Recovery time after Successful first line treatment, hooray!

[Lindaura]

Hello everyone,

I have just completed my excellent treatment for stage 3, high grade serous carcinoma (falopian tube or Ovarian in origin). I live in the centre of Bath and my doctors and surgeon and wonderful treatment was at the RUH in Bath.

I had the Carbo/taxol regimen with thorough debulking surgery after 4 rounds. Then 2 more rounds of Chemo. My CA-125 went from 3000 to the present day 9. And there is no sign of disease or spread in my CT scans. The doctor assured me that I am in the best possible position.

I did however, start out very ill, from a totally fit, vegetarian, Self-employed, working full time, 71 year old energetic woman, I became completely weak, breathless and unable to eat in just a week's time.

I was originally diagnosed as stage 4, because of the pleural effusion that crushed my lungs, but that was downgraded, thankfully, to stage 3, as there was no other sign of spread to the inside of any organs except my ovaries. But there were hundreds of tumers and lesions all over the outside of my bowels and inside my abdomens cavity.

And, I had blood clots inside both lungs, caused by "sticky blood" another gift from the cancer.

What I am getting at, is that the cancer and the treatment wiped me out, and except for a few moments here and there, I have been basically bed ridden for the last 7 months.

At my final visit, my lovely doctor advised me to take it slow, that the comeback from the place I was in, was not going to be quick. She said not to expect more than 75% of what I was originally after 2 months from now.

I try to do more each day, simple excercises, and walking around my little house, ( it's an ancient 4 story, stone house in the city centre) I do simple tasks, like sweeping the floor and a tiny bit of tidying... but I do get breathless quickly, even though I think my lungs are fine now.

I would like to hear from other ladies who have managed their recovery after their first line treatment with Carbo/taxol and surgery. How are you? What was your plan?

Thank you,

Laura

[Katmal-UK]

H Laura Sounds like you are doing well ! I was 48 when diagnosed at the same stage as yourself. I have to say that although I wasn't bedridden it took me several months to return to what I would classify as 'fully fit' albeit I'm sure that what I went through left me not 100%. I returned to work full time after op and first line treatment after about 7 months. Given the difference in age (no disrespect whatsoever intended) I would imagine that recovery might take slightly longer and if your dr is saying 75% after 2 months then I would say that's pretty good. Take it easy, listen to your body (best advice I can offer) and recovery will come. xx Best wishes. Kathy xx

[Lindaura in reply to Katmal-UK]

Thanks, Kathy,

I guess it 's the listen to your body that is the problem. For most of my life, bed had been mainly for sleeping and fun shenanigans. I was up and around town the rest of the time.

But now, lying in bed is the most comfortable position I can be in. I feel great and full of energy when I am in my comfy bed.

I have a clever bed-desk for my computer, so I can attend to work related tasks and I conduct a lot of business from just my iPhone.

Then I get up, walk upstairs to the kitchen, wash a few dishes and can't wait to get back into my cosy nest!

When I was too ill to walk more than a few feet, we moved me down to the lower ground floor, into my husbands music studio, because the bathroom is on this level, just a few feet away. I grew to love my little nest too much!

What sorts of activities were you capable of right after treatment?

Thanks,

Laura

[Katmal-UK in reply to Lindaura]

Hi Laura Pretty much everything to be honest. I was (and am) quite stubborn. They tell you not to hoover etc for 6 week after your op. I soon figured after if I sat on sofa/chairs and used the hoover I could pretty much get most of the room hovered lol. After op and chemo I went back to work supposedly on phased return but got into the office at 8.45 day one and stayed until 5.30. Exhausted yes but I do tend to push myself tho at weekends, particularly on Saturday I tend to be la. Luckily I have a hubby who is very good round the house and does loads. I tried not to stay in bed too much as I am an early riser even on weekends and preferred to potter. I do totally believe in listening to your body though and if you need the rest and you are comfortable then you probably are in the best place.Give yourself time..... Big Hug. Kathy xx

[Lindaura in reply to Katmal-UK]

Thanks so much.

