Promised you a Miracle. A cancer abroad.

I’m generally supposed to be an intelligent man, well educated, well informed and pretty on the ball. How is it then that                                                                                                                                                                                                                                         I  can enter the clinic to see the oncologist like that and come out totally confused? How is it that four people can enter and come out having heard four different things? It’s obviously not the oncologist himself because it happens with the other one we see as well. All I can suggest is that we either hear things we want to hear or we all have different perceptions of words used every day. This would at least be an explanation of why a rumour started at one end of a chain of people has totally changed context by the time it reaches the other end of the chain.

Today we had a visit to the oncologist. It was not an expected visit and we’d only been notified earlier this week, As far as we knew the next one was on 7th June. Julia had phoned to see if she could speak to one of the Doctors last week to enquire about her lack of energy. She wasn’t able to speak to anyone at that time so it was possible that this was as a result of that call- we hoped. Not so. Dr.G. had called Julia in as he wanted to ‘catch up’ with her since it’s been Dr.S the last two visits. After asking how she was, Julia explained about the fact that her appetite is poor and sometimes the thought of food makes her nauseous, and also that she lacks energy much of the time. She can get up at 8.am and be asleep again not long after 2.pm before she heads back to bed at 7.pm. Though she watches a bit of TV in bed, I often have to go in and remove her glasses and turn the TV off. If sleeping was an Olympic event Britain has the gold medallist here. Anyway, he prescribed steroids for a week to try and promote an appetite and a little more energy. This is good since Ju is determined to carry on riding.

However, that problem addressed. Dr.G broached the subject of further treatment. Since so far the concensus ( Doctor led) is that it’s better to do nothing unless Ju’s condition starts to deteriorate and it becomes likely the quality of life is diminishing. When I entered the room that didn’t seem the case. Now here’s Dr. G asking if Julia would like to start a tablet form of chemotherapy. Yes there are side effects he tells us, nausea, hair dropping and other things similar to the previous treatment. This time though it would not attack the lungs ( or shouldn’t) but on the other hand, there are extra contra-indications like the nerves in the hands and feet may be affected. Yet he seems to be proposing we consider this treatment despite Julia still feeling reasonably OK and the pain being controlled by the low morphine dose she takes.

I broached the subject that troubled me last time which was the size of the tumour. We know that the scan 6 weeks ago showed it had grown back to the size it was when found last July. But as the previous scan was in January  showed it still small following chemotherapy and the April one showed it large, I wondered at what speed it’s growing. My reasoning was that we don’t know when it started growing again. It seems I’m the only one to puzzle about this which is why I say we all hear different things. The Doctor says it started growing straight away and they can’t do scans too often so can’t see where we are now. My daughter seems to agree that is valid. Working on that premise that it took 14 weeks to go from small to large I’m worried what increase there’s been in the last 6 weeks. Yvonne thinks if it’s grown huge Julia would be feeling pain as the tumour would have outgrown the area where the nerves were first cut. I argue that perhaps the  mass is growing up like a mountain rather than outwards beyond the bounds of the operation ton cut the nerve ends. I suspect the trouble is that neither of us wants to face too much truth.

It worries me that the Doctor is suggesting taking treatment now after resisting it before. Is it possibly because we’re on 10 months and he said today that few survive the year? Originally you may remember we were told 6-9 months maximum. Julia has defied so many odds so far and is enjoying her life. She loves her riding and is with a particularly good instructor at a great riding school. ( http://www.pennantparkridingcentre.com/  with Carl Crofts and his lovely wife Storm ) and she has our daughter’s wedding in September to look forward to. Is the Doctor expecting the quality of life to take a nosedive now? Anyway, he’s given us ( Given Julia I should say) 4 weeks to think about it before her next appointment but even she is asking why an appointment so soon when they’ve been further apart. In thae car coming home she wanted to talk and I wasn’t helpful. I was determined that Julia shouldn’t accept she’s dying and should just fight on. She says I refuse to accept the truth. She may be right but you see I did promise her a miracle. I swore I wouldn’t let anything bad happen to her and I’m powerless to stop it. I jump at every new miracle cure I see from aspirin to turmeric and hope something will help . Julia is my life and I don’t want to lose her, she’s much too young and has so much ahead of her. She has to stay around if only to handle the pets I tell her, on my own I’ll be bitten to death by them. She just laughs and says I’ll get by.

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39 Comments

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39 responses to “Promised you a Miracle. A cancer abroad.

  1. David, My heart goes out to you and to Julia. I wish there was something we could do to help you get through this. I wish there was a miracle cure for shrinking a tumour. We do grasp at straws. She is your love.

