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MAY 2021 CHEMOTHERAPY STARTERS

gardengirl200
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Coastal @Love running @amy46 @michelle21 @tictok

@noodledoodle @Cumbrian Lady 

 

hello all. I’ve not posted for a while but I read all your posts and you are so eloquent and accurate in how you describe what I am feeling. I am so glad to hear you are moving through your treatments, but sorry to note the individual hiccups. 

I hadn’t posted because I had been waiting for CT results for over 3 weeks and I eventually got them back last week, over the phone at my pre chemo consultant chat. The results are good - ‘no significant abnormalities’ - is the total report and I am told not to put anything in to the word ‘significant’.

But I still am concerned that the other consultant mentioned in passing at the previous consultant meeting that my lymph nodes were enlarged. My consultant wasn’t prepared to comment on why he had said that and simply said that I should take comfort in the fact that the radiologist who wrote the report clearly didn’t think them enlarged enough to be significant. And now I have had my last chemo treatment, I have been signed off until a phone call in 3 months time, which is simply to see how the radiotherapy has gone. 

You would think I would be delighted at the clear scan, and of course I am, but it’s like peeling an onion, once you remove one layer of worry, I find another one. I am convinced my lymph nodes are aching. Are they aching because of the docitaxel ( everything is aching) or are they aching because there is cancer in them? 

It was such a quick phone call and sign off with the consultant that it’s only on reflection that I would like to ask more questions but then, perhaps I simply have to trust their professionalism and accept that they would have not have signed me off if they had any concerns. I am a lawyer and I am probably prone to over thinking. I want to leave no stone unturned and make sure everything possible has been done. It’s what I would do for a client in the legal world Is that unrealistic in the BC world. It just seemed so rushed. I want to ask ‘are you sure, are you sure the nodes are clear?? ’ but of course perhaps they can never be ‘sure’ , they can simply go through the standard treatment, which I have had. And the CT scan was already an extra which I had to push for.

I don’t really understand the significance of all the parts of the equation in working out prognosis. They removed 2 nodes and 1 tested positive but it had extracapsular spread which means the cancer has got out of the lymph node. This worries me a lot. But should it? Maybe in the scheme of treatment it is not a big deal. I want to understand more but, again, maybe understanding will make no difference. The NHS is wonderful, but sometimes I wish there was more time to ask questions. 

I agree that the chemo coming to an end is wonderful but its protection ends too. Perhaps what I need to realise is that it’s normal to have these concerns, and not over think it. But, yes, it is slightly tricky that those who haven’t gone through this just don’t realise that the worry doesn’t end with the chemo. 

And @Love running if you feel like Yoda, I am Jabba the Hutt.  I have put on weIght with docitaxel and now my chemo is coming to an end I need to shift it. Your exercise regime is amazing and you must have been ( and I guess still are) very fit. Pre cancer I was doing 2 PT sessions a week, running 5k or so twice a week and walking the dog.

But I am a complete amateur in comparison and only run because otherwise I would be a total barrel. I am very often about half a stone over weight due to weakness for pancakes, chocolate and basically anything sweet. ( and eh plus crisps). I’ve maybe run 5 or 6 times during chemo - very slowly and about 4K. But it is wonderful for the spirits so I will start back properly next week or so. I’ve signed up to a PT who knows my background to include weight resistance as I gather that, as well as HIT, is important post BC. And I’ve booked some skiing, COVID allowing. 

Apologies for sharing my thoughts in such a long ramble, and for being rather negative. I am usually so positive but I am feeling pretty rough on the docitaxel today and that is affecting mood. I’m actually going to cheer myself up now with a Magnum ice cream. 

 

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Thank you so much @Love running  this is really helpful and inspiring. I don’t think I am quite the athlete you are but keeping fit and healthy has been a very important part of my life for so long and also benefits my mental health so much that I don’t want to lose it. It’s also why it’s such a bummer to end up here in the cancer club when I feel like I’ve worked so hard to jerk fit, eat well and live a healthy life. But that’s the thing it can still get you and here I am so I’m trying to stay positive, hoping that being fit will help me through. I really appreciate you getting back to me, it’s so helpful to see how well you have managed and very interesting to hear that you were recommended 30 minutes exercise with increased heart rate per day. I did a 5.5km walk this morning but I think I’m going to try a short run tomorrow. 
Thanks again 😊 Amy x

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi all

@Michelle21 I'm so glad your last one went okay and I hope all is going well this week re side effects.  Did they manage to sort out your date for surgery?  Very powerful what you and @Love running say about how it has effected you and your real feelings versus what we say to others.  I don't share how I truly feel with friends or family (apart from my sister) to protect them but also because I find it difficult to cope with their reaction.  I'm more able to share with my oldest friends but even then don't want to burden them.  I had my first zoom with a colleague from work last week (my first time 'seeing' anyone from work). This colleague is really lovely but she was tearful as soon as she saw my new look (ie scarf) and I ended up minimising all the side effects, saying how easy I had found it, how it wasn't that bad and leaving out all the bad bits to make her feel better.  It makes me slightly concerned about seeing all the other colleagues at our team meeting - I find it difficult when people are tearful.  You are both right, we have had to dig deep to find the inner strength to cope with this.    

