Enough is Enough

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I met with my surgeon at the Royal Surrey on Wednesday.  Unlike the doctor at the Jarvis Breast Centre, she told me I would need either a masectomy or breast conserving surgery; this based on my 3D mammograms.  The Jarvis doctor was all reassuring from the start that I would only need a wide area exision and radiation treatment, although I knew it might change it was something to hope for at least.  I am really annoyed that she was so quick to tell me several times something which was untrue from the start.  

 

I am now waiting for an appointment for an MRI, blood test results for liver/kidney function and something else I forget, I think the surgeon said it has to do with whether or not they can inject me with the dye before the MRI.  Probably more sonograms and biospy after MRI, surgery most likely end of September.

 

The surgeon said that Lobular cancer does not respond well to chemo and she was not going to refer me to an oncologist.  I don’t get it.  I know many women with Lobular have chemo.  The breast cancer nurse later said she didn’t rule it in or out, but that’s not what I heard.  

 

On top of all this I saw the GP this morning.  Bewteen my cancer diagnosis and my husband’s death I am struggling and went primarily for antidepressants.  Plus, the past six weeks I’ve developed acid reflux, probably from stress, and a tickle in my throat which makes me cough to go along with it.  The surgeon started me on Letrozole so I asked for Citalopram given it’s been shown to reduce hot flushes.  Not that I know if I will get them having only taken two Letrozole tablets so far … but why not?

 

The GP did my blood pressure, which as a surpise to me was normal.  My pulse was racing, no surprise because I was practically shaking with stress.  However, in listening to my chest for my cough she detected a heart murmur and I’m not scheduled for an ECG.  So, I’ve got that little add-on to my growing list of things to worry about.  With caring for my husband I have not seen a doctor for a check up or anything in well over 8 years and I’m 64 so things do crop up as you age … but now I am scared that the murmur will somehow effect surgery.  Good think one of the things I’ve done this week is start on getting a new will made up.

 

Sorry, I am ranting and whining, but I am finding this a real difficult time.

 

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Hi Stacey, firstly (((BIG HUGS))) cant really offer any advice to your heart murmur but I’m sure your g.p will contact the breast clinic to advise them about it,when I had my pre op assessment I was given an ECG I’m sure this is standard but don’t quote me on that its just what I had as well as as blood tests etc,I have grade 2 lobular on my left and orginally lobular on my right and my treatment was planned for a WLE and radiotherapy but as it turned out my right was actually grade 3 IDC only then was chemo mentioned which I’m unable to have anyway as you know you kindly replied to my thread yesterday. All I wanted to say really was, you are going through an horrific time at the moment words cant even comprehend.you have so much to deal with without something else been thrown a you. What the lovely sue said too me yesterday was let your team do there work and all the planning they need to do theres treatment for everything and different ways to do it. And you could also ring the helpline who I’m sure know more then me and have the appropriate answers to put your mind at ease. And I hope the anti depressants do there job quickly and you start feeling less stressed. And please feel free to rant and whine all you like this is what this forums all about everything your going through and having to cope with at the moment.and BC is difficult in its self to cope with out everything else you have to deal with on top if it! Take care and I hope things get sorted for you soon big hugs. Xx

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We all need reassurance Stacey at some point or another,and you took the time out to reply to me yesterday and I’m grateful for that. I will be thinking about you. Please take extra care of yourself. Xx

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Hi Stacey. Sometimes it would be lovely if this weren’t a virtual forum and we could all give you real rather than virtual hug and care. Citalopram will take a couple of weeks to become fully effective and can often make symptoms worse initially. The next few days I am sure will be even more difficult as you face the funeral. Anxiety is a truly horrible thing when at full pelt. I think it would be worth speaking to your GP again. Whilst diazepam or similar, isn’t something to take in the long term, you could discuss with them about whether it can support you and give you a bit of respite in the short term. I would ask also for a referral for talking therapy, unless this is something offered through your local breast cancer service. Just having someone anonymous to listen can be so helpful. Thinking of you xx

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Stacey,

my thoughts are with you today.

