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,

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

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 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

Hi Gina,

Just wondering how you are?

Hope you're feeling a bit better and you've been able to do a few things this week.

This spring weather has certainly brightened my spirits

Take care, hugs, Jo xx

Hi Jo

Yes the sunshine definitely makes a difference - as does being a week into my cycle! I have decided that whatever hit me last week was a virus and not the chemotherapy - I have heard of many people recently with coughs and sore throats who have been struggling. I am feeling better in respect of the treatment :-) but my throat is really sore still and I cough like a trooper all evening and don't get much sleep unless I'm sitting up which is not great, but it's nothing in the grand scheme of things.

I am back on form now having had a bit of a low start to the week - I have been thinking about you but couldn't raise the motivation to reply until now - apologies! Sophie has now secured a placement for next year, I'm very happy for her that her efforts have been rewarded :-) it is disconcerting to receive knockback after knockback when trying so hard. Finding good opportunities in the current climate is so hard for young adults - I am involved with apprentice recruitment and training (which is very rewarding), and the competition is so tough you really have to stand out to be noticed. It's a job in itself to find a job!

I'm not really doing very much worth a mention at the moment, just daily walks around the village to keep active and the occasional lunch with friends - but it's enough. I have signed up for the 5K race for life in July as I should have regained my stamina by then - walking or jogging, we'll have to see! My friend who was, by sad coincidence, diagnosed with lymphoma a week after my own diagnosis, is doing it with me. She has not needed any treatment as yet thankfully but is high risk, and has been told she's a bit of a ticking time bomb - not an easy thing to get one's head around as we are all aware. And Sophie is joining me too - Rob (my son) is most put out that it's a ladies only charity and has resolved to find his own fundraising activity!

How is week two? have you found it hard going? And Jo do you know the next steps of your treatment yet or are you waiting to  hear? It is the hardest thing to put things this significant on a 'back burner' but I imagine if you feel relatively strong that a classroom of young children is as good a place as any to lose yourself for a while.

Steak tonight, to get those red blood cells boosted!

Enjoy the warmer weather and chat soon

Gina xx

Hi Gina

Good to hear that you are upbeat and got a few lovely things planned, and chemo is less problematic with the PICC line.

I've got a bit of a cold at the moment too, hopefully it will be out of the way before my third chemo on Wednesday.  I had a long weekend away in Bruges last weekend in lovely sunshine, and it always seems to me that I am more likely to land a cold when there is a significant change in the weather. I'm a bit wary about blood counts etc the further I go along the chemo track, so Monday is the red letter day, meantime like you I'm eating right.

I'm also up for the Race for Life, which is to be held in June locally, and I'm planning to do it in whatever way my body can deal with.  Hopefully I'll be through to June without having surgery on my leg otherwise it is going to be a long haul on crutches! I've been adding friends to my team so we are 7 strong now and they are willing volunteers - honest!, and like you I also have some male supporters who would have loved to join in with us so I have gently explained it is the pink T shirt brigade (of course that in itself wouldn't faze some men at all).  Cancer research does seem to be a cause which is close to so many people's hearts.

Best wishes

Gill x

Hi Gill

I'm so pleased you had a lovely weekend in Bruges - I did think of you :-) can't wait to do something myself but I'm not brave enough to make plans out of the county at the moment! Still, I'm now almost at the halfway point in my chemotherapy :-) so I am telling myself that come May 6 (last one!!) I will arrange to do something - even if it's just a weekend by the sea, or a trip to the Lakes. I firmly believe that having nice things on the calendar keeps me going!

Having said that, this disease has a nasty habit of interfering with people's plans hasn't it - I really hope you are able to complete your race for life challenge. You are much more knowledgeable than I am on what to eat Gill, although truth is I know enough -  I'm just not the best at eating the right things! I've been blessed with good health until now and been lazy with my nutrition - particularly now the children are older and it's just me. So I know I need to up my game when I'm back on my feet after all this - got to start taking more care of this body of mine! My 50th year is a completely new start in many ways for me.

Lovely to hear from you, hopefully you can shift your cold over the weekend, I think the weather is set fair :-). All the best for next Wednesday, I hope you are not affected by any of those nasty side effects and it is manageable for you.

Love Gina xx

Hi Gina,

Glad  to read you're back on form. And you're nearly half way there with your chemo! It's amazing how soon the time goes, especially after the half way mark. The finishing line seems to come into view pretty quickly after that!

I hope you didn't feel 'stalked' by my additional post - no apology necessary for not replying sooner,  I just wanted you to know I was thinking about you.

It's great that your Sophie has now secured a placement. I know a few young adults (friends children) who have struggled to 'move on' with the next steps of their education / working life - and not through any lack of trying on their part! It really does seem tough at the moment. Your job certainly sounds a rewarding one, though I'm guessing, frustrating sometimes?

It's taken my Sophie 3 years (post-grad) to get on her chosen career path, course! But that's her sorted now for the next two and a half years! My perpetual student daughter!

