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December 2019 Chemo Starters

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Re: December 2019 Chemo Starters

Mrs S,

I guess you are doing well, with regards to social distancing, so long as there is 2 m distance between people at home if the same area cannot be avoided. That’s what I’m doing as my hubby works in GP land.
The worse he has come across is, a few people who on tel triage don’t disclose about respiratory symptoms (??), it’s only when they come for face to face consultation that these symptoms become evident 😱

I wish there was more education and reassurance to prevent such behaviour.

 

Best wishes to all. Hope you are all coming to an end... 2 more for me. 
loads of love

B4

 

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Re: December 2019 Chemo Starters

Hi everyone,

Wishing I wasn’t wide awake..... 💤 

Take care Mc22 - I’m so sorry you and your husband are in this situation. Your nerves must be shredded. You can do this though ❤️
I’m wondering how you’re doing madcatlady?

Not heard from you in a couple of days, hope you’re ok? Xxx

 

 

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Re: December 2019 Chemo Starters

Yes, I know you are right Mrss1968. It's tough but don't think we have any option. I appreciate your comments so thanks.

Xxx

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Re: December 2019 Chemo Starters

It's not really possible unless he stays in one room and uses a separate bathroom. Our big area of cross usage is the kitchen, but he makes sure he is rigorously washing hands when he comes in and does it regularly. Doing our best but not completely isolated. You are both high risk. I would follow the advice you have been given. I know it's tough but safer for you both xxx

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Re: December 2019 Chemo Starters

Mrs 1968 - interested to know your husband is a doctor but you are managing to self isolate from each other in the house.

As you know my husband is just out of hospital and the doctors said he can't come home for 14 days with me being on chemo so he is staying at a remote holiday type cottage. The docs said he couldn't even stay with my daughter because he is now also high risk and she has young children. I am desperate to get him home because he is now frail himself. It is heartbreaking to not be there with him when he has just come out of hospital. I should be looking after him. This is all so unnatural. My daughter is nearby and talks to him through the glass of the patio door a couple of times a day  but I don't like him being by himself all night. He has a clot on the lung and is taking medication to disperse  it.

I was thinking whether it would be too risky to bring him home if he stays in one room. Do you think it is doable, based on your experience?

Mc22 xxx

 

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Re: December 2019 Chemo Starters

Rizzer I reckon we will all be on 5 instead of 15.

Back from paclitaxel. Three more to go 🤞🤞🤞

Stay safe and sane ladies. Mc22 hope your husband makes a good recovery x

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Re: December 2019 Chemo Starters

Thanks Mc22. I go lots of bone and joint pain with the injections.

This is more muscle and joint pain with the taxol. Slightly different for me between the two x

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Re: December 2019 Chemo Starters

Hi all,
Home now after paclitaxel. Had a tele-consult with oncologist. Livers, looks like my radiotherapy will also only be 5 sessions too. He said each one was a higher dose but that shouldn’t affect us in terms of side effects. He explained about the clinical trials (the results of which were due to be announced and I guess peer reviewed at some conference which now clearly isn’t happening) showing that there was no substantive difference between risk of recurrence on 5 days or 15. 
Im so glad about that especially with CV. 
How are you doing MrsS? 
Love to you and your husband mc22 and you Aurore ❤️ This is so tough Xxx

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Re: December 2019 Chemo Starters

Aurore,

I completely understand your fear and anxiety. If they have recommended you should continue with treatment for peace of mind ask what special measures are being taken to protect you when you go for chemo, bloods etc. You might feel better once you know how it will all work. 

I am TP and having adjuvant back up treatment but I have decided not to have the last two. I think they may have suggested that anyway.

Hubby and I are now having to self isolate separately as when he was dischaged from hospital they said he could not come home as I am on chemo. At the 11th hour a friend of my daughter offered her holiday cottage in my daughter's village. People are so kind. In 14 days he can come home and we can continue self isolating together . The good news was that he tested negative for the CV but they worry in case he may have picked up something in hospital.