@TicTok I'm so sorry to hear about your aches - I have had bad pain and aches on Pacitaxel - but codeine did the trick for me along with hot water bottles - I feel for you having to go in the MRI machine - I haven't had to do that only the CT scan.  I hope it goes well.  Big virtual hug

Love to all of you wonderful brave women xxx

Cumbrian Lady
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Love running 

First I soaked my feet in one of those spas you fill with water and plug in added a foot spa gel and let them get all lovely and soft.
The massager is a nekteck shiatsu I bought mine off Amazon it is not one of the very expensive ones but it comes with good reviews basically it massages the feet to get the blood circulation flowing - you can also have the heating element on if you wish - simple to use, lightweight just plug to go.
So far I have used it for 4 days 2 or 3 times a day the effect is wonderful really gives your feet a good massage  - far too early to know if it will help with the Neuropathy but it cannot harm and my feet feel so good after.
I fell over a few weeks ago outside the chemo centre I think it might have been due to the Neuropathy I hope it wasn't but if so then it was scary I ended up in A&E.

Yes I am like you my walking makes my day being able to just get up and go with NO worries is so uplifting if that was to stop then I would be devastated.

Hope all goes well for you - have a happy (remaining holidays).

 

Poppy xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @amy46 

Thanks for reaching out and I am happy to share what I have gone through and what I have learnt and still leanr.

This is my journey and I hope that it can help you. Sorry for the length of it.

I am an amateur trail runner (doing it for fun, no competition) and my favorite distance is 15-20 km. I used to run 3 times a week (a short run, a interval run and a long run). In February 2020, I feel skiing and ruptured my median collateral ligament (MCL) and my anterior cruciate ligament (ACL). No more running for me for a while but after rehab and surgery and more rehab (and COVID in the middle of all that), I was given the clear to run again. So I started running again up to 10 km until February 2021, when I got diagnosed with BC. 

My first thought was 'no I just started running again and feeling great about it and now it will all stop again'. I was told that I would get surgery first. So between the diagnosis and the first surgery I run a lot to compensate, several times a week... never more than 10 km because of my recovering knee. I also searched and read a lot for scientific papers about training and running through chemo but also testimonies of cancer patients doing it.

I read two very good books, unfortunately one is in French.

- Run for your life. How one woman ran circles around breast cancer. Jenny Balker

- Les malades de sport. Un remède contre le cancer. Lea D'all'aglio et Vincent Guerrier (he had lymphocarcinoma cancer at age 23). This is the french one. It was good because the writers are journalists and they reviewed the scientific literature. There are a lot of evidence for the benefit of sport in treatment and prevention of cancer.

When I met my oncologist for the first time and I told her that I wanted to continue exercising and to my surprise she encouraged me. She told me that nothing was off limit, except swimming (and sauna, I live in Sweden 😀😅)  because of the PICC line and the risk for infection. She told me 'don't start a new sport but continue the ones you were doing. You know your body, and what it is capable to do'. She said that a minimum of 30 min per day with a higher pulse was the Swedish recommendation from the oncology association. She also said that I might not be able to do anything at all and to get prepared for this possibility. This was individual but she encouraged me to try. After that, I was determined to try exercising through it all. Each time I met her, she is cheering me up to keep up. I know that it is different in different countries. In France for example, not all oncologists are promoting the practise of sport during chemo. The more conservative approach is to advice rest, which is also needed. 

I got my first surgery on 16th of March and 10 days later I put on a double bra (to keep everything in place... felt like having a 18th century corset on😩), I put my running shoes on and I run 5 km. I cried the whole time of happiness. Unfortunately, I had to get a second surgery on 6th of April for getting clearer margins. This was not going to stop me, I did it the first time, I was up to do it again so 10 days later I put my running shoes again on and I run 5 km. Equally happy and proud. It was like I had something to prove myself. I knew I was going to go through hell and I was going to loose control, putting my life and health in the hand of doctors and nurses and chemo. Going through chemo would take me to dark places for hopefully bring me back to the light side. Running would help me to keep seeking this light.

I started chemo on 3rd of May. The plan was 4 EC every two weeks followed by 12 weekly paclitaxel. End date was expected 20th of September. This end date is now postponed to 27th of September because unfortunately I can't control my white blood cells. I also decided to try to run and exercise through chemo. And so I did and I still do. Some days are better than others and I am grateful for every drops of sweat and every minutes I manage. I am listening to my body and my body is loud and clear when it does not want to.

During the EC treatment, I was given 4 days of steroids and one injection of fligrastim (Pelgraz). While steroids take you on an emotional rollercoaster and sleepless nights, they also helped a lot with the running and training. They give you a serious boost (no wonder it is considering as a doping agent in competition). I was fortunate to not have too much pain and aches from the Pelgraz. I sometimes think that I could have mixed pain/aches from the medication for training aches. Either I went through it not too affected.

Day 2 after EC, I did core training, weight lifting in the outdoor gym and strengthening exercises at home.

Day 3 after EC, I always run. It was my best day. I never decide how much I would run and I would just listen to my body but once I even managed to run up to 12 km.