My son (coincidently, also a Rob!) is in his final year at Uni. Hopefully, he's got his head in a book as he's in the midst of final exams! His approach to learning is much more laid back than his sister's! He has absolutely no idea what he wants to do when he graduates!

Race For Life eh? Good for you! I've done it a couple of times, but many years ago! It's great that your friend and Sophie are doing it with you. I did it with friends and the commeradery (sp?) was brilliant - even though they did run faster than me!

Well, two weeks at work ticked off! I did struggle with the sniffles at the end of the week though! In reality, I could have done with Thursday in bed, but I didn't think it would have looked too good, ringing in sick! Hehe!

I self medicated a medicinal sherry! It seemed to do the trick - I slept all night and woke up on Friday feeling brighter, though still with a red nose!

Not sure whether that was from the constant wiping or the sherry!

My boss has willingly authorised another 'phased' week next week - almost back up to full time, but 2 half days off! It's then only 3 weeks until we break up for Easter!

You kindly asked about my next treatment plan. I've just had a date through for my next MRI scan (Easter Saturday at 6.00 pm) What a strange date and time! I've had weekend appointments before, but I presumed there would be no appointments over the Easter weekend!

This has slightly scuppered my plan about not telling my family when my appt was (I know they worry and I wanted to protect them from too many weeks of fretting!) My mum is likely to invite us to stay for Easter, so I'll either have to tell a little white lie, or just tell them about the scan!

Still got a few weeks to be 'vague' yet!

This scan will be the decider as to whether I can have a liver resection op - or not! The magic number is 3! If there are still only 3 tumours present (last scan showed 3) I will have an operation. If more tumours have developed, we may have to look at alternatives! Not sure what they are yet! Chemo is not an option as I showed an intolerance to it - one of the 5% who do!   (Apologies if I've said all this in previous posts!)

There is so much that is up in the air at the moment, hence the 'Going back to work' strategy! Keep my mind full of literacy, numeracy and children's chatter! Rather than the dark 'what ifs?' But I'm not worrying as it's out of my control! Que sera, sera and all that!

Well, it's dull but dry here, so I'm planning an hour or two in the garden. My partner power hosed the patio yesterday so its gleaming appearance has inspired me to make the rest of the garden look as impressive! Though Alan Titchmarsh I'm not!

Enjoy your weekend, Gina. Hope it involves a gentle walk and some lunch with friends or family!

And there's no rush to reply!

Love and hugs to you, Jo xx

Hi Jo!

I think I've finally shifted this cough/cold after three weeks! I've been trying to lead an almost normal life this week, lunches out, canal walks and manicures! And there's you back to full time next week! I hope you are 'phased in' and will be able to stay on top of everything for three more weeks - Easter is a busy time.

Easter Saturday IS a strange time to have a scan - but I suppose it's not significant in the hospital calendar. I'm sure it's preying on your mind but your routine will help you hold on. Have you fessed up to the family yet? I really hope you get a good result Jo - neither is an enviable outcome but to know it can be controlled will be such a boost.

Sophie AND Rob??? that is a spooky coincidence! And they sound similar in character too - I'm so proud of mine - seems as you have said before, that we did a good job!!

I am meeting my dad and his partner for lunch today, they have been in Cape Town for their annual two month disappearing trick to avoid the British winter - all right for some! So he has been completely unaware of what I have been going through. If he tries to be concerned and sympathetic I'm afraid he might get a mouthful! even if he is 77.

It's lovely to have someone to keep in touch with Jo so don't think you're stalking me! I'm trying not to think about next week because I know it will be rubbish, but at least then I will be on the downward slope and next time I see the oncologist (in three weeks) we will be talking about radiotherapy! If that's not a sign that the chemo is coming to an end then I don't know what is!

Take care and keep on keeping on. We are good at that.

Love Gina xx

Hi Gill

I hope  your chemo session went okay and you are not suffering too much, I have been thinking about you. I saw my oncologist on Friday and I'm all set for round 4 on Monday, I always refer to it that way as it feels like a boxing match - I WILL win, but I'm getting bashed about a bit in the process! The nurses have told me not to Google so much as I know too many negative side effects of the dreaded Taxotere! so I have decided I'm not thinking about it any more!

I have booked tickets to see Dawn French in June :-) think I'll be more than ready for a night out and a giggle by then, and to celebrate the end of my chemo all being well! so my calendar now has something on it for June, July (Race) and September (Portugal)!  :-)

Take care of yourself Gill and chat when you can.

Love Gina xx

Hi Gina,

I hope you had a good lunch with your dad and his partner and you didn't need to tell him off!

How are things going this week? I know you were anticipating a bad week ( I remember chemo being a case of a bad week, an ok week and a good week, then back to bad again!)

Sorry I'm not writing very inspirational prose, I think I've used up all my energy in the classroom, keeping 30 little 'sponges' on task!

My eyelids are already drooping and the Emmerdale credits haven't even run yet!

Bed seems a very welcome prospect! Hot chocolate and The Great British Sewing Bee! How sad am I?

Keep smiling, lovely lady. Don't feel you have to reply, just know I'm thinking about you!

Love and hugs to you, Jo xx