Take care.

Mc22 xxx

 

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Re: December 2019 Chemo Starters

Hi @Mc22, I am being treated at the Bracknell cancer centre under the Reading Trust.  I must admit I didn’t ask the oncologist if the dose was stronger, but will ask at my planning apt on 3/4.

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Re: December 2019 Chemo Starters

Hello all

I do not write here very often but check in every day on how everyone is doing. Like everyone else it is very scary time. 
i am in London and currently neonadjuvant for triple negative. I am due paclitaxel/carbo 5 tomorrow (planned for 12). Had a call from oncologist who recommends for treatment to continue as she feels having the surgery now would not give me the best chance long term. She said that they will continue to deliver treatment (but I am sure they cannot guarantee this). But continuing treatment has also its own risk. It was hard to hear how cancer patients have been classified in categories to decide who will receive treatment. 
i know we are all being faced with difficult decisions who are being made for us.

What have you been advised so far? 
MC22 - I hope your husband is feeling better. 
i am sending love and strength to you all

aurore

ps: getting ready to go to unit for my bloods and pretty petrified 

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Re: December 2019 Chemo Starters

Thanks Rizzer

Part of me was worried it might have been CV, especially as my husband is a doctor. We are socially distancing in the house, separate bedrooms etc, but unless I lock myself in one room it's impossible to not cross paths, touch the same things etc. I also need to look after him ie cook meals etc. He has been brilliant, cooking meals when I'm knackered. He puts his clothes in the washing machine so I don't handle them. We are doing everything we can 🤞

I am more tired/ fatigued as this goes on.  I get the odd sharp pain but don't think it's nerve related. I have some tingling in my fingertips but no loss of sensation or function. My oncologist said peripheral neuropathy happens exponentially, so just keeping an eye on it.

Driving myself to and from chemo to avoid getting in the car with someone else. Will just have to wait for piriton to wear off. Fortunately it's only a 10 minute drive.

Good luck today. Will be thinking of you x

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Re: December 2019 Chemo Starters

Hey Fiona,

That raised temp must have been so worrying for all sorts of reasons. I’m so sorry.  Glad it’s back down. You still ok to go ahead today? Were you worried it might be CV? 

 

My aches aren’t good, but I wouldn’t say they’ve got progressively worse. I’m definitely very very tired now tho’. Had to sleep in the afternoon yesterday, which hasn’t been something I’ve been doing. How about you love? 


That worsening may be something to do with the fact you’ve had the weekly doses starting to build up?

 

My oncologist suggested reducing my dose after the electric shock type nerve pain I had, but I said I really didn’t want to. He said it could get worse and may leave permanent damage, but right now I’m just grateful for all they can get in me before they have to stop...


Thinking of you and sending lots of love Xxx

 

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Re: December 2019 Chemo Starters

Thanks Mc22. I go lots of bone and joint pain with the injections.

This is more muscle and joint pain with the taxol. Slightly different for me between the two x

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Re: December 2019 Chemo Starters

Mrs 1968 - so pleased you are feeling better in time for your chemo. Fingers crossed. I think my aches were worse this time but then it was a change of medicine to T. Never know whether it is the injections or the chemo that causes it.

Lynn I am interested in this change to one week of radiotherapy instead of three. So does that mean they would they would  give  highr doses? Are you being treated at a London hospital?

Mc22x

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Re: December 2019 Chemo Starters

Hi Rizzer

Yes I am. Had a temp of 37.6 yesterday and felt really rough. Was panicking in case I ended up in A & E on antibiotics and missed chemo tomorrow, but temp is down today and I felt a lot better. Thank goodness.

