- Here is my story…visible lump found on 16/10/15, no pain or symptoms but stupidly ignored for a couple of weeks due to fear as have experienced cancer and all it means 12 years previously. Subconsciously I knew it wasn’t good as my risk due to previous treatment meant I was at high risk but I buried my head until common sense prevailed. After a mammogram,ultrasound, a clear MRI scan and needle biopsy 2 consultants both said it was a harmless cyst. Went back for results on 4/12/15 ( myself and partners 22ND year anniversary might I add ) fully expected good news and we were in good spirits planning our anniversary evening only to be told it was BC and was a shock to them…next came the barrage of info and was advised I had to have mastectomy as radiotherapy wasn’t an option as previously had to chest area and chemo alone wouldn’t be sufficient …next were the options of flat, implants and tram and diep reconstruction . Opted for diep was shown pics etc but upon consultation with surgeon and full explanation decided it was too extreme and a risk . I am 38 with 3 children , a job I love and lead a busy,hectic life .I’m in a relationship with the man of my dreams for life and have his love and support but felt that it was too much with regards to risk, recovery ,being out of action and I felt not fair on my loved ones to cope with that much too. Decided that double mastectomy was a must and requested implants only to be told implants were out due to previous radiotherapy to chest. Apparently they wouldn’t remove healthy tissue so only one sided mastectomy would be done. After a battle (and an irate and highly supportive other half arguing with them ) then being forced to see a bloody hospital psychologist, a double mastectomy was agreed upon and it was discovered that previous radiotherapy was only to middle of chest so implants were an option!!! Obviously warned it wasn’t a guarantee implants would work but was over the moon. No more fear of future breast cancer and shorter op with shorter recovery = less downtime for family and work and journey to normality speeded up. Op booked for 21/1/16 shortly before this a hernia was found in stomach had CT scan and ultrasound and they decided to leave it thank god!! Op went well came out of recovery with both implants and 4 unwelcome drains. Went home following day with 3 drains and a huge chest mainly due to cotton wool bandage ? was sore and uncomfortable and drains made everything difficult I couldn’t shower and trying to sleep was a bloody nightmare especially sleeping next to a man that moves a lot both worried he would knock them or pull them out whilst sleeping!!! I got through and it didn’t stop me getting about, my drains went on many a trip out!!! Had 2ND drain removed within days but 3 and 4 were awkward and levels erratic . 3rd finally removed but breast kept refilling so had to be drained 3 times then 4th drain broke grrrrrr. Along with this drama and twice weekly trips to hospital my left breast refused to heal and a PICO dressing was put on. From there it was a twice weekly occurrence of checking and the surgeon deciding if I would need to be operated on again to aid healing and to ensure chemo could commence within the 8 weeks of op. Actually had to prepare for op twice and even turned up and booked on ward only to be examined and there was a slight improvement…we ran from ward that day so relieved and bloody happy. Was terrified every time of the constant rollercoaster and losing implant to have to go flat on one side. Pico was on for 5 weeks in total . Unable to shower properly for 6 weeks. Spent children’s inheritance on baby wipes ? Then found a lump in my neck which was hell all over again. Had ultrasound and biopsy but good news no spread IE no secondary cancer another reprieve!!! Today I started chemo. Weekly Taxol and 3 weekly herceptin. Had cold cap, mitts and boots ? thought I would post this as when googled no-one else seems to have had all 3 at same time maybe they are sane ha ha!!! After having a double mastectomy and already having lost my hair to cancer before I wanted to feel normal. I already felt unattractive and less of a female and felt insecure with how my partner would view me even after reassurance had to fight to get it due to funding and time constraints on ward . The mitts and boots were given due to previous nerve damage and to limit the increase of it. I also posted as I wanted to help others and assure them it can be done having all 3 cold treatments together. Will be honest it’s bloody, bloody hard, hardest thing I’ve done, but I’m now one session down with 11 to go ? the pain is in all 3 at first for the first 20 mins of all being on but then alternates between them there will be times you want to scream, punch things and pull them off but don’t .Keep pushing its a temporary thing not a lifetime thing and the benefits if they do work far outweigh it if you don’t try you will never know …blankets marginally help as do lots of hot drinks but I found myself needing toilet and not being able to walk so forced to ask for a commode with my darling partner having to don his nurses outfit ? and wipe me. Lost all dignity there ?? I also found rocking helps ( I’m perfectly sane btw ) I took 2 paracetamol beforehand but they didn’t touch the pain keep calm. Don’t wear mascara unless waterproof as it ended up on my face. Buy a wide toothed comb and soft type scrunchies if needed for afterward and future as you are advised to be gentle and only wash hair twice a week!!! Eat as much as you can. Helps to keep you warm .I had soup and sandwiches. Sugary snacks helped a lot!!! Get them to place gauze under chin strap as its bloody uncomfortable and you find yourself moving it a lot I spent most of the time looking like an overweight chipmunk as it was squeezing my face together ? Laugh at yourself, as hard as it can be it helps to see the funny side as yes you will look a bit of a prat with it all on ha ha . I didn’t wash my hair for 2 days before and be prepared to look a greasy mess after too as you have conditioner smeared all over and are forced to do a walk of shame out of the hospital looking incredibly dirty!!! Anything worth having is a fight and you learn to realise you are stronger than you think . Go in with the right frame of mind a fighting spirit is a must forget everything else that is not good in your life. Expect the worst and then nothing will knock you if anyone wants to get in touch for advice or just support please do so…11 more to go …PUSH!!! Will post updates if I have more advice or tips and of course how it all works out ?
I am cold capping too Sarah. It’s absolute hell but I am determined to see it through. I find that it gets better the longer it’s on, but it is a huge relief when it’s off. Hair v thin but still there. It sounds as if you have had one hell of a time. I have had double mx too but no recon yet. Hopefully in the future. Good luck with the rest of your treatment.
You are right. We are stronger than we think and will get through.
Claire xxx
Thanks for replying Claire. Hope all is well how far through are you? And are you having mitts and boots too? Hope you are near the end and your recon happens soon take care Sarah x x
What on earth are mitts and boots please??? I’m starting chemo 6/4 and hope to cold cap. Not heard of the rest!! Sarah
Hi Sarah mitts and boots work the same way as the cold cap but instead of protecting your hair they are meant to protect your fingers and toes from nerve damage from the chemo I already have damage from previous treatment so hopefully it will stop it from getting worse x hope this helped x Sarah x
Hi Sarah thank you, maybe that’s why I’ve not been offered them as have never had previous treatment. Thank you, it did help, enjoy the rest of the weekend, Sarah xx