Friday, 24 May 2013

Oncologist Appointment

So our 21st Wedding Anniversary dawned yesterday. In one way I was looking forward to it as I'd planned a surprise night away with OH but on the other I really didn't want to go back to RD&E............

Yes, I know how I've waxed lyrical about how lovely everyone is there but to be honest I'm now getting fed up with it all and suddenly I started to feel nervous and the sweating started and I was all uptight again.

As usual we did the leaving ridiculously early bit and just as well ..... why are SWH digging up all the cats eyes in West Devon and holding us up????
Don't you know who I am.............??? Clearly not............

The plan was to park in the usual carpark 15 minutes away from the hospital, have a bite to eat in the Waitrose cafe ................ DON'T SHOUT ...( I know its against my principles too but all my twitter friend cafe's seem to be the other side of Exeter) and then walk to the Oncology Centre.

Well we did it in good time despite SWH and my gripping the door handle and squeaking at the lack of OH's lane discipline and all the other fucking wankers on the road who scare me to death. As we had arrived before visiting hours we  decided to try the RD&E carparks .............. no problem plenty of spaces.

So what to do for lunch...? try the cafe in the hospital then? NO! first I want to find out where the Oncology Centre is!

Yeah.... so! found it easy peasy.

Went into the first cafe which I suppose was a snack bar with a very small selection of sandwiches, crisps and biscuits and OH said is this ok for you? ..... now I was in the don't talk to me, don't ask me any questions, just do it mode so we had words .... I apologised to the lady behind the counter and then we moved to the next cafe....... our romantic lunch consisted of a houmous and salad roll for me and a tuna melt for OH with coffee.

I'd forgotten how hot the hospital was and along with this and my nerves I felt quite shit and really just wanted to run away......... get a grip .... deep breathes ...just get on with it .....bollocks, bollocks, bollocks.

We were taken to the waiting room by a lovely lady who I presume was a volunteer and who explained to me in very hushed tones what rooms we were passing as Victor Meldrew trailed behind!

Oh joy! after 20 minutes we were told that Dr Goodman was running 50 minutes late and if we needed extra parking time to report to reception...... fantastic this time we were in the hospital. OH was duly despatched to reception.

He returned to report that we would have an extra 1.5 hrs added FOC to our parking.

At 15.30hrs an hour after I should have seen Dr Goodman, Tina the nurse called me in to a consultation room, either she was having a bad day or is normally a miserable cow but she's the first person I've met on this journey who made me feel I was a nuisance.

As you know (or do you?) OH likes to fiddle with things ... if there's a button he'll press it and as we sat waiting he started to pick up things and move around  the room and annoy me as I was still in the don't do anything, I'm getting very uptight mode.

Finally Dr Goodman appeared ...... not at all how I'd expected him to be  ..... bow tie and (I'm sure) dyed hair!! but I liked him instantly! He explained everything in detail and despite being behind with his appointments wasn't in any hurry to get rid of me.

So I've got ER positive bastard cancer which apparently is better than HER2 bastard cancer . ..... mine is the oestrogen fed one which isn't helped by the fact that I'm still having periods ....... yes those periods that started when I was 12 and are still bugging me at 50 despite the fact that I NEVER wanted children ...... no use complaining though its bloody happened!

Tamoxifen is the tablet that I've been prescribed  to piss off this oestrogen but despite having the prescription I'm still looking at it (the possible side effects are not attractive)

I will start radio therapy in a months time although no date has been set. I will also need a CT scan so they can work out where to zap me!
The RT possible side effects don't fill me with joy ..... persistant permanent cough, cracked ribs, sore/cracked skin. Also over time my boob will become smaller and firmer 'isn't that what every woman wants?'  I asked - I know I'll never make it to the stage but this actually cracked him and OH up!!! The downside apparently is that the other boob will stay the same!!

After seeing Dr Goodman we had to wait for Tina to come back with a CT scan appointment ....... still in miserable cow mode she handed me a card and said 'next Thursday 30th Radiotherapy dept'. I actually had to clarify where this was
......... Tina - take it from me love ....if you hate your job for everyones sake please resign and go elsewhere.

