Hi Gina .... firstly well done for getting through the treatment thus far and good news that it will all soon be over for you. I had terrible problems with my veins and the doctors fitted me with a portacath in my chest for infusions and bloodtests - and its wonderful!  Saying that, my treatment is ongoing and it is a permanent fixture for me. However, I just wondered if you could ask your oncologist/chemo nurse if there is anything similar that is used as a temporary measure - could they put something like a hickman line in the chest. Obviously, I have no idea how these things work and if it requires surgery to be fitted or if there is a line that can just be put it and flushed regularly. May be worth the question though. Good luck with everything x

Max

Thank you for your reply I've seen your name so often on this site - your story has had a huge impression on me I am so in awe of your supportive approach despite your own illness.

I'm not sure if they will do anything at the hospital with regards to putting a line in - i think as you say that if i've 'only' got four sessions left I might just have to tough it out. But I will ask :-) I'm going to try sitting with a hot water bottle and see if that makes extending it any easier. It doesn't help that the other arm is still compromised because I've still got quite bad cording but the physio seems to be helping progress there although sideways movement is still very restricted and tight. It's all the 'extra' things that get to you, and there are more the further through the treatment we go.

As has been said on here it's often difficult to get the right support from friends/family as they (quite understandably) don't know the right things to say. I feel as though i'm complaining if I talk to them about any problems because they know me as a strong person so they expect me to sail through it. And I don't like to worry people.

I've got a daughter in her second year at Uni who has been lovely and texts/calls me all the time, and a son in his first year who has been... well as supportive as an 18 year old boy can be! it's actually quite amusing to watch him dealing with life after he's spent the last seven years in his bedroom. Bet he will be proud of me and my new cyber activity!

Apart from that it's just me and my dog Toby who is loving the fact that I'm at home all day with him although he's a very active springer who pulls on the lead so I'm not able to walk him locally I have to drive him somewhere and let him out of the boot like a bullet!

So it has been a great source of comfort to me since November to read through the moving conversations and friendships made on here.

And this is my 'good' week so I need to get out there and make the most of today's sunshine and go for a walk - with, obviously, my best friend the beanie hat!

I hope things are stable for you at the moment

Gina xx

Hi Gina,

I've just seen your thread and see that you've had some informative replies from Max and Gill.

When I had my chemo infusions, I had a PICC line inserted. I think it stands for Peripherally inserted central catheter!

It ran from the crook of my arm into my chest and I have to say, its insertion was painless and fairly quick (no sedation or anaesthesia required) but as Gill mentioned, it did need flushing once a week and the dressing that covered it also needed changing weekly.

The nurses at the Cancer hospital taught my partner how to do both and he managed well and the hospital supplied everything we needed.

I opted to have the PICC line inserted so that I could have some of my chemo at home in an infusor bottle, but I saw lots of patients in the 'chemo circle' having their infusions through them.

It was a bit of a pain having a bath as you had to keep it dry, but the hospital supplied some long gloves!

I had mine fitted with only 3 chemo sessions to go! Removing it was painless and took seconds!

Good luck with the rest of your treatments.

Hugs to you, Jo xx

p.s. I see you have a dog! We'd love one but we think our two kitties may leave home!

Hi there

Well I've just had an eventful couple of hours at the hospital, when I called the number I've got for some advice after all your helpful comments, I got told to come down to the medical assessment unit so they could have a look. Okay, i thought, good that they are on the ball enough to check it out. When I got there I was told that I'd be better off going to A&E as they hadn't got anyone there who could  help me. Hmm I thought, I'm sure this could have waited until Monday when the clinic was open - but they were quite insistent that someone saw me. So off I went, even though I felt like a bit of a fraud as it wasn't an emergency. The staff were struggling with a new computer system that had gone live a couple of hours before and wasn't working - bang go their weekend targets!

