Els's Cancer Blog

Back after a long time..

Hi everybody,

Sorry that I have not been posting since long. I was very ill due to the treatment, which  started the first day of the coronoa lock down in Holland.

So much happened in a short while....I had to mobilise my energy (had very little as to none) and stayed just in contact on whatsapp with Susan (also on this blog) who  lives in Amsterdam. Susan you were a great help! (she knows :-))

I did not check what you all have been writing since I left the blog , so I have no idea how youre all doing', but I will take time for that later.

However, I like to tell you a bit of what happened.

I had a toxic reaction on the chemo (capacetabine, tablets) which drained my bonemarrow for quite a while on all cells, that were rapidly disappearing and not coming back. Still now the white cells, especially the lymfocytes, are low, also the red ones, but they are going up. Which makes me very careful concerning covid-19 . Uptill now I do not receive any visitors but some, to keep my studio safe, but I go out with friends/family  for a stroll in the woods..

It took a while (also due to COVID they had diminished the bloodtest-appointments) before the oncologist recognized I had a problem  in my metabolism; it was not just a dip, the chemo was staying in the body and building up. eating away bonemarrow. I became very sick and for a week it looked like I was departing rapidly. All the medication to help side effects as severe diarrhea nausiness and complete lack of energy worsened my case. I  also had very strong side effects on the medication against side effects! Luckily so..because that why they started to look closer. And ordred bloodtests

I was then stripped of all mediaction, chemo included. My body does not seem to be able to deal with quite a few drugs (I did not know beacuse I hardly took any in my life). slowly I got better. Radiation went on, however, I was going in and coming out crying, completely wasted, but since I just had to lay down there and try not to move for a few minutes, I was able to go on with this part of the treatment, luckily.  At least I had half of it.

Due to Corona there was no healthcare for me in hospital, just for COVID patiients, which was a bit frightening. The risk of getting the virus was too high. Nowing this I did everything to keep myself alive.  Every night I was on an emergency call with an oncologist who would tell me what to do. And I survided!

The joy of still being a live stayed with me for a long time, because when I started to feel better I could just think: WOW, I feel better! I am still HERE! Nothing compares to what I had been through. All the other side effects of the radiationtherapy seemed 'not that bad'; still there were some nasty ones (and still).

I had a very good supportgroup that came to take care of me, to me sure that I could drink something and to help me through the day, although coronarules were against it. I was very lucky. I am very grateful.  When I was so sick I was not able to take a taxi, so they drove me everyday, all 36 days . Even though it was not possible to keep enough distance.

Weird was, that in 'my' hospital nobody from the nurses and doctors was wearing any protection, no masks or gloves, no distance kept. We even had a little foodplace were one could buy drinks and (fresh) foods! What a crazy world. Everywhere  all  bars and restaurants etc were  closed!

I was happy about it because later, when I was able to eat an drink again and hold somewhat my poop and pee ( I wore diapers anyway), it was what pulled me trough also: a seemingly normal world in all this craziness. Just 15 minutes of  making belief we were on an outing. ;-))

I had a MRI-scan just before the end of the treatment, which showed the tumor had diminished, but was still alive in small form. The glands however showed no real change, but it is said that it takes longer. Also the nodule in my rectum was not effected by the radiation. The oncologist insists that the treatment will do its work at least three months after the last day. Even side effects can still appear later on. Okay, we'll see..

Mid august there will be another scan and bloodlevels taken to see what is the ultimate score. 

I lost weight, but gained some now as well, which I take as a good sign. People start to say: 'you look better..'  Before they just said nothing. Which is also very remarkable.

After the hard bit of the chemo, since mid april, I was able to make walks, which did me a lot of good mentally also. And I am still very happy. Being so sick changed me. And it effected my the fear of  death I had.  I spend much more time in the present! (very good name for the here and now ;-))

What a rollercoaster a treatment can be. How dangerous to the health, ironically. And how difficult it is for doctors, apparently, to shift side effects from other problems. 

No more chemo for me. That is strangely a sad and  joyful idea for me.  It makes me aware that there is not a whole lot possible in cancer treatment. And the treatment is very agressive to some of us. The joy of being alive is now less strong than before, but I still feel it deep down.  Whatever will happen next, I know how strong I am and how brave. And how many dear ones are ready to help me through.. even if the gouvernment sets rules that work against it.