My CT scan appointment was changed today to 6th June .................. so now 2 weeks until the next RD&E episode!!!

Tuesday, 21 May 2013

Dear Diary .................

I love stationary shops ...... I can spend hours in them picking up bound note books and journals and stroking them (and marvelling at the price!)

As a teenager I'd spend my hard earned cash on these beautiful journals and write Dear Diary ......... but not a lot else as I had no idea about writing down my feelings despite the fact that Jackie magazine told me that I should be keeping a diary......... on reflection I could have written war and peace ..... living a sheltered life on a farm in a small village, bullied at school and no idea about boys.

So really I should be writing this blog in a journal, however there would be so many crossings out and no one else would get to see it! Yes! I know dairies/journals aren't for public consumption!!

When I started the blog I didn't realise that so many people would view it infact I think I was quite naive about it all. I just felt I had to write about my journey! I also didn't realise that it would write itself!

Yeah I know you're saying what the bloody hell is she going on about.........

Well I'll have an idea about what I'm going to say and then as I start it all goes off at a tangent and suddenly I've written the complete opposite to what I'd planned! Infact tonight it was going to be about my busy week so you knew why I hadn't blogged!

I've got my oncologist appointment this Thursday so hopefully I'll be starting radio therapy soon..... I hope that they give me the start date there and then as I'm getting frustrated again at the not knowing.

Would you believe Thursday is our 21st Wedding Anniversary ....... what a way to celebrate .... bet they don't have a champagne bar at The RD&E either!

If you'd asked me all those years ago what I'd be doing on my 21st Wedding Anniversary ... I'd have never come with the one about the oncology dept!!!

Sometimes life is such a fucking bastard.

Tonight before I logged on to my blog I read someone elses blog ..... she is far younger than me and been through alot more with this bastard cancer than I have but is questioning why she got it .... diet, lifestyle, bad luck ... all the things I've raked over and like her googled it and found the answers contradictory........I felt so helpless as I can't answer her questions but really want to make it all better for her  .... all I can do is  give her a big virtual hug.

Fuck off cancer!

Wednesday, 15 May 2013

My little folder

I can't believe that its two weeks ago today since I got my results and a month on Friday since my operation .......

I had expected to have  an appointment by now to see the oncologist about my radio therapy treatment but I've heard nothing.

Today there was a letter in the post from RD&E which I assumed was the appointment as I ripped it open but it was the consultants letter listing the treatment I've received so far and future treatment plan. This is for me put in my little folder.

Now I haven't mentioned my little folder before but on the day I saw the breast cancer care nurse for my biopsy results she disappeared into a cupboard (literally)and came out with a little ring binder folder and explained the contents, crossing a few things out here and there as some of it was out of date e.g 3-5 day stay in hospital after the op!!. It basically has sections explaining each part of my treatment. I even stupidly said 'oooh I get my own folder to keep, do I?'

Me being me, I left it in my bag for a few days not really wanting to read about all the gory details involved in the treatment of breast cancer or any side effects involved.
No! much easier to bury my head in the sand and ignore it! ............. that way it might go away......yes the bastard cancer might just fuck off and then I wouldn't need the manual!

Well unsurprisingly it didn't go away so I had to read it ....................side effects and all.... scared me shitless!

When I was on the day ward for my op I noticed several ladies had their folders with them. Why? Should I have brought mine with me? No! Don't be silly its just an information folder.

I did have that sinking feeling though for a moment, the one you got at school when everyone else seemed to have got a book/equipment in a lesson and yours was at home because you didn't see the need for it that day!

Whilst sitting waiting to see the consultant for my results 2 weeks ago I saw other ladies had their folders with them and for a moment had that do they know something that I don't feeling. Did I misread the letter?  No don't panic, of course not.

Anyway after giving me my results Mr Ferguson explained that I would get a letter from him listing my  diagnoses, treatment so far and future treatment plan which I could put in my folder.....

