April 19th, 2017 by Janine
My veins are not playing ball. According to one Nurse they are spidery, superficial and collapse as soon as a needle comes near them. This is the accumulation effect of the Carfilzomib drug and not unexpected. I had hoped this side-effect may take a bit longer to kick in but hey I want the drug to work so I will take some of the after effects! For each needle insertion attempt that fails – is it Bad Karma? Maybe for my veering off course with my plans… the odd coffee, sip of alcohol, not enough rest…a fabulous slice of chocolate fudge cake on hubby’s birthday (hey I’m only human!).
On the first day of my veins playing ‘hide and seek’ (Nurse L’s description) and after two Nurses had taken two to three pin cushion moments on my arms (with my permission) they called in K. As he and Simon bantered about K being the ‘big gun’ and having a ‘big probe’, I discovered what K had brought with him was an ultrasound machine, and that he is one of the few (possibly only) Nurse trained on the Chemo day unit) in using ultrasound for finding veins. In that moment, I loved K; he found a vein quickly and had the cannula in my arm in a flash. The hours of trying to find a vein were not in vain!!
So yesterday when Nurse L said, ‘I’ve come to make friends with your veins’ I said ‘absolutely’ thinking that just because it been hard to find them last week didn’t mean it had to be hard again this week. Unfortunately, that was not the case and the ever-cautious Nurse L was wonderful and genuinely sorry it wasn’t going smoothly. My next request was, could we not muck around any further today please, and get K and his ultrasound. This is when I found out K wasn’t in. K of course is allowed a day off (or two!) however I was unimpressed that only one person can use the machine I need. I imagined that given they know of the accumulation effect of Chemo, I am not the first person to have elusive veins.
Nurse G said he was rusty on using the ultrasound but he’d give it a go. He showed me the images of my veins disappearing as soon as a gentle pressure from the probe was applied in my arm. He abandoned it and said he wasn’t confident enough to use it successfully. Good news though; he checked the back of my left arm and said he could see a vein. He checked whether it be ok to try otherwise they would probably have to insert a PICC line. I didn’t want a PICC line before absolutely necessary so I gave the go ahead, hoping like hell it would work. I could have kissed him, straight in, a little sore but the needle didn’t escape the vein; Si and I escaped the Chemo unit by 5pm.
Kicking in to rationale mode, I started thinking;
- It’s not my fault I need an ultrasound, or that only one Nurse seems to be able to do it; I will always need that Nurse to be available on my Chemo days
- The scenario above is not the Chemo Unit Nurses fault
- It is an unacceptable scenario
- I shouldn’t have to have a PICC line earlier than necessary just because it’s convenient for staff
Moving into problem solving mode; I decided I need to
Ask my consultant;
- How to resolve this; is there another nurse from another team who can be scheduled/ available?
- Can K be scheduled for my Chemo days (cover when he’s on leave)
- How quickly can another Nurse be trained to use ultrasound?
Also ask my consultant about below…
- How much does a private Nurse with right skills cost, can they attend NHS site, can they bring ultrasound machine or use NHS equipment (liability, insurance, clinical trial, other
PICC lines are peripherally inserted central catheters (long, flexible tubes) that are put into a large vein above the bend in the elbow, threaded into a vein until the tip sits in a large vein just above the heart. PICC lines can make things easier for Nurses and for me; it means there is always a line into a vein (with a removable cap) that enables a bag of intravenous drugs to be easily attached; there would no longer be a need to poke around with needles to put a cannula in or to take blood.
On the flip side, PICC lines stay in, require a local anaesthetic and chest X-ray (to check positioning) which are no big deal but are more procedures, and insertion may need to be done multiple times to get the right position. PICC lines get in the way of clothing, need cleaning and re-dressing weekly (Mondays would become even busier visits to hospital), the lines stay in for weeks or months, non-Chemo weeks would then involve visits to hospital. Finally, they are another daily reminder that I have cancer and how my life is different now. I knew i would happily have one when it’s necessary; it just doesn’t feel necessary yet when ultrasound searching for veins has worked.
Today was also a case in point for deferring PICC for as long as possible. I kept my arm and hand warm all morning, under two thermals and a glove. Nurse L found a vein first time. Lovely.
I was in and out of hospital in under two hours.