That's enough.. I will read some of the entries on the blog. And keep you posted now and then :-)

Hugs for you

Els

3 people like this post.
Annabelle threw a punch at your cancer.
3 people sent you a prayer.
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Els,
I haven't been on the blog much so I just found your story today. You have definitely been through some rough treatment and recovery and I can tell the virus hasn't helped. Sounds like you do have some angels helping you so that's a true blessing. I will pray that all bad cells will disappear by your next scan and agree radiation will keep working for months after end of treatment.
I hate a 'superfood' during treatment and have continued to this day. I like to believe it helped me but I have no evidence to that claim. It's watercress and I ate it raw to get maximum health benefits. Since it's a little bitter, you can't taste it if you mix it with salad and add a little dressing. I also took turmeric everyday and still do. I'm a 5+ year survivor of stage 3b, my story is on these pages.
I'll be following your story. I wish I could do more.
Xoxo Lisa
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Thanks Lisa! How geat to have already respons on my post. Thanks for the superfood. In fact a like bitter :-) Turmeric I do not know . It is very hopeful to hear that with stage 3B you have passed the 5 years. Hope you do not endure too much restraints.. Thanks for your prayers, that means a lot to me!
Lucky likes this comment
Your story of how your body reacted to the chemo sounds like mine except I ended in the hospital for a month with a bowel obstruction and extremely low wbc. The oncologist did not follow my counts and let them drop without saying anything. The day they dropped to a little above 0 my husband drove me to the emergency room. I went a month without finishing radiation until I was released. It is crazy how hospitals are reacting to the coronavirus. It sounds like you have a good support team! with friends !Everyone needs support to get through cancer treatment. Prayers you heal quickly and the world gets a vaccine for this horrible virus that has effected all of our lives around the World!
Lucky, Susan like this comment
Hi Laura thank you.
How hrrible that sounds! I am glad you have a caring husband! Tanks for your prayers. I am not sure a vaccine will really do the job. So much confusing information.. I am glad you survided also!!
Lucky, Laura like this comment
Good morning and thank you for sharing your story. I am so sorry this has been so rough for you. I am equally happy that you made it through. Yes, the radiation will continue to keep working. Yes, the side effects will continue to keep rearing their ugly little heads. There are also some positives that come from all of this- a new attitude and outlook on life being one of them. Sending hugs, love, and prayers
Lucky, Susan like this comment
Hi Lori, a hug and prayers for you too. You are right: the new outlook has reenforced me.
Lori, Lucky like this comment
Hi Els! Thank you for the updates! I hope your August CT scan will be clear. My radiologist said that radiation works for 6 months after the last dose. So yours is still working! I am glad you have a good support group. Hugs!
Lucky, Susan like this comment
Thanks Olga,I hope so too. A big Hug back. Hope you are fine
Olga, Lucky like this comment
Hi Els. I wondered, just the other day, How you were doing. Such challenges you’ve endured! Sending you healing energy 👐🏽🙏🏼, peace and ease as you heal!
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Hi Susan, nice to hear you wondered about me. I fellt a bit bad to not be able to post anymore. But I guess who would understand better than my fellow bloggers? Thanks you for the healing..
Lucky likes this comment
Wow! Your a Fighter and survivor! Glad to hear things are starting to go in a more positive direction. I also had a hard time with the chemo affecting by blood levels. I stayed in the hospital twice for weeks and had to get blood transfusions. Glad it worked out for you. Take care of your self. 😊💙
Susan likes this comment
Hi Allseitz ( cannot remember if this is your first name, do not want to be rude) You survided as well. So many people became very sick.
COVID prevented me from going to the hospital which is in restrospect not so bad. Apparently I miss an enzyme that breaks down chemo and some other drugs maybe as well. They try to discover what is is. It may be a undetected version of DHPD..that is wat is recorded in my file.
All the best for you as well and I am happy you are doing fine now! Hugs
For white cells there is no blood transfusion possible, but they might do other stuff. Anyway, It is too bad that drugs that should cure you tear you down. I am
Allseitz, Lucky like this comment
Sending you hugs and prayers. 🌸❤️
Susan, Els like this comment
Hi Els, I’m so thankful you are on the upside now....what a rough road you’ve been on! I truly believe the radiation is still working too and I encourage you to keep focusing on being fully healed, you’re body has been through so much and it can keep mending / healing / recovering 🙌🏼. Thanks for giving us an update, I’ve often wondered how you are doing! Much positivity and love being sent to you! ❤️ Kim
Lucky, Susan like this comment
Thanks Kim, I thought of you bloggers as well but I was not energetic enough.. glad to talk to you now :-)
Kim likes this comment
Dear Els,
Oh my you've been through a bazaar war! And you have such a wonderful attitude. Wonderful, that you are so joyful of "now"
I pray, it goes well for you from now on. That you will keep healing, and finding more joy than you can imagine.
Love and hugs!
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Oh Thank you, That is a very nice prayer.. which I like to forward to all of you!!!
You are right, Els—This disease and treatment lead to a new way of thinking and life perspectives. You have been through more than most here, but have emerged with positivity. I also had less than the prescribed chemo because my wbc counts were at zero as well, and I became very sick with a C. Diff. infection. But in May I celebrated my sixth year post treatment with no evidence of disease (NED). Hang in there, get lots of rest, start exercising every day if you haven’t already, and be good to yourself. Sounds like you have a wonderful support system in place as well. Love to you!
Susan, SUSAN like this comment
Thank you lucky! Did you experience such a change as well? How?
I now finally know what NED is..I suspected it, but untail now I just never looked it up haha great to know. And I am very glad for you how it is now, and that you battled this infection! I bet all people who had cancer discover how brave they can be and how happy. LOve to you too
Lucky likes this comment
Yes, my guess is almost everyone who goes through a difficult cancer and treatment changes, in many ways really. As you said, when you finally emerge from the suffering of treatment, you start to feel almost giddy, and so happy to be alive. Yes, those feelings ebb and flow, but overall it becomes a part of the “new normal” we all deal with. I don’t let the lingering bowel problems get me down, I just work around them. You’ve got a great attitude, and I think you’ll do well. Keep us posted!
Hi Els, it’s so good to see you on this Blog again! As I said before, these people here know all the problems you have been through and understand. This has been an awful rocky road, but you will start feeling better by the day. We are all living in these unprecedented times, making life so much harder. Take care, and I’m so glad you are feeling better!
Kim, Lucky like this comment
Hi dear Susan, your support was very important to me. And it was so good to see a baby born and the happyness that it gave you, even with a mask on.. Thank you again for pulling me through in the dark moments of uncertainty and loneliness. Even though the friends and family around me are great and loving, only someone like you who experienced it herself can really know how it is.... I am lucky to have found you. I hope all is fine with you too.
Susan, Lucky like this comment
Els, just to say hello and thank you for this post, even though reading your news is painful! Being alive is what it is all about...all we can do is get through every day, One Day At A Time, and help our friends and family do the same.

