MarySmith’sPlace – Cancer diary #02

September 13: I am still stunned – and deeply touched – by the number of messages of support and good wishes both on the blog and sent privately since I posted about my cancer diagnosis. Thank you, all.

I met the oncologist on September 07. I didn’t sleep much the previous night and couldn’t settle to anything in the morning before the afternoon appointment. I felt as I imagine a prisoner in the dock might have felt when the judge donned his black cap to pronounce the death sentence.

My friend Willow who blogs HERE, has a wonderful pair of kick-ass, confidence boosting red shoes. I don’t have red shoes but I have some black ankle boots with similar properties so I wore them and before getting out the car at the hospital I reached into my bag for some confidence-inspiring lippy. Then remembered I was about to put on my mask.

The DH came with me and we asked to record the discussion. It’s just as well we did because despite there being two of us listening and asking questions and my note-taking (which dwindled when the names of drugs I can’t spell started being bandied about) by the time we got home we’d forgotten a lot of what was said. It’s been so helpful to listen again so there’s my top tip for anyone about to have a similar discussion with a doctor – record it.

She started with a résumé of how all this began and what had been done, how I was feeling physically, how things had changed. I admitted I do feel my fitness levels are definitely dropping, mainly because the weather has been so crap and I’ve not been walking so much, never mind what’s going on in my lung.

At least the cough I’ve had since the bronchoscopy has more or less gone, thank goodness. It was one of those dry little coughs which if I’d had to listen to someone else doing it I’d have become so irritated I’d have had to leave the room. The only sour note in the entire discussion was when she said she was sorry I’d had such a traumatic experience with the bronchoscopy but other people don’t. I felt like saying that actually, it’s only because I’m so gobby I do say what it is really like for the patient.

She examined me and showed me the tumour and affected lymph nodes and went on to list my options. I can choose to do nothing, in which case I may have a few months. I don’t know at what point during those few months I would become really ill and not have much quality of life left.

The other options are chemo (again those names of drugs I couldn’t spell – pemetrexed and carboplatin) to shrink the tumour followed, if this happens, by radiotherapy. Or, I could opt for those drugs plus pemobrolizumab, which is an immunotherapy drug. There would be no radiotherapy although at some point I could stop the immunotherapy drug and have radiotherapy but couldn’t go back on the drug again.

I said I couldn’t decide there and then and needed some time to think. She agreed and suggested I take until the end of the week. She asked the cancer specialist nurse to give me a B12 injection and a prescription for folic acid and some steroids to be taken the day before, the day of and the day after the chemo and to book a slot for the end of the following week so if I decided on one of the treatment options everything would be in place. Oh, and I’ve to self-isolate as has the DH.

We didn’t discuss it that night. Even the next day, the DH and I sort of mentioned it in passing but we did talk more about it later. I’d agree to speak to the nurse on Thursday as she doesn’t work on a Friday but by Wednesday I’d made my decision and was planning to call her, because on Thursday I was meeting my friend Sue Vincent at Cairn Holy – except that Sue never left home after being told her X ray results needed further immediate investigation. She has ‘something’ in her left lung; my ‘something’ is in my right one – we’re a pair of bloody bookends!

The nurse phoned me on Thursday; I told her my decision was to go for the standard chemo followed by radiotherapy. She said she’d see if there was a slot available for the end of next week. In the meantime I should organise for bloods to be taken. On Friday, I phoned her colleague who checked and said, yes, there was a slot on Friday 18 at 11.30 and I’d need an ECG done before so could I come in earlier.

All being well, my next update should be after I’ve had my first dose of chemo; a step into the unknown. I’ve never in my life wanted to do a parachute jump – my stomach goes into freefall just thinking about it. And now I feel as though I’m about to jump out of a plane hoping that a) there really is a parachute strapped on by back and b) it actually opens.     

 

96 thoughts on “MarySmith’sPlace – Cancer diary #02

  1. Mary, I have had you on my mind constantly. I know this has all been overwhelming and the choices given not easy ones to make. I keep you in my prayers and hold nothing but positive outcomes for you. You are one tough cookie. Just focus all your energy on you. I send so much love your way.

    Liked by 1 person

  2. (My click on the LIKE button is just so you know I’ve visited and shared.)

    I am SO proud of you for deciding to put up the best fight you possibly can, and again, I think of my neighbor who has just gone through the entire process as you describe. (More or less. Drug names confuse me, too.) She is still cancer-free and feeling great these days, and I’m holding that thought in my mind whenever I picture you. It won’t be easy, but it’s worth the fight, Mary. You’ve still got so much to offer the world, and we want you well again!