So there you are you now know all about my little folder!

Thursday, 9 May 2013

I've cried lots....

Where the fuck do I begin?

I thought after publishing 'My Family' post everything would be all fine and dandy! I would have got rid of frustrations about my family and life would back on an even keel!

Today I was a 'lady that lunches' .......... had a fab catch up with my friend who treated me to lunch. Apart fom seeing each other briefly at 2 markets we needed 5 months talking,  How quickly 2 hours go (bloody car parking again)

Yes.... by the way Cornwall CC I've paid a lot in your carparks three times this week - 2 to eat in Bude at lunch time and 1 to sell my cheese at the farmers market  ..... thanks for the welcome NOT

Anyway had a lush lunch, came home and sorted cheeses for OH to take to Bude Farmers Market... well ...... that sort of happened but then we had a bit of a disagreement ........

Whilst I was picking out the cheese I suddenly burst into tears and had this overwhelming urge for my mum.... for fuck sake why??

When I went back to OH I just clung onto him and sobbed that I wanted my mum ....... what the fuck........ as I blogged before she hasn't been any support and won't come to visit but I just  wanted my mum!

Any way apart from the half dozen tears or so on the cider washed cheeses I mentioned  6 weeks or so ago I haven't cried at all during this bastard cancer thing!

Well until now!

This evening I've just cried and cried and cried .......perhaps this is a release I don't know!

I'm 50, left home at 19 (because I was made to) had a shit time in the police, then forged a career in garden centre management before finding my true vocation ..... cheesemaking ........ now I want my mum ... what the hell is the matter with me ???

Wednesday, 8 May 2013

My Family

Now I first published this post on 8th May 2013 and apologise to those of you that read it then ........

As no, nothing has changed in it.

I actually took it off my blog as my sister sent me a get well card - six weeks after my operation  seemingly as a result of what I'd said.

Great you say ....... you got through!

 No, I'm afraid not. She wrote a critical message which inferred  I was making a mountain out of a mole hill about the lack of communication between us and washing my dirty linen in public.

She'd clearly told my parents as well.

Soooooooo I did what I do best at and came down below the parapet and took the blog post down to avoid any conflict!

Yes I'm a coward and hate conflict. (Except where OH is concerned apparently ...... so he says!!!)

OH was cross that I had (taken the post down) and on reflection I feel I was too hasty but at the time I thought that I'd gone too far and that they'd been hurt by it and perhaps change and call/visit.

On the other hand I though perhaps its me that needs to change ............

Anyway nothing changed .........I met my parents twice in a pub for a total of three and a half hours, and both times it was very strained. They avoided mentioning the bastard cancer and changed the subject when I mentioned it.  (thank goodness for The Ring of Bells!) 

My sister did her duty and phoned briefly on Christmas Day but avoided asking 'how are you?'

My mother left an answer phone message the other day and mentioned the annual Easter visit to Devon in passing ....... of course there was no 'will we see you that week?' or 'are you at a market nearby?'

So bollocks I thought!

I realised nothing has changed so that's why I'm publishing this post again. Its all part of my dance........ which is slowly coming to an end!

I started this post just after Easter and I've thought long and hard about whether I should publish it. I found it cathartic at the time just to write it. To some it might appear that I'm washing my dirty linen in public but I've decided that its my blog, my journey and my family.

I'm sure it seems strange to some that I haven't mentioned my family at all since I started this blog and when I was interviewed by Fitz on Radio Devon he did mention family in a question which I side stepped as I couldn't say that they'd given me support. What could I say?

