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December 2019 Chemo Starters

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B4
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Re: December 2019 Chemo Starters

Thats the spirit Lady 34,

 

I am glad that it is getting easier for you, I am suffering with real bad heart burns.... (gastritis), Started PPI's and lost the taste :-), I guess the good thing is that the time will pass.... and we will soon be celebrating our chemo end.

 

Best wishes and big hugs

 

B4

 

 

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Re: December 2019 Chemo Starters

Hi ladies

my 9th day and thanks rizzer and madcatlady I have turned a different corner. Feel more human!  

I blame my downfall this time on myself. Simply needed to take my sick tabs three times a day - I took 1 also my dulcolax everyday - I took it one day on one day off and a paracetamol 3 times a day for sore mouth - I let my mouth get totally sore. Also one last thing at night helps me sleep. 

Now ive done this for 2 days I’m feeling stable. 

This is simple so why don’t I just do it robotically. Who knows?

Anyway lesson learnt. 

So admire you all who’ve gone out and to classes. This is huge and necessary to feel normal. 

As for people’s reactions! Their capacity to face us as we are is as it is. We can only be as we are and we will see their limitations, compassion or understanding. 

 

It is yet more lessons to learn. Illness is a Subject avoided by most as is the end of life but we all know this will come to us all in one form or another. 

 

We know what we have to manage right now and that is the journey we are on so everything we do think feel and learn now is precious to us. 

 

Big hugs to all doing chemo this week. 

Sending love πŸ’• 

ring the bells we are moving forwards πŸ›ŽπŸ›ŽπŸ›Ž

 

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B4
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Re: December 2019 Chemo Starters

Thanks Mrs S

 

xx

B4

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Re: December 2019 Chemo Starters

B4 so sorry to hear that the port was too painful. I did have 7 days recovery before they accessed mine. I am sure it will have settled by your next one.

I also have 8mg dex pre loaded before chemo, then another 4mg in the evening plus 2.5 days of 8mg. It's ironic that the meds that are preventing side effects give us other side effects. I guess some are more bearable than others! The whole process messes with my head. I just hope research comes up with better treatments soon.

Take care B4, and everyone else having side effects. Just go with the flow and eat what you want x

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B4
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Re: December 2019 Chemo Starters

I fully agree with you Mrs S.. that this definitely teaches us what not to say 😊

 

love and best wishes

B4

 

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B4
Member

Re: December 2019 Chemo Starters

Thanks 

didnot use the port, actually was too painful, hence peripheral cannula was sited and I was ok ...phew... the only thing is that I get given 8mgs of dexamethasone, which is quite a massive dose... it makes me so hungry...

 

im sure one day all chemos for all of us will finish and we will be super happy.... and possibly plan a meet as well with our tiny hair.. :-)

 

love and hugs

 

B4

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Re: December 2019 Chemo Starters

How are you doing B4? How did chemo go yesterday (I think?) with the new port etc X 

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Re: December 2019 Chemo Starters

Morning all, just a quick post to say I hope you all have a good weekend. In particular anyone who’s been struggling with SEs. Lady34 and Silvertong, I hope you have turned or will turn the corner soon, Sending love X 

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Re: December 2019 Chemo Starters

B4 and rizzer

 

I have also had similar experiences. People say the most bizarre things that really aren't helpful, even if they mean well. It has certainly been a lesson in what not to say to people going through this.

 

Well done Rizzer on the tail chi. I did yoga at my gym every week before this. My gym membership is currently on hold but my yoga teacher runs classes at a local church. I have been thinking of going, but like you am nervous of going into this new setting with new people sporting a turban/ headwear. I will take confidence from you and give it a go (I think).

 

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B4
Member

Re: December 2019 Chemo Starters

Rizzer, I fully agree with Shi,

You are truly brave to have gone to the Ti Chi class... don't give up, be a regular there, we have to help ourselves.... 

Well done!

 

B4

 

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B4
Member

Re: December 2019 Chemo Starters

Frizzer, I fully agree with Shi,

You are truly brave to have gone to the Ti Chi class... don't give up, be a regular there, we have to help ourselves.... 