                                       Remember the past.jpg

Hugs

Sue xx

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You will be in my thoughts today x

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Stacey,  Thinking of you today, and sending you a big hug,x

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Thinking of you Stacey. Big big hugs x

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Hi Stacey, still reading your posts and sending you love and positive thoughtsxx

 

When my dad died in May this year…after just 6 months of putting in lots of energy to try keeping him well,  the funeral arranging and trying so hard to get things right took hours/days, there were upsets between  family members, lots of liaison, organising, etc and it all takes energy. 

 

I started my chemo about 4 weeks after and I was in a complete anxiety state, I felt so embarrassed in the i/v suite as I couldnt stop crying. ( I was a nurse in a previous life, pre cancer, and well used to helping others, and being totally in control of my life.)

 

As I had, had my initial diag in 2001. I felt I should have been braver, more seasoned etc, less of a wimp. the nurses were very kind and over the past 10 weeks ive grown to realise that they all have great compassion and understanding and that Its really ok to let my hair down as needed.

 

Just to share in case it helps,… the week before my first recent Eribulin chemo, I had headaches, cough, sore throat, acute anxiety and neck stiffness, shoulder pains etc. i couldnt understand why the oncol thought I was well enough for chemo!  Anyway, once Id had my first two infusions, all those symptoms went away…I know now they were stress…( at the time…Id felt I was ill)

 

Normally, im able to bounce back emotionally and have a good handle on diverting/parking. all the worries our brains keep focussing on.   I just had to accept that, for the time being I was doing the best I could…thats all any of us can do, 

 

Back to you…you have shown great strength and fortitude, all those years looking after hubby and, then, just when that ends, you yourself get another big whammy. Our pets also are like children to us, my beloved maincoon puss, who looked after me when I first got ill, she died a few years ago…a big loss. So I’m really on the same page regarding your

dogxx

 

Stacey this jumble Will even out…be really kind to yourself…we often arent, just take time out to hug yourself.  you sound a really resourceful lady and will bounce back.

 

lots of love and hugs…we are all there for you

 

Moijanxx

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Oh Stacey, 

 

i just read that  you were told that Lobular cancer doesnt respond well to chemo…mine is lobular cancer and although i did need a mastectomy (5 by 8cms tumour + 12/13 involved l/n) mine responded well to chemo, Taxotere and I had 10 years before it came back, with help from Letrozole!

 

i now have liver and spine mets which are responding very well to Eribulin. Currently…

lots of good news there. Maybe the onc wasnt very clear…that happens. i usually take a friend if im expecting bad news and get her to scribe…so much to remember!

 

just be  aware, there is always some time to think over any options you are offered, dont feel pressured to make a quick decision. Also, you can always change your mind…these are two truths I have taken a long time to realise! But well worth bearing in mind.

 

Sue has given you lots of good advice, take some time to see how you feel about all the options available, 

 

do keep posting, let us know how things are going. We are all here for you

ps. We are similar agesxx

 

hugs

 

Moijanxx

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Yes, lovely Sue, you always put things so very wellxx I find the unknown much more scary than the reality. 

 

i totally agree about the bouncing back, and trying not to stress…after all, stressing doesnt change things…

but sometimes its hard to switch off. My friend once said…try not to be ‘continually reading the book’ put it back on the shelf sometimes…its hard to do, but I try to make an appointment /a time on the clock, a few hours hence,  for myself when im allowed to sit and worry…and often when that time comes, I dont need it! 

 

as Sue says, you will find peace in time.Stacey. Come and share it with us when it feels too muchxx

 

huggy thoughts

 

Moijan???

 

 

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Hi Brenda,

 

thank you for joining in with us and sharing. We have all been in a similar place to where you find yourself now. Fear is probably one of the very worst aspects about having cancer, we all struggle with fear of the unkown as we cant just have a quick look/check inside our bodies and reassure ourselves. Often, its hardest to cope with when we are alone.

 

The words that are used, such as grades, staging, clear margins, etc are also very scary and I found that yes, I wanted to know Everything about my cancer, because not knowing is much worse for me - but also, once I had had things explained and then stressed over ‘that’, - then gradually, over the past 16 years, I found that, for me, being a stage 3. Or 4 had become less meaningful.

