Jill's Book Cafe

Hello from the other side … of chemotherapy

 

Emily Dickinson quote

Well it’s been a while since I updated this blog and I think that probably tells you all you need to know about the effects of my change of chemotherapy. My last update was dated the 17th Dec and I had my next chemo on 22nd December. After I’d had my third round of epirubicin and cyclophosphamide I said to my chemo nurse that I wasn’t looking forward to the change as the side effects looked far worse than I’d already experienced. With a straight face (and no nose growth whatsoever) he said, ‘oh no – this one is far worse, the next one is easier’ – what a bloody liar he turned out to be.

If omens are anything to go by, anything that could go wrong, did go wrong, before the fated change of chemo on 22nd. It started the evening before when I checked my appointment card again and spotted I’d been given a chair time earlier than the blood time, this can’t happen as chemo can’t go ahead until they’ve got the blood results. A quick call to The Christie didn’t offer any enlightenment as they couldn’t access my records, they thought the most logical scenario was that the times had been transposed so to get to The Christie for 10 a.m . Of course it wasn’t that simple, when we arrived I was informed I should have been there at 8 a.m. so I was running well late. Even with  fast tracked blood results I didn’t get into the chair (or as it happened this time – a bed) until 2 p.m. No worries I thought, until they informed me my Herceptin injections would also be starting that day and that came with a 6 hour observation period – oh joy. It was to get worse, I thought that as I’d got my Hickman line in, it would be given via the line – silly me! As my oncologist had originally requested it before my line was inserted, it was down to be administered subcutaneously and so they couldn’t go against that instruction – aaaaargh.   The Herceptin injection takes 3-5 minutes (yes minutes) and bloody stings. My saving grace was they had the radio on and it coincided with them playing Enrique Iglesias – cue quick fantasy to take my mind off it – have to say it sort of worked.

Herceptin is a requirement for me, because my cancer is one of the 20% that is HER2 positive, unfortunately these cancers have a tendency to grow faster, are more likely to  spread and also to come back – all good news then!  Herceptin or Trastuzumab is a targeted, adjuvant therapy that blocks the ability of the cancer cells to receive chemical signals that tell the cells to grow. It is given every three weeks, for 18 cycles, so this will carry on until just before Christmas 2018.

Following the injection I was duly hooked up to the drip to take my poison, and thankfully there were no immediate reactions to the chemo. What followed was then a pretty boring 5 hours of lying around – allegedly under observation. I say allegedly because on the odd occasion I had cause to call a nurse (usually because the chemo bag had finished) I was singularly unimpressed with the response time. The junior doctor sat at the desk directly in my eye line and about 10 feet away, didn’t even lift his head – clearly beneath his pay grade to look and make sure it wasn’t an emergency, allergic reaction to the Herceptin.  The biggest excitement of the day was when I started seeing little white blobs out of the corner of my eye ‘running’ across the floor. No-one had heard of that as a side effect so another first for me. I left the hospital at 8 p.m. and was home by 9 p.m. definitely ready for my bed.

The perceived wisdom with Docetaxel (Taxotere) is that the side effects don’t hit for a day or so – well that was spot on, as the tingling in my hands and feet started on Saturday evening, unfortunately this heralded the start of what I didn’t want which was peripheral neuropathy. By Sunday I’d also acquired joint/bone/muscle pain the like of which I’d never felt before – it was agony.  Take paracetamol the literature said – well I might as well have been eating Smarties. By Monday (Christmas Day), I’d dug out the Codeine Phosphate I’d been prescribed after surgery and started to mix that with paracetamol – nothing, didn’t even touch the pain.  By Boxing Day desperation had set in, the pain is not only debilitating, but it also means no sleep and for the first time in this process I just wanted anything to make it stop. I’ve never thankfully been hit by a bus, but if I had, I imagined it would feel like this. Even going to the toilet was fraught because If I sat down I couldn’t get up, my knees just couldn’t stand it. The side effects of the previous chemotherapy, faded into insignificance compared to this. I was also still having my daily stomach injections administered by the District Nurse, and the side effects from this just compounded the pain.  We rang The Christie hotline at 10.30 a.m. and hung on for an hour until we got a reply, which merely suggested we ring 111 – what!! So 3/4 of an hour on the line to 111 before the line went dead and we had to start again. After another hour we got a reply which said they’d pass my details onto a local team. Mid afternoon we got a call back asking for full details of the problem and a promise that we’d get a call back. That call back, when it came, wasn’t worth the wait. At 5.40 p.m. we were told, they had no strong painkillers on site, the chemists were due to close at 6.p.m. so ring a GP tomorrow. The parting shot of – “call us back if things got worse”, should have elicited the response “what would be the bloody point”, but I must have been ill, as I didn’t even have the energy to say that.

