@nib32 I was given the chemotherapy red card (called an unwell card) at PICC line insertion, and that has the number I call with any issues at all. In normal hours, Monday to Friday that goes through to the chemo unit. However out of hours that number goes to a different department and unfortunately ‘go via A&E’ was the advice I was given off that on a Saturday afternoon … A shame as I didn’t feel I really needed to be in A&E, but also I understand that the problem is just that unfortunately there’s a lack of primary care at weekends/evenings in the NHS nowadays. But as you say, could be trust specific?
And I couldn’t fault A&E at all, it just didn’t seem the most appropriate service use -for me or them!
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Hello all, i have been trying to keep up with the thread but it moves fast. Hello and welcome to all the ladies who joined recently. I have picked up a lot of useful info from you all. I have got the asda adapted sweatshirt for picc access, noted to make notes for cold capping. I have also bought new pjs and a big amazon shop.
I had my picc line fitted yesterday which was not as bad as i had expected. Today was my preassesment. I had blood taken from the picc and didnt feel a thing, so much better than all those needle sticks in my crappy hidey veins. I start EC next week and have my appointment schedule. I had my BP took and it was too high. I get awful white coat syndrone. Nurse said my chemo wont go ahead if my BP is that high, which just made me more anxious. she advised i record it at home and take readings with me. Its close to normal now im home and relaxed. I hope they accept my own readings next week.
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Hi @nastynork I start next week too, my PICC line not being done until Monday I’m so glad you found it ok, I’m so scared about it!
All these extra things we have to worry about no wonder BP is high! I’m sure thy will take your at home readings 
Take care
Lots of love 
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Morning @nastynork and @loupy ,
I also have really bad white coat syndrome!! They weren’t too happy with my BP when I was in for chemo on Wednesday (unsurprisingly as it was pretty high!) I told them this has happened before in medical settings and I’ve had to do a 4 day at home reading things for the GP before, and I was feeling extremely anxious on Wednesday. So they have asked me to do the same and bring my at home readings to my next cycle. Sure enough, my readings yesterday morning and evening were fine at home! 
Hopefully that continues.
So, I’m sure they will accept your readings, it must happen quite often surely as chemo is a very stressful thing to be doing to!
Hope PICC line fitting goes ok @loupy - it’s so much easier for all the blood tests and meds once you have it in- I will say if you have sensitive skin ask for a hypoallergenic dressing. My first one was sooo itchy, but they changed it to a different type this week and so much better! X
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I suddenly had lots of appointments booked in for the next couple of weeks, so aswell as my port fitting on my Mon, I now have bloods, pre-assessments, a wound check, and other appointments with my first EC chemo booked dor 29th October. It would’ve been the week before but husband and sons are going to take a holiday to Ibiza given we had to cancel our family holiday because of all this. I didn’t really feel like going and would’ve worried about my mastectomy wound plus the travel insurance would’ve been expensive. So I just about still fit into the Oct chemo club 
Hope you are all doing ok. I assume there is probably chemo number 2 for a couple of this group next week who are on a fortnightly cycle?
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@rbf thanks for the reassurance re BP. Its good to hear im not the only one. Chemo and cancer is about the most stressful thing i have been through so its no surprise its high in the medical settting.
I hope everyone that has started already is doing ok. X
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Met oncologist yesterday, due to start in next 3 weeks, fortnightly EC x4, then fortnightly Paclitaxel x4. Feel so panicky and overwhelmed. Has anyone got any tips on how to cope with the mental/emotional side of all this. Feel so alone, even though I have a great family and friends. Feel like I am putting a brave face on, but inwardly screaming and struggling to breathe. For context, I was diagnosed in June, idc er+, pr+ her2-, 4 tumors, 25mm, 20mm, 18mm, 2mm, July 8th had a left flat mastectomy, then 26th August axillary node clearance, 6/17 nodes positive. Feeling so scared.
You’re not alone @tp5, we are all here with you x
You have had so many huge things happen in such a short space of time: it’s impossible to process properly before the next huge thing, this time what sounds like a very intense chemo regime.
