Tubthumping

Disclaimer: Tubthumping is by Chumbawumba

Ok.   So an eventful few months.  To say the least.

After the breast oncologist saw me, I was told to mention some calcification around my bladder (which was possibly the reason I was having trouble passing water) to my colitis specialist when I saw him.  I did, and the fact that my tummy had been a bit funny for a month or so.  He immediately referred me for a flexisig (camera/biopsy) the next week. Two days later I was asked to attend the clinic the following day.  I crossed my fingers the the consultant just wanted me to start more medication for the colitis as I'd been taken off some in January.  So my husband and I went along quite cheerfully.  Got called in to see a Nurse also sitting in the room (deja vu, anyone?).  The consultant then broke the news; there was a malignant ulceration by my rectum (horrible word, that). Literally a year and a week after my breast cancer diagnosis.  Marvellous.

My immediate reaction was "There goes our holiday next month!" followed by "Sod that, I'm not doing it all again!  I've just gone back to work full time!"  We got taken in to a room by the nurse, and given leaflets etc etc and a plan- stoma, chemo, radiotherapy, tests to see how it's all worked.  Then was the fun task of telling people.  Joyous.

The following day, my in-laws came down for the weekend, which was just what I needed.  A day out in the sun followed by a barbeque in the back garden (after my initial worries about my husband and father-in-law being let loose with fire were relieved slightly by my mother-in-law keeping an eye on them). We sat outside until 10 that evening, listening to music and have a couple of glasses of rose.  It was a wonderfully lovely, peaceful, sociable evening.  Just what I needed.

I went back to work the following week as I didn't want to just sit around moping waiting for my operation date.  Which, believe it or not, was the week before we were due to go on holiday to France with my in  laws.  Work, again, were wonderful.  Just letting me do as much or as little as I could, and really looking after me.  One colleague in particular has been great, having also had an ileostomy, giving me helpful hints and tips on coping.  I worked up until the Saturday before my op, as my in laws were coming down again to do our garden for us.  That last day was an odd one.  I ended up going home early as I had got myself into a state.  My legs were aching (something I've had for the best part of a year) so I couldn't get comfortable and everything just hit me; I ended up sobbing on my work-mum's shoulder.  So they made me tea (always a good thing for me) and sent me home to curl up with hubs in front of Come Dine With Me.

My operation was the following Thursday.  All went well and I was eating the next day.  I had to stay in for just over a week so that the stoma nurses could be sure I coped with it on my own.  While I was in there, I was anxious to get the weeing situation sorted.  The nurses were repeatedly requesting the Urology doctors to come and see me. One doctor (not a specialist) who came to see me (who was all of 20) helpfully told me to relax.  Wow. Why hadn't I thought of that for four months???  It took me threatening to make an official complaint for them to come to see me. I felt I should be prioritised given that I was die to start chemotherapy and was worrying about infections.  I was then referred to the specialist nurse who prescribed self catherisation.  Not fun but does the job when necessary.

The day I was due to go home, a team of urologists came to see me, casually mentioning that I should get my breast expander changed so that they could do an MRI and check for MS. Great.  Cheers.  After they had gone, I went into the bathroom to change my stoma (named Princess Consuela- 'Friends' fans should get it!) and found bile (although I didn't know it at the time) coming out.  I immediately burst into tears until one of the lovely ward nurses came in and reassured me that bile was normal in the mornings when you haven't eaten.  She was furious about what the Dr had said, without having a nurse present, and said I would have displayed more symptoms.  It's most likely to be where the tumour is taking up space.  She complained to the Head Nurse and the surgeon who had done the op came round and reiterated the point, and said I could go home. Yay!! It had been a very emotional week (one of the student nurses had accidently put my cuddly toy given to me by my best friend in the laundry with the bedding, which had upset me a lot).

I got used to having the stoma, and looking after it myself. It helped having a designated Stoma nurse, who had given me her mobile number and visited weekly, initially, to check up on me.  I saw my new oncologist who went over everything and said I should start chemo within the next couple of weeks.  I soon got given a date for Friday of the following week.

However, on the Monday, disaster struck.  I had had company all day but when I was sat on my own, I felt something untoward in my stoma bag.  So I started to take it off.  I thought my insides were falling out and went into full on  panic mode.  I couldn't get hold of my nurse as she was with a patient, and I couldn't get hold of my husband.  He rang me back about 10 minutes later and told me to ring 999, who sent an ambulance round.  They took me to Worthing A&E (despite me asking for Brighton) and my husband and mum met me there.  While I was in the ambulance, my nurse rang me back and said it sounded like a prolapse which, while fairly uncommon, wasn't unheard of and not a disaster.  After spending 6 hrs in A&E, where all they did was poke about a bit and give me an ECG, I got sent home and told to come back if I was ill.