A tough week ended in A GOOD DAY!
Image: Macmillan information sheet on PICC Lines
Illustration (Scaredy Vein): Sapphire Weerakone
© 2017 Janine Hayward www.psychingoutcancer.com. All rights reserved.
Posted in Chemotherapy for Myeloma Tagged with: Cancer, Cannula, Myeloma, Needles, PICC Line, Ultrasound
March 23rd, 2017 by Janine
Music: Fat Boy Slim – Where You Iz (Where you is, is where it’s at, and you can’t beat that with a baseball bat); Far L’amore (awesome dance track from the film The Great Beauty), VCMG Spock.
Full dose Chemo plus new drug by intravenous Zometa (bone builder)
Follow up e-Coli urine test – all clear
Ferritin (iron) levels improved from slight anaemic to within normal range
|| 79 N
|| 35 N
| Kappa Light Chain
| Lamba Light Chain
|| 5.7 N
|| 2.20 N
| White Cells
|| 2.59 L
|| No, as expected (AE)
| Haemoglobin (Hb.)
|| 111 L
|| No, AE
|| 243 N
|| 1.11 L
Day one this week went pretty smoothly. S came and kept me company and we talked about her trip to Norway over the weekend. By 5pm I was very tired and my back around my weak T7 area (mid back) was sore though not hugely so. My slightly swollen ankles, dry eyes with eyelids sticking to the eyeballs didn’t phase me; eye drops and putting my feet up for a while helped with those. The coconut water added to my water bottles during and post chemo also seemed to prevent the headaches of last week. So, all good.
Day two was a slightly different prospect and once again I needed to find my voice. I’d been awake at 1am, 2.30am, and 3am before eventually getting up at 4.10am. The lack of sleep and waking up soaked through probably reduced my patience and tolerance level for the whole day. The rest of the day had started well; raced up for early blood test at 7.30, raced to get the lovely K to work his magic on my hair (why not have perfect hair for the last day of chemo on your first cycle!) and managed to get back on time for noon and my chemo appointment. Then the fun and games began.
A nurse I hadn’t worked with before tried to put in the cannula. She had trouble finding a vein and I know that can happen as Chemo goes on though I was somewhat sceptical at this stage. My arm and hands were warm so cold wasn’t the culprit. I thought about asking Nurse L to come and do it but thought I should give this new Nurse a go. She was sweet yet apologetic for everything and seemed slightly clumsy. A bad day? After two goes of pushing a needle into me only for it to be a bit painful and no vein was found, I asked if Nurse L could do it. To her credit the first Nurse apologised again and explained it was policy for exactly that to happen, that after two attempts to insert a cannula a different Nurse is asked to try. Interesting, that had not happened last week with another Nurse, G, who had rooted around until he found a vein on the third attempt. I would not let that happen again.
Nurse L came over and using the back of my arm got the cannula in first time, pain free. Got to love that woman. Next, when the original Nurse came to change one of the intravenous bags over, the cannula-to-bag connection broke (this had never happened before). Once again to her credit she apologised and explained saying the line may still have worked but to be safe she had replaced the whole line (fortunately the cannula could stay in place). I made a note to ask for Nurse L, Amy or M next time.
How often do you look at your poo or the paper you wipe your bum with? Who has time? Well I seem to be doing this a bit more, fortunately or unfortunately depending on your point of view. This week at about 5pm on day two, I spotted blood, quite a lot of bright blood on the paper and then in my stool. This concerned me, I so didn’t want to have an infection that would stop me doing this trip of a lifetime to Canada. I decided to see if it stuck around or went away. My temperature was fine so I didn’t panic immediately.
Evening snooze and Steroids were working their magic so I was still awake most of the night and eventually went to bed at 4.30am. Got up at 8am. Temperature was still fine but blood was still there. Felt cold and shivery flu like muscle ache symptoms but I’d been warned this might happen thanks to the Zometa so no panic there and felt better by 10am. Finally called the on-call Haematology Registrar at Kings and they suggested a watch and wait approach too so all fine. The blood had stoped after another day.