My aches were worse this week. Have you found they have got progressively worse? X

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Re: December 2019 Chemo Starters

You in tomorrow for chemo Mrs S? I am. Anyone else? 4 hours zzzzz . Take care all Xx

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Re: December 2019 Chemo Starters

That’s brilliant news Lynne. Really pleased for you Xx

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Re: December 2019 Chemo Starters

Excellent! 1 week is hardly anything, 

 

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Re: December 2019 Chemo Starters

So pleased for you Lynne. Hope I only have to have one week of radiotherapy instead of three. I bet you can't wait to get the Picc line out! 

Mc22

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Re: December 2019 Chemo Starters

That's fantastic news Lynne! Xxx

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Re: December 2019 Chemo Starters

Just had my tel appointment with my oncologist who has confirmed my last chemo will go ahead next week as planned, bloods allowing, and the chemo nurse will remove my PICC line after the infusion.

She also confirmed radiology will go ahead but possibly only 1 week instead of 3.  This is not due to Covid-19, but is the result of a 2 year study which has shown that 1 week is as effective as 3 and was due to be introduced later this year.  The timing may be brought forward in light of Covid-19 to decrease the no of visits required to hospital.  I have my planning apt and CAT scan on 3/4 and it will be confirmed at this visit.

 

Feeling good today 🎉💪💕

 

Lynne x

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Re: December 2019 Chemo Starters

Morning all, 

 

Mc22 you asked about what happens when your PICC is removed. Mine went last week.  It was really quick and easy. The chemo nurse did it and i didn't need to make any separate appointment. It took about 5 minutes. She took off the dressing, and split the orange valve thing which kept the line in place. This split it into two pieces, so it was easier to remove the little metal hooks. This bit stung a little but not more than an injection. She then asked me to relax and stretch my arm out a little. The more you relax the easier the next bit is. She basically just pulled it out. It didn't hurt at all, despite her pulling quite hard. Job done. She put a dressing on and within a couple of days it was fine to remove the dressing. After 4 days i had a proper bath 🙂

 

Horrible mouth feel - ice cream is the best thing. Definitely. Also an After 8 after every meal helps with horrible taste. 

 

I have also decided to limit how much i read about whats happening, the more i read the more anxious i get. So best to step away and do something else such as call a friend, sit in the garden, write something, make a cup of tea in your favourite mug.  

 

I'm guessing everyone has had the texts from the NHS? I got one saying i couldn't leave the house for 12 weeks, but i could open a window! I have another health condition which puts me at risk,  so i'm trying to work out if its the cancer or the Addisons disease or both which has resulted in the text. 

 

I as stressing about supplies and feeling out of control, so i snuck off to Tesco at 6.30am. I was really careful and now have a full fridge and even some gluten-free madeleines! Its amazing what a difference it made. I was starting to go insane having not left the house since chemo last week. 

 

I hope everyone has a reasonable day, and can focus on something positive for a little while x

 

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Re: December 2019 Chemo Starters

Livers, fingers crossed mine won't last that long. Horrible sensation.

Does anyone else ever feel their body has forgotten how to sleep? It is 2 am and I am awake yet again.  This is despite taking a mild sleeping pill last night which I was only suposed to use on the odd occasion. It seems to send me off initially but only for about 4 hours. Really don't want to keep taking them in case I become addicted but desperately need sleep. On the night's over the last week that I haven't taken one I have just been awake all night. So many horrible things happening in our world that I am sure that must be the reason. The last time I slept properly must be at least a week ago. 

To think that before chemo I never took any medication apart from the occasional paracetamol. Chemo has such a lot to answer for.

Mc22

 

 

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Re: December 2019 Chemo Starters

Hi @Mc22, my mouth issues lasted for about 5 days (loss of taste buds about 10 days). I go to my local chemo centre each Monday where they run a PICC line clinic and they clean my line.  The nurse there told me the chemo nurse should remove my line after my last infusion next week, if not, she will do it the following Monday.

Lynne x

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Re: December 2019 Chemo Starters

Lady34, how long does the sore/weird mouth feeling usually last? Hope it is not long.