After I'd been for my second scan and biopsy I phoned my parents who are in their seventies to let them know what was happening, my dad answered the phone which suddenly seemed to become a hot potato and he handed it to my mother 'because she'd like to hear about it'. Now my Dad is having some heart problems and I asked him about his latest hospital visit but he'd already passed the parcel. My mothers first reaction was 'have you told your sister?? ' 'No' why should I tell my sister when nothing has been confirmed and as we don't get on that well there's no point. 'She gets so upset about these things and when your father was last rushed to hospital she was in floods of tears and I had to speak to L. (her 16 year old daughter) She did manage to say she was sorry to hear my news before then telling me about someone she knew who was 73 and asked for a scan which picked up a lump and resulted in 7 weeks of radio therapy , adding that it involves going everyday and you have to go to a hospital that does it. Yes, THANKS Mum thats all I need to hear.

On the day of my diagnosis I phoned her to tell her the shit news and her first question was 'have you phoned your sister?' 'NO'! (I bloody well haven't). We then had the she gets so upset conversation... in the end I said it was probably best that as they were staying in a holiday let together over Easter that she told her after a glass or two!!

Her next call was on my loss of positivity day. OH answered and she did ask how he was and he told her that we were having a bad day, handed the phone to me and she didn't ask how I was but just discussed the weather and what she'd been doing and how a friend who'd had cancer years ago still had problems where her lymph nodes had been removed. THANKS Mum.

On the way back from the hospital after seeing the registrar I phoned her to let her know my operation date and guess what the question was??? ........No I haven't phoned my sister. She then said that she'd phone her that night because although she'd considered not telling her until after I'd had my operation she decided that perhaps although we didn't get on she might like to talk to me about. Yeah right. Oh, and she managed to tell me about someone she knows who had a lump removed and and lymph nodes but then amazed the consultant by being able to lift her arm and move it normally after such a short time blah blah blah. THANKS Mum.

When we got home OH phoned my sister and told her the news and she said she was sorry............ but didn't get upset!

For years every Easter my parents and sister and her family stay in South Devon for a week. We used to drive down and visit but due to work and more recently markets we haven't been able to for sometime. They have never made the trip to us and this year we texted my Dad and niece to let them know that we were 20 miles down the road at a market on easter Sunday, hoping that they'd pop by but got a phone call at lunchtime to say they'd only got the messages due to no signal in S. Devon! and due to the fact that they were out walking and their was a landslip etc etc.  Wouldn't be able to make it.

Today my mother phoned to say they'd just got back from Devon and she thought she'd just phone before unpacking etc. There was no, how are you? how are you feeling? straight into how cold it was in Devon (Hello yes I know we live in Devon) and what they'd been doing all week!

I suppose everyone deals with things differently and I've got used to the fact that my family don't come to visit but I had hoped that they might pop by this week.

Since writing this I have spoken to my mother on several occasions. During one conversation she mentioned that she'd booked to go for breast screening. When I asked if it was because of me, her response was no she'd been thinking about it for the last month. Coincidence then! Other than that its always the same old conversation about the weather or the garden or that they are coming down to S. Devon in May and perhaps we could meet for lunch somewhere!

On one such occasion I snapped and got very angry with her and had a rant. Her response ' we do care about you' and 'we see you when we come to Devon'. We only see your sister at Easter, in August and at half  term .... that will be 3 weeks then! Yeah right..... and you see me for one and a half hours once maybe twice a year in a pub and still making excuses about not coming to stay.

I give up............. perhaps they do care in their odd way but they seem to be in denial about my bastard cancer.

Oh and my sister? No she hasn't been in touch................

So thats my family!

Monday, 6 May 2013

Friends 2

Since this shit has happened I've been overwhelmed by the support I've received from so many people ......

Where do I begin ..... and who do I begin with? in no particular order ....

The traders who have offered to sell the cheese if we can't make a market , who have helped OH set up his pitch (and given him breakfast) and who have sent the most amazing food parcels home with him. And the lovely lady who prays for me ! Thank you!

The customers who have sent lovely e-mails/tweets and given me presents and flowers and sent their good wishes via OH. Thank you!

The fab network of people on twitter and facebook who have supported and encouraged me, sworn at me , bollocked me, made me laugh and sent me personal messages, requested a mention and song on the radio for me and sent me presents and cards! Thank you!