    I didn’t know about Sue, and while you two would no doubt make beautiful bookends, I’ll be happier when you are NOT linked together by this particular circumstance. Will have to try to catch up with her, as well.

    In the meantime, please know that you have prayers and positive thoughts and healing energy being directed to you from Florida. After all, who will be my guide to Secret Dumfries if you aren’t well by the time I finally make it to your corner of the world? (Where you will show me men in kilts as you point out all the wonderful history in your area. I’m counting on YOU being there, Mary, in all your victorious glory!)

    And along with all the above, I’m sending you loads and loads of LOVE. ❤ ❤ ❤

    Liked by 2 people

    • Sue did a post a couple of days ago. I wouldn’t have shared her news if she hadn’t gone public. Thanks for the positive thoughts and love – and the reminder I was going to introduce you to men in kilts when I am your Secret Dumfries tour guide. I better get this tumour thing shrinking, then 🙂

      Like

      • Yes, indeed! I won’t have it any other way! I am NOT going to make that (to me) terrifying trip across the pond and miss out on meeting you! Nope. So here’s to stomping the dang thing into the dirt, and feeling triumphant after the dust clears!! 🙂 ❤

        Liked by 1 person

  3. Such sad news on top of a difficult year for everyone. Sue too! Well, I am being positive on your behalf, as I can only imagine how difficult it must be to stay positive with your mind racing around with all that stuff to consider. I think you are brave to be so open about it all, and I am sure you have made the best treatment choice for you.
    Best wishes as always, Pete. x

    Liked by 2 people

  4. Well, you let the cat out of the bag with Sue’s suspicious lung – she just said she wasn’t going to be here for two weeks :O

    We’re all rooting for you here. Again, my friend had chemo eighteen months ago (is that all, feels like years). It’s boring. You can’t do anything except endure. But come out the other side, Mary, because like him, we need you. Wear those boots and tell it what you think of it! Kick ass, especially when it’s all too much. Hugs from all of us.

    Liked by 2 people

  5. I think you made the right choice of therapy, Mary. It is the one that gives you the most ammunition to kill the bastard. My prayers are with you all the way. I don’t know if you knew but I survived aggressive prostate cancer by taking aggressive action.

    Liked by 6 people

  6. There is a parachute and it will open! It has to with all these positive vibes being sent from all over the world. Here’s one big hug coming from Spain. You and Sue have been on my mind a lot. Thanks for sharing your journey. 💗

    Liked by 2 people

  7. I’m not in a good place to comment at the moment, BUT now you have made the first decision, at least you are a bit more in control and can get on with it instead of just wondering. Chemo patients have to be very careful anyway, Covid has just made us more familiar with isolating! Best wishes.

    Liked by 2 people

    • Oh, Janet, you not being a good place to comment sounds alarming. Are things not good with you? I still don’t feel particularly in control of the situation but it was my decision to go ahead with the treatment option so fingers crossed. Yes, we’ve had a bit of practice with lockdown this year.

      Liked by 1 person

  8. Great that you recorded that meeting Mary. Strangely it feels positive that you can start treatment and hopefully shrink the thing out of existence. I say strangely because of course it has come in the context of such ghastly news. Well I am thinking the vast majority of parachutes do open as planned, and bring the person back to ground. So the chances look good and I will send these positive vibes to you for a safe landing. Keep us posted. Sending zillions of positive wishes. Janette xxx

    Liked by 1 person

    • I’m hoping things are moving and treatment starts on Friday but I’m waiting until I’m in that room with the drugs going into me before I’ll totally believe it. I really think it’s very unfair of the powers that be to stop us going out to play together – especially as we’ve been trying – and been thwarted – for so long. Guess there must be a message there.

      Like

  9. Willing you well Mary , I am sure you are prepared for the chemo we are all willing you on and sending you good vibes and lots of love . You must get better so we can meet up, you and Sue.
    Thank you for the mention , we all need, red shoes little boots and lipstick to help us.💜💜💜💜💜💜

    Liked by 1 person

    • Thanks, Willow. I’m not sure if I’m prepared for the chemo but I’m certainly going to give it my best shot.
      Have you had any word about your op yet? Hope it won’t be much longer to wait. xx

      Like

      • You can do this Mary, your determined. Not heard a thing about my op, it’s two weeks almost since I saw the surgeon, I rang last week about the letter but though it’s written it had not been proof read or sign yet, apparently a delay on it. Like my op ….. Over three months plus … fingers crossed for you, Sue and me 💜💜💜

        Liked by 1 person

        • And then they post the letters second class! A consultant said he’d written to me but he put the letter into the system on a Friday, then there was the weekend, which was followed by a Bank Holiday and by the time it arrived things had changed! Fingers – and toes – (must be why I keep getting cramp) crossed for us all.

