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Help !!

8 REPLIES 8
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Re: Help !!

Hi Jan thanks for telling me about the different things i can take to help with sickness thats the thing I've been most worried about as you can imagine , I've suffered since i was a toddler and it had defined my whole life i used to have panic attacks for years just thinking i felt sick when i didn't !!

The nurses have been wonderful and i know they will do everything to make sure that I'm not sick.

Im living on my nerves at the moment awaiting the results from the CT scan worried this nightmare is going to get even worse, i know the team have their meetings on a thursday morning so i might find out tomorrow , like you my mental health is shocking i wake in the morning wishing i could just go back to sleep for the day , likely I'm on anti depressants that i take of a night that have a sedative in them so i do sleep all night.

Thank you for taking time out to talk to me it is such a comfort , 

Take Care 

Linda xx

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Member

Re: Help !!

Hi Linda

How good (but how awful) to meet a fellow emetophobe! Do tell your team as they’ll do even more to hel you.

My oncologist prescribed 2 lorazepam per session. No buzz but everything felt completely normal and I had no inclination to have a panic attack and do a runner!

The first part of chemo, the prep, includes a tablet against being sick and a drip including a steroid against sickness, antihistamine and something else I‘ve forgotten. That’s your first half hour. You may experience a surreal sensation if the steroid is given too quickly (I can only describe it as sitting butt naked in a nettle patch! It passes in moments). You probably won’t feel anything during the actual treatment except boredom. If you’re having any EC, you’ll have red pee for several hours lol.  

You’ll be sent home with a steroid against sickness (for the first 5 days when it’s more common) and something like metoclopramide tablets (against nausea). I already had cyclizine from my GP so I was told I could alternate the two, increasing my chances of not feeling any sickness. I only used the cyclizine and that was ‘just in case’ as I genuinely felt no nausea and certainly was never sick. Beyond constipated, yes, but never sick!

Incidentally, regardless of the chemo, if you find your phobia makes you feel sick with anxiety, you can ask your GP for cyclizine. I thought I’d be taking it all the time but it really does work and makes me feel a lot more confident - so I don’t use it much!

All the best. Keep us updated 🙂

Jan x

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Re: Help !!

Thank you so much Paulos for your reply i really do appreciate you taking time out to talk to me , one thing i have learned through this is that people are so kind.

So glad to hear that you are through the other side to this , it gives me more confidence that so many people get through this . your right i am lucky that i the NHS have been on top of this and have rushed everything through for me , its just the waiting game on results and it just seems the nightmare seems to be getting worse as each set of results get worse and my mind is blown away .

Thanks again , Take Care 

Linda xx

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Re: Help !!

Hi thank you so much for your reply i am so humbled with the responses i have received and realise that i am not on my own with this and it is so fantastic to hear all of the positive stories , 

So glad you are the other side to this , thank you 

Linda x

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Re: Help !!

Hi Jan , i can't thank you enough for replying to my post .

First of all i am so happy that you are fully recovered and are well. I too have a phobia of vomiting , have done since i was a toddler and have had lots of professionals try to help me with it over the years , so obviously having to have chemo is frightening me so much although reading your post has helped so much .

Your reply really helped me feel a bit more positive as yes i am only 43 and am normally very fit and healthy, i really can't than you enough,

Linda x

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Re: Help !!

Hi Linda

I’m so sorry you’ve found yourself in this vile situation - that was me 18 months ago and I’m still here and recovered. It’s a very scary world to get sucked into and I found myself with severe anxiety a few times but my surgical and later my oncology teams bent over backwards to help me. I made a decision to just trust them and hand myself over to them, which is very unlike me. I told them all my fears and expected solutions - and got them! It worked very well for me.

Quick bit of background - I had two tumours and a skin breakout (after a clear mammogram!), so I had a full mastectomy and axillary clearance. 19 of my 21 lymph nodes were found to be infected. My CT and bone scans showed no further spread and then I had 18 weeks of chemo, followed by radiotherapy, with Zometa infusions every 6 month for 3 years and hormone therapy for 10 years. My most recent MRI showed no cancer anywhere. I am probably a lot older than you (68) and don’t have your family responsibilities. I have had chronic mental health problems, including a phobia for vomiting, since adolescence so I did have a few panic attacks initially. 

Try not to get bogged down in what I call cancer language (Ductal? Lobular? Aggressive? What difference does it make except to scare the wits out of us?) and definitely do not Google anything - it can be disastrous because it’s all general, not specific to your unique situation. Don’t start predicting life expectancy - statistics are pointless and very alarming. If you have questions, ring your team or ring the nurses here at the number above. They are incredibly reassuring and very knowledgeable.