At least my GP next day, came up trumps and prescribed Tramadol, which my OH was able to collect for me.  By now, I was also suffering from the usual constipation, which always makes me nauseous, though the difference this time is I was actually sick and that continued for next couple of days, which totally put me off eating. By Friday, the pain had started to ease, it also meant a visit from the District Nurse with the last of my stomach injections and to flush/clean my Hickman line. After the way the week had gone, I should have been forewarned, it transpired my nurse couldn’t flush the line as their was a blockage. A quick call to The Christie and we had to bundle ourselves into the car and drive to Manchester for the blood department to attempt to clear the blockage. Unsurprisingly they managed to flush it, without difficulty so it was back in the car and home from a two and a half hour trip we could have done without. This had not been my best week.

Over the following week, while the main muscle joint pain lessened during the day, it came back with a vengeance at night. The nearest thing I can liken it to is Restless Leg Syndrome and meant I was still taking the Tramadol to try to get some sleep. Other interesting side effects was the loss of my eyelashes, my toe nails turning black, my finger nails becoming ridged and discoloured, chemo cough and nose bleeds – who knew!!

I’d like to say that after this first round of the chemotherapy change, I was better able to manage the side effects going forward. Sadly I wasn’t and the effects really took their toll after the next two sessions. Each cycle saw a repeat of the previous one, with the tiredness and fatigue being compounded as time passed. While I’d been able to work 2 weeks out of 3 under the first 3 cycles, this time I was lucky to work 1/2 a week out of three. I couldn’t get out of bed before lunch time and to be honest, if I wasn’t doing my damnedest to get some work done, I’d have stayed there.  When I saw my Breast Cancer Nurse at a  routine appointment to discuss my forthcoming radiotherapy treatment she was shocked when she saw me and dispatched me off for blood tests and an x-ray to make sure there wasn’t anything sinister causing the constipation, on the day I saw her, it had been 8 days since any movement.  My OH found it amusing that she came out to the waiting room and said to him “Jill’s not well you know” – well tell him something he didn’t know, he’s been the one that’s had to witness the being sick, the pain, the inability to eat and drink, the inability to walk and on ocassion the tears. The only good news was that the 2nd February saw the last of my chemotherapy cycles.

The fact that it’s now the 17th March before I’ve felt well enough to attempt an update is also indicative of how long it has taken to shake off the fatigue and some of the side effects. I’d like to say that things are getting back to normal, but that’s not the case. There is a misconception that once chemotherapy is finished, you get through the usual side effects and start to improve. Sadly that is not always the case. My current normal is a far cry from how I was before I started this process. I’m still bald (though delighted to report what just about passes as stubble is starting to appear), I have no eyebrow and eyelashes which means my eyes are usually red rimmed, watery and prone to styes. My nose is often sore as it’s constantly running (due to loss of nasal hair), though thankfully the nose bleeds have stopped. I now walk with a stick due to the constant pins and needles/numbness in my feet and toes caused by nerve damage. As I can’t feel my feet when walking I have a tendency to trip. The neuropathy, which also affects my fingers, should improve within months (however, if I’m unlucky it could be permanent). Insomnia is a regular problem, largely due to the leg aches and pains which tend to materialise at night – this means I’m still on the Tramadol, which doesn’t always help with the sleep but guarantees it takes me ages to wake up the next day. If I’m up before midday it’s a good day. I still have problems with heartburn, not helped by the fact I’m still not eating properly, I can manage muesli for breakfast, force myself to eat lunch (about half of what I used to eat) but by the evening I’m not interested in food, often because I feel sick. This latter is often because the constipation has hit again.

On the plus side, I’ve found I’ve been able to read a bit more – this can only be a good thing. I have so many books on my review pile though it will take a long time, before I work my way through them – I will get there, but in my own time.

Now that I’m back on the update loop, you might find shorter gaps between the next few posts and hopefully they won’t be as long.

 

95 comments

  2. Goodness me, Jill. What an absolutely horrendous few months you’ve had. I am constantly keeping you in my thoughts and sending you strong vibes. I do so hope you start to feel improvement soon. Much love ❤️

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  4. Omg Jill it sounds as though you’ve been going through a terrible time with your treatment. Everything has hit you hasn’t it? Sending you huge virtual hugs as it’s been great to get an update from you but wish i could wish it all away for you xxxx

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  5. What a terrible horrendous time you have had. It just sounds awful. I am so sorry you are so very ill from the treatment but you find strength and always come back fighting bless you. I so admire you Jill. Keep up you will beat this xxxxxxx

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  7. Hugest of gentle hugs my lovely! Have been wondering how you were doing, & thinking of you. Can’t begin to imagine how awful it’s been for you recently, I hope the after effects lessen or at least cause you less pain ASAP! Much love xxxxxxx

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  8. Goodness, you are going through it. I am so impressed with the way you manage to keep a sense of yourself- so important. Good thoughts sent for keeping your strength up and your sense of humour going xx

