Apologies for this very late post of the day but better late than never hey! And if you don’t read it tonight then at least you will have something nice to read on your way to work to brighten up those Monday morning blues. It’s so late that my editing team have all gone to bed so if there are any mistakes the complaints department is just me I’m afraid lol.
So I slept upstairs last night as planned, I tried to sleep lying down but that instantly sent my back into a spasm of extreme pain. 5ml of morphine later and I sleep sitting upright, I slept for almost 5 hours, wow. So up and awake at 5 am. My usual routine of feeding the ungrateful rescued cat, Tia and Molly Moo has been so all over the place for weeks that I think they have just given up on me and turn up when they like.
So drug taking starts at 6 am, with stomach protectors, just enough time for those important two coffees and a least two fags, lovely. So there I am sat in my Dream Machine Chair and it suddenly hits me, gosh I feel so well. Compared to yesterday and the awful 7 1/2 hours to get the pain under control, I have woken with background pain but that’s normal but what is different is that I feel so healthy. This is massive for me as I can’t believe that the patch of Fentanyl has made so much of a difference, it’s just amazing. What a pity that they don’t like to give them out due to the cost, can you believe that? Thank goodness for the Ian Rennie nurses who ensured I was given it. The best thing about them is that they will not cause me to be constipated unlike the 24 hour morphine which I was on that caused the constipation.
Now we have to talk poo for I moment, sorry but warts and all remember. Last week I went to A&E to check that there was no medical reason why I can’t go to the loo. After X rays it was confirmed that there was no medical reason at all but the results showed a massive build up of poo which just wasn’t moving. No wonder I couldn’t eat as there is no room left.
I have taken enough laxatives to shift a complete bowel blockage with no luck and then I started doing enemas at home for both for the small and all of the upper bowel and had some movement but just not enough. Dr Weaver gave me some special laxatives and he said that they take time to build up in the system but they were good.
So drugs taken I was enjoying my now two yoghurts for breakfast when I suddenly had stomach cramps and the need to go to the loo, wow I thought after weeks of no movement is this it! Now the problem that I now face is that I have very little stomach muscles and I am not used to pushing at all. So first go to the loo, not too bad and was happy what I had passed. I had at last gone and thought that would be it. Well without too much detail it went on and on and on and on. As soon as I thought it was over it started again. I was exhausted. I was so happy that mom and I had a mini celebration coffee and a fag, well I just had the fag but I was so pleased. I thought that would be all of it for the day, as there couldn’t be any more, could there?
So the day was planned for a short trip out to Homebase to get the last bits for Daisy Den and then off to Staples so that Steve could send out the Calendar sales ordered online in time for delivery as planned. So off we set. Homebase went well as did the trip to M&S for their wonderful stuffing for the roast pork dinner planned for tea. However in M&S I needed the loo again and had to go to the staff loo as I was so desperate, not a nice position to be in, it’s just embarrassing but the staff were very friendly and opened their staff toilets for me. We got to Staples and whilst their website advertises the Calendar envelopes, did the have any? No sadly they didn’t. So more expensive envelopes purchased but you lot are worth it However again I needed the loo, we asked a young assistant if there were disabled loos and he just said “No sorry” so we found a female assistant who again let me use the staff room facilities, thank you to this lady as I was so desperate again and so embarrassed. So here is Steve with your deliveries which have already been posted at the main sorting office this evening and they will be with you all on Tuesday morning as promised. Uncle Peter I will post yours tomorrow Air Mail to Australia
Then I had a donation from a very good and precious friend of mine Louise Lowe from school who has donated a massive £500 Beating Bowel Cancer, Wow I was blown away by her generous gift, now apologies for the grainy photo but Louise is on the left of me and Sam Bennett is just there for her good looks Anyway thank you so much Louise, your donation is appreciated so much.
I then had an email from James at HO with some photos of the conference evening where Jo and Region 9 presented me with all my goodies. This picture came from Jo this morning with a card to say that the picture completed the gifts, wow and thank you Jo and to all of you on Region 9 and my BHS Family.
