MarySmith’sPlace ~ Cancer Diary #09 A bit of a whinge

Monday, November 02: I had my third chemo cycle on Friday and am now in the “meh” stage of feeling pretty rubbish. The constipation returned, worse than six weeks ago, despite prescribed laxatives. Oddly, I had no constipation after the last chemo dose when I upped the fibre content of my diet. I thought I was eating much the same this time – body thinks otherwise.

Movement was finally achieved around 5.30am today. I went back to bed feeling decidedly lighter.

I felt really healthy throughout the week leading to the third chemo round. The only blip was a sleepless night on the Wednesday after I’d had my pre-chemo bloods taken. Having the bloods taken isn’t a problem. In fact it’s one of the highlights of my social life – meeting a masked nurse in the health centre. Mostly, I cope with my hermit-like, self-isolation existence but when I heard myself gabbling away at the nurse I realised I do miss people.

No, the anxiety was about the chemo having to be postponed because of something not right with my blood. While having my body pumped full of toxic drugs is not something I relish, having decided to go for it, I dread anything which might slow down the process. And as the first two rounds of chemo halted the growth of the tumour, but didn’t shrink it, I don’t want a longer gap between cycles in case it starts growing again.

On top of that particular anxiety, the more I thought about Cancer Specialist Nurse (CSN) and how dishonest she’d been with me made me angry. I had seen some research on medicinal mushrooms, particularly Coriolus versicolor, and the results of various trials which seemed to indicate its use increased immunity in patients taking chemotherapy. I asked if I could send it to her to pass on to the oncologist for her thoughts. She said she would and I printed out the version for health professionals and put it in the post to CSN. At the meeting last Monday, it became clear the oncologist hadn’t seen or heard of the research papers. CSN said she’d asked the pharmacist who had said I shouldn’t use it.

Why? ‘He doesn’t know how it would react with the chemo drugs.’ The point of sending it to the oncologist was to see if she could find out more about the trials. It’s too late for me now, with only one more chemo ahead of me, but I will still try to learn more about it. It may seem a trivial thing to lose sleep over but to have queries dismissed out of hand as not being worth any kind of follow up does not build trust – neither does knowing the CSN didn’t do what she said she’d do. And she didn’t call me on Thursday with the blood results as she said she would.  

When I told a friend I’d be sitting in the chair at 11am on Friday she asked what I meant. It made me realise not everyone reading this may know what is involved in a chemo session.

I give my name at reception, remove my mask, use hand sanitiser, put on a new mask and take a seat until called. I’m weighed, have my temperature checked and am told to wash my hands before being led into the room where the chairs are socially distanced. The first time, it felt like being led to the electric chair – not so bad now but there’s still something deeply unpleasant about giving up all control over what’s going to happen.

They check pulse rate, BP, oxygen stats – then bring warm pads from a microwave to put on the back of my hand to bring the veins up before inserting the cannula and hooking up the drip bags. There’s usually a delay waiting for the pharmacy to send the drugs down. They start with a saline flush, then the first of the chemo drugs, another flush before the second drug – and there I sit for around two, three or more hours. I take my Kindle in and spend the time reading. Having to keep the hand with the cannula in completely still for so long isn’t easy – especially when they bring you lunch. A wee wiggle of the fingers is enough to block the drip and make it bleep.

Usually nurses look at my veins like happy vampires so it was surprising to be told by the one on Friday that my veins are very thin. ‘I bet everyone tells you that,’ she said.

‘No, you are the first.’ And, astonishingly, the first vein she tried was completely empty! The second attempt was successful and all went well until she came to remove the cannula. The fountain of, by now toxic, blood missed me and went all over her. She asked me to put my finger on the gauze pad while cleaning up then told me the haematoma swelling before our eyes was because I’d moved my finger. Last time, there wasn’t a mark on my hand so I kind of hope she gets some practice in before I go back, or has the day off.

I hope by my next diary entry I’ll have shaken off ‘meh-ness’ and bad temper and be back to my usual self. And, please let it stop raining so I can get out for the occasional walk.