Chemo is essentially chemical warfare that can damage all parts of your body as well as the cancer cells. I spent over a year unable to eat any dairy products as the chemo had induced an immune system respone to dairy protein (fermented items like yogurt or hard cheese were ok), and had several trips to the hospital before I understood what it was. I'm glad to be alive all the same! Hang on...and let us know how you are doing.
Lucky likes this comment
Thank you Helen, that is interesting to know. That must have been difficult for you untill it became clear... is the immune response still active?
I could only eat coocked oats with apples and bananas in water and soft french cheese like brie.. How different do we react. Whats the use of prescribing a diet.. we have to find out for ourselves isn't it? Í am also glad that you are alive :-))
Helen Marshall, Lucky like this comment
After about 18 months I tried eating 1/2 of a spoon of ice cream (which is mostly milk!). Several days later I had a spoonful. After a week with no effects I tried a bit more...and finally was able to have a dish! But I don't drink milk all the same!
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Hi Els..thank u for sharing your journey with us. So sorry you suffered so much to add on top of that in the midst of Covid. It surprises me that health care workers in your hospital are not wearing masks. I am so happy that you are well enough to post and if treatment is done, you are on your way to recovery and healing. Yes, radiation is still killing those cancer cells up to 6mos I was told. It will also take awhile for blood cells to normalize. Took me about 10 months post treatment.
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Thanks!!
that is a long time, ten months... I undrstand for red cells, but for white also?
Hi Els. I'm glad to see your update, but sorry this has been such a tough time for you. Add to that the pandemic and how it is affecting your ability to get out and about and it seems like the perfect storm. I am glad that you seem to be moving forward in your recovery despite current events. Take good care and please update us when you can.
I will, thank you. It is a very strange experience to have treatment during covid. Most of the treatments were called off! Mostly due to lack of doctors and IC space, but also because of the spreading, the dangers of the virus. Because it was the first day of lockdown things were badly organised. Luckily I like a bit of chaos, it is in my nature :-)
Els, I am so happy you came to share with us. How wonderful of your supporters to drive you, I found that was one of the things i treasured the most during treatment. you have been to hell and back, it seems. I so admire your courage, but feel so sad you had to go through this during Covid, this treatment is bad enough without that added stress. It is amazing, once we survive this treatment, we realize how very tough we are. And you deserve a huge GOLD medal for what you went through. Glad things are looking up for you, I will say some extra prayers for you. I too, suffered from low blood counts for a long time, it is encouraging that yours are showing an uptick. Wishing you much continued strength, and back to 100% wellness soon. I also enjoyed reading Lisa's hint about watercress - interesting, I will try that, and I can vouch for the Tumeric. A Dr. friend of mine, from India, told me all about it. Just a pinch in food daily works wonders for inflammation. I will post a link about it.
take good care, Gail
Thanks very much Gail for your heartwarming words and prayers. It seems that all of us deserve medals of Gold!
Tumeric, that is KURKUMA (curcuma) right? I have it. Does it work also when cooked? In Holland people make smoothies with curcuma in it. Or we color rice with it. Thanks for telling me it works for you, and the link. You have experience with aryuvedic healthcare also? i am curious to know. I also love watercress so it won't be a punishment to eat a lot of that. Too bad i still crave for chocolat as well ...
How did you deal with Covid?
I just found this, pretty interesting. I actually have very little experience to ayurvedic healthcare, but I am a believer. Florida is a hotspot for Covid right now, and luckily I am not working in the hospital right now, pretty much retired. So I am following the precautions with mask and cleaning etc. We have only eaten out once, and that was takeout at an outside table that was there. And we did get a pizza takeout as well. So I am tired of cooking every day! I am going to look for that recipe I have for a iced chai with turmeric. I have not made it yet, but I will try and then share if it's good!
Link: https://www.ncbi.nlm.nih.gov/books/NBK92752/#:~:text=Turmeric%20is%20a%20product%20of,native%20to%20tropical%20South%20Asia.
Els likes this comment
great! looking forward to your recipe. I will put the turmeric i have to use...
Oh Els , I'm so sorry you went through such an awful time. You must be a special kind of person that your friends took care of you in such a caring and loving way; you deserve to have such friends. I know you hold them in your heart. 😘
Hi Marcia, yes I hold them in my heart! Thansk for the compliment but..I think they are more special than me. And I was brave enough to send message out that I was desparate and could not take care of myself. It was a turning point in my life to do such a thing. Normally I try to do everything by my self... I was also lucky that some did not have vital Jobs lie being a nurse or doctor and were more flexible than before covid..which was a good side of Corona for me. Also that I did not have te be rude to people telling them to stay away or keep distance because my impaired immune system ..everybody was doing the same!! How convenient. Now things are getting normal which is more complicated for all of us, to know what is wise and what is stupid.
Anyway, hurray for all the support(groups) in the world!!
Marcia likes this comment
Happy birthday week! Hope you are recovering.
Thanks Lori, yes I am recovering. Quite well in fact. I rode a bicycle yesterday! wow!
Lori likes this comment
Yay!
Happy birthday Els! I hope you’re feeling better and regaining your health and wellbeing.
Thank you Lucky, i get better and better, but I am quitte stressed out now the MRI scan to see the results of the treatment comes nearer. I would like to postpone since I start just now to feel like a normal human being. Tha keeps my head a bit busy...
Lucky likes this comment
That is quite normal Els. It’s called “scan-ziety” (don’t remember the spelling) and we’ve all gone through it. Try to occupy your mind with activities that don’t stress you out, and hang in there! And keep us posted!
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lost my post