You sound amazing!

[Katmal-UK in reply to Lindaura]

Not amazing lol just stubborn and probably don't like to be told I can't do something lol!

[Irisisme]

Hello Laura,

I had chemo/debulking/chemo/Avastin and came off the Avastin last October. It is a slow recovery so please try not to get too frustrated.

I also have the seeding all through the peritoneum and along the bowel wall and diaphragm. I am still getting abdominal pain & my bowels aren't working well so that has slowed recovery, but I think most of us will tell you that recovery takes longer than we expect it to.

Be gentle with yourself and set realistic goals. Don't be too upset if you fail to reach a goal, just tell yourself to slow it down next time. It sounds to me as though you have the right attitude and approach.

We are all different and it takes longer for some than others. I used to get upset, annoyed and frustrated when I read on e.g. The Macmillan site how we could deal with fatigue by taking the dog for a short walk - I wish! So I set my goal as being able to walk around 2 football pitches with hubby and dogs. So far I've managed it once - then had a setback. Setbacks happen, we are trying and that's what counts.

Stay positive and keep us posted on your progress.

Good Luck,

Iris xx

[Lindaura in reply to Irisisme]

Thanks so much, Iris.

You are so right about the dog walk. Impossible to imagine right now. One of the silver linings of this catastrophe, is that my adult daughter, who had been ill most of her young life, took over the dog walk most days to give my husband time to prepare dinner. He is an excellent cook, which sadly I couldn't enjoy for the first 6 months of treatment, but during the last chemo, my tastebuds came back and my appetite soared. Gained 5 pounds in 3 weeks!

Anyway, I did a few little tasks today and wore myself out, so luxuriating in my nest with Netflix. My big goal this week is to walk upstairs and eat with husband and daughter in the dining room every night. Been eating by myself from a tray this past seven months!

So thanks again for your kind reminder not to be impatient. There's no blueprint for us, so we are struggling to find our paths, I guess.

Best wishes,

Laura

[Irisisme]

Ps I had to give up my beloved gardening, but I discovered art and do that instead and I love it. Very happy about that.

Embrace your new normal!

[Lyndy]

Well done Lindalaura! I had a very similar story to you, also veggie and fairly fit before being very ill summer 2015.

I joined a gym for cancer patients which really gave me confidence in what my body could still do. I walked a lot and I did what I wanted to do (got back on a horse..against medical advice but good for my wellbeing).

Diet wise I didn’t do anything special but did try to keep to a healthy diet full of fruit and veg with plenty of protein.

Have fun because this is time you have earned the hard way xxL

[Lindaura in reply to Lyndy]

Thanks Lyndy,

We have a great gym at the YMCA here in Bath that had a special deal and physical Therapy program for cancer patients, too, but it looks like I am several months away from joining up!

I am eating a more specialised, totally vegan Cancer fighting diet, too.

So, back to baby steps for me...

Best wishes,

Laura

[Seasun36-uk]

Hi Laura, gosh weren't you poorly - thank goodness your husband called the ambulance. It's amazing how quickly you can go 'downhill'. I am the same as you, aged 58 at diagnosis. They still say Stage 4, because of the pleural effusion but no invasion of other organs, just on the edges of liver & diaphragm. I found the operation knocked me out for a while & now the Avastin (numerous aches). I love my bed now too & find it peaceful & relaxing to have an early night & read first. The best advice I was given (which you know instinctively) was by the Physio after my Op - walking. I mean short walks, around the house initially and I also think stairs are great exercise! Simple things like putting the shopping away or emptying the dishwasher are all progress! Stretching is good. Think back to PT at school 🙂. Sounds like you are doing well. I finished my post-op chemo in September & feel 80% back to normal, but that's because I am still on Avastin I think. How wonderful that you've done so well & had good treatment. Linda xx 🌷 P.S. I like your hair colouring!

