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Jemima
Member
since
03-02-2019
10
Posts
3
Hugs
11-05-2019
04:40
Hi Thanks all. I did speak to a nurse helpline where they did my operation and she said it varied how many days you have injections for depending on the dosage of the chemo and how likely it is to affect your cell count. She said the chemo nurses would come up with a plan which might involve the district nurses - though I can't believe that after the ward nurses had to beg for the service local to me to do the dvt injections after my operation. The assumption that I would do my own injections and the last minute referral just before my discharge left me extremely anxious. At least it looks as if they might not have to start immediately after the chemo.
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11-05-2019
03:38
Hi SP Thank you for your reply. To put it this way, would you have been able to get in a taxi and travel for an hour to get to the hospital for several days after the chemo to get the injection because realistically that's what I'm going to have to do?
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11-05-2019
02:05
Hello Everyone I'm due to start chemo on Tues 14th having delayed it for 2 weeks to try and recover a bit more from my diep reconstruction 6 weeks ago. I am absolutely terrified and very unsure that I can really go through with it. My latest wobble today is to do with injections. I've been reading posts from people who have these. My team skimmed over this aspect saying I could go to the hospital each day to have them or to my GP practice. Apart from the huge expense of this, I would think it's infeasible considering how tired and ill I'm likely to be. And there is absolutely no way I will be doing them myself. So what I want to know is - does everyone have them routinely or are they just done if needed; do they start the day after you have your chemo; how many days do they last; and do you have them after every round? I will have 4 rounds of EC 3 weekly and 4 rounds of T fortnightly. TIA.
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28-04-2019
05:08
Hi I've been advised to have chemo which should start in May but am extremely reluctant for various reasons. I was interested that two of you have had onco testing. I don't think they did any tests for me apart from predict which the oncologist did with me. My lymph nodes were biopsied during surgery and 2 were removed which were found to be positive. I was told that they wouldn't do an onco test as it wasn't supported by NHS guidelines. I'm aware that the NHS won't pay for the test normally when there is lymph node involvement. I also know that it seems quite obvious that I need chemo. I just wondered on what basis was the onco-test done in your cases or did you pay for it yourselves? Whilst I can't afford the onco-test I'm desperate enough to pay for endo-predict. Thank you.
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20-03-2019
12:40
1 Hug
Thank you Nettie62 and Aneeebel, I got a bra from M&S and just completed the form. The assistant seemed familiar with it. I think there's confusion around this issue as you feel like you need to prove you're not pulling a fast one. When you think about it even if they did investigate (which they probably dont), you're either having a mastectomy or you're not so assuming that you are you have nothing to fear. The only problem is really you shouldn't have to buy a bra you don't actually need (having immediate reconstruction so don't need pockets) just to get the vat off!
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16-03-2019
11:13
Can anyone advise about how to get the VAT off surgery bras, I can't find the information anywhere online. I'm told you need to fill in a form but where do you find this form?
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04-03-2019
10:57
Hi All Thank you all for your replies. It's very helpful to know how others have got on. I am starting to waver about DIEP as I'm not sure I can manage such major surgery. I may not have any support when I come out of hospital, even getting in the taxi home or going back for my first follow-up appointment may be too difficult - I don't know how I'll carry my belongings. I also can't really afford 3 months off work. I'm thinking I may have to go for the implant option though I'm aware this is more likely to lead to problems in future as well as probably leaving me with a less natural look. I really don't want to have to go for the implant option due to practicalities, but fear I'm being unrealistic to think I can manage after such a big operation. Is it possible to manage without support or with very little support?
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01-03-2019
08:57
It's envisaged I'll have an immediate reconstruction after my mastectomy using fat from my abdomen. I've read similar posts to this but they haven't really concentrated on the effects of the stomach surgery. I just wondered what other people's experiences of this have been. It seems like an area that would be very painful after surgery. How difficult is it to move afterwards - get off the bed, bend down to use the loo, even reach to get something off the bedside cabinet? I know it sounds daft but will I be able to clean my cat's litter tray when I get home? Also, I feel squeamish about coughing, and I get severe migraines which can involve vomiting. Is there anyone on here who's also a migraine sufferer, I'm terrified of waking up with a migraine after the surgery and wonder if I would be able to take my prescription medication to for this. Thanks ever so for any advice anyone can give. Jemima
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05-02-2019
09:55
1 Hug
Hi All I'm afraid I don't know how to reply to the thread, it looks like I'm only replying to Val. I meant to say thank you to you all for your advice, it's made me feel so much better. I think my consultant did say she liked to be thorough and she probably explained the reasons for the tests but I suppose I just didn't take it in. It just hit me some time later that I was having a lot of tests very quickly. I wondered why I seemed to be getting the gold standard. I read that the MRI in particular was very expensive. I hadn't realised there was an NHS timescale and it was standard for people to have these tests. Your replies have made it clearer and I'm now a bit less scared. Thanks ever so once again for the support. Jemima
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03-02-2019
06:49
1 Hug
Hello All This post is a Iittle similar to the one left by Lotuslil in terms of the diagnositc processes and timescale. I was diagnosed with Invasive Ductal Carcinoma Grade 2 on 25th Jan (Fri before last) and things have moved very fast since then. The doctor at the assessment centre said that the biopsies indicated that my cancer probably hadn't spread. My case was then passed to my local hospital. I rang to inform them of my change of address on the Mon and they rang me on the Tues to make an appointment for me to see the consultant at the new hospital on the Wed at 8.30am. The speed of this was quite alarming. Then on meeting the consultant, it was decided that I should have a blood test, bone scan, CT scan and MRI scan. Immediately after this appointment, the nurse suggested I go and have my blood test straight away and book the CT scan also. I did both of these. Then the following day, I received a phone call with the appointments for all 3 scans within a week. I've now had the bone scan and CT scan and will have the MRI scan on Thurs. I find it quite frightening the urgency with which they seem to be treating my case. I just wondered if it was normal to have these tests and do they normally take place so fast? Thanks. Jemima
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