taxol goes well.
Hi I hated sitting for 5hrs the chairs were so uncomfortable and made me ache.
I usually fell asleep as the chemo and other drugs made me so tired and I
found it difficult to concentrate on a book or crossword because the tv was
usually on too loud.
Sending you my best wishes for your next chemo.
Lots of love
angie xx
I think that knowing how it will be is great excuse for feeling apprehensive. The first rounds are a voyage of discovery, by definition - you know too much about it now and are anticipating.
Some of mine post-op were 12 hours long and I started writing, preferring that to how I had whiled away the time before, chatting to a friend. Funnily it became quite a cathartic, meditative time which I quite enjoyed (after the faffing with needles bit was done, at least). So I'd recommend finding a few new and different things to take and do, I think - see what you find that enables you to escape a little. Nothing worse than feeling you just have time to wait through. Every 5 hours of your life is a valuable piece - so maybe read up on a thing you always meant to find out about, make a plan of action for something... Mentally walk through your house and list 5 things you could change about each room, so that by the end of spring you have a fresh environment (having a plan for this is good when you have to hand it to other half and say "now this is what I want you to do because of course I can't possibly do it myself..."). Do something silly like buy some funky nail wraps and do them - its perfect for when you can't mess them up by doing stuff, as you have to sit there so they will dry perfectly! Or.... Buy a "how to..." book on something you always meant to learn! Or get some language lessons to play. If the chemo brain really isn't helping try something that is more physical - calligraphy, silhouette cutting, learn to do caricatures if the other chair occupants...
I'm out of ideas now. I think what I am saying is - think laterally!
Your ideas are great Sue. I've always meant to go on a caricature drawing course. Obviously chemo is the best time to try this out. Like the idea of nails too, and other beauty treatments. I think we should contact our local college of FE to see if trainee beauty therapists would come and train on us. xxx Annie
See if there is an Athena Network branch near you Annie. theathenanetwork.co.uk/ Tends to be full of therapists, feel good consultants etc. in my experience, all looking for ways to spread their network... It's for women in business, so you get a lot of self employed practitioners and small salons etc. I met with one of the women from a new group I visited last week, she popped over today. Am going to try cranio sacral therapy to see if it helps me get rebalanced after chemo...
Thanks so much for the tip. I've just had a look at the Athena site and will explore it in more detail.
Cranial osteopathy might also be a good way to start rebalancing the body after surgery. That's an important thing to consider. I'd forgotten about that. xxxx
I am now on Cisplatin/paclitaxol - 12 hours days because of all the hydration, I do take my Kindle fire, but never seem to get the chance to read, our reclining chairs are set up in groups of 4 and we can chat to each other - I have met some amazing people over the years, as some of you have said, we can have a right old laugh and other patients and nurses join in. My daughter and 18 month old grand-daughter visited on Thus, but only after I was back on the hydration - couldnt run the risk of a wee toot knocking over the chemo stand, we went to the visitors lounge and she played with the toys - ace.
The nurses are so nice here and of course the charity I did the Catwalk for last weekend supplies lots of non NHS funded equipment - reclining chairs - cold caps, fans, tv's etc etc. The unit is actually called the ANCHOR unit after the charity.
There must be suggestion boxes around, I have heard that several years ago it was a nighmare experience having chemo in the NE Scotland - the black hole of Culcutta effect I believe.
Pleased to hear that improvements are being made around the country, I always take the offer of reflexology during chemo - again this is funded by the above mentioned charity.
Wow I'm impressed at the description of your Anchor Chemotherapy Unit Joanna. Ours has just been refurbished but no hope of getting the chairs grouped in fours. That's such a good idea - to have some in groups and others standalone so patients can choose which they'd prefer.
I realised from my twice-weekly stints in the Velindre Waiting Room at Ovarian Cancer Clinics that women are at very different stages and in different states of mind and some just don't seek out contact with anyone.
It just shows how much charity fundraising can do to help the NHS and other government funded services. How much did your charity catwalk raise? It's a brilliant idea and the photos looked as though everyone had so much fun.
On the night, they had raised £50,000 but the money is still coming in, I know we are lucky here in NE Scotland to have so many fantastic companies who are willing to sponsor events like this. Friends of ANCHOR are a big charity and have fundraising events all the time, their aim is to help make North East Scotland's cancer and haematology care the best it can be. A very interesting committee make up, if you want to read more about their work with a view to perhaps lobbying some companies down your way to "get involved" go to friendsofanchor.org.
thanks Joanna, I'll definitely look this up with a mind to fundraising. It's so helpful to gather together ideas like this. £50,000 is a massive sum! xxx Annie
The Christie opened a brand new treatment centre costing £40m about 18 mths ago and its got to be the worse design ever, nice new reclining chairs but the layout is rubbish. All lined up on a convexed shape you cannot see anyone beyond the chair on either side very well. It was better in the old part, chairs in a open square room you could chat easily to anyone you choose. Love Paul xx
It's interesting how different people react to environments- personally I really appreciated the smaller hubs in the treatment centre at The Christie. I would have found a wide open space within lots of people's eyeliner very overwhelming!
I found that having different people with me really helped me as it was a chance to catch up a bit. Also it meant that each trip felt different and a bit less monotonous! When the treatment was in the afternoon we always went for a nice lunch at a local restaurant. Xx
The thought of having weekly taxol was daunting. One of the best things I did was to have a hickman line as it was taking over 3/4 hour to get cannulars in. The treatment overall was 3 hours, I couldnt concentrate on books although I was clued up on the TV plots. There was always someone next to talk too, all different cancers. As the weeks progressed I tended to go to sleep,knowing that with the steroids going in, the next day I always had so much energy and did most of the jobs I had left done. I managed 27.taxol in all in finished end Dec. let loose for 4months just had my second scan results given time off 3 months all calm no change. This has been one of the longest times. I have had before the storm.
I've never really found it a problem to be honest. I read, do the crossword, have my iPod handy incase I've got a complainer next to me, if I do, I just plug myself in and pretend I'm asleep!! Other than that I sometimes have a chat or just watch the nurses whizzing around attending to everyone, most of them have time to say hello. I've been in one day every week for at least 5 hours since the beginning of August so between that and the other twice I was on chemo I'm well used to it now. We recently got state of the art chairs which aren't as comfy as the old ones so I take a cushion in with me which helps.
It's one place I feel able to sit and do nothing the whole time I'm in without feeling the slightest bit guilty, in the house I'm often thinking "mmm I should be doing that ironing etc".
Also I console myself with the thought that thankfully I'm, not on dialysis because I know some of these patients are in 2-3 times a week for hours at a time.
You do have a wealth of answers and good advice to get you thinking ....If your treament is at the N/N then I do so hope they have replaced the chairs as it was on the cards to do so . I didn't find them very comfortable at all last year . Most of them were broken and beyond repair .
Hi Sarah, just finished 15 lots of Taxol. It was as good as can be expected - 3 hours per session if it is all done in a timely fashion! Enjoy the drowsiness from the Piriton and its nearly time to finish.
Dear Sarah, had 5 cycles with very little side effects. Unfortunately Ca on the rise again now about 110 so having a new scan on Tuesday. I am planning a trip to Colorado to see a Naturopath called Nasha Winters at the end of May. She has a huge following in USA I am joining a 3 day retreat she runs for women with cancer. Will let you know how it goes. Have the approval of my Prof to travel!
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