[Lindaura in reply to Seasun36-uk]

Thanks, Season,

Yes, u am taking advice and attacking small tastes, one at a time spaced throughout the day, with loads of rest in between.

I'm learning my limits and each day is different.

My interesting hair colour is courtesy of the wonderful McMillam Cancer Charity, who helped with the search for the right wig and helped pay for it.

Best wishes,

Laura

[Eriksendi]

Hi Laura - I was 58 at diagnosis and like you previously fit and healthy and worked full time - stage 3 high grade serous. I had the same treatment with an extra operation after chemo 2 due to a perforated bowel, 2 more chemos then debulking followed by a further 3 chemos, 7 in total. I finished chemo at the end of November and still haven't managed to get back to work yet. I am trying to walk and be as active as possible. One week I managed 16 miles but I did suffer for it!! The breathlessness is getting better but I'm full of aches and pains and tiredness and my stomach and stoma are all over the place. Don't be hard on yourself, pace yourself and I set myself manageable goals daily and weekly and if I met then rewarded myself, if not just amended them. X x

[Lindaura in reply to Eriksendi]

Gosh,

It sounds like you have been through the ringer.

It is reassuring to hear that you still have breathlessness. So I am not alone.

November doesn't seem so long ago, so you are definitely making progress - and you have a lot more to deal with (stoma) than many of us.

Thanks for your story.

Best wishes for a full recovery,

Laura

[Eriksendi in reply to Lindaura]

Thank you. The Stoma sounds much worse than it actually is in reality. I’m in for tests next week as they are hoping to reverse it. Fingers crossed. They thought it was cancer spots that had burst but histology after debulking showed no signs of invasive disease so they think it was diverticulitis. I’ve had counselling and help from McMillan which really helped me.

[Lindaura in reply to Eriksendi]

McMillan is great. I just wish I had turned to them sooner. They just got me a Blue (disabled) Badge for my car, after 7 months of not being able to walk more than a few feet, and now I will be running marathons soon (in your dreams) and are trying to get me some financial aid.

Best of luck on your tests,

Laurs

[January-2016-UK]

You’re doing the right thing by having a goal like eating in the dining room instead of a tray, just in case your nest becomes too tempting! When the weather warms up a few steps in the garden will doubtless also beckon.

I was only 67 when I was diagnosed Stage IIIC and nowhere near as ill as you. I was very lucky with my op and chemo. I have some peripheral neuropathy in my hands and feet but other than that I’m almost back to normal, apart from going to bed earlier than I used. Oh yes, and I seem to have chemo brain and forget things and lose things and need to concentrate more than I used.

Good luck with your recovery.

[Lindaura in reply to January-2016-UK]

Hi, was that January 2016 that you were first diagnosed?

Sounds like you also are doing very well.

My sleeping and waking times were changed dramatically by spending so much time in the hospital. The three meals a day thing, too.

I used to wake up at 10:00, drink 3 cups of soya milky coffee as I worked at the computer.

Eat breakfast a 2:00 or 3:00 (so more like brunch) and dinner at 8:00or 9:00pm. Well my husband is the chef and he starts dinner late., but I have three meals a day now and I have not been able to drink coffee since I fell ill in August.

Best wishes,

Laura

[January-2016-UK in reply to Lindaura]

Hello Laura,

Yes, January 2016 was when I had my full diagnosis although it was known I had ovarian cancer from November 2015, just not what type.

I’m fine with coffee, but red wine tastes somewhat metallic, such a shame. I did have periods where some things tasted too fatty or too salty but that’s disappeared now. I initially made a number if changes to my diet, such as swapping cow products for goat, etc but eventually gave up the changes apart from eating nuts, which I only used to do at Christmas.

All the best!