Day 5-7 was when my blood count would drop and my hemoglobin level were down the drain. So then, I could barely manage running 3-4 km. It just stopped. One day I was running and I had to stop at 4.8km. My brain was telling it is just 200 m to make it to 5 km but my body could not do this 200 m. I stopped but I was grateful for the 4.8 km. Day 7 was always the worst.

Day 8-14 my body slowly recovered and usually by Day 11 and Day 14, I could run again 5-8 km. In between, I tried and still try to do something every day for 30 min: cycling, walking, core training, going to the outdoor gym, taking the stairs instead of the elevator. I cycle everywhere in Stockholm as we have good cycling paths and I don't want to take public transports because of covid. I cycle with my youngest to school. This too, I forced myself to do every day to make sure I get these 30 min. On bad days, I walked in the forest.

I started the weekly paclitaxel on 5th of July. Although the drug itself is 'gentler' than EC, the weekly treatment took a bigger toll on me. I was given steroids only on the first day and with decreasing dose each treatment. This week was the first time without and I can feel the difference. Also, with paclitaxel comes the worries about the neuropathy. Again I was determined to not try to exercise and run. 

Day 1 (or day of the treatment) I walk or cycle for 30 min to 1 h. 

Day 2. I resume my Pilates class since it moved online. I do basic Pilates class for 50 min. 

Day 3 I run between 5 and 10 km. This was the best day for me but it becomes harder and harder to reach 10. My body is getting tired and I am off the steroids. 

Day 4-6. I try to walk, cycle, do some core exercises for 30 min per day. 

Day 7. I run intervals. As I said it becomes harder and harder.

Bottom line, I never take any days, runs or trainings for granted. I never know if I manage or not and therefore I never set a goal to achieve. Exercising has kept me sane, as it shut off my brain and I don't think about cancer. I think it helped me so far through the chemo side effects and I feel fortunate that I did not experience them too hard. Some thing, I still tape my scare since the surgeries. I will do so until radiotherapy. I was told to do it for three months after the last surgery. I kept doing because I wanted to avoid rubbing from running (although still running and exercising with a double bra). Not sure it helps any but I think my scare looks quite thin. 

I still have 5 paclitaxel to do. Next one is tomorrow if my white blood cell count is good enough. Then I need 5 weeks radiotherapy, 3 years of zoledron acid and 10 years tamoxifen. I don't know how well I will tolerate the rest of the journey but what I know is I will try to continue to run and train. I can't live without it.

I hope you can resume your running and training and I would encourage to do so. It has only brought me benefits. Sorry for the lengthy text.

I send you lots of energy for your return to training.

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi Poppy,

Thank you for sharing how you are caring for your arm. I do not have lymphodema but I will get 5 weeks of radiotherapy in November and I don't know yet whether I will get the arm pit radiate or not. I have had 2 nodes removed of which one has micrometastasis. It might be the case and then I will fall into the risk of developing lymphodema. It is good to be informed on what other do (as you rightly said).

Neuropathy, especially in the toes is the one of the side effect I am the most worried about, since I have started weekly paclitaxel treatment (will get my 8th one on Monday). I have had some signs of it both in the hands and the feet and mostly at night. I wake up with the sensation of sharp needles getting under my skin. At the moment, it is temporary feelings, and it goes away. So I have been told by my nurse that it is fine. 

I am a runner and not being able to run (which I just experienced before BC because of a ruptured cruciate ligament) would really sink my mood and send me on a downhill slope. The foot massager sounds nice. Can you share the name of it? 

You are so right, we can let ourselves down. We need to keep fighting and somehow find the energy to keep us going and enjoy the present moment. Each good day is a good day taken. 

I wish you a wonderful Sunday. Lots of hugs.

 

amy46
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Love running 

I’ve just started my chemo, 12 weeks Paclitaxol with Carboplatin every third week then two weekly EC for four cycles. I found you when I was looking for people who have tried to keep up exercise through chemo. Pre cancer I was running 5k three times a week, had a PT once a week and walk my dog 5-6k most days too. I’ve had a WLE and then a licap flap then a port fitted so I have only had two short runs in the last few months when my surgeon said it was ok. I feel pretty ok two days post Paclitaxol and Carboplatin. Did you run straight away? Any tips for me about best days and what to do? I’ve still been doing good walks most days apart from a few days post op when I reduced them. Glad you are coming to the end of your treatment. Amy x

Cumbrian Lady
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running 

I started to use my arm as normal as soon as it was possible - as it was my right arm I had no choice.
I do protect that arm from the sun, am very careful not to cut myself as well as keep that hand away from hot water.
My arm does sort of tell me what I have overdone it, it gets prickly and sometimes the arm aches a little so I let it rest.
I use moisturiser on it several times a day using a downwars motion as well as drink lots of water.

I like walking but at the moment that is sort of semi curtailed as I have chemo Neurotherapy in my toes (I think I feel more down with all the side effects than I do about cancer) you go through all of the treatment to then be put on hormone tabs which change your life drastically as well as the other side effects it's like a double/triple whammy.

