Date changes & details

I’ve just had a call from Sarah at the hospital.

The first date the Radiology department can fit my Hickman line is Wed 15 June. This means that the whole stem cell harvest process needs to be put back one week. So for those of you who want to know, here is my new June diary:

Mon 13 June: Start using the antimicrobial wash and nasal cream

Wed 15 June: Hickman line inserted. I have to get to the hospital for 08:30! And I will probably go home feeling a bit bruised.

Thu 16 June: Bone marrow biopsy from my pelvis, followed by an hour of receiving chemotherapy via my new line, plus 24 hours of receiving fluids and a drug called Mesna, which protects my kidneys from the effects of the chemo.

Tue 21 June: Start the GCSF growth factor injections daily under the skin of my stomach.

Mon 27 June: Blood check to see if there are enough stem cells in my blood to harvest. Apparently, with myeloma patients it can take a little longer for the stem cells to appear, so I may have to go back the next day. If there are enough, I get harvested – 3-4 hours hooked up to a machine. If not, another GCSF injection that day and return the following day for a repeat performance.

Thu 7 July: Appointment with Dr Jenny Byrne to review the harvest and confirm the date for the high dose chemo and transplant.

Mon 11 July with any luck: Go into hospital for the high dose chemo and transplant. If I do go in on this day, I should be out of hospital for my birthday (28 July), albeit feeling rough and tired and probably not very celebratory, except to be alive! 😉

If there is no bed available on 11 July, then I will go in on 18 July. That means I will be in hospital on my birthday, feeling even rougher still! But I have to focus on the positive – this whole process will be extending my life. A fair exchange, don’t you think?

Once I’m in hospital, I will receive the high dose chemotherapy (melphalan) on the Tuesday, followed by the transplant of my stem cells on the Wednesday. In response to the chemotherapy, I have been assured that I will lose my hair and will quite likely experience vomiting and severe diarrhoea.

Around the weekend, my blood count will drop, so that’s when I will start to feel really rough and am quite likely to contract an infection and have a temperature. They wait for my blood count to start coming back up (0.5 is the marker they wait for) before they send me home. This usually starts to happen the following weekend or Monday. They don’t send people home over the weekend, so if my blood count is up by the second Friday, they’ll send me home then, but if not, I will be in until the Monday or Tuesday of the following week.

I have been advised that as I will be very susceptible to infection and feeling very tired and weak, visitors are discouraged. I really can’t see me being in the mood to chat or listen, in fact with any luck I may just sleep for most of the time. So all you lovely visiting types may want to save up for when I get home and feel up to receiving you.

And please, please, please no one tell me how brave I’m being! Apart from giving up, I don’t have a choice. I think courage is when you choose to do something you’re scared about, not when you have to do it. Courage really doesn’t come into it. But I aim to face this experience with as much composure as I can muster.

Initially I was told I would be in for 10-14 days. It seems that is the best case scenario. I wish they’d been completely straight with me from the outset. It’s not like I would have said, “Oh well, if I have to be in for 17 days, I’m not doing it.” It looks like it’s more likely to be 15-17 days. With any luck I will leave hospital a day or two before my birthday.

I also spoke to the kidney consultant today and he’s very happy with my results. The severe kidney disease I had (caused by the myeloma) is now only moderate kidney disease. For the geeks amongst you, my GFR is up to 33, which puts me in Stage 3, rather than Stage 4. This is good news! He also said I don’t need to keep taking calcium. Yet another pill I no longer have to take. Hurray!

I am now only taking vitamins/supplements by choice – nothing from the doctors, apart from paracetamol for pain relief. I am off all the heavy medication now until I go into hospital. This means about 6 weeks of feeling pretty good before they virtually kill me off and start again.

The family party can happily go ahead on 3 or 4 July, with a lively, reasonably healthy and hopefully composed and not overly distracted me!

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4 Responses to Date changes & details

  1. Thanks for the update, Jet. I completely understand what you’re saying about not being brave. I did feel as if I had a choice. I tried to let the cancer take it’s course, rather than go through all the medicalisation. In the end the cowardice got me and i swerved into treatment. I’m glad now that I did, but there were times when I wondered if I’d just sold out. You sound pretty certain that you’re doing the right thing. I respect you for that.

    If you’ve got the time and energy for a chat at some point soon, I’d like to offer some support. I’ve got a few days off work, and although my diary’s pretty full, this is important, so I’ll try to find an hour for you. But I think I need you to email me and remind me your phone number, and maybe suggest when’s a good time.

    In sisterhood and friendship


  2. Kevin Kirk says:

    Hope this helps as you focus on the positive. You will be having your SCT almost exactly 4 years to the period I had mine. I was told I could be in for 4 to 6 weeks !!!! I was actually in for 17 days. Had very few side effects and achieved full remission. Since then my check ups have gone from every 3 months to 4 months then when I saw my Consultant yesterday he told me there wasn’t the slightest sign of it and would now see me in 6 months. Hope this helps in some way.
    Best wishes


  3. Hi Kevin

    Yes, thank you, that helps a LOT! I don’t know about you, but I already know how bad it might be. Hearing good news from other people who’ve gone through it is very encouraging.

    So here’s one for you… well for both of us… A friend’s mother is now 10 years in remission post-SCT. I intend to call her before I go in, but even just knowing that is extremely hopeful.

    Let’s hope your 6 monthly check-ups go to annually quite soon, with many more years to come. x


  4. Kevin Kirk says:

    Yes, before my SCT I had heard how bad it could be but remember being very positive and not worrying about it and as I said had no major problems. Think my attitude might have helped. On remission I asked how long was the longest he had known – 15 years – told him that was what I was aiming at and then some.
    Best wishes


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