125 thoughts on “MarySmith’sPlace ~ Cancer Diary #09 A bit of a whinge

  1. Sorry to hear the CSN let you down, I had a quick google of the musuhroom thing and there’s a lot of evidence out there the oncologist would probably be interested in. Pharmacists do not like ‘alternative’ medicine, I think they think it’ll put them out of a job! Fingers crossed you feel less meh tomorrow, and less again on the next day. Sending you virtual hugs 🙂

    Liked by 3 people

    • I’m not someone who would rush out and take alternative therapies without consulting the oncologist so I do feel miffed the CSN didn’t even send the info on to her. It would have been a complementary, rather than an alternative so the pharmacist would keep his job! I think if I get a decent sleep tonight, things will look better tomorrow. Thanks for the virtual hugs.

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  2. I’ve had infusions for the past eight years, and your description sounds very much like the procedure I go through. Of course, the nurse will blame the swelling on you, but I know it is her from experience. When someone in the medical field tells me they will do something and then don’t, I let them know how unprofessional they appear. I fired my Cardiologist for failing to approve an EKG before a procedure. He had four weeks to get the approval to the surgeon. The morning of surgery, still no approval. I called him and demanded he send the approval electronically. He did, and then I fired him. You should not feel bad for being angry at people who do not do their job. My prayers are still with you.

    Liked by 7 people

    • Thanks, John. No other nurse has had a problem with my veins so I do know it was her – like a bad workman blaming the tools 🙂 I would have said something to the CSN but didn’t want to do it in front of the oncologist who would feel duty bound to take her staff member’s side. I didn’t realise you were still on infusions – eight years seems a long time.

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        • Sorry to hear that, John. At least it was identified and you have a treatment plan, and it’s predictable.

          I had an inflammation from head to toes for six weeks starting early November last year. Went to urgent care twice, ER twice, seeing 7 different doctors but no doctor knew what I had, and just gave me antihistamine and anti-itching medicine, and passed me on to another doctor.

          When I was at ER the second time, I demanded to be admitted. I was admitted, but the floor doctor only gave me saline without medication. He requested a dermatologist to come to see me. The dermatologist’s first diagnosis was an autoimmune disease and gave me steroids. The biopsy didn’t come in until I was discharged. It was a wrong diagnosis. The steroids worked and took a few weeks for the inflammation to go away. By that time, I lost 60% of the hair because of the shock in my body.

          Because of two months of the burning of the skin, the dead skin peeled off one time after another. I was under the care of my own dermatologist and an allergy specialist from January to March when the Covid hit. They still didn’t know the cause, just asked me to stop all the medications and herb, even tea, and reintroduced them one at a time. I think the inflammation was an allergic reaction, something my body could fight off. But it’s still a mystery.

          Liked by 1 person

  3. Haha, not sure if it’s appropriate to giggle Mary, but honestly, what a cods up, she should be shot. (CSN) I hope you have the opportunity to discuss/upbraid her. As for bloodletting – the degree of competence varies considerably I find. As a diabetic, I have bloods done regularly, and to be honest quality control is variable, why of why I wonder do I always smile as if good jobs been done when like in your experience, it clearly hasn’t. But hey ho, on you go…xxx

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    • It’s all right, Steph, I’ve had a bit of a giggle about it. She probably felt worse than I did. She’s new at the hospital though been nursing for a long time so the machines and procedures are different. Why am I making excuses for her???

      I once tipped a hairdresser who had done a hatchet job on my hair and came out of the salon furious with myself for being such a wimp!

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  4. Some of the very basics, like people doing what they say they’ll do, and people keeping an open mind, really would make such a difference everywhere, including in these settings you describe Mary. There’s enough to manage without that. Unfortunately many will just give up. But not you. Hope meh-ness clears away, sun shines, and stools soften. xx

    Liked by 2 people

    • Would make such a difference, Janette. I’m not sure if they realise how vulnerable we feel even if we don’t show it. The stools have softened, thanks – just need to work on the meh-ess. The sunshine is a bit out of my control.

      Liked by 3 people

      • Heh, congratulations on your poop loosening up! : ) May your ‘mehs’ pas thusly too.
        …. that whole ‘the patient knows nothing’ really gets me angry. It’s such a relic of the (not all that long ago) past when Doctors, and nurses by association, were gods.

        Liked by 3 people

        • Thanks, Widdershins – the loosening up has such a lightening effect – physically and mentally – the world looks better already, even if it’s raining.
          I think we still have a ways to go before some in the medical profession accepts they are not gods. My parents’ generation worshipped them. My mother would clean the bedroom and change the bedding before the doctor came on a house call!

