had my second session today with paclitaxel - we had to abandon it as my immune system was not having it. gutted! I so wish there was a test to check for likely reaction.
At least the next two weeks should be easy with less than a 5th of my dose received.
And I so wanted to throw the most aggressive treatment possible at the cancer, because it deserves it. 
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I requested a picc line because my veins are tiny and I didnt want them to ruin my only good spot for drawing blood.
The procedure was okay, if a bit unpleasant. And I did feel some discomfort for about 3 weeks afterwards, which wouldnāt have been half as bad if they had told me to expect it. The team who inserted it only said āthatās weirdā, while the team who change the dressing said ātotally normalā.
Basically I had a feeling of pressure in my upper chest/neck area, and found it uncomfortable lying on my side, again because of pressure in that area.
apart from that I love the picc, no more anxiety and apprehension about drawing blood, it is a matter of mere minutes and completely pain free!
I still cannot look at it properly 
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Exactly the detail I was looking for. Thank you. Iām really not sure now. Chemo so hard without any other layers on top right? And home time is precious time. But I do dread this canulas. Cannot decide. I didnāt even Get my ears pierced till I was 44! I am the over imaginative type.
Ive had my picc since day oneā¦ it is fantastic. Not uncomfortable at all. I just keep it covered with fabric tubing so it doesnt catch on anything. You will be numbed for it inserting so wonāt feel a thing. It can be a bit fiddledy for them to get into place and can take a while. My 1st one wasnt quite down enough but ok for 1st infusion. I went back a week later for it redoing using a different xray machine so they could see better where line was heading. A bit of a pain having it done twice but didnt regret having one in. They should give you a prescription for a waterproof protector for bathing. @rfg
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hiiiii sorry itās taken ages for me to message back, Iāve tried to not be on my phone as much, otherwise all Iām doing is scrolling, lol. Iām not a phone person but obviously since this all happened thatās all Iām doing as Iām so bored.
Anyways, how are you doing?? so your treatment starts the 9th?? Il tell you, youāll feel so much better once it all starts, just the thought of it is worrying but itās honestly not that bad. I was so scared before my first cycle, scared of side effects and possible reactions but nothing happened and barely any side effects. Then the second one came and I felt so much calmerā¦ā¦. and touch wood Iāve been fine since.
This forum has been so so much helpā¦ā¦ everyone is going through the same and it feels so safe and positive here. As no one else really understands so at least here we are all in the same boat and can help each other along!!
Take care of yourself!!
Xxxxx
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Itās lovely to read everyoneās posts and good to not feel alone. Iāve been reading more than posting. I had my second EC (3 week cycle) Friday 29th Nov. It was delayed a week due to an allergic reaction to it the week before - but with IV antihistamines and steroids they managed to sneak the chemo in without my body noticing.
I had a PICC line fitted after my first chemo - the procedure was all OK - no pain. I have needed regular dressing changes due to some initial bleeding and now some fluid leakage. The nurses say itās ānormalā for still less than 2 weeks after fitting - but Iād like to get to weekly dressing changes as it means extra hospital visits. Itās still a bit nippy sometimes where itās anchored - but Iām so pleased not to have the needle business now for bloods and drugs, so no regrets so far.
My hair made a big exit at around day 17 - my scalp was sore and I was glad to get it shaved. I expect the rest will go during this cycle.
My next chemo is due 20th Dec - so Iām expecting to be feeling a bit groggy Christmas week and may put off visiting my Mum til the week after. Having lansoprazole has made a huge difference this cycle - very little nausea and no indigestion this time around.
Keep going everyone - we will get through this 
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Thank you for that. Iām so confused. Husband doesnāt think I should have it. I am ADHD and am prone to sensory issues. So itās more about my āawarenessā of it. A ridiculous example is that if I get my nails done with gel polish I can feel claustraphoic at the thought of not being able to get it off! I think on balance Iāll go one more round without and if its bad or worse Iāll brave the picc. And yes, I also dont relish going into hospital more than I need to. So nice to just be as normal as you can be in between cycles.
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@rfg I just wanted to throw portacath into the mix as an alternative to PICC. I had one fitted before starting which they couldnāt use for the first chemo because I only had the surgery 2 days previously, but the four attempts at cannulation certainly justified the decision. The advantage is that its under the skin, so no constraints on bathing, sports, etc. The surgeon that did it said heās even got professional rugby players amoungst his clientĆØle. He shared his website, which compares the different options: Discovering Central Venous Access Devices (CVADs)
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Hi @stevie86
Please donāt apologise I know exactly what you mean, sometimes thereās is also overload with messages, calls etc and I feel
Sometimes like a company switchboard 
I had a wobble last night and today, just feeling overwhelmed with everything and all the stuff you need to think about. Treatment date has been changed to the 10th so they can come and do bloods on the Monday at home ( I live a bit of a distance from where I am being treated) I had a look round the unit this week too- all felt very real. So to try and help I popped myself off to a Maggies centre today and that helped just feels like a safe place, the people are so nice and you can talk if you want to , I had a bit of a chat and then read a book until I felt calmer
Will be happy when the first one is over and feel hopeful from what you and other have said that itās probably a lot worse in my head that what the reality will be - and as you say if I am feeling pants this is such a lovely place to get support from people who know exactly what you are going through.
