67.8K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Mixed feelings

2 REPLIES 2
Kaisa
Member

Re: Mixed feelings

Hi Jan, thank you for you reply and comments.

I got my wig on prescription from the NHS Highland - I thought it was the same for all?

If you knew what type of year I have had you'd understand how this cancer diagnosis hasn't phased me as much as it would have without everything going on around me 🙂 ! Between hubby being in hospital (he was critical) and me unable to visit (he was 100 miles away and I couldn't leave the farm), my mother passing (I could not go to her funeral as she lived in Sweden and the boarders were closed plus I couldn't leave the farm), my son's (21 with anxiety issues) terrible and hurtful break-up with his ex (she was awful to him), we had the worst calving ever with 3 cows lying on their calves and suffocating them (!), the lambing weather was horrendous with more lamb fatalities than usual (foxes, black-blacks and snow), no proper sleep for 3 months during the calving/lambing, my fibromyalgia deciding that more pain was required along with the bulging discs in my back, my arthritis hated the lambing too, the lovely farmhand I employed to help us breaking his ankle after 2 weeks, finding out I had an older half-sister that was adopted by an aunt and this all happened within 4 months! So I chose to laugh and not cry at my cancer diagnosis - I had had enough lemons thrown at me. Well, not literally laugh but take it as it comes. I did cry of course in the beginning and even wrote lists of "who gets what when I die", "music to play at my funeral". I have lousy days like when my bowels decide to void the foulest smell ever and vaporise the air with an aroma that could kill, or the bone pain in my hips and sternum rages, when I long for coffee and the taste reminds me of nothing, when I can't help even to guard a gate or jump on the quad like before - it hurts inside me but what can I do. 

Thank you for your bra advice! I am a nordic amazonian gal so finding bras that look comfy in 46D isn't easy. I did look at the M&S bra but doesn't come in my size. "Monoboobery" will be an option too - a neighbour does that and I never noticed until she mentioned it. 

My consultant and I did discuss post histology result treatments and he told me various options but we both agreed to cross the bridge when we get there. 

Thank you once again for your reply x

Jaybro
Member

Re: Mixed feelings

Hi Kaisa

Welcome to the forums. I have to say I admire your fortitude but sometimes it’s ok to feel anxious or distressed and this is a great place for letting it out. A breast cancer diagnosis is not easy to handle at the best of times, but with your husband so ill, you must have felt isolated. I was interested in your decision not to take docetaxel. I was told I wasn’t up to handling it and got paclitaxel instead, supposedly a gentler drug. Huh!

For me, a mastectomy was a no-brainer and i’m glad I had it first as it revealed even more damage. I just wanted it gone. Now I’m an advocate of what I call monoboobery. Prostheses and fortress bras that gradually slip to the side of your natural boob, are a pain. The occasional person is transfixed by its absence but that’s their problem. As you imply, you’ve already decided it’s no great loss if your health or life are at stake.

There is a possibility that histology will discover more information that may change the direction of your treatment but you’ve had chemo so it’s less likely. Just don’t take things for granted. Things change quickly in breast cancer world.

Free wigs? I wish. Mine cost me £72 and that was through Macmillan. I wore it about 5 times. I much preferred being bald or wearing a beanie. But you are right. There is lots of support available through hospital links and your breast care team will point you in the right direction.

I won’t say stay positive as I see nothing wrong with feeling a wimp throughout (somehow I doubt that will happen to you) and, if you’re feeling lousy, you don’t need the pressure of positivity. We all find our own ways to cope, as you’ll see on the forums. I will wish you all the best with your mastectomy. Make sure you have a seamfree comfort bra initially, one you can step into and which will give good support. I adapted sports bras as they were tighter and had a broad band that prevented it slipping up towards the healing area. I believe M&S now sell a No Bra which is very comfortable.