Three hours later I left the department having been eventually seen by a junior doctor who I'm sure learnt more about cancer treatment and side effects from talking to me than he'd ever studied!! after checking me over he did however say that he thinks the pain is muscular rather than my veins as there is no redness or bruising and they dont seem to be particularly prominent. I'm a bit sceptical but I'll go with it until I see my oncologist on Friday. It's not the actual injection site that is painful, and they didn't have too much trouble finding a vein to use so I'm hoping he may be right. A lesser known side effect maybe? Who knows...

Whilst I like the sound of the PICC line Jo I'm not sure I'd cope with flushing it out and changing the dressing, I'm here on my own and I'm a bit squeamish about things like that - when i came home with the drain in after my lymph node clearance I couldn't wait for the district nurse to take it out which thankfully was the next day. But I will discuss it and see what comes of the conversation - I don't discount anything that will make it easier on my body, this is tough enough to deal with without adding extra things to cope with.

So here I am back at home and I have two soulful brown eyes staring at me - I'm never sure if he's telling me he loves me or accusing me of something! Toby's great company and I know he likes having me around so much at the moment. We had a cat too once Jo, Polly was a beautiful but very aloof tabby who strongly objected when Toby arrived! a lady down the road used to feed her so she moved in there! Cats can be fickle sometimes.

I hope you all have a good Sunday, I have been invited to a roast dinner with friends - my taste buds seem to be as yet unaffected thanks to chomping on ice whilst the drugs are infused. So bring on the roast beef! I need the calories as I don't/can't eat much the first week.

Thanks again for all your help and support, bless you ladies

Gina xx

I thought I'd just post a quick update just to confirm my situation, a nurse rang me this morning from the combined day unit to follow up on my trip to the hospital at the weekend - can't fault the efficiency I have experienced through this whole process, I have to say I do feel very supported by the NHS - but I do think it's down to how much noise you make if you are at all worried or confused. Help seems to always be there if you look for it.

After repeating my story the nurse confirmed my original thought - that the vein used for the last infusion has been irritated by the drugs. I spoke to her about the PICC line and she said it was an option if I wanted, and to either call in this week to the clinic or talk to my oncologist when I go on Friday. She also said that it may not reoccur if a different vein is used next time, as some are more sensitive than others - I might give it one more session and see if that gives the affected veins some time to recover - so long as I can get my arm to do what I want it to do!

I knew I should have waited for the clinic to open! the nurses there see this every day of the week and are often more experienced than anyone else about the effects of the treatment. I'll know next time no to try and find solutions at the weekend!

Thanks everyone for all the advice I have been given on here - it is invaluable to know that there are people out there who are willing to offer their support and opinions :-) I hope to be able to do the same.

Gina xx

Hi Gina,

Thanks for your update. It's good to hear how efficiently you've been dealt with. I feel the same about my care and treatment. Good old NHS!

I'm  glad you were able to talk things through with a nurse and at least now you have some options to choose from. I think your idea to try another session is a good one.

In your reply to me, you mentioned about being on your own so may find flushing and changing the PICC line dressing difficult. It is something that a second person would have to do and although I was lucky enough to have a willing partner to tend to mine, I was offered the assistance of a Community nurse if I wanted it.

Good luck with the rest of your treatment and do let us know how you get on and how your arm is doing!

Take care, Jo xx

Jo

Sorry to keep harping on about this I hate worrying but I cant help it. I've just been to my physio appt for the cording in my left arm and I mentioned the vein fiasco. She said that although she's not 'qualified' to advise she has seen it before and said that I should go to the unit whilst I was there. So I duly did - I'm getting much better at doing what I'm told as a result of all this! and I brought up the PICC line option. They said yes, that would help - I wasn't offered though, had to ask! - and they have kept a slot for me to be fitted with one on Monday morning pending approval from my oncologist who I see tomorrow. From what you've said it would seem to be a bit of very useful plumbing ;-) can you reassure me that insertion is not particularly painful? I'm told you have a local anaesthetic and you can't feel anything other than the initial needle which is only like a canula - how long will I have to grit my teeth for? and does it get in the way at all with normal day to day things like shopping bags, hooovering etc?