Well done!

 

B4

 

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B4
Member

Re: December 2019 Chemo Starters

Rizzer, I am sure we all have faced these situations. I want to share similar experience, I went to this new year party organised by my friend for the first time after having Chemo, met my few colleagues with their spouses and felt quite out of place (despite of me being very social and knowing them well) and esp once we have come to terms with our diagnosis, its a bit hurtful when people say how sorry they are as it starts the whole trauma process over again.

 

You won't believe one of my doctor friends who I met very recently was telling me about someone she knew had CA breast few years ago but then sadly she passed away after suffering, I can't believe whether she was being supportive or purposely pulling me down... but then I just dismiss it her being super daft  :-( 

 

I do have very supportive friends as well, but what can we do about nonsensical individuals.....

 

sending loads of hugs and best wishes

 

B4

 

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Shi Community Champion
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Re: December 2019 Chemo Starters

Rizzer, I just had to drop you quick post, I think you’ve done brilliant to get out to tai chi and trying something new. It does get easier each time you step out trying new things but I know what you mean, it’s a bit 😳 as you get into a bubble of treatments, appointments, bloods, you’ve done amazing β€οΈπŸ’•πŸ’•βœ¨βœ¨shi xx

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Re: December 2019 Chemo Starters

Hope you're tucked up in bed now, B4, and get some sleep.

Sending you love and prayers for tomorrow's treatment.

xx

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Re: December 2019 Chemo Starters

I went to an tai chi class today! Never been before. Found going in to to a new social situation quite emotional. Made me think on how much cancer knocks your confidence. I know others in here have felt similar, going out and about. 

It’s not like I’m Mrs extrovert, but I can’t imagine i’d have felt quite so out of my depth before all this. Might help if I’d actually got around to sorting my prosthesis. Must do that. 

On Tuesday went to a local cancer support group for women. That was easier as people understand. One of the ladies there told me that when she was asked once what type of cancer she had (not breast cancer), and she told them, they blurted out β€˜Oh, my dog died of that!’.

 

The things people say, eh?! 

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B4
Member

Re: December 2019 Chemo Starters

Thanks Rizzer,

 

Trying to be brave!

 

Love

 

B4

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Re: December 2019 Chemo Starters

Hey B4, exactly as Mrs1968 says, it won’t hurt at all once it’s in, if my experience is anything to go by. I was worried just like you as I was still sore. 

 

I put Emla cream on, but I do think that was probably over the top. The insertion was quick and I found it just like having blood taken (sharp scratch then done).

 

Oh and if you don’t want to have blood taken through it, say you’d like it to be taken from your arm. I have asked that both times.  Might be easier for them to do the port, but it’s your body and your choice!  

take care X

 

 

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Re: December 2019 Chemo Starters

B4 I am confident you will be ok. I will be thinking of you and sending positive vibes x

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B4
Member

Re: December 2019 Chemo Starters

thanks Mrs S

 

pain is such a horrible thing. I just hope it goes all fineπŸ™πŸ» .

 

love and hugs

b4

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Re: December 2019 Chemo Starters

B4- my port was fairly new when I had chemo through it. The worst bit was the nurses prodding to find it to put the needle in. Once the needle was in it was fine x

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B4
Member

Re: December 2019 Chemo Starters

Dear Sivertong,

 

Please ring your unit again (hopefully it will be a different person this time you talk to) and describe your symptoms. If it is pain and weakness then do take pain killers and sleep off. Please stay strong, we are all in it together and though at times (most of the times actually) it does not feel so..but we all will be out of it soon. This time will pass.

Sending you loads of love and good wishes with hugs.

B4

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B4
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Re: December 2019 Chemo Starters

Thanks Rizzer,

 

The port is still quite sore and my pain threshold is super low, dreading tomorrows chemo as they will take the bloods and chemo will be delivered through the painful port. Praying... as that really helps...

 

Love

B4

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Re: December 2019 Chemo Starters

Evening Lady34 

Hope you're doing better now, but just go easy on yourself and remember you're getting through it. 