What has helped me on the emotional side is my husband listening endlessly to me, sometimes from waking up to going to sleep. He has listened as I’ve said the same things over and over again, contradicted myself, etc, etc. Most importantly for me he has also just listened on the very many occasions when I’ve said I’m simply not doing any of this anymore, I’m not doing chemo, I’m going to cancel my fit note and go back to normal. He’s just said if that’s what I want to do, that’s ok. It’s been incredibly important for me emotionally to feel I could stop everything if I want to, to feel I still have some autonomy.
I mean, I never do cancel everything! But he doesnt argue with me, he just backs me up.
So thinking about it, that’s probably what has helped me most emotionally.
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Thank you for replying @dilly. I agree that talking is so important. My husband is great but he gets so upset when I am upset and then I feel guilty because I know this is hard for him as well. I am so glad you have support. The complete lack of control over my own life is something I am really struggling with x
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Bless you, it is such a a lot to take on. We all understand, although of course we all cope and process things differently.
I also felt guilty sometimes talking openly to very close family as you know they are also upset. I have spoken to the nurses on the Breast Cancer Now helpline, and they also have the someone like you service which might be worth looking into for chatting with someone who has been through what you are going through?
I tried mindfulness apps, but didn’t really find I could switch off properly, it is really hard to reign in the panic sometimes.
I am managing somewhat now by just moving from one appointment to the next and not looking too much beyond that as I was getting so overwhelmed x
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@tp5 i feel alone sometimes too. We all get it but we all have each other. I too have struggled with the mental side. There is a charity called Penny Brohn pennybrohn.org.uk
They do online sessions for anyone going through cancer treatment. I have found their relaxation room and clinicsl hypnotherapy sessions really helpful. Its all free to use though they ask for a donation if you can. They also do sessions for light excercise, esting well etc.
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Morning everyone,
TC on Monday and it’s Friday. Whoop whoop!
D1: infusion day not as heinous as i thought it would be, nurses straight on it when i had a side effect and cold cap was grand (keep back of your neck covered with a towel or scarf. I took 2 paracetamol before cooling.)
D2: lack of sleep with steroids a bummer for trying to think straight but mostly fluffy head. Nausea meds. Steroids. Filg injection.
Started using dry mouth spray and gargle after each meal. Couldnt even focus on TV plots
D3: headache meh - paracetamol// bone pain starting. No steroids so sleep pattern returning. Spray and gargle, whole body moisturise - skin dried up like a prune, Aveeno baby.
D4: headache meh - paracetamol // bone pain - you little bugger. Flashes of pain in shins, hips,and elbows?? Intense but lightening fast, bareable due to paracetamol for headache. Spray / gargle and gavisocon has arrived.
D5: Feel clear in my head - steroid withdrawl has gone so took headache buddy. Feel ‘normal tired’ bone pain flashes dont care if you’re sleeping, little buggers.
Feeling quite positive for today and recovery before next session. Aware of what to expect for me now so ready, i know it’s cumulative but considering my other medical issues ive been quite surprised. Honestly, one real blessing, sic, is ive had some major hangovers in my life and the fluffy head post chemo steroid ick is just feels like that. Drinking loads of water and dont move from bed until ive eaten a banana! Pregnancy trick for nausea.
Basically, OTC meds helping offset side effects for my TC. Head is my worst thing being fluffy, heavy or headache but bearable. Getting into a routine of nail oil, mouth care, minimal pain management and regular anti nausea.
Controlling this b’stard - for now!
We can do this. 
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@lumpybyebye super impressed you’re able to write all this coherently!! Sounds like you’re coping amazingly and have worked out how to deal with all the different symptoms. Remember also it’s ok to have periods of not feeling you can cope and a scream and a cry can help !! ( I’m sure you already know that, though …) Do you find it helpful documenting it all? I’m not really a diary writer but I’m thinking now it might be a good thing for me to do …
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@nib32 Ive a wee diary which has a few lines per day - not really written much at all. The reason im level headed is a practical approach…
I saw my mum die slowly and painfully from cancer, she felt every emotion and was overwhelmed by it all from day one. Absolutely horrendous experience for her and those that cared for her. I do have negative responses and reactions but I will not let them drive me. Bloody stubborn and determined. Cancer has steered my life enough.