          Liked by 3 people

  5. Ah yes, the vein ordeal… bless your heart Had a nurse attempt to insert a pic line into my right arm. The doppler showed many a wonderful vein, but each time she inserted the needle, the vein would shy away. After an hour, she asked me if I would like her to try the OTHER arm. Uh, no thanks… Hang in there and like John says, don’t be to stand up for yourself! KAB on the move! ❤

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  6. Aw bless you.
    I have had a similar situation where a nurse told me i was cancer free and had 2 weeks of celebrating 🍾 only to be told when i saw oncologist that no, I wasn’t as cancer cells were in a lymph node, in the surrounding breast tissue and blood vessels. It was a kick in the teeth to be fair. Keep on keeping on. Stay safe and take care xx

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    • Thank you, Barb. You are right – I do deserve a competent needle nurse. To be fair, the previous nurses have done the job perfectly well. One more round to go before I know what effect the chemo is having on the tumour.

      Liked by 1 person

  7. What everyone else said.;
    Vent, whinge, and let it all hang out.
    We put up with these incompetencies because they are in control of us, and we don’t want to make it worse. But as long as you don’t get the incompetent one every time, you can cope. My brother has the same sorts of problems with his bloods, and they can never find a vein on him. He tells them where the good nurse finds it, but they won’t do it there….
    Keeping our thoughts with you – and with Sue, if she’s reading this too.
    xxxxx

    Liked by 2 people

    • Thanks, Jemima. And, yes, we tend to put up with a lot because we are worried about how much worse they can make it for us if we complain. It sounds like many of us have to accept some nurses are just not skilled in finding the right vein while others are spot on! A good whinge now and again helps a bit – but I’m still cross 🙂

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  8. Sounds like a nightmare to me. I do hope things turn around for you. For all you have to deal with, you should not have to put up with unreliability and inefficiency. At least you can read during the procedure. I hope you have some good books on your kindle! Sending tons of hugs. xo

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  9. What Barb said, for sure. Most needle nurses are pretty good, I have to have blood taken every so often for thyroid levels but one in particular stands out. The blood went all over me unfortunately, not her, and left quite the bruise. As for complimentary medicine, there should always be open minds… Best of luck for the next round xx

    Liked by 3 people

    • So far, they’ve all done a great job in inserting the cannula – until this one. But it only takes one to take away all confidence. Today is the first day since Friday I’ve been able to wear my watch. Sorry you got the blood fountain and not the incompetent nurse 🙂 Next round should be the last one so fingers crossed.

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  10. I got my back up just reading this. I have learned through the years and while advocating for my family, that we must manage our own healthcare. It can be daunting, but good for you for speaking up. And please do not let any of them get away with treating you ‘less than’. This is truly your life on the line. If they don’t like being called out, then they should strive to do better. Sorry about the constipation. It is miserable even in the best of circumstances. Hang in there, Mary. You are doing great and I so appreciate hearing how you are progressing.

    Liked by 2 people

    • Thanks, Maggie. The constipation is resolving itself, thank goodness so that’s one bright spot. And the bruising is beginning to fade. I think many of us don’t want to complain too much because we are entirely in their hands and worry about what else they can do to us! That’s unfair on the ones who are doing a first rate job – as they should – and I feel they also should be speaking out about the ones who are less competent. Thanks for your continued support.

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  11. When they take a pint of blood out of me every few months for my haemochromatosis, the needle is just slightly narrower than a drainpipe, but fortunately I have pretty big, solid, easily found veins in my upper forearms. This hasn’t stopped one nurse completely missing them twice and then going for the other arm. I don’t know whether it was incompetence, or just getting her on a bad day. I’ve always made an appointment with a different one since though.
    ((hugs))

    Liked by 2 people

    • Hi Kim, I didn’t know you have haemochromatosis. Until a couple of years ago I hadn’t heard of this then a blogging friend was diagnosed with it and soon I was hearing of several other people with the same condition. It seems like we’ve all met the nurses who are having a bad day or are incompetent at blood work! Hope you manage to avoid your one in the future.

      Liked by 2 people

      • I seems I carry 2 mutant genes, thereby giving me a “Genotype Compound Heterozygote” (copied and pasted – I wasn’t going to try and type that out in one go), which is what gives me the haemochromatosis.