It feels like such a long haul but take it one day at a time, and sleep when you're able. That's all we can do at the moment.

xx

 

 

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Re: December 2019 Chemo Starters

How are you feeling now, silvertong? So sorry to hear you're struggling. Some side effects may be expected, but it doesn't mean the unit can't help to alleviate them.

I know it's hard when you feel ill, but do keep asking for advice.

xx

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Re: December 2019 Chemo Starters

Oh silvertong. That sounds miserable. I think if you can find the energy, keep trying to get some help from the medical team with your side effects. You shouldn’t have to feel like you’re in a living hell, temperature or no temperature. If you get through this (as you will, my love) without their help, when you feel more able you can tell them exactly what you need for next time. Make sure you keep a record. 
Cold comfort now, I know...

As mrss1968 said, there anything we might be able to help with? Xx

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Re: December 2019 Chemo Starters

Hi Silvertong

 

Sorry to hear you are feeling so awful. I felt like I had been hit by a truck second EC. Do you have someone at your hospital you can contact for advice and support instead of someone anonymous on the helpline? The nurses in my oncology unit are great and there are two breast chemo specialist nurses. I have their number and can text them with any issues.

 

What side effects are you suffering with? Perhaps one of us has had advice for them and could help? 

 

I know it doesn't feel like it, but you won't feel like this forever xxx

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Re: December 2019 Chemo Starters

Hi Lady34 - I'm with you, miserable as sin Smiley Sad

 

My treatment switched last week to the Pertuzumab/Perjeta, Trastuzumab/Herceptin and Docetaxol. I was stressing about the change and the dire warnings about reactions when they do the first infusions. On the actual days all seemed to go well so I thought 'Great! I can do this! Got through EC and I can get through this.' Day 4 things started going awry. Felt like I had been hit by a truck. Sodding side effects a go-go. Called the hotline but as I'm not running a temperature I feel like I'm getting fobbed off because it seems to be the things you just have to put up with.

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Re: December 2019 Chemo Starters

How are you faring b4? X 

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Re: December 2019 Chemo Starters

Hey lady34, sorry to hear you’re low in heart and mind. Be kind to yourself about not feeling able to plan future stuff right this moment. You will get through these days and then you will have the energy to deal with that. Keep going. Thinking of you X

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B4
Member

Re: December 2019 Chemo Starters

Dear Debbie,

 

I do agree with Mrs S, its better to have portacath rather than PICCS line... 

 

Best wishes!

 

B4

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Re: December 2019 Chemo Starters

Lady34 hang in there. That is exactly how I felt for 10 days post chemo. It does get better (before we do it all again). It really messes with the mind but we have no other option.

Thinking of you x

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Re: December 2019 Chemo Starters

Hi , you should be prescribed a limbo to cover your picc line in the shower. They work really well and keep it totally dry. My hospital gave me  an order form for my gp to prescribe it . I would just ask your GP to prescribe one for you x

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Re: December 2019 Chemo Starters

Hi Debbie,

 

below low is a link to the one I use:

 

https://cancer.livebetterwith.com/products/limbo-adult-elbow-picc-line-cover-m65?variant=27590981943...

 

I have also used the blue one issued to me by the hospital when I had my PICC line put in, but find the above more comfortable, although still a β€œfaff” to use!  I look forward to the day when I can relax in the bath with both arms stretched out in the water!

 

Lynne x

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Re: December 2019 Chemo Starters

Hi all checking in on day 5

1-3 no appetite 4 ate a bit today nothing yet. Hubby bringing me melon. 

Nausea plus no or weird taste buds is the issue. So why have I not taken the clyclizine ??? So focused on the 3 day ya s and 5 day jabs forgot this is 3 times a day. 

 

No sleep first day 2-5 off and on but very unrested. 

 

Adele yes nurse told me this too. Low in heart and mind need to plan future stuff but telling myself to wait till treatment is over. 

 

Hugs to all πŸ›ŽπŸŒ²πŸ›ŽπŸŒ²πŸ›ŽπŸŒ²πŸ›Ž

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Re: December 2019 Chemo Starters

Debbie

Ask for a portacath. That's crazy to have a PICC line in for over  a year! X

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B4
Member

Re: December 2019 Chemo Starters

Hi Debelina,

 

My PICCS line did not work very well as I got thrombosis and had to be removed. I now have portacath. When I was having PICCS line then the nurse had advised me to use cling film, I did use it twice it protected me well.