Has anyone got a picc line? If so where are you going to have the dressing changed each week? And what happens when you have it taken out?

Mc22

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Re: December 2019 Chemo Starters

Lady34, so we are both suffering then. Hope it doesn't last long. 

No, hubby has no history of clots. But he has asthma. I am fine for shopping as my daughters did a shop but now there is only me to cook for it is hard to motivate myself. The local grocers are now delivering to vulnerable customers and today they dropped off a 4 pinter of milk. No minimum order or anything.

I had to laugh because they are called 'Troops' and when I texted my daughter to say Troops were bringing me some milk my daughter initially had visions of a big army tank coming up the road with a 4 pinter!

Silvertong I don't have ice lollies but I do have ice cream! Will try.

Mc22

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Re: December 2019 Chemo Starters

I'm afraid I never really had a solution for sore mouth. Ice lollies might help though?

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Re: December 2019 Chemo Starters

Any suggestions for sore mouth remedies gratefully accepted. The weird sensation of thickness inside my mouth is as horrible as the soreness.  I have tried corsodol and salt water so far.

Mc22

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Re: December 2019 Chemo Starters

Mc22 I’ve had this on last and got it now. Upper pallet thick gums too feels like inner mouth has doubled in size and won’t tolerate anything much. 

 

Hopefully the clot was found in time to treat it easy. Omg did hubby have history of clots. 

Keeping everything crossed he returns home treated. 

 

Have you got anyone to get you shopping bring you food etc. There’s a .gov site to register as we are vulnerable new service to bring us food and shopping 

 

https://coronavirus-vulnerable-people.service.gov.uk/nhs-letter

 

Im panicky too didn’t sleep last night to wound up. Today got nhs call cancelled my scan next Monday so guess chemo on 7th will be delayed. 

 

Looking into any benefits I can get. Watching cookery utube videos to stay sane and keep me cooking. 

 

Sending love to all 

🙏🏽💕🙏🏽💕🙏🏽💕

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Re: December 2019 Chemo Starters

Debolina-I hope you get some reassurance about your treatment soon. This uncertainty about everything is just so horrible.

Quick question: my mouth is sore and I have this weird sensation of thickness in my mouth. Hard to decribe. Has anyone else had this? Just came on today. Day 6. Panicking a bit about side effects I haven't had before. On edge generally, I think as I am sure we all are.

Hubby still in hospital and waiting for results of all tests. He has a clot on the lung which they are treating. So I am now in solitary isolation.

Mc22 xxx

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Re: December 2019 Chemo Starters

Hi Debelina,

I totally understand where you are coming from. I was warned there may be changes to my protocol (and there still might be) and got really stressed about it, but for the moment my plan is unchanged. What I'm trying to say is try not to worry until you know for sure. Also, if the doctors do make changes, it's because they're trying to balance up all the different risks at this time but will hopefully try and make sure you can finish treatment, even if it is delayed.

 

But I do totally understand how you are feeling. Cancer is a big enough worry on its own without adding in all this extra uncertainty. I still have 9 rounds of taxol, surgery, radiotherapy and a year of herceptin to go yet so do worry a lot about how it's all going to pan out.

 

Sending everyone lots of love. Xxx

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Re: December 2019 Chemo Starters

Frenchie_77 thank you......we are both having Docetaxol but I am now also having Targeted Therapy alongside my chemo...….whereas thankfully my friend doesn't......I don't know what stage I am as it is the one thing I asked not to be told...….I think I will probably need to know this now to help me get my head round the 'selection process' if I don't get prioritised for my chemo.

I am feeling really sorry for myself tonight but am getting over the shock at hearing this could happen so hopefully will get more info tomorrow...…..I can't imagine how the consultants must feel having to pick and choose the people who are having chemo.