        When I first heard about my Mutant Genes, I wondered if it would give me superhuman powers, like Magneto in X-Men. Unfortunately this has turned out to be idle fantasy. The only likely superpower I might have is if I crap in a puddle my stool might face magnetic north.

        Great trick if you’re ever lost in the wilderness, you might think, but too much iron is also associated with constipation, so I’d only be able to check my bearings every 3 or 4 days…

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  12. I am feeling like keznoa within her comment. Re-thinking therapies seems to be too much work for most of todays medics. I also hope you will feel better the next days. The best is you have not lost your humour. Bad things do not love laughing. Best wishes, blessings and hugs. Michael

    Liked by 2 people

    • Thanks, Michael. I feel no worse today which is good. As for re-thinking therapies – I just would have liked the trials reports to be given some consideration rather than be instantly dismissed. I’ll try to keep laughing – it must annoy the tumour 🙂 Thanks for your support.

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  13. Mary, I’m glad you outlined your procedure for us to understand. For me, it helps to visualise what you are facing, but also to envision my sitting there with you, giving support and encouragement. I had a friend that I accompanied to a couple of her sessions and was allowed in to assist her, but with Covid, sadly, you aren’t allowed to do that. So I intend to be there in spirit, at least.
    It saddens me that your inquiry was dismissed out of hand. Western medicine is so limiting, when there could be many alternatives that have merit. Perhaps you can take medicinal mushrooms on your own? There are many available in stores on online. Reishi, chaga, cordiceps, etc. https://thetruthaboutcancer.com/medicinal-mushrooms-cancer/

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  14. Really sorry to hear about the CSN and the needle nurse. I hope you can feel the power of our support for you – particularly when staff aren’t doing their very best. And I hope you’re reading some good books on your Kindle to keep you occupied while sitting in the seat. Sending love.

    Liked by 2 people

    • I’m just hoping she has a day off next time I’m there for chemo! And, yes, I do feel everyone’s support and am very glad of it. I have plenty on my Kindle but I have to say I’m keeping my reading light at the moment 🙂 xx

      Liked by 1 person

    • Thank you, Lynn. The weather is depressing. It was glorious when I woke up this morning but by the time I’d had breakfast and showered and dressed it was raining again! I’m determined to get out today, though – even if only for a few minutes. Hugs back. And one day, they’ll be real ones.

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  15. Mary, it sucks when doctors and nurses aren’t doing their best. I have to have blood tests often. I tell them my veins roll and are difficult to find. I have gratefully had some nurses pass me off to someone more practiced . I have also had four or five missed veins before they get it right. I am all for alternative therapies. Before my doctor of 30 years retired she was always open to whatever I presented her with. If she did not have the answer she would find it. It made telling her I was trying alternative treatments easy. She turned my on to acupuncture and it has been a G-d send to me.

    Stand up for your needs. You deserve to be treated with kindness and their best practices. I am glad your body is finally moving through. You are doing great fighting the foe.

    Sending virtual hugs, prayers, and best wishes. Hopefully this round will shrink that nasty alien.

    Liked by 2 people

    • It’s the instant dismissal, Lauren, which bugs me – as if anything a non-medical professional might come across must be rubbish. It wasn’t like I was suggesting trying medicinal mushrooms instead of chemo! As for the veins – mine are good, prominent veins and the only two times nurses have made a mess of things (one with the cannula, another elsewhere taking blood for testing) they have both blamed my veins. I’ll know as soon as anyone makes a disparaging remark about my veins to start calling for someone else to take over.

      They do actually offer Reiki at the hospital and I’ve thought about making an appointment but as my chemo appointment time can be changed at short notice and I never know when it will be finished it doesn’t seem possible. Thanks for all your good wishes and support.

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  16. Oh, Mary…I feel so sorry for all that you’re enduring. Like grief, it’s a personal journey no one else can share. I’m praying the tumor shrinks and keeps shrinking. Until then, I hope you have more good days than bad and all the love and support you deserve. Hugs.

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    • Thanks, Linda. Today is already better than yesterday – a good whinge and good night’s sleep are therapeutic. And normal bowel movements 🙂 I’m just hoping feeling ‘meh’ means the chemo is working and the tumour is feeling worse. Hugs back.