I spent the next day on the sofa once my nurse came to see me and check everything was as ok as it could be.  However, 1 0'clock the following morning, I working up really not feeling well and started being sick. So we rang 111 who advised A&E again.  Luckily my mum was staying and was able to take us to Brighton, who were brilliant.  I got seen very quickly- given IV anti sickness drugs and morphine (which I repeatedly stated was awesome as I immediately felt so much better and went to sleep).  I was given a saline solution for dehydration (which explained the throwing up), an X-Ray to check for blockages and allowed to sleep.  I went home about 4 the following afternoon with reassurances that it wouldn't interfere with starting chemo.  In fact, as the bag had to be changed a couple of times due to leakages, my husband saw it and thought it all looked significantly smaller if back to normal.

I was, however, not happy about being by myself in the immediate future so we stayed with my mum for the rest of the week while my husband was at work.  Chemo went ahead as planned, and I had a PICC line put in the day before as part of the chemo is a 48 hour infusion.  I've just had my second one so, fingers crossed, all is going to plan.

There have been some nice things too; a family Barbeque at my husband's Grandma's; my aunt and cousins visiting from Australia; my lovely lovely friends sending me a foot spa and smellies to go with it; visits, phone calls and messages from lots of lovely people.

I don't know how it's going to pan out (you never do with these things) but I'm trying to stay positive (helped by further sessions with the Macmillan Councillor) hence the Blog title.  Tubthumping- I get knocked down, but I get up again. And they're never going to keep me down.

The New Normal

So it's a long time between February, when I wrote my last entry, to now.  Yet it's gone quickly in a weird way.

The first thing that happened after my last effort was radiotherapy.  If I said lying there being blasted with radiation was surprisingly comfortable, would you judge me?  Because they treat such a specific area, you have to be in precisely the right position and every bit of you is propped up and supported.  The only issue I had with this was the fact that they would leave music playing- I find it very difficult not to bop when I like a song.  Saying that, it made the twenty minutes (every day for three weeks) go more quickly.

They tell you that it makes you tired.  I thought- "More than chemo? Whatever!" I should have believed them; I have never felt so constantly exhausted in my life.  I'd go out for a change of scene but was ready to go home and sleep for the rest of the day after a couple of hours.  The staff were so amazingly nice though, especially as my birthday fell in the middle of the treatment (that day, it was first thing in the morning so we had the rest of the day to ourselves; cinema, fish and chips, one of my favourite tv programmes whilst building the Iron Man lego set my husband got me!)

When I was having trouble looking at my scar, one of the nurses gently pointed out to me that, while it was something that had to be done when I'm ready, it would help me come to terms with everything.  And the longer I left it, the harder it would be.  And anyway, it looked fine- better than a lot they had seen.  I looked (albeit briefly) the next morning, and she was right.  Its not that great looking, but it could be worse.

They also said that, once the treatment finished, I might feel vulnerable as everything stops all of a sudden.  I was given the number of the Macmillan Councillors that work in the same building.  Within hours of getting home after my last treatment, I realised, again, that they were right.  I have had four sessions now and can honestly say that it is another example of the amazing work done by Macmillan!!

I gradually built my strength up but, when seeing the oncologist in May, I was thrown back into, for want of a better word, turmoil.  I mentioned that I'd been having trouble (again, for want of a better word) weeing.  She immediately said that it could be the result of something sinister on my spine effecting messages getting down my nervous system.  It could also be cystitis (immediately ruled out after tests) or something else, but best to have an MRI scan to make sure.  When I went for my scan, however, it turned out that because of the temporary expander they put in during my op, I couldn't have an MRI.  Which was a learning curve for the team, as they haven't used this particular one very much.

So the next step was a ct scan of my spine.  This took ages to come through  (I won't lie- I was not impressed by the organisational skills of the ct department) but eventually I had it. Five days later, I had a phonecall from my Oncologist saying that it had come back clear, although she wanted to run a couple more tests to be sure. So I had a full body ct, an ultrasound and a blood test which all came back clear as well, although they did discover what was described as a calcified barnacle pressing on my bladder which could well be the cause of the irritation.  Also, the lady doing the ultrasound told me that everything in my lady area looked normal for someone of my age which made me cry with relief!!

