Riding and yard duties with a PICC line

[CourtJester]

I have recently been diagnosed with breast cancer and will start a course of chemotherapy next week. This involves the insertion of a PICC line which will be in place for 4 to 5 months. I have horses at home and ride every day. Hacking and dressage nothing too risky! Please does anyone have experience of a PICC line and how they coped with riding and stable duties? Practical advice only please!

 

[CrazyMare]

No practical advice over and above the advice after looking after someone with a newly inserted PICC. This was on the ward. It was rather tender for a day or two, so arranging some help for the first week or so might be a good idea.

Sorry to hear of your diagnosis, and I hope everything goes smoothly for you

 

[AdorableAlice]

Hello from a fellow BC lady. I went through it in 2013/14. I explained my situation to the onc, and his initial comment was no way. However, he then said if I was very careful about hygiene i would be ok. In the end I didn't need a PICC and they got the lot in via viens.

Are you having FEC ?

 

[CourtJester]

EC for the first 3 cycles then something else. It seems to be similar to FEC but without the F part which is Fluorouracil. I am on a learning curve! I am meeting the chemo team on Monday but all the consultants I have spoken to so far advise the PICC line I suppose at least going into the autumn I can keep it well covered up!

 

[Casey76]

TBH my first reaction was "don't do it" PICC (or any other central catheter) hygiene has to be absolute top priority. Central line infections are pernicious and can very easily be life-threatening.

Depending on placement (and at the elbow is common) it may actually be too uncomfortable for stable chores or riding. Constant movement/wiggling can reduce the patency of the catheter cap and increase the risk of infection also.

However, when you are undergoing chemo, you really need something to look forward to. So take all necessary precautions. You will need to talk to your consultant about how best to keep everything aseptic. (Sterile gauze and a vet wrap over the top to keep everything adequately covered may help).

 

[AdorableAlice]

EC for the first 3 cycles then something else. It seems to be similar to FEC but without the F part which is Fluorouracil. I am on a learning curve! I am meeting the chemo team on Monday but all the consultants I have spoken to so far advise the PICC line I suppose at least going into the autumn I can keep it well covered up!

TAX will be the last 3 and that is via PICC if I remember rightly. For this treatment all the ladies I saw at the hospital had a PICC in the collar bone area.
I had FEC, although that is not what I called it !!

The next bit will disappoint you. I set out with every intention of keeping going with my normal life but the drugs are accumulative and as you progress through the 6 months it will become trying. By the time I got to my sixth FEC I had learnt how to pace myself and deal with it. The cycle for me was day 1 to 6 wrecked, 7 to 12 picking up and 12 to 21 pretty good, could ride and potter around the yard. Of course we are all different and I met ladies who worked through it.

When you meet your team ask them about anti sickness drugs. My NHS trust prescribed the cheapest in the hope it would work and then rectified when it didn't. Metroclopmide (SP) is the common one and didn't work for me. EMEND is the gold plated one and they did give it to me for cycles 2 to 6. It worked and although I was nauseous I didn't suffer endless up chucking.

They will talk to you about fatigue, a simple word that means tired ? well no it is nothing to do with being tired. I actually struggled to sleep throughout the treatment because of the endless steroids. Fatigue for me was a heavy hopeless feeling, I could be in bed with a drink a few feet away and not be able to summons the energy to pick it up. I learnt a lot about the difference fatigue/tired.

The second week of your cycle will see your immune levels plummet and that is the risk week, you cannot afford to pick up any infection, but by staying away from children, public transport and shopping centres/cinema's etc you can set yourself up to succeed. The yard and the horses were ok for me, I did take care not to cut myself, kept hands clean (use surgical gloves) and didn't do things like pick fruit and eat it off the fruit bushes without washing it.

 

[mandyroberts]

Following...

 

[exracehorse]

I declined the picc line. I had horses too and children, one was very young at the time. I took chemo by way of tablets. Capecitabine (Xeloda) 21 tablets a day. Spread over 6 months. 2 weeks on. 1 week off. Agree with other posters. The chemo drains you. I've never known fatigue like it. Still rode every day though.

 

[moosea]

EC for the first 3 cycles then something else. It seems to be similar to FEC but without the F part which is Fluorouracil. I am on a learning curve! I am meeting the chemo team on Monday but all the consultants I have spoken to so far advise the PICC line I suppose at least going into the autumn I can keep it well covered up!

