Diagnosed with BC in FEb 2014 I had my chemo first then just before mastectomy I was diagnosed with TB, once treatment started I had my Mastectomy in Sep 2014 then radiotherapy until Nov 2014. Returned to work Feb 2015 on a pt med cert. Ft since May 2015
Waited for reconstruction (thought I was on waiting list but I had been missed!) and finally got it sorted and went forward with DIEP reconstruction on 13 October 2016. Just hours after the long surgery (9hours) I was back in as the flow from the breast had failed. Surgeon connected to another vein and I was back in HDU 3 hours later. By the following morning it was clear things were not going well, my resting heart beat was very high, I remember leeches being used to clear the blood collecting in the flap, ECg at beside and at one point I could see the defibrillator being brought in. Once stabilised I went back for my 3rd operation where the surgeons tried to reattach to another vein but after 4 hours the flap was deemed unviable.
traumatic time indeed but alas it was not to end there. My speech was slurred and I had weakness on my left side so ct scan was carried out. The house doctor was brutally frank and said worst case scenario you’ve either had a stroke or you have secondary brain cancer. Direct to say the least!
So 2 ct scans Later 1 with contrast and 2 MRIs (1 with contrast which lasted 90 minutes, not an easy task to lie flat with the fresh abdominal scars!) All showed as normal.
my tongue and uvula has atrophy to the left and I have difficulty clearing saliva and food. My tongue has fasticulations. The discharge letter for my doctor stated I had chronic CN XII and possibly VII/V palsy. Lumbar puncture has been arranged for 10th Nov and speech therapy on 11th Nov.
find it difficult to explain how I’m feeling. Glad that I survived the process and got a tummy tuck in the process! (Grasping at straws here) But emotional drained by the whole experience, struggling to find the resilience for the lumbar puncture and scared of the possible outcomes. Struggling with keeping my game face on, responding to texts and im’s are a nightmare as I try to respond positively. Disappointed I haven’t seen my BF since before my op. My husband has been a star, he’s had do much to cope with. Just want to scream!!!
Wow. You’ve had a really tough, **bleep**ty, f**cking journey.
I don’t think there’s an awful lot I can say to make you feel better but thought I’d let you know that I’ve heard you, scream away, you’re not on your own.
hi sassie,
what a nightmare! & so sorry to hear of your experience. please scream & rant on hear as much as you want to.
sending you & your husband loads of hugs
ann xxx
Hi Sassie. I’m so sorry to hear what a horrible time you’re having. I hope they get to the bottom of what’s going on and get your treatment sorted out quickly. Thinking of you and sending hugs xx
Omg Sassie I can’t believe what you’ve been through. Our journey is very similar in timing, my mastectomy was also September 2014 and I finally had my reconstruction on 3rd October. I had TUG using my thigh and have had problems with infection in my leg but it’s now nearly healed.
Whilst I was in hospital I witnessed another patient who had had a diep reconstruction. She had a reaction and ended up having to have a tracheotomy to save her life. I know these cases are few but I can’t begin to imagine how you must be feeling. Sometimes it’s ok to not put on a brave face. I wrote a blog that gave an honest account of my chemo treatment and linked it to my Facebook page which helped my friends and family know exactly how I was feeling.
i really do wish you a speedy recovery and if ever you need to rant or chat please feel free to contact me. X
Firstly many thanks to those that responded, it was great to get support and understanding.
I had had my lumbar puncture on Wednesday, of course it didn’t go to plan as I couldn’t lie on my side due to the scars on my tummy and breast. It was conducted with me sitting up and the junior doctor on the first attempt hitting bone and the second was too high and was touching nerves thankfully with 2 injections of local anaesthesia. The registrar was then called, more anaesthetic then he managed to get the needle in with some digging around. It then took 30 minutes to get enough fluid to fill the 4 vials.
In total the process took an hour.
once home I went to bed with a headache after taking some painkillers and slept for 3 hours. Yesterday started well with mild headaches which I controlled with a mixture of painkillers, lying down and coke for the caffeine. As the day progressed the headache became more severe and today I have had to lie down in bed or on the sofa. Getting up is a nightmare the pain is mainly at the back of the head, neck and shoulders. Paracetamol or ibuprofen is not touching the sides. Have started using dihydrocodeine during the day ( I had managed to decrease usage as the pain from surgery was disappating). My back is still very tender. I’m a wreck.
how do I know if this is normal? If I phone nhs24 they’re just going to refer me to hospital and that will be a mare on a Friday evening!
I thought I had been through it, my heart goes out to you,I truly hope you are now on the mend. Lets try to make you feel better, I had DCIS HIgh grade breast cancer, two months later diagnosed with oral cancer, my cousin died aged 30 as result of breast and oral cancer, common sense told me I had it in my genes, BRACA was not around. The NHS hospital insisted I had lumpectomy, they got the guide wire stuck in me, I acquired MRSA which delayed mastectomy, breast surgeon said I had only 3-4 months to get the cancer out of my breast so they surgically removed the infection - which cost us £2500! had oral cancer surgery 3 times, - we sold our home to pay for it all. Surgeon left the filling tube in me and the implant deflated, we had moved house because had sold it to release equity to pay, went to local hospital to see a lady who was described as one of the best! She replaced the painful implants which implants that are HUGE and more painfull than the deflated implants, I am tiny and almost tip over with these enormous implants. Today I received a letter telling me the CCG will only pay for the implants to be removed and I am expected to have nothing! Yep I am expected to have no replacement implants! We cannot sell our home again otherwise we will be homeless as this rate