          Like

  10. Would you like the ‘being hit on the head with the hammer’ option or the ‘being thumped on the ear with paddle’? They are wrapped up in fancy polysyllabic names and we can offer you a time slot that’s convenient. Quite the autumnal bummer but you have to give it your best shot. I do hope it goes as well as it can. Fingers crossed

    Liked by 1 person

  11. Mary, thank you for both keeping us up to date with what is going on and also for the tip about recording meetings with medical people. I’ve lost count of the number of times I’ve come home and can’t remember quite what a doctor or nurse has said to me. The names of many drugs and medications are always a nightmare for me. I can’t even pronounce them, let alone spell them.
    I can’t imagine what you’re going through but nonetheless, you sound optimistic about the decision you have made and what to expect. I hope all goes well.
    Sending more virtual hugs your way. Make sure nobody else gets the hugs. They’re for you.
    Take good care.
    Hugh
    xx

    Liked by 1 person

    • We certainly couldn’t remember half of what was said and that was with two of us. I’m sure by the time this is over the drug names will be tripping off my tongue 🙂 even if I still can’t spell them. I’m trying to stay positive. Thanks for the good wishes and the hugs – I’ll definitely keep them all for me!

      Liked by 1 person

  12. Mary you will have no idea how helpful your blogs will be to so many. DH is on the phone now to see if I can go to the urologist at the hospital with him tomorrow. He’s had prostate cancer for 4 years but refused the treatment, he’s not as brave as you. It is a bit sword of Damaclese but it is what it is. Good idea to record it, but just heard I’m not allowed.

    Liked by 1 person

    • Sorry to hear about your DH. My friend’s husband has just come through prostate cancer. He had surgery, which seemed to go well and results were all clear but then his bloods showed the cancer was back and he has had chemo. He is all clear now and didn’t need radiotherapy. He takes hormone drugs as well. Do you mean you are not allowed to be with him at the hospital or not allowed to record the discussion? I don’t think they can stop you. Mine did it on his phone, so just keep your phone on your lap switched to record. He was sitting at least two metres away and it picked up everything. Good luck.

      Liked by 1 person

  13. Hi Mary

    Having read your blogs, I am feeling so scared for you but, at the same time, optimistic that if anyone can come out of that parachute jump, you can. In my eyes, you have always been the daredevil of the pack (back to schooldays) and you have a brilliant talent for putting across feelings in words. Putting both together, I know this blog will help others as well as you.

    I followed you through your Dad’s illness and will follow you through yours.

    Jimmy and I wish you all the best with everything, Mary. Positive vibes are with you.

    Love to you and your family.

    Marion Xx

    Liked by 1 person

    • Thanks for your lovely message, Marion. Me? The daredevil at school? Surely you must be thinking of someone else 🙂 I’m certainly determined to stay as positive as possible. At one point I thought nothing could be done and now I know there are options it has buoyed me up a bit. Thanks again, to both you and Jimmy.

      Like

      • Well, maybe it was Noreen who did all the daring (and double daring), and you and I who did it!!

        I wish sometimes we could go back to those years with the hindsight we have now.. But then, would I have done anything differently? Probably not . well, maybe ‘stuck in’ at school more. However, that was me then, this is now and I am happy with my lot. I look back at the fun times I have had and the lovely family I have now..a new grandson through lockdown. I am so lucky.

        We are all going through the ageing process and illness will inevitably take its toll. But, like you, I will fight it too, when the time comes.

        Our thoughts are with you, Mary. I look forward to your next chapter.

        Marion x

        Liked by 1 person

        • I think I was the one who skived off the most often. I remember trying to convince my mother I’d got suntanned during lunchtime on Moat Brae when I’d spent the day at the Doon! I think we turned out OK, Marion 🙂

          Like

  14. I’ll suggest DH record it it’s such a good idea. But the translator says only patient and her allowed in the consult room. They do have active Covid cases in the hospital so it’s not a normal situation. I went to earlier appointments. I think DH reckoned the treatment at the time would cause more problems, and its sslow growing. I’ll be thinking of you on Friday and sending lots of love and hugs.