And finally for today’s happy post here are Rita’s candles as ever and prayers said. Thank you Rita and everyone else who prayers for me as it is appreciated so much
Catch you all tomorrow and love to you all xx
Oh and I forgot to say that Mary from our local BHS Store came round for coffee and cake today, it was so lovely to see her. She has the High Wycombe 50 Calendars plus the promotional pack so the Calendars will be on sale from tomorrow if I know Mary she will be on it first thing tomorrow, so happy shopping to all you High Wycombe supporters
Plus I made another two sales today which I will add to the Just Giving page now. One sold to Mary and the other to the District Nurses who came today to give me my antibiotic treatment and was so impressed with them that she had to buy one
Okay that really is it and catch you all tomorrow xx
Again sorry for the delay in today’s post. Lets start with the good stuff first shall we. So today the Calendars finally arrived, I was so excited to see the finished product. I’m so proud of what Steve has achieved. The quality is amazing. He has opened the online shop on the website, you just have to click on the photo to access it. The orders placed today and thank you for those will be posted out to you on Monday 1st class, you won’t be disappointed trust me.
I made my first sales and have sold 6, that’s £42 I’m so proud that the fund raising has gone over £6k and when these hit our Golden Stores I know the product when seen will fly out. Again this couldn’t have been achieved without BHS exclusively funding the printing. What an amazing company I work for, I’m truly blessed.
So last night after a day of just background pain in my back which I’m used to and class it as a 2 or 3 out of the scale of 10 all nurses use. I got ready to sleep in my Dream Machine Chair. I was so tired and ready for sleep. For no reason at all my back went into extreme pain which I just couldn’t control. After an hour I had to take 5ml of oral morphine as I just couldn’t cope and I didn’t understand why. With morphine inside me. I slept all through the night, yes a miracle for me I know but when I woke at 6 am I was again in so much pain. I have to follow a daily routine of drug taking starting with tummy protectors and then I can’t take anything for an hour. So those taken I would now class my pain at an 8 and I’m scared, I feel like I’m going to faint, I’m all alone and feel like I’m going to pass out with the pain. I take two paracetamol, as this doesn’t effect the tummy protector as that’s for any Nurofen due to the high dosage that I take. I manage to get to the back door to get some fresh air and and I have to keep asking myself my name, trying to keep conscious. I moved into Steve’s office chair and with the back support it helps. Mom wakes at 7, I’m so pleased to see her. So now I can start taking stronger drugs and mom helps me. Nothing takes the extreme pain away, still rating it as an 8 and as the morning wears on I get even more into trouble where I would rate the pain as a 9. I take another 5ml of oral morphine and it doesn’t touch the pain at all. Steve called the Ian Rennie nurses team. I take another 5ml of oral morphine and again it didn’t touch the pain. Ian Rennie were with me with 10 minutes, the wonderful Suzanne. She didn’t need to ask how I was she could tell as could my poor loved ones that I was in trouble. She called the emergency Doctor to get some injectable medicine in me other than that I knew I may need to go back into hospital, The District nurses came in to do their treatment to me but by now I couldn’t even speak and don’t even remember the treatment being done. I just sat completely devoid of life, trapped in extreme pain. It took 7 1/2 hours for that pain to start to come down. I have been given a Fentanyl patch which should kick in tonight at around 10 pm. From 3 pm onwards I was able to function. My poor loved ones again so worried about me and I just couldn’t hide it from them at all. It was just awful for us all.
So where am I now? Well I’m okay and I enjoyed watching Strictly Come Dancing, wasn’t Peter Andrei amazing? He deserved to be top of the leader board
Rita as it’s Sunday tomorrow please say prayers for my loved ones. Karen and for Frankie as ever. All the wonderful Ian Rennie nurses out there who as a charity were so wonderful for me today.
And finally I had a wonderful present from Jo at Region 9, the final gift from all their presents from conference. It’s a Daisy hand stitched picture which is just so beautiful. Now Daisy Den is now completely full. As much as I love all the special presents being sent to me, no more gifts otherwise I will need to get an extension, lol. Love to you all and I’ll post more if I can tomorrow. xx
So sorry that it’s late tonight but after a very big meal for me tonight I just fell asleep and I have woke up feeling so much better for it.
So this morning I didn’t feel well at all and Steve was very concerned as I just couldn’t focus or keep my eyes open. I really didn’t feel well at all. My day continued to improve though and this evening I do feel so much better :-).
Mom returned to us at midday and I’m so happy to have her back with us all.
So many special things have happened today that have made me so happy. Firstly I had two very special gifts for Daisy Den from two very special friends, thank you both so much.
The new front room furniture will arrive next week and so after the longest time we can at least all sit together as a family and have quality curfew time, whatever we want that to be but we can all be together and that’s so important to me.