The day unit have said that I can go there to have it flushed if the district nurse is unavailable. It would seem like the sensible option to have it put in but I can't think straight really and I'm a bit nervous. I'm usually good at solving problems! but this is a different ball game :-(

Thanks

Gina

Jo

Sorry to keep harping on about this I hate worrying but I cant help it. I've just been to my physio appt for the cording in my left arm and I mentioned the vein fiasco. She said that although she's not 'qualified' to advise she has seen it before and said that I should go to the unit whilst I was there. So I duly did - I'm getting much better at doing what I'm told as a result of all this! and I brought up the PICC line option. They said yes, that would help - I wasn't offered though, had to ask! - and they have kept a slot for me to be fitted with one on Monday morning pending approval from my oncologist who I see tomorrow. From what you've said it would seem to be a bit of very useful plumbing ;-) can you reassure me that insertion is not particularly painful? I'm told you have a local anaesthetic and you can't feel anything other than the initial needle which is only like a canula - how long will I have to grit my teeth for? and does it get in the way at all with normal day to day things like shopping bags, hooovering etc?

The day unit have said that I can go there to have it flushed if the district nurse is unavailable. It would seem like the sensible option to have it put in but I can't think straight really and I'm a bit nervous. I'm usually good at solving problems! but this is a different ball game :-(

Thanks

Gina

Hi Gina,

You're not harping on at all! We all have big decisions to make regarding our treatments and if we can use our experiences to support each other, then so much the better!

I can assure you that other than that initial little 'scratch' I felt absolutely nothing. I'm not particularly squeamish, but I chose not to watch the procedure, preferring to look the other way. I was surprised how quickly it was done too!

As for the 'getting in the way' question, the business end of the line was covered with a gauze and then taped down onto my arm. Mine was positioned just above the actual crook of my arm so bending it wasn't an issue.

In the first few days, I was a bit protective of my arm (like you are when you've had an injection) but as time went on I became less protective, but I still remembered it was there so that I didn't catch it. It was in my left (none dominant) arm.

The hospital supplied me with long, waterproof gloves to wear whilst showering/bathing as you shouldn't get the line wet, and I used to wear the glove and secure it at the top of my arm with a hair bobble! I also invested in a plastic sleeve contraption from Boots (a tube with drawstrings at each end that you use to protect a plaster cast) it was £5. But that was just me being ultra cautious. (I'm thinking of using it now to store plastic bags from the supermarket in! It looks like that sort of thing!)

With hoovering, the nurses advised not to do 'repetitious' sort of movements with the PICC line arm, but I just hoovered with the other arm.  Same with the shopping bag - I have a short strap handbag so I just put it on the other arm - I'm right handed anyway.

I hope this is helpful, Gina. The nursing staff will go through it all with you and give you more detail than I have, but it enabled me to have treatment at home, plus no more canulas and the fortnightly 'hunt the vein' game!

Please let me know how you get on.

Take care, Jo xx

Hi Gina

It looks like you have received some great advice on this thread. I just thought I would link you to our patient information on PICC lines in case it answers any questions you may have.

Don't forget too that you can call our nurses for a chat about how it might affect you day to day.

You can contact them on: 0808 800 4040 from Monday to Friday, 9am to 5pm.

Calls are free from UK landlines and most mobile networks.

Best wishes

Jane

That's fantastic, thank you so much you've really helped me :-) advice from nurses is great but to hear it first hand is very reassuring. I'll let you know how it all goes but I have to say I'm not worried now, thanks to you :-)

Gina xx

Hi Gina,

You are very welcome. The nurses will also explain the possible 'down sides' to it (things to look out for like infection around the entry site etc) and at first I confess to being a bit paranoid about it, especially as my partner was doing the flushing and dressings!! I soon relaxed though and had no problems.