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  10. Oh, Jill, I’m so sorry for what have been and are going through. I can’t even begin to imagine. I hope with all my heart that things improve for you soon. You are a brave lady who has managed to retain her sense of humour! Sending love xx

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  13. This had been a real education for me. Sounds absolutely bloody horrendous Jill.
    I’m just so sorry you’ve had to go through all this. You won’t believe it but I think you’re incredibly brave.
    Keep fighting. Stay sane. Do whatever it takes to get you through the days and nights.
    Hopefully soon, you’ll be feeling like your old self again.
    Keep in touch

    Love always

    Caryl x

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  16. What can I say? You’re clearly going through hell. Thank you for being courageous enough to share your experiences so candidly. I can only say that I’ll pray for you. Although I haven’t been through what you’re going through, I have been in some pretty dark places in my life, with 3 severe illnesses – I’m better now, though not cured. I do hope and pray that you come through this.

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  17. Oh my goodness Jill you’ve had a battle. Don’t do things by half do you xx I have been waiting anxiously for an update and you have been in my thoughts often. Onwards and upwards my lovely with little steps. Sending gentle hugs and lots of love your way xxxx

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    • Thanks Kate and it’s me that’s grateful. The Five on Friday feature has allowed me to keep blogging when I couldn’t read/review. Being able to prepare the feature when I felt OK has kept me in the loop. xx

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  23. It seems wrong to give this a ‘like’ Jill. Where’s the OMG or Ruddy Hell button when you need it. :O The last thing you need with something like this is timing and admin muck-ups but you’re still here to tell the story in your own inimitable way. Hope it’s onwards and upwards from now on. Big, very gentle hugs to you, and also one for the OH. xx

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  24. I’ve been thinking a lot about you. Thank you for sharing this update. It mustn’t have been easy, but sometimes it helps, and it helps us understand better what you are going through while your writing is never about getting pity. I admire how you’re able to discuss it. I am not religious but I did light a candle for you in the cathedral I live near, thinking that anything which might help had to be done. I am sending you all my love and lots of hugs. Keep reading, and I won’t say :stay strong” as you already are, and it is okay not to be every day xxx

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  27. I can’t begin to imagine how hard it must be to be coping with all this, Jill. The brave and readable way you write about something so horrendous is really awe-inspiring. I do hope the worst is behind you now. Thinking of you.

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  28. So sorry to hear that you have had such a difficult and painful time recently. I hope things start to get better for you soon. Will be thinking of you xx

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  30. Well, when you said recently you’d be giving an update, I wasn’t expecting this. A strong reminder to do my utmost to avoid getting cancer (because it’s a choice, isn’t it?).
    Sorry to be so flippant – I do find it’s my default position when it comes to reading stuff like this. It’s good that things are better than they were, but it sounds like you’ve got a way to go yet. As I have been anyway, I will be thinking of you.

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  34. Oh goodness, you poor thing. It sounds just awful. Hang in there, it will get easier. My Mum and sister have both been through chemo and a lot of what you are suffering sounds familiar. My sister had nerve damage in her feet but she had some sort of therapy and has no lasting effects. xx

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  36. Jill, it sounds as though you have been through a very, very difficult time, and your wonderful reviews never reflect this. I am so dreadfully sorry to hear that you have been so uncomfortable ( a misnomer, of course). I am always here for you—PM me if you’d like, and my prayers are with you.

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  38. Aww, bless you. Sending love and comfort. Let’s hope the worst is over for you. Try to be strong and know you have everyone thinking about you xx

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  39. Oh my lovely, funny friend, I think of you every single day with love, affection and now a deep sense of admiration too. I know you’ll kick cancers butt, I have a few Gin’s and lots of giggles for our girly lunch with Alison riding on it. We can raise our pencilled in eyebrows to each other in triumph, comparing notes on our stencilling skills…
    ….I’ve chosen shape No.3 today – a cross between mild amusement and a touch of ecstasy which will go down a storm in Morrisons in the Orgasmic Fruit display!
    Much love
    Gina x

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    • Thanks you my friend – glad to see you’ll be keeping them amused in Morrisons anyway!! I think we need to think about penciling a date in the diary. Last radiotherapy on Monday (hurray!!) and got some magic pills today which should help with the nerve damage in my feet (so I can walk from the station). I’m looking forward to getting by life back on track. xx

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  40. I suspected when you went quiet on us that you were having a rough time with the treatment. Didn’t expect to hear that it was as bad as this though Jill. You’ve been through hell clearly. We’re all very aware about hair loss as a side effect of chemo but I never thought that would include nasal hair. it would be funny if it wasn’t such a miserable side effect.
    But you are one very strong woman and I know will not let this defeat you even if some days you feel like doing nothing other than crawling back under the bedclothes.
    Sending you multiple virtual hugs.

    Karen

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