Parcels have been delivered for our new bed and I just can’t wait for this to be fitted so that I can sleep again with my Mr Wonderful.
The Calendars arrived and OMG I am so proud of what Steve has achieved. They are so professional looking and I even made my first two sales to Sue our new cleaner, who has been a life changing addition to our team here.
So this post is again short but sweet as I am so happy that everything is finally coming together here.
My final thanks is to my BHS family who have been so supportive and made things like the calendar possible and the changes our my home.
And final final thanks to my Angel Rita and everyone else who is praying for me and continuing to support me through this journey, I can’t thank you enough.
So this morning after another sleepless night I really didn’t feel very well at all, everything was such an effort. I called mom this thing and she was worried but she is back down tomorrow and I’m looking forward to that. I had a call from the hospital to say that I wasn’t doing as well as I should be in terms of fighting off this infection and whilst the intravenous drugs being given to me at home every day were due to stop tomorrow I have to continue the treatment for another week. This will possibly delay me starting chemo again but I have to be strong enough to be able to cope with that so I have to be guided by the experts.
Just before treatment started the wonderful Emma from my BHS family in Kingston came to see me. She stayed and helped me set up Daisy Den, well we made a bloody good start. It was so lovely to be with her again and we had a lovely time.
Now these are only the first photos and I need shelves for all my Daisy Den gifts but at least it’s the first chance for you to see inside Daisy Den. It’s so warm and cosy in there and I’m going to love it. Molly Moo already does LOL.
Now tomorrow we will have our allocation of the Calendars arriving, I’m so excited as Steve and I haven’t seen them yet. I’m so proud of what Steve has achieved through this and we will potentially raise £14,000 for Beating Bowel Cancer. I also have to thank my BHS Family as without them funding the print run the profit to the charity would have been reduced so thank you so much BHS XX
So that’s you lot up to date for today, again sorry it’s short but it’s sweet and I need to rest. Love to you all xx
Okay so here we go with the full background of ‘Warts and All’ first. This is going to be a very long post so you have been warned, no reading in the loo or in the bath!
Although I was discharged from hospital on 27th October, Rebecca and I on the 29th October returned via a taxi to the A&E department. I was in so much pain in my back due to the size of my tummy which has been caused by the lymphedema that I need to know if there is any medical reason why I can’t go to the toilet. X-rays were taken which left me in total bits as they insisted that I lie on my back and I can’t move. The pain is unbearable and I come out of the department sobbing as Rebecca knows how much pain that I would be in as they made me lie still on my back. The results showed that there was no medical reason why I couldn’t pass any bowel movements however the X-ray did show a mass of excrement that needed to be moved. I was glad there was no medical reason why I couldn’t go and so it was up to me to make this happen. We returned home via taxi and that cost us £60 that evening but it was quicker than waiting for an ambulance.
I talk about the £60 as this comes out of the awarded PIP money which the Ian Reenie nurses organised for me. Its a benefit which is awarded to any terminally ill people with less than a year to live. It is not means tested and I have been given the maximum amount of £139 per week. The taxi money was what this benefit was designed for, supportive expenditure that you would not normally have to pay out on a weekly basis. This money has also funded the cleaner that I spoke about in yesterday’s post. Now the cost of the cleaner will take all of the weekly amount awarded but it’s worth it to reduce the stress to my loved ones and it enables me to focus on looking after myself the right way this time to ensure I am as healthy as possible.
As you know, I was lucky enough to be able to release some money from a pension fund due to my diagnosis. This has enabled us to do some work to make our home more comfortable for me. Daisy Den and the Hot Tub you all know about. I have also helped Steve buy a car as if I died we would not have a family car, as my car is a company car. I brought new furniture for the front room, this furniture reclines and is essential as it means that we can all be together as a family in our front room. I’ve ordered myself a new phone as my current phone is broken. Garden work to our home so that I can get around it safely. New patio doors for in my end of days room. New furniture for my end of days room. New office furniture for Steve as he works from home so much now and it is his responsibility to comply to with H&S. A new bed has been gifted to us by the BHS SOS fund. Finally a new fire to complete the front room.