I have been reading your posts and find them very lifting as well as informative - we owe it to ourselves not to let this beat us as hard as that is at times. It would be so easy to just let go and give in - but that solves nothing.

I like to read on here and other informative pages what other breast cancer sufferers have used and done to work around any setbacks and complications - then if possible find my own routine whatever into trying to make that work for me.
I have just bought a massager for my feet suitable for Cancer Neurology not going to let this stop me from doing what I like.

Thank you for your lovely reply - good luck with your continued treatment and safe journey.

 

Poppy xx

 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Cumbrian Lady 

I second that exercise helps a lot, not only to keep lymphodema under control. In my case, it kept me sane because when I exercise I don't think. I shut off my brain and concentrate on my breathing and the movements.

As I am not allowed to exercise in a gym, I did a lot in outdoors gym and I run/cycle which forced me to go out and fresh air. It forced me out of the couch and the house. Some days are of course harder than others. I also listen to my body and adapt what I do to what I can do. 

I believe it also helped me with the muscle pain (may be confused with training aches🤔), which I did not have too much.

Here in Sweden, exercising minimum 30 min per day (meaning doing something with a higher pulse) through chemo was highly recommended.

I hope I can continue to train until the end (5 more weeks of paclitaxel is nothing goes wrong). But I know it is not possible for all of us and it might not be possible for me either, when the pain and the discomfort is getting too strong.

Keep moving, keep strong. 

Lot of energy to you all - and it is Friday!

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

You wrote precisely how I feel. Thank you for sharing it.

I feel myself lucky in many ways because I have not experienced much discomfort or pain and I am still able to train a bit.

But, I am exhausted of pretending that I am fine.

- Fine physically and capable of doing everything as usual,

- Fine with how I look. I look like an overweigh baby yoda: bald, wrinkle, looking old with a younger face, almost greenish in my face from the lack of sleep

- Fine with having embarrassing hot flushes leaving me like a sweaty baby yoda 😅(just watch the new season of the Mandalorian - I might just be part of the cast 😀)

- Fine with the looks of strangers wondering what on earth is wrong with me

- Fine when people I know don't recognise me because of the way I look

- Fine mentally because I would tell anyone what is my head, they would freak out (I freak myself out with some of my own dark thoughts)

- Fine with all the good advice I received from well-intentioned people and friends about this wonderful mushroom they read about and that boost your immune system (and themselves won't get vaccinated)

- Fine with the cheering up that it is only one week delay when you have gone for months of treatment

- Fine with arguing with friends about the reason to take the COVID-19 vaccine or why the pandemic is not over and I still need to be careful and can't meet indoors

- etc the list is long

This say I am so happy for you that you have done your last chemo. You have been a support to all of us and your incredible positive attitude has helped me a lot. You always have the right the words and advice. You are an inspiration. I am forever grateful to have met you on this forum. 

I am glad that you will continue to check on us once in a while. 

Lots of love to you and enjoy the freedom of being PICC line free.

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok 

Good luck today for your MRI and I hope you can manage the aches.

Sometimes, I think it might be could to let go what we have in our chest and and tell what we have in our minds. We are always so careful to protect everyone else from the discomfort of the disease. Sometimes we should just say it as it is, no matter the discomfort because this is the reality of our lives. It takes so much energy to keep the smile on and pretend we are OK. Even if we are OK physically, because we are lucky enough to not experience side effects, mentally we can be a wreck. 

lots of positive thoughts sent to you today

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Sammy 73 Thanks for that I will get some 👍x

Michelle 21 I am the same we always say yes we are ok , no one could ever know what we have been and still going through with this , they say you look well I’m thinking you should see me in the morning no eye brows no lashes no nothing it’s not just the impact on our bodies but the mental mind games , will it come back , how long before it comes back as you are well aware of …. I think I better stay in today till my MRI coz I am not in the mood to tell people what they want to here and they might not like what I say 😞

love to all you ladies xx

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @TicTok 

You can get ibropuphen with codine over the counter! It helped me alot xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Sorry @TicTok @I can’t give any advice on your aches, can you contact your team? Thanks all went well today but now it is my turn to be up all night on steroids! 

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good evening all,

I am often asked how am I? My stock answer is “oh you know getting on with it”. This is actually how I feel but never say…

My feet are numb causing me to frequently stumble and they feel very cold at night. Several nails are now discoloured, hopefully they don’t fall off. For 3-4 days a week I get a uncomfortable feeling in the centre of my abdomen, it feels like there is an alien growing inside and the skin is stretching across it. It’s hard to go on walks when it’s at its worst. Luckily it doesn’t last long.

I haven’t lost my appetite which is probably good, but the opposite is true and I have put on at least half a stone, which I won’t worry about now. Quite often I am eating to try and get rid of the horrible taste in my mouth, or just because I want to taste something but my tastebuds aren’t what they were in April when I started this horrible process. 

I don’t look like me to me. The cold cap has worked well I have kept about 60% of my hair but I am used to having very thick hair but now I am sweeping it in certain directions to avoid my scalp from showing. Of course my eyebrows are not protected by the Cold cap so I am drawing them in, not something I usually do! My usual stubby eyelashes are thinner than usual, I try not to put much make up on my eyes as they have become quite dry at times. 