Jo xx

Hi Jo

Well that was an interesting day! The specialist nurses I spoke to about the PICC line asked me who my consultant was and told me that she is the only one of them all who is not keen on them. So that made me feel better - she didn't say no, at least. And the nurses were lovely. It was a bit of an experience, I got a heart palpitation while they were putting it in and that made me panic a bit.  I'm a worrier so it was probably just anxiety, although I'm still aware of an irregular heartbeat - but that could be the drugs. Which while I'm on the subject, went in like a dream :-) right decision!!

I've got a big goodie bag of dressings etc and the district nurse is coming tomorrow. I'm still aware there's something there but it did bleed quite a bit so it will probably settle down in the next few days.

My daughter Sophie is paying me a flying visit from Uni on Thursday so hopefully any side effects will have faded a little by then. Although I'm almost scared to say I'm not feeling too bad at the moment so here's hoping it will be an easier ride than previous sessions :-)

The weather has been lovely today, I hope we get a bit more sunshine from now on, it makes us feel so much better. I'd like to get out for a decent walk as soon as I'm back up to speed this week.

Half way through... whahey! Heard some not-so-nice things about Taxotere so I'll probably be asking questions as my FOURTH session approaches, but for now I'm as happy with the world as I can be.

I hope all is well with you Jo, lots of love

Gina xx

Hi Gina,

So glad to read your latest post and that the picc procedure went ok - though I can imagine that the heart palpitation would have caused you a little panic.

I know what you mean about the goody bag! My partner was given extra pairs of sterile gloves as he has big hands, so we still have a few spares in the medicine cupboard!

We had good weather here today too, but I couldnt really enjoy it and get out walking as it was my first day back at work after 6 months off!

I'm having a phased return, so hopefully I'll manage to get to Thursday afternoon without falling asleep under the desk!

Enjoy your daughter's visit on Thursday (I have a Sophie too!   ) and I'm sure you'll be feeling even better by then; it's great to read how 'up' you're feeling.

Take care, Gina and please keep in touch with how things are going,

Love and hugs, Jo xx

Hi Jo

Wow back to work! what a step towards 'normality' for you! I hope it's not too exhausting a week. I am hoping to be in your situation by July all being well, thought I might be able to juggle radiotherapy with a phased return but on reflection and reading that it can be quite tiring I think I'll wait till it is done and dusted. It's only that my six months full pay is up in June but money isn't the only consideration here is it? And my biggest hope is that the treatment can be all wrapped up by mid July as that's my 50th birthday - what a celebration I will have if the timing works out!

I've had an uppy-downy couple of days, was on a bit of a high after Monday and so pleased not to be feeling too many side effects. But the cold that started last week took hold over the weekend and I ended up with a really bad cough which I was concerned about and the chest pain wasn't going away so I called the unit this morning and went in to be checked over. They pulled the line out by 2cm as they said it may be in just that little bit too far, not uncommon apparently and can cause irritation. Got some antibiotics for the cough and came away happier. Three hours out of the house has wiped me out though so I've had an afternoon on the sofa!

Go steady and pace yourself whilst you adjust to your new routine. It's so important not to do too much although the fact that you can ease yourself in says you have an understanding employer which is invaluable.

Love Gina xx

Hi Gina,

I think you're very sensible to wait until after your radiotherapy finishes before you head back to work. From a practical point of view, I would have had to go into work 'late' every day for the 5 weeks of my treatment. But it did make me tired and also my skin became very sore (pelvic radiotherapy) and I was literally unable to sit down for a fair few days! Seems funny looking back, but not so at the time!

I really hope your treatments will all be done and dusted for your special birthday in July! What a fantastic month to have a birthday! My 50th is early next year! Not exactly BBQ party weather!