      Liked by 1 person

  17. I remember the process, Mary, as I went with my mother once for her treatment. The treatment does impact your veins and it becomes more and more difficult as you progress. Some people have to have a port put in but if you have good veins you will be okay. My mom managed without any intervention but her veins are still poor. She also could only have the drips on her right hand side because she had lymph nodes removed on the left which was the side where the cancer was. I am sorry about the nurse’s attitude. She should have been honest.

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    • I know some people do have a terrible time with their veins and require a port – glad your mum didn’t – and hope I don’t. I’ve one more chemo to go so fingers crossed I get a different nurse and all goes smoothly. The first one, who inserted the cannula on the two previous occasions, was excellent. And, yes, I’m still niggled by the dishonesty of the nurse – it doesn’t make for trust.

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  18. I think you are entitled to have a meh moment or three so whinge away dear Mary…the nurses should be more sympathetic and careful when poking us full of holes by telling her she may be more careful with the next one …as for the mushrooms many alternatives work well along with side conventional medicines and she was wrong not to pass your message on…Maybe you should do that and bypass her… the oncologist may or may not know as there are so many alternatives and no one size fits all …but most worth more than just a cursory glance…I hope by now you are feeling more upbeat and maybe have been able to take a walk…Hugs and Buddha’s healing thoughts coming your way xx

    Liked by 2 people

    • It’s been raining most of the day here, Carol, after a brief burst of sunshine first thing in the morning so I’ve not been out. However, the rain seems to be easing so I might venture out to breathe some fresh air. I do feel a bit better today – possibly as a result of yesterday’s whinge – and the support of blogging friends. A wee walk might well help to improve my mood and increase energy levels. Thanks for your support. xx

      Liked by 2 people

    • Warm and sunny South Africa sounds an excellent idea, Kim. Actually warm and sunny anywhere would do nicely. I suspect Covid restrictions and horrible winter weather are combining to make life with cancer seem more difficult than it need be.

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    • I had some wine last night after my whinge and I did sleep better – though I don’t want to turn into a constant whinger. Getting out is essential for my mental wellbeing so I’ll just have to don the welly boots and go for it, I think.

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    • Thanks, Lucinda. I’m well stocked up with ebooks for now and am only reading light stuff because my powers of retention aren’t working and as soon as I finish a book I forget what it was about. Thank you for your continued support. xx

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  19. I’d like to send that CSN to a nursing school for the students to practice on their IV technique. Who knows, perhaps a bit of empathy?
    It is not conducive to our confidence in those doctors and nurses when feel we need an advocate to protect us from those who are supposed to be caring for us and/or/ those we care for.
    All the best. Bisous et calins, Lea 💜📚

    Liked by 2 people

    • I think you are right about there being a lack of empathy in this particular nurse – and that’s not something which can be supplied by training sessions! And, we do need to feel confident in the people we’ve handed over our bodies to. Thank you xx

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  20. I am very familiar with the ‘chemo chairs’, having taken many patients by ambulance to sit in them. Sorry to hear that your consultant didn’t read up on the mushrooms. Anything that might help has to worth trying.
    I’m a day late with my comments, as Julie found a breast lump yesterday. One of the GPs where she works saw her immediately she got into work, and has referred her for a 14-day ‘urgent’ appointment. So now my fingers are crossed for her, as well as for you.
    Best wishes, Pete.

    Liked by 3 people

  21. I ‘liked’ this even though I don’t like it! I aways have terrible problems when I give blood or have blood taken as I have tiny veins and it takes forever to get everything going so you have my sympathies.
    We have had what feels continuous rain for the last fortnight here in West Wales – it does make you realise how beneficial a walk in the sunshine can be. Hope you manage to get out and about this week xxxxx

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    • I don’t have tiny veins so they really have no excuse, Alison. It must be awful to have that kind of thing happening every time. It stopped raining for long enough to go out and have a short walk – and everyone is telling me the rest of the week we are going to have better weather so I’m hoping to get out more. It definitely makes a difference to me to have fresh air and to walk – excellent for the bowels 🙂

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  22. Having a moan and getting angry keeps you sane. I used to ask my oncologist questions about using ‘alternative’ things and she always said she’s never heard of that being used before, A quick Google showed it was quite a common ‘fix’ and many of the cancer forums were discussing it. I think they don’t want to be diverted from their route or want anybody coming back to sue if they approved something alternative. Given the fact that the cancer can ultimately kill anyway you think they’d be a bit more open minded if it’s something that can help. All the best for the last round & better luck with the cannula! x

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    • They do seem incredibly territorial about these things. It’s not like we’re suggesting dumping the chemo in favour of other things. It’s their way or no way, it seems. If I see that nurse coming near me next time I will find the courage to say I want someone else to put in the cannula – and take it out. Thanks, Jill.

