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My Journey:first pit stop

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Re: My Journey:first pit stop

Hi Denmay 

 

Thanks for responding. Gosh you have been through the mill it sounds.And yes agreed to come on here and be supported by like individuals with responses and just reading the pages of threads is great.

 

I thankfully am not on any medications re Crohns at the moment..I conveniently finished the oral steroids prednisolone 6 days before my operation single mx, snb & aux nodes random selection. Had iv steroids aftervop for 3 days that was it.

 

Have been pit in the complex case pot now by the oncologist and gastro teams. Have to go mri and have bloods taken to see if I can tolerate a drug an immunosuppressive type...but still some discussion goingvon about me and get the feeling the chemotherapy will take priority over any Crohns medications starting. 

 

Gosh yours is a difficult case then and understandably you must be left feeling anxious without the chemotherapy.

 

Hopefully your next visit wil bring some reassurance that all will be good.

 

I posted in the treatment boards on the chemotherapy thread bit to see if anyone else is crohns and chemo patient . Lets see if anyone else comes forward and they may be or have been in same situation as you and can lendsome support x

 

Take care 

 

Nicki

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Re: My Journey:first pit stop

Hi kurup, no you are definitely not on your own. I to have Crohn's have had it since I was 13ish I'm now 48. Long story cut short I had a bilateral mx in nov and finished 15 rads 2 weeks ago, I was supposed to be having chemo but because of the medication I was on for the crohns the oncologist changed the plan. It's all been very tiring and draining and now I'm at the end of my treatment feeling a bit lost. It's so nice to come on here and get support and help. Sending hugs x
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Re: My Journey:first pit stop

You're certainly not journeying on your own Kurup although your particular journey has had more mountains to climb than some of us. However, you're on your way and have passed several milestones. I've really nothing to say to help you except that we're all here rooting for you and each other and feel free to express your fears, frustrations and joys as and when you feel able. The fact that your nodes haven't been affected is definitely something to cheer about. Have a cyber hug.

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Re: My Journey:first pit stop

Thank you! I have a huge wealth of info that the hospital has given me through the breast care nurse. I believe it was this information that led me to the website and the forum so I know now I am definitely not journeying alone .

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Re: My Journey:first pit stop

Hello Kurup

 

Welcome to the forums.  I'm sorry to hear of your diagnosis, the first few weeks are always difficult when coming to terms with your diagnosis and treatment.
As well as the support you will receive on the forums you might find it helpful to order the BCC resources pack. It has been specifically designed for those newly diagnosed and contains information to help you understand your diagnosis, test results and the various treatments available. If you would like to order a copy just follow the link bellow:-

 http://www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early...

 

You may also like to talk things through with one of the helpline staff, they are there to offer emotional support as well as provide information. The free phone number is 0808 800 6000 and lines are open 9-5 Monday to Friday and 10-2 Saturday.

 

Best wishes

June, moderator

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My Journey:first pit stop

Hi, 

 

3 weeks after surgery....I find myself actually able to come up for air and find time to write this post. Since Friday January 9th 2015, when I presented to GP having found a lump......the speed upon which it has all been dealt with is impressive, but has left me feeling somewhat drowning, floundering, panicking etc etc etc.....I know all that has gone on is for the best aand I have consented to it etc but oh what a rollercoaster minus the thrill.

 

I presented jan 9th, with a lump that I had found again.....I had infact felt the same lump back in October 14 but had assumed it was menstrual cycle related....stupid I know but really didnt think anymore of it....I had often felt lumpy-ish things and had tenderness near period time & during the time I fed all my 3 children (until toddler age). Just about to go abroad with the kids over half term as my husband works/lives abroad...I really didn't think it was anything to worry about. So it was pushed to the back of my mind.

 

Sadly for me I was ill from late October through to beginning of December, nothing connected with the undiagnosed breast CANCER. The illness saw me hospitalised for the best part of a month and I was tested prodded and poked and finally diagnosed with Crohns which is an auto-immune diorder which causes chronic inflammation to the gut, in my case the terminal ileuem in the small intestine. I had to take a course of high dose Steroids 'prednisolone' . Huge amount of painkillers but no Nsaids. I had awful side efects from the steroids which included a huge moonface and 2 stone weight gain. So although I left hospital stabilized .... I was not in a great place emotionally, I was deeply depressed at how I looked, I was exhausted beyond belief which is the nature of crohns due to how you absorb food as it makes you lack b12/folates. I left hospital on November 30th / 14. My husband had returned home whilst I was hospitalised to look after our 3 children, he left for abroad as soon as I was out as his company had been kind to allow him some paid leave back in the UK. Five days after leaving hospital my brother (aged just 49 years) died. Could anything else go wrong for us as a family was my immediate thought amongst al that we were dealing with. Despite being ill and needing to rest I had to organise the funeral, and this was at a distance too of some 400 miles...but I managed it all on top of Crohns illness, the grief of losing my older brother, and without husband for the greater part as he was not able to take leave until the 14th December. We buried my brother 4 days later a week before Christmas.

 

We struggled through Christmas & New Year, made the best of it with having 3 kids. But I was exhausted both mentally and physically. I made an appointment to see my GP as I felt so depressed, he was unaware of all that had happened since my Crohns diagnosis and thankfully prescribed some anti depressants and sorted out sessions for a counsellor.....I am stil waiting for those 'rural practice'!!!!