Sorry , but I spent half an hour writing a post to thank you for your reactions and to tell you what is going on. It iis late and i am tired so it has to wait till tomorrow.

But very short: they won't ty me down! :-))

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Easterly sent you a prayer.
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I think we’ve all done it.... x
We’re with you Els!
Nope, tying down not necessary, I hope you feel reassured. X
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Vital Info

Posts

January 24, 2020

Bilthoven, Netherlands 3723G

July 21, 1965

Cancer Info

Anal Cancer

June 2

Stage 3

2.1 - 3.0 cm

Grade 3

Yes

Fluorouracil (5-FU)

uncertainty and pain, confrontation with death

life's importance and happiness go beyond health.

not to be too worried, just be there

yes. homeopathy

regionally metastasized in pelvis.

to just be themselves

University Hospital Utrecht The Netherlands

to listen to early signs of fatigue helps me to guard a certain level of energy

It helps if I do not judge myself in anything and encourage my needs, even if some people oppose or do not understand

yes, tumor on the verge of the internal sphincter, 2,4cm. Polype in sigmoid colon, 2,lymphenodes involved pelvic and inguinal. Stage 3

in the end I had thrombosed hemorrhoides (never had, very painful) but surgeon did not see tumor, not even with ultra sound. After hem. was cut and cured, it still hurt. So I examined it myself and felt a rough kind of flat lump and I went back. I was sent to another surgeon and he took it away and sent it for biopsy. It was cancer. I had already had pain riding bicycle for a year, riding with 3 exta thick layers under me...and still.., I had bloody and deformed stools, pain in left cheek of the butt (therapist was wondering why her treatment did not help), I suffered tiredness and my legs seemed to have become heavy things that I dragged along. The weirdest thing I encountered was cramps in my pelvic muscles followed by involontary orgasms, very painful afterwards. I feel a bit ashamed to write this, but someone might be helped by it.. A year later, I had been free of cancer and symptoms, the hemerrhoids started again, and also the other signs, but nothing was found. Now, almost 8 months later it seems that behind the scartissue, on the other side of the anal canal, in the perineum, towards the vagina (I can feel it clearly, why did I not think of examining there before?), a large lump has developed since. So I went to the clinic. They took a biopsy and it came out positive. Scans show lymph node involvement. As opposed to what was said earlier: HPV-

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