It’s not just my toes that have neuropathy it’s my fingers too, particularly my right hand and it is painful to do certain things. 

I have a tube that goes in through my arm to attach to a main vein. It has made chemo, blood transfusions and taking blood much easier but I am constantly worrying is it infected or causing a clot. It often makes me think of the dystopian book/film Never Let Me Go,  If you haven’t read it I thought it was very good. 

The tiredness has drawn big bags under my eyes, another way I don’t look like me. When my red bloods dip I can’t even lift my head from the pillow. 

These are the physical side effects, I have been lucky I haven’t been in much pain, more discomfort, but all of these little things make me feel rubbish. And I haven’t even mentioned the mental affects of being diagnosed with cancer… … twice. 

However if you ask me today how am I? I will say “I’m good thanks, because I have finished 21 weeks of chemotherapy and my PICC line has at last been removed”.

It has been gruelling at times but like all of you incredible ladies here we have just put our head down and got on with it. What other choice do we have? We have drawn inner strength that we didn’t know we had and best of all we have supported each other through our ups and downs. I may have finished chemo but I will still be here to cheer you all over the finish line. 

I hope that those of you who still have a few more cycles that they run smoothly. No more low white blood counts, no more AWOL chemo drugs, and that Se’s are minimal or can be treated.  

We are strong and will get through xx

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Michelle 21 I hope your last one went all to plan and you are ok and wish you well with your surgery 

0mg what has this t stuff done to me 😳never ached so bloody much , this is the worst I have been ! Don’t know how I am going to stay still for a 45 min MRI tomorrow 🥲 ….. anyone have any tips to deal with it . 
love to you all xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Coastal my last one is tomorrow and like you I feel excited with the thought of a bit of normality one minute and vulnerable the next. I have surgery to come but don’t have a date yet. Annoyingly the team at my cancer hospital didn’t refer to the surgical team so I am trying to chase it up and find out what’s happening. A hassle I could do without. 
The best of luck to you for Monday let’s hope by this time next week we will both be experiencing the last of our chemo SE’s and looking forward to moving to the next stage with a few treats in between. Xx

Coastal
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi all

@Michelle21 I have one more to go on Monday cross fingers.  I've not been well with a bad throat from last week so really hope it goes ahead.  Sorry to hear that you have a little lymphedema, it's really good to know that it's only slight and manageable - I agree I'm also keen to look healthy to others and non vulnerable.  I've had all my nodes out on one arm so know I could get this.  I'm keen to get back into exercise but will be careful and keep an eye on it.  I'm sorry I don't keep an eye on on posts much but are you having your last one today?  If so, really good luck!!!  

@Poacher65 Well done on finishing this bit of the treatment! and hoping that the MRI and surgery goes smoothly for you!  It is a massive thing to have done - you should be really proud (I know I will be after my last one).  I'm too looking forward to the PIC line going and having a proper soak - with book, bath oils and maybe small glass of bubby.  I hope your first one is lovely!  I had my surgery before (including full node removal) - I did feel really looked after and the surgeons explained to me that they do it so many times, they become expert at the procedure and are very careful.  Looking forward to hearing how it goes, take care of yourself 

@Sammy73 it sounds stressful (and a bit unfair) to have to make the decision yourself, really good luck with whatever you decide.  I'm sorry not to be more helpful - I had all my nodes removed and have radiotherapy in October which doesn't include my under arm. So far they haven't given me any choices about anything, just said what needs to be done.     

@Love running It's always so lovely to read your thoughts - I'm glad that the kids are back at school for you and you have some time to yourself!  My son goes back to Uni this weekend - I'll really miss him but not the amount of cooking I do - it's an opportunity to try and get healthy meals into him as on his own he tends to survive on chips and pizza, but he does eat vast amounts.  Daughter goes back to school in September, in a way not looking forward to it as she's already stressing about the work but I will enjoy time on my own.  

@TicTok what a stress!  I've had to wait for my chemo to arrive once - was very stressful thinking it might not come!  Hope that your scan goes well and shows a well subdued Boris! 

I hope everyone else is okay and managing - It feels so weird to be nearly at the end of this part of the hideousness - I veer from feeling anxious about the lack of protection I feel the chemo has given me, and feeling buoyant at being able to get back to some kind of normality.  I've started planning a few days away in Sept and Oct - one night camping in September and 5 day in Norfolk to see our son at Uni in October.  Keep remembering that obviously I have radiotherapy and hormone treatment and who knows how I'll fare with that but I'm going to assume it's okay.  Lots of love to you all xxx  

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Purpledaze  yes I've talked it through with my main man and meeting my sister tomorrow so will get a better picture in the next couple of days. Thank you everyone xx