 

Hugs and best wishes

 

B4

 

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Re: December 2019 Chemo Starters

Good evening ladies...…..I was wondering do any of you have a PICC line...…..I am gutted to learn that I now need to have my PICC line in until March 2021 as I thought I could have my H&P through a butterfly thingy in my hand......every day when I have my bath or shower I need to cover my PICC with a disposable plastic cover but as I am now going to have this is for so long I am wondering is there an alternative to these covers that you would recommend......

Debbie x

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Re: December 2019 Chemo Starters

Hi Adelemck

Hope you had a good catch up at lunch. The hot cross bun pudding sounds good.

Yep, a flock of baby birds all right! 

xx

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Re: December 2019 Chemo Starters

Thanks B4

Staying positive is better some days than others, isn't it! Glad you've got through the portacath fitting. No more dore cannulas and blood test bruising will be a bonus.

It was good seeing my manager last night and I slept much better. Last steroids at lunchtime today but then the dreaded GCSF injections start later too...

I had my chemo on Monday so the next scheduled one is on 10 Feb.

Just keeping my fingers crossed I don't have a dip with the white blood cell count again. Luckily the extra GCSF injections on the second cycle helped to prevent it.

I don't like the injections one little bit as they make me sore, tired, hot and miserable, but if that's what it takes I'll keep on.

I have seen a couple more ladies in scarves whilst out and have smiled and made eye contact. I really surprised myself opening up a conversation but it helped a lot...and if I was approached I would want to do the same. 

xx

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Re: December 2019 Chemo Starters

morning  ,My nurse said the side effects are a bit like pregnancy some women suffer more with sickness than others and will get more side effects so I guess hair must be the same - my best friend is coming round today for lunch she's been away for a week so need to pre warn her I look like a baby bird! I'm making soup and hot cross bun pudding love pottering in the kitchen with the radio on 😊 how is everyone? Adele x 

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Re: December 2019 Chemo Starters

Thanks for your reply B4, mine has started falling out now, not loads yet but definitely more than the norm. I asked my oncologist whether the intensity of side effects was related to the effectiveness of the treatment and she said a definite no so I imagine that includes the hair loss.

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B4
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Re: December 2019 Chemo Starters

Hi Frenchie,

 

I started loosing my hair everywhere after the second EC, with every lock of hair coming out I was bursting into tears. Thankfully my sister was here that time for support, she shaved my head and we both had a good final cry. Since then I have finished all 4 EC and 2 Paclitaxels still have not lost all of my hair...quite a bit of patches of stubble of hair. I will ask the oncologist in the next visit if it has to do with the effectiveness of the chemo??

When are you having your next one..

 

Best wishes and hugs

 

B4

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B4
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Re: December 2019 Chemo Starters

Hi Madcatlady,

 

Like you, I have been signed off sick since my surgery (October) as well for 8 months (till I finish radiotherapy) as I work with sick people. Like you even I miss my work and would like to win back as soon as I can. 

Hope you are coping well with your chemo.. when is your next one?

 

I am glad that you talked with the lady outside Aldi about chemo... what I observe is that people just don't talk.. there are women who are having similar chemo with me, its just now that they have started to smile back at me. I think that this time I would just take the initiative and start talking instead of smiling..

 

Please stay positive and happy as you are.

With loads of love and hugs

 

B4

 

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B4
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Re: December 2019 Chemo Starters

Hi Rizzer,

 

I was quite scared, they gave me local and loads of sedation so much so that I was snoring pretty bad they they had to do the jaw thurst (to open the airway).. I only woke up once the whole procedure was finished (so grateful to God). 

Yes it is sore, but it is functional now i.e. no more canula's and pricks for blood tests (hopefully). I am glad for the information that it would stop hurting after few days. As you said.. even I have not lost all my hair, I got the head shaved can still feel the stubble along with bald patches. I will have my next paclitaxel on 24th and one after that on 31st (a day after yours). Mine would be "the orange devil" (instead of red), or the "orange nectar" as it is curing us.