    Liked by 1 person

    • Yes, if he can, he should record it – and not make any decisions until you have both listened to the recording. My friend who had chemo said the side effects weren’t as bad as he expected. Yes, the week after he didn’t feel great but by the third week of the cycle he was feeling fine. He did say it was a bit harder later as the side effects are cumulative but still manageable.

      Liked by 1 person

  15. Mary. Finding myself at a loss for words. I should have so many, knowing so much about this process from the perspective of your DH (always by the side of the person suffering, never the one with cancer). Notebooks are helpful, if you remember to make notes, or if you keep your penmanship neat in the frenzy of diagnoses and drug names and potential outcomes and tears and fears. Can’t tell you how sorry I am that your are here. I have red shoes. I will wear them for you. With much love.

    Liked by 1 person

    • Oh, Julie, I have been thinking about you so often lately and what you went through with your sister and looking at my son and not wanting him or his dad to go through that. I found when trying to make notes I was busy scribbling I missed the next thing the doctor said. At least recording it means we can listen again or find her reply to specific questions (interesting to note how some answers were fudged, though at the time I didn’t notice). Thanks so much for getting in touch and for wearing your red shoes for me. I might have to buy some, though I’m fond of my black ankle boots which have very pointy toes 🙂

      Liked by 1 person

  16. None of us want to know it if we have little time left. You’re doing your best to try finding a way to survive this.

    Cancer, heart failure, and strokes kill half of all people in the “western world” each year. Somehow, the sliver of that pie graph where COVID-19 resides doesn’t seem as terrifying.

    I have a friend who had ovarian cancer, which is very hard to treat. She went through treatment over 30 years ago and is still around to tell about it. I’m telling you the story to let you know there are people who have come out the other side and had many more years of life. Many of us are the cheerleading squad rooting for the “Mary” team. 🙂

    Sending good vibes your way!

    Liked by 2 people

    • Thanks for the good vibes, Joelle, and being in the cheerleading squad. The story of your friend is encouraging. I also have a friend who has ovarian cancer and is currently on a new drug trial. I would like a bit more time to do some of the things I haven’t done yet. I agree the number of deaths from Covid are tiny compared to other things like cancer and heart failure (not to mention over 400,000 malaria deaths and not a lot being done to find a vaccine for that) but I really don’t want to get it – the doctors have made it clear that would kill me.
      Bandit the cat has just leapt onto my desk to tell me the sun is shining and we really should go into the garden 🙂

      Liked by 1 person

  17. We are all pulling for you Mary. Don’t lose sight of those red shoes girl! You’ve always been a warrior woman, god is testing you big time. But love, prayer and good will go a long way. You are in my prayers ❤

    Liked by 1 person

  18. When I made my decision on the comprehensive treatment of chemo, surgery, and radiation, my friends said they prayed that would be the decision I made.
    I’m glad you had made the decision you felt comfortable with, Mary! It was the gut feeling you had and you went with it. Some treatments are less “aggressive” and “mild,” but it would take longer to find out if they work or not.
    You’ve been on my thoughts and prayers and I’ll continue to pray for you and stand by you on this journey.
    Make sure to rest well. Your only job right now is taking care of yourself. ❤

    Liked by 2 people

    • Thanks, Miriam. I felt comfortable with the decision for all of five minutes then wondered if I should have chosen the other option! Done now and this way I will find out sooner what it’s doing to the tumour. Thank you for your support.

      Like

  19. A difficult decision, but I agree with John with attacking and being aggressive ~ it is heartwarming to read all the strength and those of around you, and I think this will give you strength. Wishing the best for you, take care.

    Liked by 1 person

    • I just replied to your comment on the previous cancer post so thanks again for your good wishes. I have taken a lot of strength for the good wishes and positive thoughts from so many people. It really does help.

      Like

  20. Mary, I’ve come to this post after reading post number 3, so I know how the first session went already. Good for you and for the boots. And, I thought I might as well tell you that, having jumped off a plane on a parachute a couple of times for real (I would love to have done it more often, but it was complicated to arrange and life got too busy), it is quite wonderful. So there goes… I am sorry to hear about Sue. I hope the news are not bad. Sending you my best wishes and energy.

    Liked by 1 person

    • I just saw your comment on the latest post. Yes, I’m hoping the boots will kick the tumour into touch and stomp all over it. Sue’s still waiting to hear the news – fingers and toes all crossed for her. I salute your bravery in jumping out of a plane. I feel sick just thinking about that drop into empty air. I can imagine when it’s over it must feel good. Thanks for your good wishes and energy.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s