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Sammy73 like @Michelle21 said, I find it hard when the oncologist says it's my choice, although I also know that I definitely want a say in my treatment, too. I don't any experience with lymphodema or radiotherapy to the arm area, but I did have a similar situation with my treatment options and those pesky percentages. Like you, I didn't hit the "for definite" %, but I was at the upper end of the next level down, if that makes sense. When my oncologist said it was up to me what treatment protocol to go for, I replied (fairly politely 😂) that as he was the expert, in order to make my decision I needed to know which one he would advise me to take and why. He was then a lot clearer to me about what he thought was the best option. I took that info home, mulled it over with my family and then made my decision. I hope you are able to reach your decision confidently. Xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Yes you are right Poppy, exercise is a good thing.  I’ve just read back what I put and I didn’t mean to make it sound like exercise causes lymphoedema. I had my nodes out in 2018 and didn’t develop lymphoedema until 2020 and as I say it’s only slightly. There are also arm exercise you can do to prevent restricted movement. Sorry if I caused confusion x

Cumbrian Lady
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

I was told exercise helps to keep lymphodema under control - swimming being especially good, the secret is little and often - also drinking plenty of water helps.

I had 14 nodes removed in March (so far fingers crossed) I am doing ok on the lymphodema front, I can tell when my arm has had enough so I stop and rest.

 

Poppy xx

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Ok I get what you mean @Sammy73  but I think it I very unfair to put the decision on to you. Both of my cancers have been the more aggressive types, HER2 & TN so I don’t think there has been any choice on whether to do a complete node clearance. 
Lymphoedema comes on when you exercise, I suppose your body is working harder, so my arm swells a little bit. It’s fine but like @Love running says the standard compression sleeves are pretty ugly and look medical (NHS are soon coloured) for next summer I will buy a plain black one which looks more sporty and compression garments are quite ‘in’ in sports. It doesn’t bother me as long as I don’t look or feel like ‘a patient’ or cancer ‘victim’ 

Any other questions ask away x

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Love running like you I got off sleep ok then awake from 2.30 -5 then fast off when alarm wakes me for my next visit for my hart scan , just got here and it’s looking good for a quick in and out 😁….. I said  to my husband on the way home last night …. How much more can they Chuck at me ! What have I done but it’s like you said it’s not just us we are in it together …. You have a good day xx

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Thank you @Love running 

They will radiate the neck lymps breast plate and mammory area. I would hope with the chemo and this would be enough!! Anyway I have a bit of time to mull it over. Xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok 

How was your night? I hope you got some rest.
After such a long day one might think we would sleep like a log. But nope then the steroids kick in and the hot flushes and the frequent bathroom night visits… I feel pregnant or like breastfeeding again. 

The worst for me are the hot flushes and sweating. It is just a nightmare. 

When you finally fall asleep around 5 am, and enter deep sleep, you have someone jumping on you yelling ‘maman debout il est l’heure de se lever’… You just want to scream back ‘leave me alone I want to sleep’ like a teen. 

Anyway now they are all gone to school or work and I sit on the balcony with a cup of tea in the fall sun enjoying a quiet moment. Might just lay down again for 20 min before starting again my day. 

It was nice talking to you too - although not wishing to anyone, I was glad that i was not alone and it did not just happen to me. Sometimes I think how much bad luck can one have at once. But then this reminded me that I am not alone. So thanks partner in misery.

wish you a terrific day smashing Boris senseless💪🏼👊🏻

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok thank you. 

Just more unwanted desicions to make!

I'm worried about feeling burnt alive anyway! 

🙄 have a good day xx

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Thank you @Michelle21 

If 85% of my nodes were cancerous I wouldn't have a choice! Because I'm 66% + he's letting me choose because of the side effects.  Great!! Not!

What happens with your arm when you walk?? 

 

Thanks xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Sammy73 

Unfortunately I don’t have an answer either for you. I am interested though in what you find out as it might be relevant for me too later on.
I got 2 nodes removed of which the first one (SN) had micrometastasis (hence the chemotherapy). After chemo, I will need radiotherapy too. The question might come to me too whether to radiate only the breast or the armpit.

@Michelle21 I understand your point on the lymphedema. A colleague of mine has it and although it does not hurt her or prevent her from doing anything (sport, work,..), she is bothered but all the questions asked about why she wears a compression arm sleeve and she has trouble finding shirts fitting. Seems trivial after cancer but it is a constant reminder of it. One does not want to be reminded when the only thing one want is to forget and resume a normal life. 

@Sammy73 I hope you find the answers that will help you decide which path to take. 
wish you a good day

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Sammy73 I wish I could advice you on that but i’m sorry I have no idea , I got asked last week to join a trial of only taking cancerous nodes out of which I have 3 or 4 instead of clearing the whole armpit which can lead to arm problems like you say ! I don’t know if I should go for that or not , I did say to my surgeon I would be advised by her as she sees this every day….. it’s hard for us to decide 🤔

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Love running …. I got back at 6 tonight 😱long long day !! I have 3 more to go they are my half way checks  which are late ! I am hoping Boris has crashed and burned 😆I don’t sleep at all on steroids so it will be a long night also ….nice talking to you made my day more enjoyable 👍

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Sammy73 I don’t understand the 85% 66% part of your message but this is my own experience. I had all of my lymph nodes removed last time and 20 sessions of radiotherapy to my breast area. I don’t think it covered my underarm. When the nodes were removed they showed a complete response. I think chemo and radiotherapy even not to the under arm increase your risk of lymphoedema, you may end up with it even without under arm rads. I have developed lymphoedema but I have to say it is only very slight. In normal circumstances I wear a compression sleeve when I run or walk and that tends to keep it under control. No one has ever noticed I have lymphoedema, which as vain as it sounds is a big thing for me. I want to look fit, active and healthy. (Not like an ex cancer patient!) 

