Hi everyone sorry not been on a while had a lot going on .Ive had to change consultants so lots of hospital appointments.Im finally sorted and had my chemo today was very nervous because they had to change it. I got a wig and it’s that good no one has asked if it is one.
Hope all goes well tomorrow gygi xx
Hope tomorrow goes well Gigi and Christine do you have chemo Tom? If so hope that goes well too.
Noahandwills mum that sounds exciting, I’ll look out for it on the one show. I’m sure Gigi did this course too.
Love your words, Gygi. So glad you shared them with us. Hope all goes well with the port tomorrow. I’m sure it will make chemo treatment easier.
Hope it goes well for everyone facing their next chemo. It has taken me a while to twig that I’m not starting each chemo course from the same level of fitness as the one before. Guess that was wishful thinking! It explains why it’s taken longer for the tiredness to lift this time.
Thanks everyone. I will let you know how it goes. Noahandwills mum I and my daughter Hannah did Life Kitchen with Ryan and Sue. We were interviewed too and were on itv news. All the girls in my school talk about it. I’m sure you will really enjoy your day x
Sorry for the radio silence this week. I’ve had my nephew staying with me and he’s been having abut of a tough time so I’ve been spending my time with his this week. Its been good to look after someone else and he’s been excellent company.
Im sad to hear about your difficult week Dorabel and Christine. Those down days come on quickly don’t they? I hope they have passed or at least passing for you both. I find them the most difficult of the side effects as there’s no pill to ease them but I’m pleased that the wonderful words from Michelle and Gigi soothed you as much as they did me… Thank you both for sharing them, they really hit the spot.
I’m having my final EC today then a 3 week break before starting Taxol. We’re going home at the end of next week to Scotland to see family and friends and also going over to Shetland for 6 days. I can’t wait and hope I’ll stay well.
Winshell - that sounds like a real pain for you but hopefully it’s all sorted now and the rest of the treatment will run to plan and you have an even better consultant…
Sarah, enjoy your food and filming… We’ll look out for you on the one show!
Gigi - best of luck with the port fitting and chemo . It’s not the most pleasant thing but it’s doable… And by this stage of the treatment you’re definitely tough enough for it! 
Warmest wishes to you all for a good day and a sunny Bank Holiday weekend.
You are, as ever, a huge support and an inspiration
Fiona x
Good morning all!
Hope treatment goes incident free for everyone today.
Fiona - how long will you have the weekly taxol for?
I know a few are moving into taxol soon so I thought I would give a summary of how my first week of it has been. Obviously it may not be the same for everyone.
I had an increased dose of steroids to take starting the day before chemo for about 3 Days and i think it was those that kept me going on the Saturday as I had lots of energy, but unfortunately energy went down from there.
I had quite bad heartburn for a day or two but eased up and I took fastab for it. It seemed once that passed I developed diarrhoea which as I wasn’t rushing to the toilet I stupidly put up with for about 3 days. I don’t recommend you do that! I have since spoken to my helpline and they have suggested immodium so hopefully back to normal soon.
I have also had a horrible feeling when swallowing food, it’s been difficult to get it down and the helpline thought I might have oral thrush which apparently is very common so I have some medication for that now too. The only other issue is that I have been very tired. I think like you Dorabel in my head I have been back to square one with each cycle but I guess we aren’t. They do say the fatigue is cumulative but hopefully I will have more energy next week. Although I would rather be without all of these additional effects it is all still doable.
The good news for me is that none of this has prevented me from my morning walk!
Wishing you all a good day x
Hi everyone
Back home after number 7 of the 12 weeks on Taxol and yes the effects add up over the weeks. i was exhausted before i started so actually took the bus to the hospital when i usually like to clear my head with a walk. One magpie at breakfast time seemed like a bad sign too. My port decided to play up so it took longer before the start of treatment and i just felt really out of it. Blood results were fine from yesterday and apart from the blip on the first week before they reduced the dose they have been surprisingly good.
I did have an appointment with the oncologist on wednesday and went through the many side effects. the worst are the cough i have had and the problems withh sore feet. The feet she thinks is due to the drugs actions on the nerves 9 (may need to reduce dose but not sure i want that) and the cough she didn’t seem too bothered about but did listen to my chest. I think it may be the targetted drugs rather the chemo that are causing this when i checked through the side effects at home.
That cooking course sounds good. i did have a quick look online and notice it relates to changes in taste when you are on chemo. That is also one that arrived after about week 5 i think and i do have trouble eating healthy low fat/low sugar foods with lots of veg. still love the fruit and pack that in but veg is just so bland. Any ideas would be apprecitated as i don’t want to put on too much weight.