Helen

[kat98116]

Laura, I can't believe I just read your post, because except for a slight difference in our ages (I am 64), your journey sounds just like mine. I have just finished 10 rounds of carbo/taxol with a break for surgery in the middle. My CA 125 was high of 7000, now down within normal range. In two weeks I will have my first post-chemo scan (5 weeks after last chemo) and I am envisioning the same result as you. I, too, was given a stage IV due only to pleural effusion. I, too, have had numerous "dots" of cancer left over after the surgery in the abdomen that were too small to remove surgically. The chemo is supposed to get rid of them. I, too, was finally diagnosed with cancer originating in the tubes after the surgery; originally they thought it was PPC. I, too, was a fit, organic eating grandmother of two who barely was sick in her life! I will be following this post carefully and following you! My scan is on March 30 and I anticipate the same news as yours! Thank you for writing this uplifting post! Kathy in Seattle USA

[Lindaura in reply to kat98116]

Hi Kathy,

Very interesting. I used to live in San Francisco, but spent a year in Portland when I visited Seattle lots.

When we moved to the UK, we kept our Blue Cross insurance for 5 years, just in case, but it finally was just too expensive and it turns out that the NHS has been wonderful- at least our experience has been very life affirming. They decided to take Cancer seriously and they really do!

Just washed a few dishes after a splendid Indian dinner cooked up by my chef husband, then could not stand up any longer and am now back in my bed, but I went upstairs to dine, and did arm exercises by my bed and leg exercises in the bed in the morning and some business on the computer in the afternoon then rested in the bed the rest of the day.

Now my beautiful adult daughter will sit next to me on the bed and we shall watch the 4th season of Justified together.

Good luck with everything,

Laura

[kat98116 in reply to Lindaura]

Keep working at it slowly Laura! I lost most of my leg muscle strength during chemo so walking and especially stairs are really tough. My oncologist said it would definitely take some time to rebuild. Keep eating that protein! Best, Kathy

[Peg8080]

Hi Laura,

I was diagnosed with Stage IV OC in July 2017. I was 58 years old and very active and healthy. I ate very healthy as well. I first had a debulking surgery that involved a total hysterectomy, 6 inches of the colon, a sliver of stomach, a sliver of the pancreas, the spleen, 20% of my diaphragm and my omentum. I recovered nicely from surgery and started chemo in August. 6 rounds of carbo/taxol with Avastin and immunotherapy /placebo. After 6 rounds of chemo which I completed in Dec. I am on Avastin and immunotherapy for 18 treatments. It is a clinical trial. I thought after I completed chemo I would have all of my energy back. Unfortunately, that did not happen. I can walk but tire easily afterwards. I used to be one that could go and go. I have abdominal pain at times that limit me from what I want to do some times. I used to jog 3-5 miles and cannot see that happening anytime soon. My reports are great with my oncologist so I feel blessed. My CA-125 started out at 976 and is now 5. I do not worry about cancer and try to live every day to the fullest, but how often our bodies remind of us of what we have been through and what are limitations are. I think that was the hardiest thing for me. I am taking yoga. I feel that is helping me get stronger Laura. I had never taken before so that was good I could not compare to the old me. I try to focus on something positive mentally when I feel defeated or weak physically. My doctor told me it will take time. He said I may never be 100% where I was. I will continue to try to be strong. We have all been through a lot Laura. What you are going through is totally normal. Just know we all care for each other on this website. I have learned so much from others here.

Love and Hugs,

Peggy

[Lindaura in reply to Peg8080]

Thanks so much, Peggy,

Your journey began just a month ahead of mine, but you had a really radical surgery.

I was lucky, as none of my organs had been invaded, and I had my spleen removed in my 20s.

But I can't believe how well you recorded from that surgery! And then to have 6 rounds of Chemo, when it really has a cumulative effect is truly a double whammy.

Ladies tell us that Avastin can have some painful achy side-effects, but it is a great safe guard, as is the immunotherapy you are getting.

It's wonderful that you are doing Yoga. It is peaceful and interesting way to get your body back.

I wish you all the best,

Laura

[Peg8080 in reply to Lindaura]

Thank you so much Laura!