  2. I think that trying a new treatment is not at all a bad indication. They constantly evaluate and consider what needs to be done and what is better for the patient. It is possible that the doctor was at a conference and heard some excellent ideas regarding the pill form. It is possible that he read new literature from another country. It’s possible that he decided that a more aggressive approach (which many prefer) is appropriate to Julia’s stage. Personally I think there is every reason to welcome a new treatment.

    • All of your points are valid Ilil but he had every opportunity to say them to us and we’d have jumped at the news. Instead we hear about the negatives like side effects which sound horrific and would certainly spoil the quality of life she currently enjoys. It was their opinion that we should hold off until something needed to be done because Ju was showing signs of suffering and the side effects would be balanced out by the good, so what’s changed? Especially what’s changed his mind in the last 6 weeks since the last appointment when hang fire was the order of the day. Usually an aggressive approach is only taken when the patient is suffering and yet Julia has not complained.
      I’m not saying this shouldn’t be done, only that it’s worrying to have the problem approached in a different way to that they chose before without something instigating it.

      • I think it’s simply the issue of “staging.” It’s not that they are hiding something, but that they are not properly explaining. Doctors rarely explain. Julia has been through it now for ten months, they examine the stage of the cancer, and they think, based on what they see, that there is an option of something constructive beyond the palliative care which they offered until now. I see it as a huge hope, since palliative care alone NEVER CURES. The new pills may have come into consideration because Julia has been off the other treatment for a while, too, and is ready for another try. It is entirely positive approach since if they do not treat her, there is no hope, while if they do treat her, there is hope. It’s black and white.

  3. I am agreeing with Ilil 100% on this one David. Doctors never seem to explain all their thinking and it seems to me that trying a treatment means that there is /hope/. To me palliative care is scary. That is not what he is offering. You’re not going to lose her just yet. Hold to that. Medical science doesn’t have all the answers and sometimes people go into remission for no reason that they can explain. -absolutely enormous hugs to you both –

    • Thank you Andrea. As I said, what’s worrying is that one month they want to wait until Julia starts to show symptoms again and then suddenly it seems not. What the side effects may do is end her riding which means the treatment will lower her quality of life and yet they maintained they wanted to avoid this at all costs. It’s almost like they’re not saying something or know something we don’t and that’s not nice. Julia must be feeling it worst of all if she comes away feeling this is the beginning of the end.She hasn’t felt like that for ages and the fact she can still ride has been helping dispel the feelings of impending death.
      Huge Hugs back to you.

      • Oh. I see. But I think… you may be wrong. When Dad was in the hospital for those 6 weeks before he died the doctors kept trying to gently suggest that he wouldn’t make it. I was the one insisting that they keep trying to do whatever they could. And then they finally had to sit me down and tell me that palliative care was all they had left to offer.

        Maybe your doctors are different over there, I don’t know but I truly can’t see that they would suggest another course of treatment that would reduce quality of life if they did not think that that care would /extend/ life as well.

        Can you go back and talk to this doctor on your own? He might be more honest with you. The decision will always rest with Julia but I believe she relies on you to help her know what is the… best decision. For both of you.

        -heartfelt hugs-

      • I think they did use the words palliative care in regard to the drugs she’s taking though they always said the minute things changed and she started to suffer they’d try something else. These tablets or perhaps half dose of the previous chemotherapy. They rules out radio therapy a while ago. Since Ju is happy at the moment and doing well it seems odd that there’s been this change of heart and he’s now ready to offer treatment that could stop her riding and enjoying life the way she currently is.If he turned round and said this is a new drug with great results so far- then magic go ahead. But these are the same drugs he’s avoided giving her before because it might have a negative effect on her.
        I’ll hae to try and talk to him when we go back but I want Ju to think about it and make her own decision.
        Hugs.

      • I understand David. I’ll be thinking about you both a lot… -hugs and kisses-

    • Yes, exactly. Treatment means hope. Palliative care offers nothing.

  4. When I came across your blog, everybody was asking about Julia’s health. I din’t know what it was. Now, at loss of words. I wish somebody had the power to take away all the pain she, you and your family are going through. Hugs to you two!!

  5. I love that she just laughs at the thought of you being bitten to death by the pets. You had better look out, she might hide chocolate buttons under your pillow and release the girls for a midnight feast…

    I really feel for you, we are always terrified that bad things will happen to the ones we love. Being positive enough for the two of you is good, but maybe you do need to let her talk to you about how she feels too.

    I agree with Ilil and acflory, if the doctor didn’t think there was some hope for positive change I doubt he would ask her to try something new. (Doctors always have to talk up the negative side effects just in case you suffer from them, then you can’t say ‘you never told me’.)