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  23. I remember my father’s experience with chemotherapy (a completely different kind of cancer, so not comparable), but of course, that was years back, and we didn’t have the added pain of coronavirus. I hope the week improves. It is very difficult to know the interactions between drugs even with natural substances and products, but there is no excuse for saying one thing and doing another. You don’t need any more aggravation. Take care, Mary, and I hope the weather gets better as well (it has taken a turn for the worse here).

    Liked by 1 person

    • I totally understand the need to check the interaction between the chemo drugs and the mushroom compound, which is why I asked the nurse to send it to the oncologist in the hopes she might be interested enough to research – or may even be aware of the product.
      I’m pleased to say the weather has improved today and I was able to get out and enjoy some time in the countryside, which was looking beautiful. Hope your weather improves. Thanks for commenting and for your good wishes.

      Liked by 1 person

    • I didn’t quite quadruple the dose but I certainly kept taking it for several days – and the dried apricots, dates and liquorice! Seems to have worked – just have to watch I don’t go the other way now 🙂

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  24. I had a port-a-cath put in, Mary. My treatment was 24/7 five days every three weeks with six months in total for chemo/surgery. After each hospital treatment, I had 4 days in the first week and one day each of the following two weeks for 3-hour hydration for detox. So if I didn’t have the port-a-cath, even my good veins would get bruised and would have more risk for germs and infection.

    In a sense, when you’re receiving chemo, it may not be a good time to try things for your immune system. I know I stopped most of my medication except the high blood pressure med during chemo.

    For a while, I took several kinds of meds without looking into the counter effects. I now started reading the descriptions and learn not to take med B when taking med A.

    You seem to do well. Wishing you the best for one more round of chemo. My prayers are with you!

    Liked by 1 person

    • Your treatment regimen sounds to have been incredibly intensive and complicated, Miriam. So far, my veins are fine but I’ve not had many rounds of chemo – and with only one more to go, I think they should be OK. So far, they have only used my left hand so if need be they put the cannula in my right hand next time. Thanks for your continued support.

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      • It’s good they could use your right arm next time, Mary. Some nurses are skillful in finding the vein. They could also try smaller size of needles. When I had the inflammation and hospitalized, my arms were swollen, hard to find the vein for IV, one nurse fond it.

        You’re doing very well, Mary! Only one more chemo to go!!

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  25. Hi Mary I don’t know how I missed this post. Why can’t medical staff especially dedicated caner nurses be dedicated and realised you know your body better than they do. I am glad you managed to open your bowels as the uphanise it in hospital, it makes such a difference ! Mary if they need it,bite their heads off, that nurse needs a rocket up the perverbial! Take care sending you lots of support 💜💜💜

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  26. If the venting and whingeing helps, I’d carry on with it, Mary. Getting it all out in the open always helps me. Otherwise, I can feel like a bottle of pop that’s been shaken without the top being removed.
    Being sat there for all that time and not being allowed to move your hand sounds horrendous. How you managed to eat your lunch at the same time, I’ll never know. I hope the next session is a lot better for you.
    Hopefully, it stopped raining for you this week. We’ve had some lovely cold, clear, sunny days. I hope you had some of those days too and were able to get yourself out for some walking.
    I know you’re taking good care of yourself, but I’m going to sound like a headmaster and still tell you to ‘Take Care.’
    Lots of love and hugs to you
    xx

    Liked by 1 person

    • Yes, thanks, Hugh, I was able to get out for some nice walks when we had the bright, dry days – and felt so much better for it. It’s back to gloom and grey and rain today, though. As for how I manage to eat my lunch while unable to move one hand – I behave in a very jungly way and drink the soup from the bowl 🙂 Thanks for the love and hugs – always welcome and much appreciated.

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