Anyway, all the best,

Jan x

Kaisa
Member

Mixed feelings

Hi,

First post here on this Forum. I just want to tell my story. Sorry it's a bit long 🙂

I first noticed a hazelnut sized lump in my breast in March this year. In the meantime my farmer husband had been in hospital for 6 weeks (he was very ill) so my son had to quit his job and he and I had to look after our sheep and cattle (something hubby did by himself). Lambing was about to start and in my head I just couldn't go to a Dr and be diagnosed with cancer and go through treatment as my sheep and cows and son needed me there! Hubby ended up being in hospital for 5 months. In June I finally saw my GP and I was quickly referred to the Breast Screening Unit, appt end of June, by this time my lump had grown to 5cm - like a large plum. The Consultant and Ultra Sound Doctor that saw me both thought it was a cyst and non-cancerous but biopsy proved otherwise. After 11 days wait I got the dreaded phone call.

I had a mixed pattern tumour, Metaplastic Carcinoma Grade 3 Stage 2 (because of its size) plus Herceptin positive. They saw no lymph node involvement. Dr said it was therapeutically challenging but the oncologist and clinical nurse specialist (CNS) would contact me in a few days. Thankfully by this time my husband was home, though recuperating. After this everything happened very fast and as I live 100 miles from the main hospital I've only had telephone contact with the oncologist and CNS.  The oncologist said I needed 3 rounds of chemo and then another scan and the following week I received information (by mail) on the type of drugs I would be given - EC, Docetaxel, Trastuzumab and Pertuzumab plus G-CSF injection. 2 weeks after my diagnosis I started Chemo at the small local hospital.  A nurse informed me about the side effects I would feel when being given the EC, saying I would feel like my face was exploding and I needed to drink iced water (to help prevent mouth ulcers). I think my brain was still in shock as I didn't remember much more after that (when she descriptively put her hand to her a face and said "Whoosh" and "Boof"!). The first dose of EC wasn't bad and my face did not explode (!) and they weren't allowed to have ice so I was just given tap water (!). The next 2 cycles I brought in my own water full of ice cubes. My side effects were smelly diarrhoea, burp-alots, bone pain (from the Filgrastim inj) , sore dry eyes (eye gel helped), feeling dizzy, taste changes, insomia and fatigue, pimples on my scalp, brain fog, numbness in my feet and a few more.

My hair started falling out around day 10, my son cut it down to an inch as my scalp really hurt (no one told me this - got that info from a friend) and the following day we shaved it to about 3mm. I got a lovely wig which I only wore to my treatments.  The loss of hair did not effect me emotionally as I thought it would and I put away all my hair gels, tongs, blow-dryer and sprays and bought scarves and bandanas to cover my naked scalp.

Before my third EC the nurse said I would get Docetaxel the following 3 cycles but after reading all the side effects plus my family's heart history and my own high blood pressure and a very ominous gut-feeling I said NO. After discussion with oncologist (who sounded annoyed with me) and the CNS (lovely person) they spoke with my Consultant (very nice and approachable) who then phoned me. We agreed on my decision - a simple mastectomy. This is getting done mid-October.  I also feel my breast has had it's function - I breast fed my son for 16 months, I am past 60, they're saggy fatty bags (I am overweight) and not a pretty sight (!).  My husband, who has now improved quite a bit, agrees with my decision.

The lump in my breast is larger but I developed a very large swelling after the biopsy and that hasn't really reduced much. This why I feel a full breast removal is better than a partial mastectomy or lumpectomy.

I am sort-of questioning my decision but at the same time thinking that my gut feeling (or intuition) was real as I was very anxious before I spoke with the Drs and Nurse, and I now feel so much more relaxed and happy. I was a Staff Nurse and have read several medical articles on Docetaxel and how it works and I am sure it is a good drug for many but it is not for me. 

Now I am trying to find bras that'll fit me after my mastectomy and be comfy at the same time - read a message on here about it so checking the websites suggested. Also planning to buy a recliner as I am a tummy or side sleeper and worried that I won't be able to sleep on my back after my mastectomy as recommended. Maybe a hammock instead of a bed?! 

I try to remain positive and also thankful that there are researchers and chemists out there that have developed pharmaceutical treatments for various types of cancer and continue to research. Also grateful that the NHS provides so much for us such as free wigs, cancer nurses and routine breast screening. 

Thank you for reading this far xxx