The amazing friends who have turned up to do the  cleaning and gardening and have planned to take leave from work to help during my radio therapy. Bought me books and magazines and sent me dvd's (even if they are shit)  Thank you!

The friends who have asked me out to lunch and / or come round for lunch to keep me sane! Thank you!

.... and my bloody brilliant twitter sisters who have come especially to see me and given me hugs at markets.  (also finding my long lost 'sister' who likes to swear as much and as rudely as me!!!) Thank you

Then there is the most amazing OH in the world who has had to put up with me and the swearing and ranting and all this crap. THANK YOU! 

Thursday, 2 May 2013

Results day

When I was discharged from hospital after my operation I knew that the next trip there would be on 1st May for the results ... just needed the appointment time. The letter finally arrived on Friday plastered with 1st class post but as usual our job sharing muppet postman had sat on it for several days ..... 3 to be precise. Lazy bastards!

So 3pm it was.

As usual we got to Exeter ridiculously early and parked in the carpark 15 minutes walk from RD&E as there was no point in even looking for a space on site. So ridiculously early that we were sitting in the waiting room at 2.40pm. There were several other ladies who I recognised from my operation day but only one who acknowledge me. To be fair the others looked petrified and a smiley me probably didn't help their nerves.

Since my last appointment at this clinic when I saw the registrar and was given my operation date I haven't worried about the results, I don't know why but the cancer nurse was so reassuring and said that as the bastard cancer was so small and that as they hadn't found anything under my arm during the ultrasound it would be  a matter of removing the bastard and some lymph nodes and then radio therapy and then Tamoxifen for 5 years. I believed her.

One by one the other ladies were called in ............... the clock ticked on and at 3.45pm I was still waiting. Then a nurse came out and announced that Mr Ferguson had been called to theatre and so the clinic which was running 30 minutes late and now would be running 45 minutes to an hour late.

Errr no ... by my reckoning it was already running 45 minutes late so with another 45 minutes  we were looking at me being called at 4.30pm.

The carpark ticket was only until 5.10pm so we would be cutting it a bit fine!
A bit of a dilemma then ..... in the end OH asked at reception if they had any idea what time I might be called. Someone went and enquired and apparently I was next on the list but they had no idea when I'd get called. The clock ticked on.

At 4.30pm I told OH he had better go and get another carpark ticket but he refused saying that he needed to be with me for the results.
At 4.40pm we had the same discussion.

At 4.45pm I was called into a consulting room and had to put on a rather fetching poncho affair which opened at the front and wait........
Then the fire alarm went off .............  a nurse came in and said it was ok and that we didn't have to evacuate. Thank god for that!!
The clock ticked on.

At 4.55 we had the discussion again about the carpark by which time it was 'you need to go and get a fucking ticket' and OH refusing saying he would pay the fine.

And then a young Doctor came in to ask a few question, and look at my operation site ........... he really was YTS ...... after a few minutes he removed my dressings, felt my boob and then said that Mr Ferguson would be along soon.....

At 5pm the man himself arrived checked my boob and underarm out and then let me get dressed again.
He then got to the point, the bastard cancer had actually been larger than they thought at 7mm but was succesfully removed along with some healthy tissue and then said the magic words 'its good news it hasn't spread'

Did he just say it hasn't spread? ............... I actually sat there and stared at him trying to take it in, I don't know why because its what I had thought I was going to be told.

Yes the bastard has gone!!!

After he explained the next step would be to see the oncologist to discuss radio therapy and that I would also have to take tamoxifen for the next 5-10 years it was 5.10pm and the carpark ticket had just run out............................

It was obviously our lucky day ...... getting back to the carpark at 5.30pm we hadn't got a ticket! the parking attendant must have knocked off early!!

Trying to get out of Exeter was a nightmare and we ended up going around Cowick bridges a full 360 degrees because some bastard forced OH out of his lane and we  didn't realise the road split! By this time I was so fed up and had a tantrum and cursed and swore at all and sundry ..... yes I know I should have been on top of the world but I hate traffic jams and I just wanted to go home.