I hope this is of some help. X

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok 

I hope all went fine at the end and this last treatment has blasted the last of Boris. Crazy day for us but you seem to have a crazy week with all the checks. I hope they go smoother and that the checks show that Boris has really got his A kicked. 
 
Have a quiet evening and night. I am exhausted and hopefully with steroids I will sleep all nights (if the hot flushes don’t wake me up)

Sammy73
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Oh wow, what a mad couple of days you have all had!!!

I saw my oncologist face to face today after bloods and picc line flush dressing change!

He has confused and worried me!!! 

My radiotherapy has been booked for 20th October with scan b4 and phone consultations but hes put the ball on my court about 1 part of the treatment!

So my lymph nodes on left side were removed 12 in total 8 were showing cancerous cells. Now however he's telling me microscopical cells are visible slightly away from this area. So do I want my armpit radiotherapy!! Lymphadimea is on the cards!!! 

The norm is 85% go fir it im 66% + microscopical cells. What is a girl to do!?? 

I just want it all over but I want to have my arm 😩

Sorry just would be interested in any thoughts. 

Love to all. Happy ish Monday xx

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Michelle21 thank you , just got wired up 👍x

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok good luck for a Friday, I hope they can’t see anything on the scan! I hate weeks like that where you seem to spend more time in hospitals than home, and most of it waiting around. Hope all appointments go well. X

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Love running … that sounds perfect if and when I get hooked up today I am going to message and book a pedicure for end of November as she gets booked up fast , give me something to look forward to ….. glad you are sorted now 👍what a day 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok 

I am hooked now… just another 1h30 to go. 


You said pedicure, omg yes, I would too love that.  My feet and toe nail look hideous. 


After radiotherapy, I will spent all the money I saved on hairdresser and hair products, and on drinks and spent it on a super duper dos weekend. There is this Japanese spa in Stockholm with outdoors hot sources and dry and wet sauna. I will get all the possible massages from head to toe.  I am so going to treat myself. 

for now I will nap dreaming of it but not before I went yet again to the loo

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

You are right, the French protests for everything and nothing. Too warm, not warm enough, too mild, too cold…

This is the latest type of protests by the same people from March 2020 to now 

- We want face masks 😷 - out with the gouvernement 

- We don’t want to get covid, close the schools, the borders, the restaurants…and let us work from home - out with the gouvernement 

- We don’t want to stay home, we want to go out, open the restaurants -out with the gouvernement

- We want to meet our colleagues - open the office again- out with the gouvernement 

- We want to travel, open the borders - out with the gouvernement 

- We are no teachers, open the schools - out with the gouvernement 

- We don’t want to wear face masks anymore- out with the gouvernement 

- We don’t want to get vaccinated, the vaccine is a hoax for pharmaceutical to make money - out with the gouvernement 

- We want to go to the restaurant without face masks and without vaccination - out with the gouvernement 

Liberté liberté - out with the gouvernement 


It is insane!!!! My countrymen are sometimes a bit over of top (I weight my words🙄)

 

 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Thanks Michelle no sign of mine yet either 🤷‍♂️…Unlike love running my egg and Mayo sandwich was rank couldn’t taste anything …. Earliest I will be out is 5 😱….hey oh if it’s target blasting for Boris I hope my MRI I have on fri shows it getting the hell out !! Heart scan tomorrow ,3 different hospitals in Leicester this is such a fun week 😂

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Love running you hang on there 😁 …. I am the same with the bathroom visits drinking water ! I Am hoping I have a nap and dream of a spa massage and getting my feet done 😂

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Michelle21 

I know, I thought the same. Is there some smuggling out of the country going on? So crazy! It is almost 13 o’clock here and I am still waiting.

Update: They found the driver and the pac, he left them at another hospital across town. Now they need to fix a new delivery 🚚 and that can take few hours. I almost offered to go and fetch it myself by tube (would take me 40 min back and forth). If I had my training gears, I would have gone for a jog to fetch it. Faster and safer I am sure. I am almost dreading that the new delivery will pick one of two other hospitals in town, that would be hilarious if not happening to me😂

The positive side, I went out to get some food and I had a super nice Indian take away:vegetarian sweet potato stew. I ate on a bench in the sun. 

@tiktok, I hope you got yours by now. 