They always advise the PICC line! I refused it and my veins were fine - 3 x FEC then 3 X Dosataxil

 

[AdorableAlice]

They always advise the PICC line! I refused it and my veins were fine - 3 x FEC then 3 X Dosataxil

Do you think it is just easier for the staff to get the drugs in ? and that is why they steer you towards the PICC. They no trouble getting FEC into me on 5 sessions all with the wonderful chemo nurse Alison, but when she was away and someone else did it was a dreadful experience.

From an infection point of view many of the ladies in my group with PICCS suffered infections resulting in trips to hospital with temp spikes, I only one temp spike and just 2 days on iv antibiotics.

We are all so different and medicine moves on at such a rate it is impossible to generalise anything and we must listen to the experts who save our lives. In the not so distant future they will be able to pinpoint chemo treatment to any rogue cells and spare us the head to toe, belt and braces poisoning torture.

 

[Casey76]

Do you think it is just easier for the staff to get the drugs in ? and that is why they steer you towards the PICC. They no trouble getting FEC into me on 5 sessions all with the wonderful chemo nurse Alison, but when she was away and someone else did it was a dreadful experience.

From an infection point of view many of the ladies in my group with PICCS suffered infections resulting in trips to hospital with temp spikes, I only one temp spike and just 2 days on iv antibiotics.

We are all so different and medicine moves on at such a rate it is impossible to generalise anything and we must listen to the experts who save our lives. In the not so distant future they will be able to pinpoint chemo treatment to any rogue cells and spare us the head to toe, belt and braces poisoning torture.

Generally a PICC is safer for the patient. It also allows easy, immediate access in case of emergency. Extravasation (where the needle goes right through the vein, or comes out of the vein during administration for example) of chemo can have devastating effects. Having a central line also means that it is quicker to start the treatment, rather than having to wait for staff to set up a one off cath.

 

[CourtJester]

Thank you all for your responses especially those who have shared their experience. It seems that it is not that common to have a PICC line around horses! I will let you know how I get on.

 

[AdorableAlice]

Thank you all for your responses especially those who have shared their experience. It seems that it is not that common to have a PICC line around horses! I will let you know how I get on.

Hope all goes well for you. PM me if you need to. Do a little shop before the first chemo, ginger biscuits and ginger beer is great for dampening down nausea. I found my body craved for certain things as the chemo took hold, tomatoes dipped in salt was the main one and sea salt granules which I ate by buying pretzels and eating the salt only. Pineapple lollies are great for easing sore mouths too.

Probably too much information, but you need to know - anti sickness drugs and steroids will give you appalling constipation. Your chemo nurse should explain this to you and they are able to prescribe meds to combat it. Lactolose worked for me and you are better preempting the situation rather than waiting and dealing with it afterwards.

The fear of loosing your hair is worse than the actual happening. I found it more distressing seeing the hair on the pillow or in the shower than it was having my head shaved. I preempted the situation by having a very funky pixie cut just before the chemo started and I liked it ! that lasted for 2 months before I had to shave the remains off. You will realise just how much hair protects us when it is gone, I was either boiling hot or freezing cold. I had a lovely wig but never adapted to wearing it and certainly not on the yard. I just put a cotton scarf on, which my bonkers carthorse pinched one morning and ran off up the field with it !

Loss of eye lashes was awful, again they protect us. My eyes were so sore especially when sweat ran into them and dust from the yard was a problem too. I used those wrap around type cheap sunglasses - essential when mucking out or filling haynets.

Fly bites (I had treatment May to October) very nearly stopped chemo twice. I rarely wear long sleeved tops in the summer and got bitten by flies. I would advise covering up. You need to remember the nurses and onc's won't be thinking about ladies doing anything but 'normal' activities whilst going through treatment. I vividly remember proudly telling my Onc that I had been riding, he said a little exercise on a bike was good for me. I left it at that !

 

[CourtJester]

Thank you for the practical advice. I was going to shave my hair off before the start of the chemo as I think it is really sad to see your hair fall out but reading your story I think I will postpone that and start off with a very short cut. I didn't know about the food cravings I have always really hated tomatoes so that would be quite funny if I get a craving for those! I hadn't thought through the loss of eye lashes I wear contact lens to ride so that might not be possible if they get too sore. Looks like the PICC line might be the least of my worries!!

