Hello

[sezzie27]

It's Friday night and at 27 I would normally be out with my friends but instead I am enjoying it at home after being in isolation for 5 weeks. I wanted to see if there was anyone a similar age going through this as I haven't met anybody yet and feel like sharing experiences could help. I have APL Leukemia which is a rare type under the AML family. I have finished my first round of chemo, ready to start my next on Monday.

[Hidden]

Hi sezzie27, nice to meet you! How are you? Isolation must not have been easy. It’s always quite of a shock at the beginning, so much information all in once and then being stuck in hospital for such a long time! How did you cope with your first round of chemo?

[sezzie27 in reply to Hidden]

Yes a big shock it was all rushed but for the best reasons first round was ok but we thought my Hickman line was infected so that came out and since that I’m on my 3rd picc line now . I’ve had a reaction to canulas too . Turns out plastic doesn’t agree with me so I’d say that was the most challenging part for the 1st round .

[Hidden in reply to sezzie27]

Central lines are a great thing but sometimes they can just be a nightmare! Will you have your chemo as an outpatient?

[sezzie27 in reply to Hidden]

I know it was blocked yesterday ! Some enzyme went through in the end and it was fine but I was panicking as I didn't want another line pulled out, I'm so difficult to canulate! Im having second round as an outpatient all being well !

[Hidden]

Hi Sezzie 27

Thanks for your post. I found the sense of isolation, either because I was hospitalized or housebound, at times profound ,but I slowly worked out ways to alleviate this with family and friends. One dear friend, who was an avid party animal would often visit me at 10.00 at night in hospital with food en route to a gig/party and would sit in the doorway of my room - all dressed up in her finery - and chat about where she was going . I slowly began to see this as the world coming to me - even if I could not go out. Friends and family had also got a rota together so that I could phone /skype people - but I also realized that as my immune system was so shot that being out with people was not such a good idea.

My wonderful hick line sister, was also a jazz singer - so in all the lines that she put in- I got to know her song repertoire really well and this procedure became one that was not so draining.

Good luck with your treatment.

[sezzie27 in reply to Hidden]

Hello thanks for your message , reading your profile you have been through a lot . are you making good progress? In my weeks remission I have made the most of going out while I can in quieter places or times of day and it has been so nice to experience normality again. Sounds like you have a great support system like me which makes everything better I can't imagine what its like if you had to face this on your own. That's great and you know you are in good hands too, my Hickman going in was fine but coming out was not pleasant nor my second picc line but my 3rd picc line hurt less than a canula so I am hoping 3rd time lucky! Turns out I'm allergic to plastic and I have really tricky veins to find. Started my second round of chemo yesterday , tiredness has kicked in already.

[mrew]

Very best wishes to you. Hope that everything is going well.

[sezzie27 in reply to mrew]

Many thanks and to you also!

[Hidden]

Hi - thanks for you reply.

A couple of things which helped me with all the interventions - firstly very early on we had to put child cannulas into my veins as they were so beaten up so I always would ask for this prior to cannulation. I also discovered that there were a number of numbing creams which I would have applied prior to the cannulation and realized very early on that some members of staff could pop the cannula in and others I would politely say no to - on the grounds that if they took half an hour to try and get the cannula in and failed it was a waste of everyone's time.

WIth the hickman and central lines I would have a mild tranquilizers prior to the procedure - which helped me to relax. With regards your veins my team had a little gizmo/hand held which would identify the veins that might accept the needle etc. I think that as we go through all the many procedures that we become experts in what works best for both us and the staff that are treating us. Looking back my treatment was co-owned and co-navigated by my team and me.

With the tiredness I would accept knowing that my body needed to rest for as long as it needed to - under the duvet with a good film etc.

Good luck with the rest of your treatment .

[sezzie27 in reply to Hidden]

Thank you I will really remember this when I next need it. I've already cottoned onto asking for the nicest needle possible and thankfully the staff already knew. I've got a bit of a reputation on the haematology ward already. I think I am known as 'the girl with the really really deep veins that you can't find' . The steroids have really stopped my line playing up so if it does come to it I think I will just say I would give those a go rather than be cannulated thank you very much. Exactly you know your body, you know when something isn't right. Its just a matter of going through it all to figure it out. I always get nervous if I see a new nurse or doctor and really feel I need to overly warn them about my veins. Yes the tranquillisers I do help don't they. I am hoping as an outpatient too I have more normal distractions than as an inpatient I would overly focus on pain, panic and worry because there wasn't much else left to do. Thanks for the advice!!!

[Hidden in reply to sezzie27]

Also, most of the outpatient department have a heating pad that can be put on your hand/arm before cannulation so as to warm the area and make veins bigger and more visible. If they don’t, they can put some gauze wet with hot water, it will make the trick. But I hope you won’t need cannula anymore

[Beans-on-toast]

Hi Sezzie 27!

Well done for completing your first round of chemo - in isolation!

You mentioned the Christie in your blog - were you on the palatine ward there?

I had ALL - diagnosed November 2014 and did my first round in isolation there too. I found it tough at times, especially over Christmas but they finally released me after 6 weeks - I was home 6th Jan.

I spent every-other day at the day unit receiving blood products or chemo for the best part of 9 months after that. Days are long, 2 units of blood would take 8 hours, but I would always meet so many interesting people with such inspiring stories to share.

Good luck with cycle 2