Thanks for the message back and wish you well for your treatment xx
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Thank you. Iāve come to the decision that Iām going to try the picc line. The hospital where very reassuring that if its bothering me I can just have it taken out within 24 hours. So I think its worth a try as first port of call.
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What is everyone thinking about wigs? No idea where to start. Donāt want an expensive real hair wig as I donāt see myself using it much, but it might be nice to have the option. When I look online thought they all just look so, well, wiggy! Hair is just starting to come out (hair on pillow last night and strands in my hands, but not great clumps yet). More scary than I thought it would be in reality. I thought because I got a short haorcut last week it would help me acclimatise, and in a way it ahs and Iām glad I did it, but Iām still scared to see myself in the mirror bald for the next 6 to god knows how many months! All these things are just one shock and indignity after another!!
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I got one second hand from a wig bank run by a local breast cancer charity for 15 quid. I felt I needed to try lots on, so this was the ideal solution for me. Iāve ended up with one thatās a good approximation for my existing hair cut and colour, because I wanted the anonymity of looking similar to normal. Attempting to upload photo of wigless and wiggy me for reference!
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I bought a fairly expensive - not massively so - one online but itās too much hair.
So I bought a couple for Ā£20 from Amazon which are quite thin, but do look like my hair normally looks. Iāve been wearing them for Teamsā calls and people donāt realise. Iām not sure they would work so well outdoors where people might scrutinise them.
What they have done is make me feel so much more normal. Rather than some weird half hairless person, I just look like me! Iāve been really impressed and it has made a difference to my self-confidence.
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It looks great! I canāt tell which one is which!!
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Rfg have you tried your MacMillan at your trust they usually have pre loved wigs also luvyababes do great range now and donāt look like fancy dress wigs, also there are lots of indigoās that do hair and make up and wigs if your near a large city and always good selection and let you try on 
Shi xx
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Flowers what a match for you no one will ever tell 
Shi xx
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Sorry ladies - weāve had some drama at home my 20 year old autistic son has walked out and gone to live with his dad because my chemotherapy has freaked him out ā¦ itās all been a bit stressful and Iāve been so upset and cried a lot ā¦ this happened a few days ago , combined
with my nadir phase I plunged into a bit of funkā¦ it never rains but pours eh !
Two weeks since my infusion and tbh I still feel exhausted ā¦ I think Iāll need a dose reduction before the next one . I have an oncology appointment the day before my next infusion which is a week tomorrow .
@rfg Iām so glad you are feeling a bit better after your latest Infusion- they like to hit you with the full dose to start with to see how you cope , hopefully that dose reduction will mean side effects arenāt so bad x
@couchpotato it seems common to have a reaction on the second dose ā¦ interestingly ā¦ did they give you pre meds ? They may change you to nab paclitaxel which is what Iām on , itās in an albumen solution instead of solvent x
@flower5 your wig looks great ! Itās a fantastic match x
@flojo I have all my wigs lined up ready ā¦ my hair is shedding like mad and my scalp hurts ā¦ Iām finally braving the shave tomorrow x
@mrso2 how are you ?
@stevie86 itās good to step back occasionally as it can be overwhelming keeping up while going through something like this x
My mum and step dad came down to visit for the night (they live four hours away ) ā¦ it was a tonic to see my mum if only for a couple of hours ā¦ sheās on immunotherapy still so also careful with germs ā¦
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@flojo would you be able to share a link?
@arty1 I am so sorry to hear about your son. My youngest daughter (16) is also autistic and I was so so worried about her reaction as she is very reliant on me, and tends to reject her dad. Iāve been so grateful that she has seemingly understood that she has to lean on her Dad in combination with becoming more independent. Itās come when sheās just started at art college and left the dreaded school system, so that seems to be good timing as she likes college so much more than school. She certainly doesnāt want me to talk about the cancer at all and is very anxious about it, but thankfully she is so anxious that she is giving me space! Iām really sorry again. I feel your distress. Having a young autistic person in your household is super hard when you are at a low ebb. Try to remember that their instict is to meet their own needs in the moment and therefore being with his Dad is probably just simply what he needs to do right now and is no reflection on you and his love and empathy for you. He just needs what he needs. It could be good for you to have some space. He will be back. Mums are Mums. I hope that didnt sound trite - please believe I have been up and down the intense autism rollercoaster! I am ADHD and My husband is also autistic (worked out through our daughter) so our house can be pretty interestingā¦ Cancer doesnāst bloody help!!!
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@rfg Itās hard isnāt it , especially when you are going through such a challenging time yourself
but you are right in that itās about serving their needs ā¦
I suspect there are a lot of ND adults around who arenāt diagnosed
heās been very quiet and hadnāt come out if his room much but seemed to be coping ok ā¦ I was more worried about my 14 year old daughter . Of course sheās heart broken her brother has gone so itās a right mess ā¦ my ex husband of course is furious as he didnāt want one of his adult children moving back in ā¦ Iām hoping heāll be back as he does need support and he wonāt get it from my ex husband ā¦
in other news Husband shaved my head this morning and I slapped one of my wigs on
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