Need some reassurance of things to come

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Could some of you possibly answer some questions for me, please?

 

I’m on day 10 of my first cycle of Taxotere after three complete cycles of FEC, and starting to wilt. Need some reassurance that things will get better at some point.

 

Firstly, is there anything I can do at the moment to make myself feel better? I seem to be a slave to my meds and can’t sleep each night for the pain. My social life has bombed because I never feel up to leaving the house, and frankly, I’d just like some relief. Now, I don’t have a bath, just a shower, so I can’t take one of those lovely long soaks lots of people suggest…so what else can I do? It can’t cost any money because I don’t have any. Very low income, no spare cash, bills mounting up as they can’t be paid.

 

Secondly, how long after the final dose of taxotere is it before you feel “normal” again? I’m having neo-adjuvant chemo, and have been told that my mastectomy and lymph node clearance op will be about 4 weeks after my chemo finishes, which doesn’t seem like any time at all.

 

How long after chemo finishes is it before I can have some dental treatment? So far, I’ve lost about 4 fillings, and the pain in my mouth is often unbearable, but my dentist has said she can’t do anything till I’m told she’s allowed to. It is making things even harder for me, but it seems like no sooner have i finished chemo than I’ll be in hospital, then recovering from that, and I’m desperate to get my teeth sorted out!

 

Can I please ask the larger ladies here (I’m a 44DD) about mastectomies. If you had one breast removed, were you reassured that they would reduce the other one when they did the reconstruction so they match afterwards? If you’ve had it all done, did they match? I’m worried that I’m going to end up looking very lopsided. I’m 48 so my bikini days are long gone, but I don’t want to look like a freak afterwards. I can’t get my head round how it’ll all turn out.

 

Mastectomy bras/camisoles…how do you work out what to buy? I’m on the tightest budget imaginable. I feel guilty every time I spend money on myself instead of food or bills. But do you buy them to fit the size you are pre-op? I’ll have to buy online as I can’t get to any shops, and stuff is cheaper online anyway. I buy mainly through Amazon or eBay. So any insight into getting these would be appreciated. My op is in May.

 

I won’t ask about radiotherapy. I can’t think that far forward yet. It’ll be in the autumn, from what I’ve been told so far, at a hospital that is about one and a half hour’s drive away, so I’m really looking forward to that! (not)

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Dear SJB

You might find it helpful to talk over some of these things with one of our helpliners.  They’ll be able to offer practical information and emotional support.  The opening times are 9-5 on weekdays and 10-2 on Saturdays.  The number is 0808 800 6000

Very best wishes

Janet

BCC Moderator

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Hi SJB,

 

I’m sorry to hear you are having such a rotten time of it. I can’t answer you questions about TAX, as I only had one. I was so ill my oncologist put me back on FEC. I do know that many of the February Valentines who had TAX are still having aches, pains and peripheral neuropathy 9 months after their treatment started. 

 

As a larger lady (44D) who only had one breast removed (no recon) I was offered a reduction on the other side, but didn’t take up the offer. But I was told they could reduce the remaining breast by about 3 cup sizes if I’d wanted. But this might differ from hospital to hospital. 

 

As far as camisoles are concerned, I wear normal ones for the size I was. These from Amazon look ok:

 

amazon.co.uk/LADIES-COTTON-VESTS-STRETCH-CAMISOLE/dp/B007W3ZTMC/ref=sr_1_1?ie=UTF8&qid=1393595736&sr=8-1&keywords=camisoles

 

I used to pin my softee to the inside on mastectomy side to add a bit of shape.

 

I also have a bra similar to this sports bra:

 

amazon.co.uk/SODACODA-Comfort-Sport-White-Black/dp/B00A57T47I/ref=sr_1_2?ie=UTF8&qid=1393595912&sr=8-2&keywords=genie+bra

 

and took out the padding and managed to stuff my softee into it’s place.

 

But normally I just go braless and wear loose fitting tops with perhaps a scarf tied loosely to hide my ‘missing’ bit. I’m so used to it now, as I never wore a bra before BC anyway. 

 

I know you didn’t ask about radiotherapy, but I refused that anyway. I have a lung condition so didn’t want to take any risks making that worse.

 

All the best

 

poemsgalore xx

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I had 3 tax chemos. Not nice. Horrible mouth. Pains all over but I can promise it did pass. I felt better around the 10 day mark. The first tax was def. the worst for me. Once I knew what to expect I could cope. I felt much better after the mid way point of last chemo. Radiotherapy was fine for me. No problems with skin. I worked all through radiotherapy with no major tiredness.

Immediately after last radiotherapy I went to Rome to celebrate my 50th birthday. Spent all day walking. Ate and drank well in the evenings and felt wonderful.

I have smallish breast so that maybe helped with the radiotherapy.

For me-getting plenty of sleep and fresh air every day helped…and sipping on mugs of warm soup when my mouth was horrible.

Then I started on Tamoxifen! (Cue scary music).

Good luck, I promise it does get better.

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SJB-I had never dieted in my life. Have always thought they were faddy. Stuck to healthy eating but I gradually piled on the pounds. My sister lost tons of weigh on the slimming world program. I was unconvinced it would work for me. So, sceptically I gave it a go-and lost almost 2 stone. It was very easy to stick to-and I didn’t join a group just got the low down on how to do it from my sister. We have both had breast cancer-with all the weigh accumulating treatments!

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Hello, SJB.  I have to say that I found Tax far more of an ordeal than FEC- but my BCC said it really is brilliant stuff at zapping all the nasties, so I just held the faith, gritted my teeth until I got through it.  I know exactly what you mean about being a slave to the medecine regime- I used a notepad in which I jotted down the meds for each day, the times I had to take them, and ticked them off throughout the day. 

I met friends for lunch etc on week three of each cycle of FEC, but was in such a bad state of exhaustion, terrible joint pains etc on Tax, that I mainly stayed in, and friends visited me, on the understanding they would have to make the coffee, as I was so wiped out, I wasn’t even up to doing that!!  I saw it as an ordeal- like a marathon, that I just had to endure, but always bearing in mind that it was getting me better, and that there was light at the end of the tunnel.

Others have mentioned that the radiotherapy was a breeze, in comparison to chemo, and I have to fully agree.  I cannot comment on mastectomies, as mine was primary DCIS, so I had a lumpectomy- but needed the chemo as it had spread to my lymph nodes.

I am now two years post active treatment, and I have to admit it took me a good long time to start feeling more ‘normal’ again, and it is only in the past few months that I have actually ‘bedded in’, and accepted my ‘new normal’, with chronic joint pains from the Letrozole, and fatigue, which still has not really left me. I am not saying this in a moaning fashion, because I am just so grateful to still be here, and hopefully look forward to seeing any grandchildren which may come along- the Consultant told me it would have spread within 6 to 12 months, had the tiny half a centimetre lump, not been picked up by the NHS mammogram screening programme. 

I think my best advice to you would be to take each day as it comes for the moment, with all the downsides that chemo brings, but with the knowledge that you will get through it, and that at some stage it will become a distant memory- although of course, it will always be part of you, but becomes less sharp, the further away from active treatment you get. Take care.