waiting for surgery

I have been to see my surgeon at the Brompton Hospital, Amy came with me and Kevin very kindly took us and collected us in the car which was lovely. Mr Ladas was very nice and we saw the evil twins on the scan which was a bit scary, one is sort of hanging on the edge of the lung and the other one is quite near a largish blood vessel. He hopes he can just (just!) cut them out but it might mean that I lose one of the 3 lobes my lung has - no problem as the other 2 lobes eventually expand the fill the space up - clever isn't it this body stuff? He explained that I would hopefully have a more rapid recovery if I didn't have the drain in my pelvis so we have agreed to have the surgery at the end of July when he returns from his holiday.

The good news is that I am told the drain can finally come out after 10 weeks which will leave me a lot more comfortable in the lower regions! I have to arrange that with St. Hell's which as you can imagine is not going smoothly, still, if I haven't heard from them by Monday I will get my GP on the case - I'd like to enjoy some time without the drain in before I have the further 2 inserted after the operation.

So, that's where I am at the moment - on the way but with no actual dates for anything yet.

I have been going through a very depressing few days lately, but am entitled to have days like that, I can't be a happy bunny all the time. My mood was so much lifted by 2 cards that one of the sunday school groups had made me and then sent through the post and also by a beaufiful earrings and necklace set that the church choir bought me. It totally overwhelmed me and I spent a long time crying, but that got a lot out of my system as well so that was good.

love to everyone xxx

lots to tel!

Since I last posted, I have been a resident at the Marsden for 6 days having IV anti-biotics. The treatment itself was very short just 3 times a day but the rest was good and with my new portable DVD player I watched loads of films which was lovely. The aim was to try to clear this wretched abscess up so that further treatment can proceed.

It seems at last to be working and the amount draining is now very small indeed.

I had an appt yesterday with Mr Bett at St Helier and was very focused and clear about what I wanted as well obviously as what was being suggested. The good news is that surgery for the evil twins can go ahead despite the fact that I still have the drain in place, although I guess this has to be confirmed by my surgeon at the Brompton who I am seeing next week, and this surgery is top priority. I never thought I would say it but I am so looking forward to major surgery!!! I'm not sure what the follow up treatment will be but I just hope that Mr Ladas gets rid of the evil twins and doesn't leave any of their offspring behind. I had a feeling that Mr Bett would say....lets wait and see blah-de-blah.... and I wasn't going to accept that but the consultation went well and I was satisfied with all the answers to the pre-prepared questions I had taken with me (how organised am I?!).

I went to church on Sunday for the first time in ages and it was so lovely to see everyone and to get such a warm welcome; a time of prayer has renewed my spirit and determination to get on with life so when I went into work this week I have got so much done and solved quite a few problems that nobody else appeared to know the answers to. I got a lovely email from a colleague who told me to get the hospital to sort me out quick as they need me back full time.

Not much other news..... we now have a new kitten called Janet who actually belongs to Amy & Kevin. She is very cute but plagues poor Fudge who eventually gives her a big 'wop' with his paw, she goes flying but then bounces back (as if on springs) for more. As he is 11 years old it's a bit like putting a toddler in an old peoples home and he's not impressed!

Mummy is really poorly at the moment and eventually gave in today and I took her the doctors this morning. She got her first ever course of anti-biotics which is not bad when you are over 80 - the doctor wanted to know what her secret was, I commented that she obviously hasn't passed the secret onto me as I almost rattle with the amount of tablets I take per day.

Will post again next week after I have been to the Brompton Hospital. xxxxxx

Still no sign of any chemo

Went to the Marsden yesterday, it was quite depressing really. The collection of fluid in my pelvis has still not dried up and stopped draining so the drain stays in for a while longer. This not good news as it's beginning to be quite sore and sitting on pipes and plastic connections of pipes is not comfy! I actually met Prof. Cunningham himself yesterday ( I hope that was not an indication of gravity of the situation), he was so nice but basically everything is on hold until this problem is sorted. I now have to see my surgeon Mr Bett to get his view on a way forward (which will not be at St Helier!) but he cannot see me today at his clinic and is away next week, so the thought is that I maybe go to Fulham Marsden to see a surgeon up there. All this is driving me crazy as I can have no chemo to zap the evil twins and I know that the smaller one of the two has already grown. It's all very frightening and whilst I may put on a brave face I can promise you it's an illusion - a bit like the swan that looks so graceful above water abut is paddling like the clappers underneath!!

I feel totally helpless and frustrated that I am going nowhere at the moment - lets hope for some more positive news soon. xx

Finally home

I can hardly believe that a month has gone by since the last post on my blog, and what a month it has been - I will try to condense it but I am known to waffle!!!