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

I can’t believe you are both having to wait for your treatments, is there a conspiracy? Or a black market for chemo drugs?!  Definiste ly world the a protest @Love running I’m sure the French have protested over much less! 
You have to laugh or else you’d cry but jokes aside I really hope you both get your taxel’s soon. I’ve had to wait around before for it and it’s no fun, you really don’t want to be there any longer than you have to. I am keeping my fingers crossed for you both xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok 

No way, what are the odds? This is crazy!  🤪

Still here and still no driver (4h35 min, 200 ml saline, 5 bathroom visits later). I am not leaving until I get my treatment (I am French, I will protest😂)

If only I was at the spa… waiting for a full body massage. 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Love running ….I am having the same problem my meds weren’t made on time got to go back at 11 ! The nurse told me last time I would only be here an hour , now they are saying till 4 wasn’t expecting that at all ….. I hope they manage to track yours down also 🙄

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@TicTok 

I know the feeling of being awake due to the steroids. I am like the Duracell rabbit on them… 🐇 🐇 going around and around in the flat.

Today is my first day without steroids (was looking forward to it) but might be also without paclitaxel (if they can’t localise the driver that goes around the city or the country with my drug). 🤷🏻‍♀️

I hope you are getting your treatment on time and that you will tolerate it. Good luck 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning,

I need to share this.

I came to the hospital at 7:30 to have my blood test before my scheduled treatment at 9. Thankfully my blood values, despite being still on the lower side, allow me to get my 7th paclitaxel.

But the pharmacy has not delivered it yet… so I wait and meanwhile I get saline through the PICC line. 

Finally the pharmacy calls to say it is on its way.

But the driver delivered it elsewhere… What are the odds?

It is now 10:31 and I am still on saline…

And they can’t localise the driver…

Anyway, I hope the driver has not left the country with my drug 😬😬😬😬

I will get so much fluid in me today that I probably will run to the bathroom every 10 min.

Happy Monday to you all 

TicTok
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

You amazing ladies …..I am sorry I seem to have lost the thread lately and you all appear to be having different things to me which I don’t know anything about 😕…..poacher65 congratulations for getting through your last chemo and send you very best wishes for your future x

sammy73 it’s good to rant I hope you are feeling better and you are strong…Michelle 21 yes that bugs me 2 when they say I hope it goes well ! They certainly have no idea and you do get to know who your true friends are also . … love running you should be a writer to could write an amazing book about your journey . , glad you are feeling much better I hope you got your 7th . …for anyone I have missed I am sorry it’s my first day of 8 steroids 🤨hence it being 3.30 am heading for my first docetaxel at 9 .15 ! Can’t wait for that 😱.

take care everyone xxx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good evening,

I wanted to write every day last week but just got caught up with school start for the girls. Both have now started and after 10 weeks holidays we had forgotten the routines (which is good as it means we had a good break). They are happy to be back at school. My oldest one (who turned 13 the day of school start - bad luck😥) has changed school and was nervous. She has to travel by metro on her own to the city centre. She also does not know anyone yet at school. I know she will be fine, she is strong. Her school is organising a outdoors event for students and parents to meet. I asked her if she wanted me to wear my wig (not done it yet) for this event, to not making it awkward for her in front of her new school mates.  She answered that she prefers me to go with my cap and my 'bald' head because she thinks I am cool that way. She does not care what others think. This brought me to tears. She is an amazing open minded teen.

I am a bit nervous about COVID-19, as all ages from 5 to 19 years old are fully back at school. No more distance learning and vaccination is only offered to teens from 16 year of age. There is a surge of cases in the younger population in the Stockholm region😨

Last week I finally got my 6th paclitaxel (although still below the threshold for my white blood cell count) if I combined it with 2 injections of filgrastim. Thankfully, I tolerated the injections well and very little bone pain. I have however started to have the tingling in the hands and feet (neuropathy). At the moment, it comes and goes, mostly during the night. It does wake me up. I also get very cold fingers, due to a quite low blood pressure. My nurse said that as long as it is not permanent, I am fine. 

I mentally felt so much better to be back on track and I was a nicer wife and mum this week 😎. I am hoping that my white blood cell count has been boosted with the injections and I can get my 7th paclitaxel tomorrow morning. Fingers crossed! 

Today I have officially reached my half way milestone. Only 6 more... To celebrate this, I start again dreaming about going to France in October and about a get away week-end with a friend at the end of September.

I see that you are nearly all doing to same, planning break aways. Nice to feel like a 'normal' person.

Good night - lots of hugs.

Michelle21
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

I have had my penultimate chemo, hooray! Just the final one next Thursday so I am keeping my fingers crossed it will go ahead as planned. 

@Poacher65 Although Chemo is almost done for us we both have a little way to go with our treatments but we will get there. Like you I want to put this behind me, again, move on with life and be around for years to come. 
@Sammy73 I am glad you have been able to rant here and get it all off your chest. I can’t think that many of us haven’t felt exactly the same at some point in the last few months. It’s good you are feeling stronger. We are also thinking of a break away in October by which time I will hopefully have had surgery. After my previous chemo & op we went to San Sebastián, it was so amazing to be away after all I had been through. 
@Love running your posts are so poignant. You are very good at phrasing how you feel and how lots of us feel. Each knock does make us more vulnerable but what choice do we have to be ‘strong’ this thing is growing in us and it is our life that will stay or go. This may affect others around us but ultimately it is our life and we have to do all we can to keep our selves fit and strong to give us the best chance of a good outcome. May your second half of chemo run smoothly for you. 

I hope everyone is doing ok and that any final hurdles aren’t too high xx