 

Husband returned to Middle East.......rollercoaster still moving pretty fast ....then I found that lump again......101 friends assured me that it would be a cyst ..... as did my GP....when I presented on January 9th ...surely 'him upstairs' as he became affectionately knowm could not be dealing me another blow on top of everything else.

 

The 2 week appointment office rang mon January 12 to tell me I had a Mammogram booked for 9.30 January 14th ....... I couldn't believe how quick it was all happening. And bizarrely how convenient the appointment was I live almost 50 miles from my hospital, but everyday drop my two girls off at a college in the next town so I just tootled on over after dropping the off. Hardest part was finding the Breast Unit when I got there, being just 45 I have never been for any screening and it wasn't my local hospital.

 

I had the mammogram, didnt wait long, then chatted to other women in the waiting room, passing the time of day and laughing because they had all noticed this car in the car park with about 6" of snow on the roof and bonnet, yes that was mine, even with a 50 mile drive it hadnt shifted or melted. It al seamed a bit surreal, I was beginning to feel a bit daunted and kind of had this feeling in the back of my mind that maybe this wasn't a cyst after all, but then again it could still be, the woman beside me assured me that the ultra sound was routine and that would be because it will assist with the draining of the cyst. My name was called and then I trotted along with all my clothes in the plastic basket to the radiologist and ultrasound. He was introduced and my immediate thought was gosh how Cornish his name sounded which led to a discussion about us both coming from the same village in Cornwall. It became all the more surreal.

 

I had the biopsies done, many....and yes for the mom ent it hurt. He discussed through the mammograms and I got a sense then that they were deeply suspicious. Even then like a right numpty, and with my own medical background, I asked ' so its definitely not a cyst then?' I guess at this stage I was clutching at straws and beginning to chunder on nervously to myself that 'him upstairs' cant count...why oh why oh why me, why now and why us .... I think I was in denial of what I could guess was the inevitable outcome of the biopsies.

 

I saw the consultant immediately after and the breast care nurse specialist and they basically talked me through what would happen on the basis of RESULTS. Which usually take a week to ren days ... I left somewhat shell shocked and then had to drive back to collect my children...it must have been the most awful drive I had ever had.....and that was before RESULTS.

 

Husband was informed and he immediately came home on friday 16th January. His company beginning to think.I must be a walling medical disaster.

 

On January 21 a week after biopsy I returned with hubby for results. It was CANCER, ductal invasive, a large >5cm grade 3 and it would have to be a mastectomy due to its size to be sure of good margins etc

 

I consented there and then for left breast mastectomy to take place 6 days after on 27th January.

 

I was operated on at 5pm until 7.30pm that Tuesday. I went down to theatre on my own and I remember nothing but tears as I new it would a matter of moments before I was to lose a part of me that gave me my identity, made me a woman, and what had fed and nurtured my 3 wonderful children, and what had attracted my husband amongst many other things I might add to me. Tears rolling down my face and so much racing through my mind I actually delayed the anaesthetic....my heart rate went through the roof and it took a while a quite a bit of sedative through my hand to settle. But before I knew it I had come around in recovery.

 

I stayed in hospital for 4 days after , which was not so bad as I had my own room.  Alternatively a 100 mile round trip which really could not have been done with the state I was in and drains plus they needed to keep an eye on me due to the Crohns......I had also iv steroids for 3 days due to only just finishing a course prior to admission for the breast CANCER.

 

I also learned that I was her2 neg but ER Positive so would eventally take hormone therapy but in my case due to fibroids and a possible hysterectomy due to this and Crohns Disease that would all ned to be discussed at the multi disciplinary meeting as my case was complex with the other disease processes to consider.

 

I came back to clinic a week after for dressings removal, nurse and consultant very pleased with scar etc .... to me it was still sore and resembled complete disfigurement. It looked like a hot dog bap sideways and the skin and sewlling under my arm madethe elephant man look attractive.

 

I returned a week after that, 2 weeks after surgery 11th Feb for the results once more. I apparently had 2 Grade 3 tumours removed in the mastectomy, they each measured over 3 & over 2.5 so with clearance as they were next door neighbours but not related/connected they were getting on for over 6cm, so a lumpectomy would never have been an option.

 

The 3 sentinel nodes, and 11 auxiliary nodes were all clear.... it was this news that broke me finally and I guess was what I had wanted to hear. I cried and cried and guess I was relieved as it was the best possible news out of a bad situation.

 

I am to now be referred on to oncology as will due to size, grade and age (45) require chemotherapy. I am also a  'complex' case because of Crohns as my immune system / digestive system is already compromised.

 

I am naturally now 3 weeks and 2 days on from surgery sitting waiting for oncology...appointment is 23rd feb .... and frightened.

 

I know not what the future holds in terms of longevity,  what complications chemo etc hold for me due to Crohns....its bad enough coming to terms with orfinary side efects....and worst of all I have to cope with this pretty much on my own due to the fact that my husband has to return to work abroad before my first cycle of chemo. Someone has to keep a roof over our heads in both the uk and abroad...we have already made huge changes to accomodate the lack of income over the last few months. 

 

So there is the beginning of my journey. Never intended to waffle on forso long but it has been therapeutic if not tearful....and painful ( I typed on a small kindle keyboard) .

 

Good bye for now, a newbie.