Well, I've made it to Wednesday and actually taught all day today! I confess to feeling whacked though! Only a half day tomorrow, but it's World Book Day,  so the staff and children are dressing up! I'm going as Mummy Bear! Very easy with a bear onesie and a floral pinny haha!

Probably not the best costume choice for a menopausal women though!

So sorry that you're not feeling on top form. I hope the antibiotics soon kick in and your cough eases.

How was your daughter's flying visit? Or did you have to cancel with your medical appointments?  (glad you got your line checked though)

I'm not surprised you were wiped out this afternoon! The trip out, plus the cough and cold will be taking its toll, so give in to your body and if it says 'rest' don't fight it!

I'm taking some of my own advice and settling on the sofa for a few TV programmes (if the eyelids hold up!)

Take care, Gina, and hope to chat soon,

Love Jo xx

Hi Jo

Hope you are getting the chance to recharge those batteries over the wekend.  How did Mummy Bear go down at school? I think I would struggle with the toillet breaks, stuck in a onesie all day!

So much for my positivity this week! I nose dived on Thursday unfortunately. I don't know whether it was side effects, flu symptoms or what it was but I started to feel really achey, which I have read about but had not until then had any experience of - luckily, it would seem! I managed to get through the day and spent some time with Sophie, which was lovely - she is putting all her efforts into trying to get a placement next year to complement her Uni course. She does think about me but I'm glad that she has so much going on as I don't want her to dwell on things too much - she told me that she doesn't worry too much as I have reassured her that it's all under control - how did I manage that, I wonder, and why can't I reassure myself!!

Anyway I woke up on Friday and literally couldn't move - I know you will have read all this before Jo! but it's a blow to cope with yet another unexpected side effect. The three sessions I have had so far have all been entirely different. Not easy to prepare for emotionally and I have to admit to being a bit of a zombie yesterday. In some ways being on your own is easier because you can shut yourself away and not have to pretend you're better than you are, but in other ways it's tough without a little bit of support. My friend brought me 'meals on wheels' at teatime which was a godsend - she was my guardian angel.

But today is better :-) I am going to spend the weekend getting my strength back up and hopefully can try and pick up some normal activities next week, the weather seems to be getting better too.

On the plus side, no problems with the PICC :-) and I'm going to start looking at flights this week as I'm hoping to be visiting my stepsister in Portugal in September - she retired out there a while ago and we skype a lot but \i've never been.

Something to look forward to :-)

Enjoy the rest of the weekend and hope to hear from you soon :-)

Love, Gina xx

Hi Gina,

I'm really sorry to read how you've been feeling. I wasn't aware of the side effects you are experiencing - presumably different types of chemo brings different side effects and the oncologists only alert you to the ones you are likely to encounter?

Although as you say, it may be unrelated to the treatment and you have a virus of some sort. I hope you soon start to feel better - this weather should help raise all our spirits

Your Sophie's approach to your illness sounds a lot like my Sophie's. We've obviously done a good job with our girls hehe!

I've recently adopted my Sophie's philosophy of 'Not worrying about things outside of my control' and I am getting better at it. Wish I'd practised it sooner!

I managed to get through work and Mummy bear was a great hit! Especially as there was a baby bear and Goldilocks in the class I was in!

I was 'knowledgeably' informed by Goldilocks that "Daddy Bear must be out hunting!"

Your friend does sound like a guardian angel! How thoughtful to bring you a meal. I hope you feel able to ask for support from friends. (asking for help is something I struggle with.)

I hope you have a better week and manage to gain some strength, but take it steady; Something I'm trying to remember as I head back to work tomorrow!

I always tend to try to run before walking!

Happy flight hunting too! I've never been to Portugal either. It's always a bonus having family living in other countries as they can show you the sights!

Well, I'm beginning to struggle putting sentences together and I don't want to subject you to indecipherable tripe so I'll sign out. (I can't blame my wooly head on the chemo anymore!   )

Take care, Gina, and enjoy some sunshine, chat soon,

Love Jo xx