 

[TheOldTrout]

On the subject of hair loss - one young woman losing her hair through chemo started a fashion blog in which she photographed herself with a different bandana / hat / headscarf each day, covering the head where she lost her hair. You should be able to find it if you trawl the internet, or maybe some of your medical staff would know of it - I believe it's quite well known. Could give you some ideas for protecting your scalp.

 

[AdorableAlice]

Thank you for the practical advice. I was going to shave my hair off before the start of the chemo as I think it is really sad to see your hair fall out but reading your story I think I will postpone that and start off with a very short cut. I didn't know about the food cravings I have always really hated tomatoes so that would be quite funny if I get a craving for those! I hadn't thought through the loss of eye lashes I wear contact lens to ride so that might not be possible if they get too sore. Looks like the PICC line might be the least of my worries!!

It is trite of me to say 'don't worry', this is the most stressful thing you are likely to face. Everyone is different and it is a case of see what happens. I was told I would hate any foods I craved for during chemo, wrong, I still love tomatoes and ginger beer. I couldn't stand the smell of fried food when I was ill and my husband was banned from anything fried, that has remained and if anything has got worse.

My hair grew back quickly once chemo had ended, a bit patchy but it soon got going and is now thicker than it ever was before treatment. Eye lashes came back quickly to, under arm hair never returned - yaah !! sadly legs remain forest like.

I hope you have a set up at home that allows you to relax, be supported and take each day as it comes. That will help you greatly, I saw ladies who lost their jobs and had no support from husbands, it was shocking. I was very fortunate with a husband that supported me throughout, an employer who was superb and the very best friends who dealt with the horses.

 

[LynH]

I've had several PICC lines in and probably due to have another soon. The longest I've had one in for was 22 months so I had to get on with things and do the horses and ride with it in.
I make sure I have plenty of dressings and extra comfifast so I can change anything that gets dirty at the yard. I also had a tight sleeve to cover my arm, the PICC line and extension when I was at the yard more to keep it all in place. I often had to do my IVs (antibiotics three times a day) at the yard so asked the hospital for sterile packs with a sterile sheet to lay all my syringes etc on in the tea room. They weren't very supportive about me being around horses at the start but when you do almost two years with a PICC line you have to just do as much as you can. I'm stuck at home enough when I'm ill so if the drugs are working I make sure I make the most of it.
Keep a box of sterile gloves, hand sanitiser, spare alcohol wipes and flushes etc at the yard and make sure you use gloves etc as much as possible.

I've done a total of 46 months of IV antibiotics over the years and the one time I did get sepsis the PICC line was completely clear of infection and ruled out as the source. I did have to change my horses bits so they were lighter in my hand as they both learned very quickly that my left arm was weaker and I once had a horse grab and break the extension but they always give you spares so not a huge problem especially as I managed to rescue it before he pulled the line out. I also now keep my horses out full time so I have less mucking out to do but they still have access to their stables as field shelters so there's still plenty to do. I found things like lifting saddles onto my horses hurt my shoulder with the line in so had to ask others for help and had to move to the lower saddle racks etc. I tried not to lift anything with that arm and not to raise it above my head.

Good luck with your chemo, lots of rest and doing the horses when you can will help you through and don't forget to ask for help, people will always say no if they can't and more often than not they are glad to do anything to make your life easier. I'm very grateful for my friends who've enabled me to keep my horses since I got SJS.

 

[AdorableAlice]

I've had several PICC lines in and probably due to have another soon. The longest I've had one in for was 22 months so I had to get on with things and do the horses and ride with it in.
I make sure I have plenty of dressings and extra comfifast so I can change anything that gets dirty at the yard. I also had a tight sleeve to cover my arm, the PICC line and extension when I was at the yard more to keep it all in place. I often had to do my IVs (antibiotics three times a day) at the yard so asked the hospital for sterile packs with a sterile sheet to lay all my syringes etc on in the tea room. They weren't very supportive about me being around horses at the start but when you do almost two years with a PICC line you have to just do as much as you can. I'm stuck at home enough when I'm ill so if the drugs are working I make sure I make the most of it.
Keep a box of sterile gloves, hand sanitiser, spare alcohol wipes and flushes etc at the yard and make sure you use gloves etc as much as possible.