Stay safe Frenchie_77 xxxx

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Re: December 2019 Chemo Starters

Debelina, that news must be gutting but is your friend having the same treatment as you? I'm in France so possibly different although we are also being hit hard by covid 19. I had chemo today and they were postponing lots of people's treatments but said I could continue mine as planned (at least for the time being). When I asked how come they said it depended on the type of cancer, stage etc, type of treatment, general health of the patient etc. Lots of factors. So maybe yours won't be cancelled? I think they do look at each case individually and they did also say they just want to make sure those with the weakest immune systems/ frailest health are not put at risk. If yours does get cancelled, hopefully it'll be rescheduled? Not great I know but this whole situation is horrible xxxx

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Re: December 2019 Chemo Starters

Mc22 

so sorry to read this. Hope he gets seen soonest and treated ASAP. 

 

Praying for you both 🙏🏽🙏🏽🙏🏽

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Re: December 2019 Chemo Starters

Mc22......sending you both much love x

I haven’t had a text but I think it’s because in Ireland the NHS system operates differently.....I have just had word from a friend who is also due to have her last chemo on Monday that we probably won’t get it.....I am absolutely devastated.

Stay safe ladies xxxx

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Re: December 2019 Chemo Starters

What a day Mc22 hope you have a peaceful evening sending a big hug - haven't had my stay at home yet but haven't been out since last chemo anyway having so many wobbles right now! Today our blood test centre closed - Spoke to my nurse and treatments going ahead after telephone pre screening but said things are changing daily

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Re: December 2019 Chemo Starters

Yes me too but also got text from hospital for a radiology appointment next Monday 30th. 

 

Day 6 now feel human again ! The 5 days are don’t know how describe the series of sensations. 

 

Anyway through the lens of virus everything seems warped and weird. 

 

How is everyone today

 

sending waves of big love

 

🌲🌲🌲😩😩😩

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Re: December 2019 Chemo Starters

Yes got mine

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Re: December 2019 Chemo Starters

Hi All,

 

I’ve just received my NHS “stay indoors for 12 weeks” text.  Anyone else received one?

 

Livers

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Re: December 2019 Chemo Starters

Blimey Mc22, really sorry to hear this. I hope your husband is ok and you too. Sending lots of love and hugs xxx

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Re: December 2019 Chemo Starters

Hugs and prayers being sent your way @Mc22 - good to hear he’s out of danger.

 

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Re: December 2019 Chemo Starters

Thank you for your kind messages. Hubby isn't in any danger but he is being kept in overnight awaiting the results of tests.

Love mc22 x

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Re: December 2019 Chemo Starters

Mc22, just back from my treatment and saw this.

You must all be very frightened, and as you say, just when you think it couldn't get any worse...it does.

Thinking of you and sending you lots of love. I'm hoping you've had some comforting news by now.

xx

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Re: December 2019 Chemo Starters

Thinking of you and your husband mc22. Take care Xxx

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Re: December 2019 Chemo Starters

HiMc22,

 

Please take care, I agree that it is really difficult, but believe me it will get better.

My best wishes and prayers are for you and for your hubby to get better soon.

 

Please take care XX

 

B4

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Re: December 2019 Chemo Starters

Yes thank you MrsS1968. My daughters have been round and talked through the glass in our side door. Think it is all the stress. He is waiting for test results in casualty. Just wondering how we will manage with self isolating now he has been at hospital? They don't think it is his heart but he has asthma. I am still suffering side effects from last week's D so hope this will pass soon.

Mc22 x

 

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Re: December 2019 Chemo Starters

Oh no Mc22

 

Do you have family or friends nearby who can support you through this, albeit from a distance? X

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Re: December 2019 Chemo Starters

My husband who I have been in isolation with has collapsed. Ambulance outside and taking him to hospital  just when you think things couldn't gwt any worse. 

Mc22

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Re: December 2019 Chemo Starters

Morning everyone,

Just wanted to say I’m thinking of you and sending lots of love Xxx