Sending loads of best wishes and regards your way.

 

B4

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Re: December 2019 Chemo Starters

Thanks rizzer.

I've been signed off since having the mastectomy on 8 Oct and the oncologist signed me off on Friday for another three months to cover the treatment, but I would like to get back before if I can. I'm lucky to get six months at full pay but I'm really conscious that I'm the only wage earner at home to support three of us, plus I miss the work routine.

We moved into a different team structure last April so my immediate manager is quite new to me, whereas I've known the one I'm meeting soon for the best part of twenty years. Either is available to support and manage us, but I think it makes sense to look at options with someone who has experienced it.

The cakes came out well, btw - date and walnut loaf and a madeira - and thanks, will hope it's a better night.

xx 

 

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Re: December 2019 Chemo Starters

Hey madcatlady, 

Sounds like a nice afternoon planned the day after chemo: tea, baked goodies and a chat with someone who understands. I hope it goes well. Is this with a view to seeing if you can arrange something that works for you with your manager - was it a more office-based role while you’re having treatment? Fingers crossed you can get an arrangement you’re happy with X
I hope you have a good night. β€˜Goodbye’ FEC indeed....Glad it wasn’t as sore as last time and hope your arm fully recovers soon.

Hey adelemck, I hope you made it to the supermarket ok. Good for you going in your handyband! I’m with you sister! X

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Re: December 2019 Chemo Starters

Well done Adelemck

Going out is a major thing when your hair has gone south. I plucked up the courage to take my hat off (for a bit) in the waiting room for the oncologist appt on Friday and then again (for a bit) whilst having my treatment yesterday.

I also did something really unlike me just before my first chemo (I'm normally quite shy and anxious). I stopped a woman wearing a headscarf outside Aldi; it was clear she had lost her hair.

I did say straightaway that if it was unwelcome I would go away, but would she mind me asking if she'd had chemo. She had, and said she was more than happy to talk. It really helped me and she was so generous in sharing her experience, and especially seeing her doing a normal activity (which at this point I was unsure how anything normal would work).

I thanked her profusely and hopefully she felt she had been noticed and valued. (She probably went home and said some mad cat lady had ambushed her outside Aldi and from now on she'd be going across the road to Morrisons!) So by getting out there and being visible we might actually be helping other women πŸ’ͺ😁

xx

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Re: December 2019 Chemo Starters

Hi Mrs1968

We could be twins! The downy chick look that is mostly grey - although I was pleased to see the odd brown bit of fluff...or was that the light fooling me...

Hope you're feeling like you're getting through the bad period now. 

I've done some baking today and am meeting my manager (who has had breast cancer too) for tea later. I had my 3rd FEC yesterday and am feeling more positive than last time, but that might be because the infusion didn't hurt this time. Last time it all hurt from the cannula going in, and my hand and arm are still sore now. The nurse yesterday did a long saline flush afterwards and said it would help. 

Halfway bell rung metaphorically speaking and goodbye to FEC, just three docetaxel (T) to go through... 

xx

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Re: December 2019 Chemo Starters

Hi rizzer

 

I agree with the protacath experience!

 

I'm on my last EC on the 30th, then 3 weeks "recovery", followed by 10 weeks weekly paclitaxel.

 

Yes I didn't think the hair loss would drag on so long either!

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Re: December 2019 Chemo Starters

Thanks B4, that’s really good to know about the dexam arrangement with the paclitaxel, thanks for sharing x. Good luck with portacath, exactly like mrss1968 says, it may be sore for a few days, but honestly nothing that interferes with doing anything. At least that was my experience. Felt slightly strange (not painful) lying on that side, but that passed too and I’m very grateful I have it now. Looking good Mrss1968 - I’m right there with you. I think we’re following a similar trajectory of hair loss! I also had a lot to lose (although I had no idea it would keep dragging on this long - still coming out yet still inexplicably some hanging in there) Sending you a big hug. I’m back getting more of the β€˜red devil’ on the 30th, anyone joining me?! X