I've done a total of 46 months of IV antibiotics over the years and the one time I did get sepsis the PICC line was completely clear of infection and ruled out as the source. I did have to change my horses bits so they were lighter in my hand as they both learned very quickly that my left arm was weaker and I once had a horse grab and break the extension but they always give you spares so not a huge problem especially as I managed to rescue it before he pulled the line out. I also now keep my horses out full time so I have less mucking out to do but they still have access to their stables as field shelters so there's still plenty to do. I found things like lifting saddles onto my horses hurt my shoulder with the line in so had to ask others for help and had to move to the lower saddle racks etc. I tried not to lift anything with that arm and not to raise it above my head.

Good luck with your chemo, lots of rest and doing the horses when you can will help you through and don't forget to ask for help, people will always say no if they can't and more often than not they are glad to do anything to make your life easier. I'm very grateful for my friends who've enabled me to keep my horses since I got SJS.

Having just googled SJS, you must be one amazing lady to keep going with the horses. I hope you are well.

 

[LynH]

Thank you. I've been struggling with the long term effects of SJS for years and it doesn't get any easier. I've managed to get out competing this year but it's a huge struggle and I spend far more time laid up than I do riding etc. I'm not able to work so can focus all my energy on short rides.
I'm currently waiting for a pacemaker to be fitted but may need some IV abx before that and I want to get qualified for the regionals before I do either.

https://www.facebook.com/SJSDressage/

 

[CourtJester]

Thank you Lyn for your post. It sounds like you have had a really tough time and are managing well. My PICC should only be in for 5 or 6 months and as the weather is cooling off I should be able to keep it well wrapped up. I am right handed and it will be in my right arm so I will make sure I have friends around for the first time I try anything out. I dont have to do anything scary like my own IV. Good luck with managing SJS and for your regional qualification.

 

[cavalo branco]

Just to wish you luck, advise you not to google (you might scare yourself with out of date information) and maybe log onto Breast Cancer Care forums, they are so helpful and supportive, you will feel part of the gang!
I've twice had IV chemo, never had a PICC or port though, I've just refused as I'm on long term treatment and want to keep doing my horses. I've got stroppy after 22 years of on-off treatment!! Still here though thanks to an amazing drug trial.
My only other tip is go for the Emend if you feel sick, it's expensive so you won't be offered it to start. I also never took steroids in the evening or you will be bouncing off the walls not sleeping!! x

 

[AdorableAlice]

Just to wish you luck, advise you not to google (you might scare yourself with out of date information) and maybe log onto Breast Cancer Care forums, they are so helpful and supportive, you will feel part of the gang!
I've twice had IV chemo, never had a PICC or port though, I've just refused as I'm on long term treatment and want to keep doing my horses. I've got stroppy after 22 years of on-off treatment!! Still here though thanks to an amazing drug trial.
My only other tip is go for the Emend if you feel sick, it's expensive so you won't be offered it to start. I also never took steroids in the evening or you will be bouncing off the walls not sleeping!! x

CourtJester - told you so !! re Emend and steroids. I also had the odd dream on the steroids, best was the hippo that sat on top of my wardrobe.

 

[CourtJester]

Thank you CB for the tips you have made Adorable Alice feel very smug as she has told me the same ! 22 years is a long battle well done for keeping going with your horses. I have never really done drugs at all so will be wary of the steroids and not take them in the evening. Happy dreams !!

 

[AdorableAlice]

Thank you CB for the tips you have made Adorable Alice feel very smug as she has told me the same ! 22 years is a long battle well done for keeping going with your horses. I have never really done drugs at all so will be wary of the steroids and not take them in the evening. Happy dreams !!

22 years is a sobering thought, and deepest respect is needed. Emend is a wonder drug and I got it on the 2nd cycle, first cycle anti sick was Metroclopmide possibly not spelt like that. Didn't work for me and nasty side effects. I was also given a magic blue pill to take a couple of hours before each treatment, it calmed the nerves and relaxed the body. I did ask for a bucket full but they declined, no idea why. !

Lets hope modern medicine keeps moving forward and research can finally help get on top of this dam disease that plagues so many of us.

 

[AdorableAlice]

Please join me in wishing Court Jester the best of luck today. She should be just about on her way home after her first chemo this morning.

A few messages will cheer her up.

 

[Hannahgb]

Wishing you all the luck in the world xx

 

[TheOldTrout]

Good luck Court Jester. We're all thinking of you.

 

[AShetlandBitMeOnce]

Good luck CJ, hope everything went as well as it could have. xx

 

[Alibear]

Good luck CJ, hope it's all gone well, and you can go get some pony cuddles to cheer you up.

 

[teacups]

Good luck!