    Hugs and positive thoughts for both of you.

    • Thanks sweetie.I have always hoped for treatment but been told that anything they had would interfere with her quality of life. They said “Better to leave her alone while she’s not suffering and is enjoying life, than risk upsetting it all.” Now it seems they want to risk upsetting it all. If there’s a positive outcome I’m all for it but the change of heart seems odd.

  6. Catherine Johnson

    Oh my goodness that is heart-wrenching. My husband’s grandmother was a trooper and she held on through hard times with so many wonderful things to look forward too with a big family. She had weddings and births and when they ran out so did she. What a hard thing to decide now, the treatment. Whatever you decide i hope it is the right thing for all of you, take care!

    • Don’t worry Catherine, when my daughter get’s married in September they plan to start trying for children straight away. If that isn’t a reason to keep going, nothing is. There’s certainly plenty to keep her going with all the wedding plans now, and with luck no-one will notice me slip out of the room when the talk turns to shoes, handbags and bridal veils.
      Hugs

  7. Sorry if I sound like a broken record, my friends. But I am not a newcomer to cancer, and to me it seems that when suddenly there is an option of treatment, it is a reason to rejoice and try it. Yes, there are side effects, but they are temporary, and treatment equals hope. Non treatment equals lack of hope.

  8. All I can do is continue as I have… lots of love and hugs mixed with tons of prayers for you and Ju. I wish it was enough. Wow it sure has a way of making one feel helpless doesn’t it? However, Ju could not ask for a better husband and care taker than you. You give her all she needs mixed with wonderful bits of love and laughter… you even pretend to resist so she can talk you into getting another pet rat. You big softy. Dont ever think you aren’t doing enough. You ‘are’ enough.

    Love and hugs,
    Patti
    mom says to give Ju a gentle squoodge 🙂

    • That’s lovely Patti but please don’t give all my secrets away ,, I have a reputation to uphold as the man who says NO. Please thank Mom and tell her the squoodges are passed on.
      Hugs to you all
      David

  9. Since we are functioning here as a committee, with or without David’s permission, I have a thought I wanted to present. I am sure Julia realizes that we only talk about it because we all love her, so hopefully she will forgive my intrusion.

    So, here are the choices:

    On one hand, do the treatment. It may shrink the tumor and bring on remission, but might lower the quality of life.

    On the other hand, don’t do the treatment. It will maintain a good quality of life, but not shrink the tumor and lose the hope for remission.

    Both options are harsh. So how about a third hand? Why not try it for a short time, and see how it affects the quality of life? If the side effects are not terrible, finish the course of treatment. If the side effects are too much to bear, stop the treatment!

    • Or the fourth option which was was originally mooted by the doctors.
      Wait until Julia starts to suffer a reduced quality of life naturally and then start the treatment . That way she rides for as long as possible without putting it at risk and any treatment can’t make things worse than they are. If the treatment actually works, even with side effects and she regains some quality of life she’s winning again.If the treatment doesn’t work, she’s at least enjoyed the time she has had.
      The problem with the third option is that taking the treatment is likely to mean no riding and possibly no walking round looking at wedding clothes. If the treatment is harsh, stopping it will not end the side effects straight away as for instance if she lost her hair it would be a long time growing back. The effects of chemo remain with the body for ages after treatment.

  10. Dear David,
    There are no words that I can say that could really express how I feel. So many of us have had loved ones go through such a journey. I still keep you and Julia in my thoughts and prayers – sending healing forces your way. Much love.
    Piroska

  11. I hate meeting you under these circumstances – such confusing, conflicting news, and thoughts. There’s plenty of time to sort yourself out dear man. The main thing to focus on now is Julia: her needs, her wishes, and living life to the fullest extent (possible), every minute of the day. My thoughts are with you both, and your daughter.

  12. You bared soul stirs all who read your words. My best wishes to you both. Doctors can be wrong. People can be strong. Both of you have to be on this journey. Take care of each other.

    • Thanks so much Shawn. Julia knows this is a journey she doesn’t have to take on her own. I’ll be there every step of the way. She is my life. We’ve already proved the doctors wrong and intend to keep doing so until she’s at least 90.
      Hugs and our best wishes back. xx

  13. Food Stories

    I’m praying for your whole family, David.

  14. Will be praying for your family.

    BE ENCOURAGED! BE BLESSED!

  15. Saying a prayer for you to be able to make the right decision. I do know the hell you’re going through.

    • Thank you Mary. I feel sorry that so many others have gone through this before me but I can see there is some strength out three to have survived which will help us get through this,.
      Hugs

  16. Lovely photo, David.
    Big Hugs x

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