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Format for the update posts:
I plan to stick to a similar format each time for these update posts so you can find your way around easily. The core aim is to let people know how I’m doing as the treatment for Myeloma unfolds, to talk about key medical milestones, challenges experienced and whether it has been a good or tough week overall. Other aims are to let you know what the experiences have been, how they have felt and how I’ve coped (or not) and the stuff I have done and used to keep going.
I’ll start with Music. Music that has popped up over the week or that I’ve sought out to keep me going. This will be followed by the medical update. Then I’ll share the experiences, realities of the week and hopefully throw in a few funnies and highlights from beyond the cancer world. Near the end, I’ll highlight the psychological strategies, techniques and psychoeducation I’ve drawn on to help me look after myself, manage what’s happening to me and helped me endeavour to maintain my resilience and psychological flexibility. I may finish here or follow up on a point made earlier in the post or let you know what’s coming up next. In between these update posts, I may share shorter posts in response to questions I’ve been asked or key events that warrant their own attention.
I hope this approach works for you. All feedback is welcome.
So here goes, Chemo week one…
Music: 90s yeah! Rhythm is a Dancer, Snap: I’ve got the Power, Black Box, Music Sounds Better with You. Strike it Up. I Feel Love for the First Time.
Week one, day one, up early to hospital for blood tests.
Met the fabulous Dr L and Nurse M.
Everyone happy with my blood test results so given green light to go ahead with Chemo.
Myeloma Presence (Baseline from 17th Feb 17): 17% Plasma Cells, 60-70%infiltration on the trephine (bone marrow test).
Blood summary (for normal levels see picture below):
|Paraprotein (Abnormal one)||91||High|
|Kappa light chain||30.3||High|
|Lambda light chain||2.29||Low|
|White Cell Count||8.72||Normal|
|Absolute Neutrophil Count||6.5||High|
The low down:
Long and smooth day, started at 7.15 and done by 6pm. So relieved when Chemo could go ahead despite my possible bladder infection and need to pee every 15mins! Quite a juggling act. Each time a bag of meds was detached I did a mad dash to the loo so I didn’t have to faff around with taking the drip line with me! I’ll explain how the chemo works another time for anyone who’s interested.
I have never been so understanding about someone’s pubes on a toilet seat before (people going through chemo often lose hair) though do wish they’d read the sign and improvise. That is, wipe with antiseptic after use. Hard to do when no antiseptic wipes were provided and the sign saying to use them is in the wrong place on the back of the door instead of directly ahead of you as you move towards the loo. This was my main bug bear of the day and I will feedback gently. Yet the previous person could have used some soap in loo paper and that would have done the job!
This is turning into a lower bits focus. Felt so good after Chemo, Si and I went down to whoop and holler at our netball team (so hard to not play) and then went out to the pub. Fab people, loads of topics and lots of laughs. We found ourselves sharing our contraception irony…on the trial and when on chemo the last thing the medical team want is for a patient to get pregnant (they’d have to come off the trial, couldn’t get the trial meds wanted, big decisions for patient, birth abnormalities likely). So, even though Si and I have not used contraception since 2007 (!), and have only been pregnant twice very briefly (implant difficulties and a whole other blog needed) we now have to use multiple protection; condoms and a diaphragm with spermicide. Hilarious. Ironic. Oh and the trial team make you sign up to this!
Anyway, the discussion in the pub turned to condoms. The debate was on about who should carry them and when. The males around the table were a firm “NO”, guys should never carry; condoms should always be available at whoever’s place the couple wanting sex end up. I asked “what about spontaneity?” and suggested both parties should carry two condoms. Then F and W pointed out that condoms have inevitably expired and gone manky by the time they are needed and if they are fresh … you wonder how much sex this person is getting?!
Which type to get also sparked a fever: don’t go for those “real life knobbly ones” was the cry – “they’re awful”. Si confessed to being bamboozled by the array of flavours (I thought you’d be so lucky mate!). I laughed about our different purchasing decisions – I’d come home with ‘reals’ and Si had come home with ‘super safe’. Now, he’d never been boring, so I’d clocked that up to him ‘doing the right thing’. The laughs were finally summed up by W saying “yeah, here’s your blog for today, Janine. You should call it Janine on Johnnies; and podcast it!”
Psychology, two points:
It is very, totally and always ok to ask any question and share any concerns with medical staff. If they seem irritated or rushed, stay calm, be kind (they are working very hard, over very long hours and doing the best they can; they have bad days too). Then gently insist on their help to get questions answered and concerns aired and heard. Even if they don’t know answers then and there, they may go away and come back with an answer and if they don’t come back, ask the next person. You are the expert in your body and feelings. It is your right to take the best care of your body possible.
If you find it hard to ask, consider asking a wonderfully calm yet confident friend to go with you. Make a list of queries and ask your friend to raise them for you, in front of you so you can hear all answers and ask more if needed. For example, ask if there is an alternative to the drug they have given you, if the drug is in a substance like lactose that you don’t get on with well. There may not be a viable alternative but at least you will know you have done the best thing you could to support yourself or there may be a great alternative and you have just helped your body have one less thing to deal with.
Feel free to ask a nurse why he/she isn’t putting gloves on before he/she puts a cannula in your arm. It’s ok. It’s your arm, your immune system you are trying to help. A good nurse will explain that they may have just washed their hands or go and do it again in front of you or put on the gloves (some nurses wash hands rather than wear gloves before inserting needles so that they have more fingertip control over the needle).
Don’t be afraid to chase up whether a test result is back, ask for copies of all results and make it clear whether you want to know a result now (subject to whether your doctors need you to know). For instance, my Chromosome test was taking ages to come back. I thought it had been lost and I would have to do it again (not fun as this would mean an extra bone marrow biopsy). As the result would not change the first round of treatment (but could have a bearing on prognosis and length of life outcome) I asked staff to make sure the test had come back but not to tell me the result at this stage (unless I needed to know for medical reasons). I did this because I really wanted to sit in ‘everything is going to go really well’ and ‘my first round of treatment is going to be a huge success’. I didn’t want a less than favourable result that I didn’t need to know at this time undermining that thought position. I explained this and the staff understood straight away.
I recommend you be social when you can (though don’t stay longer than you need if tired) and find your voice with your medical and friendship/family support teams or have a good friend be your voice for you, in front of you.
Ending as I began, talking about ‘lower bits’:
Getting hold of the diaphragm was a whole other saga. My consultant team didn’t know how to get one. The GP had to make a phone call and come back to me. After three hours in the sexual health and family planning clinic, the doc said “we really don’t offer these anymore as there are much more effective and easier forms of contraception”. I said, “I know, I know but I have had to sign up for this”. After hunting through the stock cupboard, she produced a diaphragm. I sighed with relief – at least we can have a sex life now!
Well, thinking about it, sex might be classed as a contact sport, which I’ve been banned from doing! Stuff that! I’m not going the whole time of treatment, the better part of this year, without making love to my husband! Bring on the double barriers!!!
Copy Editor: Stephanie Kemp
Images: Me & Hubby, FreeImages.com
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