Hope everyone is well and the days goe to plan.
Forgot to ask something else. Lots of people refer to the drug T. I am not sure if this Taxol (pacltaxel) or Taxotere (docetaxel). I think i have seen reference to it on here in both respects which is a bit confusing.
Help! I used the cold cap and was told to wait 2 days before doing anything to my hair. I now have a big hard mass of tangled hair at the top of my head. I have tried detangling Aussie spray and Palmers shampoo and intensive conditioner. Am now trying palmers intensive conditioner but leaving it for an hour or so and ha e hair in cling film. My hairdresser suggested oil intensive conditioner so may try that next. Anyone got any ideas? Thanks.
Sorry Linda I have no idea but there is a cold cappers group I belong to on Facebook. I’ll have a look see if anyone says anything.
Hi everyone I had my port. It is horribly sore i have a tube in my neck ???but ill give it time and take lots of pain killers. Got the shuttle bus to guys and just cried all the way there it was so sore. They refused to give me chemo as they said it was swollen and my drugs for chemo can cause tissue damage if it leaks out. I thought it was a bad idea to do chemo an hour after having the port put in. Quite a struggle to get home but here now and just got into bed and a friend called me and that was lovely. Tomorrow have a heart scan so at least not chemo fied for that. Chemo is now on Monday! Big sigh!
Linda you could try a silk pillow or silk cap and some say spray a paraben free conditioner diluted with water. Look on coldcappers support group on facebook: type in tangle and they give lots of advice. I don’t put conditioner on top of my head just on the sides and I use a silke. They also recommend not using a brush but your fingers or a wide toothed comb. Hope you find a solution x
Thanks Christine it totally feels like a tube in my neck and you can see it but hopefully tomorrow will get better. Thank you. Listening to Spanish music Almodovar sound track to calm me after all that palarva. Just been looking at the photos from Life kitchen and thinking one of them is you Sarah. Looks like a fun day x
That sounds terrible Gigi… The neck tube definitely feels quite pronounced at first but settles down in a few weeks and as Christine suggests, painkillers help. I had 2 paracetamol then 2 hrs later 2 ibuprofen and continued that for a few days…
I hope you feel better in the next few days and I absolutely love Almodovar… One of my favourite directors… Talk to her and All about my mother are faves of mine
Well, that’s me done with the EC - yay!!
I’m having 12 weeks of Paclitaxel (taxol) next Michelle.
I understand the side effects are less but the tiredness is more as you’ve experienced… Thanks very much for sharing that; the swallowing sounds quite uncomfortable. I have difficulty swallowing the first 4 days of EC so will see how I fare on the new regime.
Xx
Gentle hug Gygi. Your ordeal today sounds awful - really felt for you crying with pain on the bus. Doesn’t seem right that you should have to go through all this. I just hope it makes chemo on Monday less painful.
Thanks, Christine & Michelle, for the info on taxol/docetaxel. I’m starting docetaxel after the next (& last) EC course. Can’t say I’m looking forward to any of it.
Hope the sun shines for us all this weekend.
Linda, I only have minimal cold cap experience as couldn’t continue after round 1 due to migraines but I found that when my hair started to get very tangled, the body shop does a wide tooth detangling wooden comb that works really well but very gently. They sell out fast but I see they have online too. I used it successfully on a short Bob.
thebodyshop.com/en-gb/hair/brushes-combs/detangling-comb/p/p000789
Good ? luck x
Afternoon everyone I had my 2nd chemo on Thursday thankfully I didn’t have a allergic reaction. There has been some news about taking mukuna honey helps with chemo .MY daughter bought me some to try it helps with white blood cells x
Wildshell the doctor on This Morning was talking about this the other day. He said a study had shown that chemo patients who used the honey didn’t get the big dip in white blood cells. Let us know!
Thanks for the tips. Its coming out slowly after spending the am at the hairdressers who were great and having charged. Hoping to sort the rest soon, have used olive oil. May cut hair short for next time.Am using an aero comb silk pillow and just got a Silke. Hope it will look ok when out but time will tell.
Wildshell, I bought some too for when I go to weekly. My bro in law shared that Dr Chris clip… I love honey anyway but they had a great deal at Holland and Barret so a good time to pick some up. Also, my nurses told me yesterday that once I move to weekly chemo I need to make sure I eat loads of greens, I can’t eat too much- veggies, soups and smoothies …so I’m going to do that too. All worth a try! X