So within the space of a few days, the black cloud that had been hanging over me dissipated pretty much entirely.  I hadn't realised how much it had been hanging over me until it suddenly wasn't!  I knew I had times when I was particularly down, but I thought for the most part I had kept it under wraps.  Now I feel about twenty pounds lighter!!

That's not to say that it's been all negative this past few months.  We had our second wedding anniversary which we celebrated by going to the Harry Potter film studios (I was running around like a five year old, I was so excited), we've had two trips to stay with my husband's family to celebrate some birthdays, a weekend at a country club for a wedding... so there have been some brilliant moments.

The best thing though, has been going back to work.  I started off doing two hours a day, and gradually built up from there.  My colleagues have been brilliant, made me feel so comfortable going back and accepting if I got tired and needed to sit down, and can't do heavy lifting.  It is so good to get back to normal, or a version of it.  I'm not a patient now- I'm just me, at work.

It's obvious that the last year is going to have a lasting effect on me, physically and mentally.  It has made me appreciate the wonderful friends and family that I have, and without sounding cliche, made me try not to sweat the small stuff.

 I get lots of comments about my hair- it suits me/ do I like it? but I know it doesn't feel like 'me'.  However, I'm not sure if my long blonde hair I used to have would either.  It's a case in point as to how I've been effected- I'm not exactly how I used to be but I've yet to discover exactly how I've changed.  In the meantime, I've got plenty to look forward to- a holiday, a wedding... it's all good!!  So perhaps the new normal won't be so bad after all!!

And on it goes...

It's surprisingly difficult deciding how to start a blog entry at this point.  A fair bit has gone on since my last entry at the beginning of December.  I had Christmas and New Year off, which was great.  We had a lovely weekend in December with my In-Laws (in which we all went to my work Christmas meal).  Christmas was with my family and New Year was a quiet one at home (which suits me as I love being in our little house!) We also had my best friend, who was over from Australia, come to visit on New Years Day, which was fantastic as it's been a long time since we were able to sit watching films, gossiping and drinking gallons of tea!!

However, come mid January, it got busier, for want of a better word!  Mastectomy Time!  My prediction in my entry was right; the nearer it got, the more nervous I became.  So one Monday Morning, my mum drove myself and my husband to the hospital where I was given my own little room (yay- much more chance of sleeping), some rather attractive DVT socks and a gown.  The Surgeon appeared and drew lots of marks on me and not long after that I was taken down. It was very surreal, being wheeled down the corridor to the operating theater with loads of people in pink scrubs looking at me.  Then I was given the anesthetic and the next thing I knew I was waking up in recovery feeling like I'd done about 20 rounds with Mike Tyson.  The rest of the day was a haze of painkillers and me being barely able to say more than one word at a time (mainly 'Hurts!') and gripping my husband's hand whenever I had a wave of pain. At one point they tried to change my canula as they thought the one I had in wasn't working, but the doctor soon gave up as it was obvious he was really hurting me and my husband was making it clear he was unimpressed with that.  I spent that evening watching films before dozing off (one of my Christmas presents was an mp3 player to put some of the Harry Potters on so I could block out hospital noises, this was a godsend).  I gradually felt better, though I was still in pain. I was allowed to go home on the Thursday and we went to stay at my Mum's bungalow.  The district nurses came in over the weekend to check my drain, which was removed the following Monday.  Overall, though, it wasn't as scary as I had thought it was going to be. I haven't looked at it yet, but hopefully soon I'll feel up to doing so!

We're back home now, and have a couple of weeks before Radiotherapy starts.  We had a stressful couple of days as due to a few misunderstandings, I was told I wouldn't be having it, although it had always been on the cards and reconstruction was delayed for that reason.  My Mum and my (wonderful) Macmillan Nurse both got on the case and it has now been sorted.  It does mean I'll have it on my Birthday but never mind.  I can have a party later!! 

In the mean time, I've been touched by peoples' kindness and generosity.  I've had such lovely and thoughtful presents; a Hogwarts letter (I'm off- hehe), a Devon Cream Tea, an amazing picture drawn by my very talented friend, magazines, jewellery, chocolates as well as so many lovely cards! The silver lining of this whole thing is that it's made me realise how many lovely people I have in my life!!

Another positive is that my hair is growing back- not long until it looks like a deliberate short style!  I also have eyebrows and lashes, and had to shave my legs last weekend.  I never thought I'd be excited about having to do that!!  

So that's everything (I think) in a nutshell so far.  Hopefully my next entry will be preparing to go back to work!!