My HRT was taken away due to BC so my happy pills were increased - they really help my mood as I have long term depression. I go practical… Research, list, organise, shop etc. My journey is built on the shoulders of all those that came before that have navigated, suffered side effects and learned the tricks to get through.
Im just trying to support those that come next, whether a day, a week or a month. Things have worked for me i jot down, it may not work for others but knowing you can ease side effects is such a bloody relief.
This is day4 post TC and i went for a walk to the local shop and back! Mad. My mum opted out and stayed negative and wouldnt move for weeks … im just doing it my way I had cancer, surgery took it, im now making damn sure it stays away!
Not letting the fecker grind me down! Game on.
^complete over use of !!! 
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So I’m day 10 after Docetaxel with targetted drug therapy Phesgo and 7 days of Filgrastim injections.
It’s been a rollercoaster and I’ve had every side effect, apart from nausea/sickness. I’m currently on day 2 of treatment for oral and vag thrush 
(but I was expecting that: all my adult life, any sign of being run down, I get thrush, so I think it’s my ‘thing’. Joy).
Things that I’ve found helpful…
*Bone pain. This really kicked in from injection 5. Pain relief and a hot water bottle. The chemo nurse advised about which pain relief. Also, sitting in a really hot shower was bliss lol. Ive seen antihistamines mentioned, so will ask at my next treatment. I understand you can have a single injection instead, which is also on my list!
*Oral thrush/sore mouth. I bought children’s soft toothbrush heads for my electric toothbrush. I actually found this better than a manual soft toothbrush because you can just sort of hold it still and move it along, which was less painful than moving a manual toothbrush around. My GP was super quick in sending a prescription across to the pharmacy. I religiously used the mouthwash I was given by the hospital, but looking back I think it started on about day 3 with a sore tongue and then ulcers. I should have twigged sooner, but I’ll know for next time!
*Constipation/diarrhoea: a constant juggling act, sorting out one seemed to trigger the opposite! I’m hoping that now I’ve finished all the post chemo meds that everything will settle down. I have drunk more water the last 10 days than in my entire life. I’ve found elderflower cordial for some drinks feels like a bit of a treat (tragic lol).
*Walks: I was absolutely determined to do a 30 min walk every day. I managed 3, and am trying to give myself grace because some days you will find you just keep falling asleep, or you have to stay near a loo, etc.
*Shower stool. I already had this for an existing medical condition. But when you feel really awful, or your legs are wobbly, being able to sit down in the shower is a complete game changer. So I would recommend.
*Food: I’ve found I’m eating probably half a helping. I just dont feel hungry, plus sore mouth. Some things taste really horrid (yogurt, blueberries) or is too acidic for a sore mouth, like tomatoes. One thing I did notice is that I seem to need a more substantial breakfast than just yogurt and fruit, so maybe overnight oats. So if you feel wobbly every morning, thats worth a try.
Overall, I would say this first week is pretty much All Shit lol…but I did get better sections of time. So I might have a crap morning, fall asleep after lunch and then wake up feeling ok for the rest of the day.
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Just to add:
*Clothes. I’d planned on comfy tops and leggings, but for me I had a very uncomfortable/painful/swollen stomach. Today is the first day I havent worn pj bottoms.
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@dilly, @lumpybyebye thanks, it’s useful to see all the information. Forewarned is forearmed and all that. It’s both terrifying me, yet readying me for it all. One consistent is that you are getting through it all one symptom at a time, so well done xx
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@lumpybyebye @dilly thanks for the tips and update. It sounds like you are both coping well although its rough. I was thinking of getting a shower stool. I might try the charity shop, i keep buying things to help and its getting expensive!
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@nastynork i look at what i nuy in terms of how many Guinness or bottles of Pinot it would be as I cant drink! 
Just as an a-ha moment … im currently in the Acute Medical Unit of my hospital. I havent gone for little side effects nope heart! Been here since Oncology referral at 3pm. All being monitired but a real FFS moment - getting to see lots of new departments in the hospital. Could murder fish n chips.
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Sorry to hear you are having such a rough time of it. I hope you are ok and you can get home soon.
Good call on the booze costs. im having my last alcoholic drink before chemo tonight. Then hiding the gin collection until next year. No drinking will save a bit. I did find some alcohol free mulled wine last week. Not sure that will work with chemo taste buds though.
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