 

At my first diagnosis, I was given the news that 12/13 armpit lymph nodes were positive and cancer had spread outside these into my armpit. My breast tumour was 8x7 cms, with less than a mm clear margin. I had all of that removed and  they told me, I had 75% chance of it coming back within 2 years. I thought id be gone in six months! I prayed for a five year survival, then another 5, and now its been 16.

 

I am currently on chemo again, but am getting really good results…I really didnt want chemo because I was scared about losing control, the unknown again. … However,I feel so well on chemo, I almost dont know im on it!  If you need chemo, the chemo nurses will help you through it,  and the bcn is also there for you.

 

I am grateful that there are so many good drugs out there to help us tackle this horrid disease.

how lucky it is that we are being treated at a time when scientists are crackng the codes of how cancer operates, One day cancer will be preventable, or at least controllable and we hear frequently about new drugs!

 

How do i tackle my fear?  when im alone, sometimes I make an appointment a few hours hence to worry as much as I like, and try to keep reminding myself about it, when the monkeys start jumping again. Other times, I have tried drawing or painting my fear, that has also  worked. This forum has latterly been a godsend as there are so many lovely people here, to support us. i have also chatted to the helpline nurses.

 

you will find your own ways to deal with the fear because we are all different. Please let us know how you get on. We are all here for youxxx

 

huggy thoughts, Moijan???

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Hi Brenda, hi Stacey,

 

There has already been so much good advice given already but allow me to add my twopenneth in the hope that it will offer some reassurance. This time last year I was spending the bank holiday weekend in hospital after my mastectomy and reconstruction. I’d never had surgery before and was terrified that I’d be laid up in bed for weeks rolling around in agony. It was not like that at all. While I was lucky to have my husband aound the place for the first few days, I could do a lot more than I ever anticipated I would be able to. I did the exercies religiously and had full movement back pretty quickly. Post-surgery drains are a little irritating but livable with. Two weeks afterwards I was out attending our annual street party and nobody knew there was anything wrong with me apart from a couple of neighbours who I told at the end of the day who were all shocked as I looked so normal. My neighbours were fantastic all though the treatment - not bothering me constantly but sending texts when they went to the supermarket to check if I needed anything. Although we all have busy lives many people are essentially kind and will support you although I realise it’s not always easy to ask.

 

I went on to have chemo and while some days were challenging, like Sue, I was able to work part-time and it was nowhere near as horrific an experience as I’d expected. I hope I don’t ever have to do it again but I know if I did have to face it then I could. The fear was much worse than the reality for me.

 

You should be offered an holistic needs assessment by your BCN or other support workers. These are organized by Macmillan and are meant to identify any issues surrounding your lifestyle that you may need help with throughout treatment. So, if you really do feel anxious about living alone and going through this then they might be able to make suggestions as to what can be done to help you. 

 

Sue’s suggestion about getting organized and preparing in advance is one that I’d echo. I actually ended up doing more cooking and experimenting in the kitchen during treatment because 1) I had time and 2) I wanted to experiment with more healthy options. It really helped focus my mind if I was allowing troubling thoughts to creep in and has had the added benefit of increasing my repertoire in the kitchen.

 

I so totally understand how you are feeling now as this time last year it was me standing in your shoes. You will get through this. It might not be how you planned to spend the next few months of your life but you will do it. 

 

Stick around here and let us know how you get on. One postive thing that has come from my diagnosis is the people I’ve met, in real life and here via these forums. 

 

Sending you both much strength. 

 

Ruth xx

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Good luck today Brenda. xx

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Yes, very good luck with the surgeon today Brenda

 

i am sure you will make the right choice for you.

 

Moijanxx

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Well done Brenda, good choice for you.

 

please keep in touch with us.we are all here for you.

 

.you will likely have more queries as time progresses. If you would like to hear more about how I used projects and personal goals, to keep coping with my own cancer journey, just let me know, either on here or by personal message.

 

Lots of love and huggy thoughts.