After the drain had been put in at St Helier (Hell-ier more like!) it got progressively more painful and I ended up in St Hell's A&E where believe it or not they just sent me home with liquid morphine for the pain. It sounds silly but it wasn't until we got home that we realised that no-one had actually examined me - not looked at the drain site nor what was discharging into the bag.......unbelievable I hear you say! The upshot of that was that 2 days later I actually couldn't move and we had to call 999 for help. It was a nightmare and it was only with extra morphine that I was able to get downstairs and into the ambulance and guess where to ... St Hell's again, this was because this was where the drain was put in. Moving along a few days...... the drain fell out when the nurse was changing the dressing so guess what - more morphine, this time on a pump which eventually came home with me after 2 weeks. It was awful, I was in over Easter, I had scary Mary opposite me who hadn't a clue where she was and thought the hospital gown was a new lemon dress, Audrey who continually wanted to be taken to the toilet despite having a catheter in , the chineese lady (see previous blog!), a lady who thought she had been stolen from the bathroom and a man who thought he was Jesus (trust me, he wasn't). It was possibly the worst 2 weeks I have ever had, add all this with a row with a consulant and only sandwiches for supper with soup that the person serving it said he " thought it could be asparagus" it made for a pretty miserable time softened only by all my visitors.

Home at last but not feeling great so guess what - 4 days later I'm back in hospital, this time the Marsden; different kettle of fish altogether, but still hospital and away from home. A second drain was inserted and trust me this was even more painful that the last one, this one was done at the Chelsea & Westminster Hosp and I was taken by hosp transport. This was fine going there but after the procedure, and feeling very sore I had to wait nearly 3 hours for an ambulance to take me back to the Marsden; the journey back was in the rush hour so you can imagine, it took ages. By the time we got back it was nearly 8pm and I had missed lunch and supper, I actually think I slept most of the following day. Having had such 'colourful' bed mates in St Hell's I was not to be disappointed at the Marsden - Lynn who was convinced there was an old hag in the doorway each night and who insisted on calling me Belinda, and Joan who was certainly a sandwich short of a picnic and thought the phsychiatrist was round the bend........HELP!!!!!!!!!

I finally came home last Tuesday, the drain is still in and I have a nurse in each day to monitor it. I have a clinic appoitment at the Marsden next Tuesday when they will decide if the drain can come out and the I can finally get going on the chemotherapy. It really has been a very tough time emotionally as well as physically for me and of course for friends and family (especially Amy) who have taken the brunt of my moaning and crying, but enough..... all that is now behind me and I am getting ready for the next chapter. It's lovely to be home and although I don't have much strength back yet, simple things like hanging out the washing give me great pleasure (sad but true!).

I am again very touched by all the emails and cards I have had, my blog seems to be the success I had hoped and saves me repeating things over and over; there is a link to it on our church website which is great as I find going to church a bit too emotional so I know everyone is fairly up to date with what's going on. I actually went into work on Friday and have arranged that I can do certain bits from home and they are giving me a laptop which will enable me to use all the files stored on my work computer - all too technical for me but that will be super as my work is such an integral part of me.

Well, sorry this was such a long posting but I think all is up to date now - Tricia, I'm so sorry I missed you on the 21st; Liz, thank you for keeping everyone at church informed; Janet, glad the move went ok; Carol & Dave, thank you for the flowers. Hope no-one else is offended if I've not named them but just thank you to everyone, lets all think positive so that I can get going with the wretched chemo and get this whole ordeal over with xxxxxxxxxxx

The Chinese lady

Went into St Helier on Monday where they inserted a drain into my buttock to get to the abscess/pocket of fluid. It was done under a CT scan and was very painful ~ I've really had enough of people looking at my bottom! They have had to leave the drain in so I now have a pipe which is attached to a drainage bag which is strapped to my thigh so it can drain all the fluid away - very attractive!- and I am finding it hard to sit or lie down so am feeling very sorry for myself at the moment. My chemo has again been postponed until 18th April to allow this latest thing to heal, I expect it will stay in for about 10 days to 2 weeks.

There's always a funny and this is a good one....... after I had had the procedure 3 doctors came to check I was ok to be discharged, one of them came back and asked if he could ask me some questions about the procedure, which was fine. Prior to that, a Chinese lady had been admitted and was in the next bed to me, she was a sandwich short of a picnic and was very strange. Anyway, whilst this doctor was having a look at my bum she lifts up the curtain, carefully drawn between her and me and says (you have to imagine the Chinese accent!) "young doctor, when you finished I need word with you" She gets a birds eye view up my bottom and is asked to let go of the curtain; the doctor says "actually I am not a doctor" (he lied!) and told her to let go of the curtain again; she replies " oh, you no doctor? but you velly lovely can I see you anyway!). By this time he and I are almost helpless, but she did let go of the curtain and normality was resumed!!!! I thought you'd like that one.

Poor Amy is off work with bronchitis so we make a poorly pair at the moment, but it's nice for me to have some company other than the cat during the day.

Am going to try to have a lie down and get some zzz's, they seem to have escaped me last night, so bye for now xxx

Oh deary me!