That may be because my body had bigger fish to fry; like killing cancer and hey maybe some nasty cancer cells went out with the blood. Now that was a nice thought. Ha, here you go nasties – ejected from Janine’s body forthwith, never to return, thank you! Die. Die. Die. I started singing my little ditty; “I’m killing cancer cells and saying sorry to the good cells that have to go with them”. It always cheers me up though I’m getting sick of the Nashville twang version. Might try rapping it next.
Extra supplies and tips for travel
Because my immunity is lower than usual I had been emailing and speaking to Dr L about how to look after myself while travelling and away. He sorted a prescription with some back up alternative antibiotics in case I got an infection and suggested I got loperamide in case of diarrhoea, paracetamol and also plasters to cover any small wounds. Sorted.
We also talked about masks. He explained that wearing a mask was very considerate of me regarding others though wouldn’t help me much. When someone sneezes or coughs and shares germs, it’s the tiny molecules at the end of the spray that get everyone and they are small enough to pass through a mask. I said I’d double up the masks. Dr L laughed and said “I’d rather you could breath!”. He did make some suggestions about how to adjust the aircon on the plane if I did find myself unable to move away from a germy splutterer which were helpful. He insisted the main thing was that I didn’t get cold, or pick up a cold or virus and he emphasised that I would be more vulnerable to this happening as the Chemo worked its way around my immune system. I tried to reassure him that I would take every precaution possible.
We said goodbye to S. It was time. Her hubby was missing her badly and his birthday was imminent. It was so good to have her here and she helped make the first month of Chemo bearable. Thank you Universe for aligning her visit with my need for extra special bestie help and support. Thank you S for making the longer stay happen. D, thanks for sharing her!
Psychology – Asking for Help
Asking for help is a strength. It is not a weakness. Asking for help does not mean you are weak or needy or less than; it means you are human. People need help to achieve big goals in life. The tennis player doesn’t reach his local team champs or the final of Wimbledon without the support of the person who had taught him/her to play tennis in the first place or the person who continues to help him/her play week in and week out, now; a coach, a tennis racquet stringer, an opponent. Many, many people help contribute to one person’s goals in life.
When you have a difficulty, big or small, asking for help is a powerful message and gift for others as well as for yourself. It lets people know they can contribute to you and that it is also OK for them to ask for help when they need it. You will not burden them; you can ask for help in a very specific way, with clarity about what you need and in a way that leaves them informed and free to choose. If they experience a feeling of burden, that is not your concern, it is their experience, and one they would need to manage by finding their boundaries and voicing them (in the same way you could if you had said yes to helping someone).
If you are open and honest with the people you are asking for help from, and clear about how you would like them to help, then it is up to them to manage themselves if they say yes to helping. So ask for help, especially if you are going through a complex health challenge like Cancer. You can ask friends, neighbours, family, medical professionals, your GP; ask to be referred to a psychologist, nutritionist, physiotherapist if you feel that would help you meet a need.
I have asked a friend to stay longer, to carry my urine, to research nutrition. I have asked my husband to help me to speak to my parents about the best time for them to visit and asked him to help me stick to who I want to be through this stage of the Cancer process. I have asked my consultant to answer seven questions at the beginning of each week of Chemo. I have asked the MacmIllan team for help getting referrals to learn about financial entitlements, access to massage and for a place to sleep between tests. I have asked friends to leave any sadness at the door. I have asked neighbours for referrals to a nutrition therapist and to take in parcels of books and food. I have asked my consultant for a referral to a psychologist and a dietician. I have asked friends to meet, to not meet, to forgive me if I’m not quick to respond to emails.
I HAVE ASKED FOR HELP. HELP has been forthcoming from every angle. People often want to help and you can make it easy for them by letting them know what help you need. My asking has not been met with annoyance or judgement but with thanks and love. If you ask people to help in ways that you know play to their strengths then you make it even easier for people to help you though don’t let that stop you either, just ask. If they can’t help or don’t know how to help in the way you are requesting, it is up to them to say No or suggest an alternative way of helping that may meet your need and match what they can offer.
The right people around you, at the right time, with the right help for you and your needs, can be a significant and positive part of the healing process, so why should you miss out on that?
Images: Stephanie Kemp and Nurse L
Posted in Chemotherapy for Myeloma, Psychology for Cancer, Symptoms and Side Effects Tagged with: Asking for help, Cancer, Cannula, Chemotherapy, Myeloma, Psychology, Zometa