 

Moijanxx 

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Hi Brenda,

 

I have had quite a few chemos now and …I can really understand your fears about it…

 

Once youve had your first session tho,  - that is if you do decide to have chemo (together with your surgeon/oncologist) I think you will feel much less frightened.  The team will try their best to minimise possible side effects as they will want to support you to tolerate it and continue with it.

 

I find the chemo suite a very friendly place, you wont be alone  and the nurses are very supportive.   I have made a few friends there along the way. As Sue said, you will need to be aware of how to prevent lymphoedema. But try and take each day as it comes…if you can, there is a lot to take in. You might find a short break away, before the op will help you to have some time out if that is possible.

 

I found I was a bit overwhelmed by everything rather like you are, even when  I started this currect chemo, and I needed to take time to catch up with myself, and take some control back…if that makes sense…I sense you have already begun to do that, you have made an excellent start.xx

 

If you do need chemo, they will also discuss ‘lines’ and ‘port o caths’ with you, I have an appointment with our nurse specialist tomorrow afternoon to discuss the options and I have been putting it off for a while so that I could get my head around it.

 

You may be having a similar meeting yourself. I have written all my questions on my ipad, so that I dont forget any of them! I do that now when seeing any doctor…just in case. I just hand it over and they answer all my queries.

 

Hopefully at your hospital, they will also offer you a group session with the physiotherapists…who will go over all the things you will need to know and offer tips on excercise and how to look after your hands and arms. In fact mine came to see me on the ward soon after my op, to help me. And as Sue says, this forum is a mine of good info.

 

let us know how things are going, when you feel like it

 

Hugs, Moijanxx

 

 

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Brenda, what is worrying you about the lymph nodes? Is it worry that they may be positive? Or are you worried about lymphoedema?  If they are positive, then any treatment you have( if chemo or an oestrogen blocker if o pos) would also tackle that.

 

Dont be surprised if the ‘monkeys start jumping’ again, now that youve made your decision, whatever way you chose, you would find yourself having some worries…the brain does that to us…its thought that the brain behaves in a protective msnner by trotting out all the things that might ever/ or not happen, what we struggle with is trying to divert our thoughts away from the worry…very tough to do.

 

Have you tried to mentally put the issue in a sack and flush it down the loo? Or to try a glass* of your favorite tipple…just one.

 

the other thing is, if you find you have persistent worries, make an urgent appt to see the cons again, or at least the nurse spec. Gps are often less good at this situ, because they arent hands on in oncology…just remember, you always have the right to ask for more info…or even to change your mind, they are used to it, believe me.

 

hope you get a good nights sleep( I actually typed slerp!-*). I try loads of deep breaths whilst reciting something in my mind…that helps blot the monkeys out!

 

love,

 

Moijanxx

 

 

 

 

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Hi Brenda,

 

so sorry you have that worry. I had 12 out of 13 positive on one arm and that was in 2001. I recall scouring the breast cancer forum sites,( there were three at the time I found) and asking how many people had survived very long in a similar situation.  Lots of people came back and reported they had! You mentioned being alone in the dark, yes thats often the worst time, …  

 

i cant take away this worry, but if any of them are positive…the treatment you are given will target these as well as any possible lingering cancer cells elsewhere.

 

Regarding lymphoedema, I have had lots of help with that, should you be unlucky…and theres no certainty that you will…hold onto that thought…there are therapists out there who can help you. There is also an association called the Lymphoedema Support network,  who are right there on the case.

 

however…‘.Lymphoedema’  is  maybe one thought…just  too far ahead. Having been warned about it…try to put that ‘book’ back on the shelf…till its needed…if at all. Not everyone gets it…we only hear about those that do!  Take each day as it comes.

 

thats the brain again…I find that once something is mentioned, the brain immediately goes to ‘that’ and the 'monkeys start jumping ’ over that new possibility. Happens to us all…its not easy…we have to try and find ways to control it. But we can, once we realise whats happening…its like a young puppy which needs to be trained!

 

 

If you need to, do go back and chat to the nurse specialist, or call the bcc helpline, ive done both several times before and it always helps.

 

love Moijanxx