You remember my last blog mentioned about draining the abccess well.................. I got a phone call at work last Monday at about 10.30am from the Marsden asking if I could make my way to St Helier as they could do the drainage procedure today. It's apparently going to be done under local anaesthetic and takes about ½ hour; so I duely arrived and reported to casualty as instructed. After 1½ hours waiting, I was then called in to see the triage nurse to whom I explained againthat I had a bed waiting for me etc etc. They called up to the day unit who said that was fine so up I went to the 3rd floor. When I got there the sister said she was sorry but they hadn't actually got a bed for me so would I mind waiting in the day room. Whilst inthere they took my bloods and then a 3rd year doctor came and asked me so many questions almost down to how many veruccas I had had as a child! Eventually they found me a bed and I got into the top fashion gown that hospitals provide and sat and waited. (You may see a pattern of waiting emerging here) To cut a long story of waiting short, they told me at about 3.45 that the doctor who would be doing the procedure didn't know I was coming and had no space to see me until Monday of next week!!!!!!!!!!!!!!!!!!!

To say I was a bit disgruntled would be putting it mildly, but at the end of the day, if they couldn't do it, there was nothing I could do about it, so I came home. The Marsden were spitting feathers when I told them and I seemed to be piggy in the middle. I think the worst bit was when I told the registrar that it meant putting my chem back again, she said the 'in the great scheme of things a delay in chemo wouldn't really matter' I pointed out that it wasn't her that had cancer and a delay meant a great deal to me ( the evil twins {my tumours} have to die!). Anyway, the upshot of all of this is that I am booked in to go back to St Helier on Monday to have the drainage done but this time I have to go at 8.30am and have to have nil by mouth since midnight and I will be in overnight! I really wonder if they know what they are doing, I cetainly had not expected to be kept in overnight but knowing St Helier, I'll probably be home tby lunchtime!

My chemo has now be changed to next Wednesday so hopefully things will then be back on track ~ it's all been quite unsettling and I really don't need the stress of it all.

I collected my wig yesterday and took it to my hairdresser who thought it was fab and will cut it to suit me slightly better. The back is fine but it's a bit puffy on top for my liking, but Robert said it will be no problem to chip chop it so I feel a bit better about it now. He cut my hair and made it look so good yesterday even if I don't have it for maybe much longer, I still need it to look nice and I think he did the best cut ever. I felt so good I had to go and do some retail therapy in M&S in their sale!

Am now just off to work so will post again next week sometime. xxxxx

Another set back

Well, I wondered how long it would be before I developed another infection and hey presto it was last week! I ended up in the Marsden on Friday with a temp of 104 and finally came out yesterday evening. I am now feeling fine thank goodness. They have finally decided that the infection is caused by a pocket of fluid, like an abcess, which never drains completely and therefore keeps building up and making me feel so poorly - I have to say that is what I have been telling them each time, so it was quite nice to hear the doctor actually voicing my thoughts entirely. The plan now is to drain the abcess surgically which hopefully will then dry up completely and will also have the effect of not leaking through the bowel wall where it hasn't healed together and the end result is that the bowel should then heal itself!......... we shall see. I am unable to resume my chemotherapy until this is done so am expecting to have the procedure at the beginning of next week so that I can have my chemo on Friday of next week. So everything is a bit up in the air at the moment but I am enjoying feeling well, especially with the weather being so nice at present.

Along with everything else, I had an ingrowing toenail removed this afternoon - the local anaesthetic is still working so no pain yet but I am prepared for it this evening. I was a bit surprised as I thought the doctor was just going to look at it but instead he did what was necessary (I didn't look!) and now I have a very attractive white 'dolly' on my big toe, so no chance of getting any shoes on yet, just as well the weather is good.

Spent a lovely morning chatting to my friend Liz and catching up on the news from the church birthday weekend which of course I missed having been in hospital. The services on Sunday appear to have been fantastic with some real 'tingly' hymns, I so wish I could have been part of it all.

Claire came with me last week to chose my wig, which we did; having said that, I was feeling so ill I think she could have put an Alice band with piggy ears on me and I'd have said it looked good! Liz has offered me her daughter's Mickey Mouse ears from Disney if I feel like a laugh - I might even take her up on that offer - bald head with big black mouse ears, what do you think?! Calire assured me the wig looked fine and I know she wouldn't let me get anything that didn't look ok. The lady who fitted me was not the most sympathetic at the Marsden and kept telling what I couldn't do with it like move the parting over and I couldn't cut it - I thought, well it's my wig, bought and paid for I shall do what I want! I shall take it my hairdresser Robert, who has promised to style it etc for me so 'yarboo sucks' to her!!!!! It did feel very funny on, a bit like a swimming hat, so I have a feeling I shall not be wearing it much and I haven't lost any hair yet anyway so it's not an issue but I am living up to my Queens Guide motto - Be Prepared.

Thank you again for all the thoughts, prayers and cards etc. Will write again soon. xxxxx