There is nothing you can do to change your diagnosis and your treatment plan (unless you choose to disagree with your specialists for particular reasons, as very occasionally some women do). So, all you can do is accept it and get on with it, knowing your team has your best interests in mind. You have an amazing husband, who you’ll need every step of the way. 

Chemo isn’t necessarily as bad as we fear. Given my phobia, I was terrified, but I never felt sick or was sick; they have all that sorted now. Some women sail through it - one woman posting earlier this week had carried on working and been away on holiday. Other women, myself included, are knocked for six and feel like zombies much of the time. Most are somewhere between and you have no idea where you’ll be till you start it. The actual treatment is fine - people sit and chat to each other. In the good old days before social distancing, everyone had a friend with them and only once in all my treatments did I see someone feel poorly, and she was dealt with very quickly. It’s once the steroids wear off (day 5) that the real effect of the chemo is evident.

What I want to say is that it’s all doable. They describe it as a rollercoaster ride and I think that’s spot on. Emotional and mental wellbeing are a huge part of it. So you need to take active steps now to deal with the anxiety and fear. Some people already have their own methods, like mindfulness or running. Personally, I found YouTube was my saviour- there are videos you can plug into that will help with relaxation, insomnia, anxiety... my favourite was Progressive Hypnosis’ Manifest Healing. She saw me through some tough times and I still plug in my earphones regularly. Don’t ignore how you’re feeling. If it feels unmanageable, talk to your doctor or your team - these are exceptional times for you and they will know how best to help you. Don’t be fobbed off with ‘every woman feels frightened’ (as one GP told me) if you know your fear is unmanageable.

I’m sorry I can’t be more upbeat and encouraging - the whole situation is sh*t. But, like I said, it’s manageable and there are thousands of women using this site who bear witness to that fact. I hope your CT scan results are good and you can start your chemo soon - but do be ready for lots of waiting. Waiting for test results, waiting for appointments, waiting to see a doctor, always waiting. All the best,

Jan x

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Re: Help !!

Hi Lindaj76,  welcome to our lovely forum but sorry you find yourself here.  If you want a similar story with a survivor then please read mine Http://lifeafterlola.com/ 
My tumour was still 90mm after chemo and had spread to 9/12 lymph nodes.  It was diffuse before chemo and in the chest wall.  I had a non skin sparing mastectomy and all of my nodes removed.  It’s a tough regime but it’s all doable and life on chemo is similar to social isolation so you’ve already had a bit of practice.  You can join the monthly chemo thread once you have your date to chat with others going through the same.  I found this really helpful and still keep in touch with my chemo buddies.  Feel free to ask any questions or have a rant or a meltdown away from your loved ones.  Hope this helps a little.  I know it’s hard to absorb.  Best wishes. Xx

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Re: Help !!

Sending you the biggest hug dear Linda.

You must be in a complete state of shock, what with diagnosis and surgery in such a short window - which is good, but your head will need to catch up with yourself.

There are lots of lovely ladies who I am sure will come and help you with all your questions and anxieties, and if it is quiet at the moment I am guessing it is because of a bank holiday weekend  -  and bank holidays and weekends are the times when we can feel really lost and alone.

It will end, but I am sure others have already said that it is truly a day at a time.  It may not feel like it right now, but you have been diagnosed and had answers and surgery quickly, and that is a bonus, rather than to be left waiting and waiting - especially at the moment.  So hold on to the positives of the bad situation.  You are now in a place where you have had some answers and you can move forward.  And you will, with your lovely family around you.

I had a diagnosis 2 years ago, and had lump removal and lymph node removal (1 positive lymph node) followed by 4 weeks of radiotherapy.  So nowhere near as drastic as your situation, but I remember how it dominates every thinking moment.  

Wish you better days - and there will be xx  Paulus

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Help !!

Hi ladies , i was diagnosed with breast cancer about 6 weeks ago now , initially they told me it was one tumour but then said there was 3 , i had a mastectomy nearly 3 weeks ago and was told 2 days ago it was in fact one large tumour of 112mm , they took out 4 lymph nodes and apparently it was also in the first 2 .

Today i have had a CT scan , i'm petrified this nightmare is never going to end.

My mental health was bad before this and now it is unbearable .

I've been told i will definitely need chemotherapy and radiotherapy , i have 4 beautiful children and an amazing husband and i can't stop thinking i won't be around for them , I'm so frightened .

would love to speak to anybody who has been through this or are going through it now xx