Here are some of the photos of those changes taking place:
A few months ago I was given a prognosis of 18 months from diagnosis when we knew that the first chemo treatment hadn’t worked. More recently Dr Weaver was asked to write a report regarding my prognosis for our life insurance company. He is now saying that on the balance of prognosis that if the new chemo works and that the extra KRAS treatment layered on top of the chemo treatment also works that my prognosis may now be 2 -3 years. It is great to know that not only do they think my prognosis of life expectancy has or will improve and that as long as the cancer is not in my vital organs I could actually after completing treatment be one of the 9% that actually survive and beat Bowel Cancer.
My decision to take a sick note is massive for me as I have continued to work apart from the following dates. Signed off for one week on 7th Feb, signed off for two weeks from 11th Feb and finally signed off for 4-6 weeks on 28th March. Apart from these dates previous to that I didn’t have a sickness issue at work and I want to continue to work and contribute to the company that I love to work for and is so important to me. So I sent Amanda Taylor in HR this email to explain the plan to her.
It was lovely to talk to you today and here follows the plans proposed for the next two months:
Chemo starts on 18th November until then I have an enforced break from treatment to ensure that I am able to cope with cycle 5 of the planned 12.
If I can cope with the normal chemo then at some date they will administer the extra KRASS chemo which could extend my life by up to 30%
Last date of intravenous treatment at home is 5th November. Then no more treatment at home at all until we start again on 18th November, following suitable blood tests.
I have attached a PDF file of a sick note which covers me from 03/11/2015 for two months and then I will be in contact as regards my health and the possibility of returning and commencing with project work at home.
I will be taking a long weekend break somewhere before my treatment starts again as a short holiday and I’m telling you this as I want to be open and honest with you all.
I will post the original sick note into yourself tomorrow so that you have it for my file.
Please could you inform Kingston BHS of the sick note so that my wages can be processed correctly.
I hope that this is acceptable and that this email completes our paper trail for your records.
I would just like to add a massive thank you for your support and understanding throughout this difficult time.
This PDF is a copy of the doctors sick note
So yesterday morning I had my bloods taken as well as intravenous treatment. As this treatment is due to finish on 5th November I also had a home visit from my Doctor who brought me my sick note, she checked all of my vital signs, which were all fine. The District nurses arranged a prescription for the enema which I was comfortable to do myself as the pain I am in is putting pressure on my already swollen tummy due to the lymphedema and if I can open my bowels then we believe this will relieve some of that pressure plus I have to be able to control my bowels on a daily basis. The enema was successful and finally I was able to move my bowels.
3rd November, yesterday I had already contacted my mom to inform her of what was going on and that I would call her later. She was worried that I had left this so late, so update with her complete I was just about to return to Steve when the phone rang. It was a doctor who had received the results of my bloods and that he wanted to come and see me, this was about 10 pm. My bloods were showing that I had a very low potassium level. He arrived and took all my vital tests again, blood pressure etc and asked if I was short of breath. I explained that I do struggle to walk around the house as I am weak on my right leg due to the lymphedema but this hasn’t changed. He said that the levels were so dangerously low that I may be at risk from a heart attack which would be fatal. Steve had to go before midnight to a pharmacy to collect the potassium prescription and that I must take straight away. He said that the blood tests would be run again tomorrow to see if the bloods changed or if the levels had returned to normal and that in the event of any symptoms of accelerated heart rate or shortness of breath I was to call 999 immediately. So after putting down the phone to my mom saying everything was fine I was back to a potential life threatening prognosis. After taking the potassium within about 1/2 hour I did actually feel better within myself. It’s now 3.30 pm today and I have just received news from the Doctors that my potassium levels are completely normal and I am not at risk of dying at any moment! How much stress can I take? Plus I was advised to stop taking the prescription.
This morning I had a delivery and I had no clue what it was. It turned out to be a present from all of my BHS family the HR team at Head Office just to cheer me up and here are the presents.
Last night prior to the doctors call I was arranging the planned break to one of the nominated stores to do a weekend away as pre arranged with BHS. Honesty is very important to me and we now have a delivery date to my house of the Calendars for this Friday, 6th November. All 10 stores will now receive their full promotional packs by Tuesday 10th November, confirmed today by Leanne Sinclair at Beating Bowel Cancer and the Calendars will be on sale in the 10 nominated stores by Wednesday 11th November. The plan for the 11th store, is for me visit the Isle of Wight. The hotel and ferry are booked. The photo opportunity, signing of the calendar my Mrs October herself will be a fantastic promotional opportunity for BHS as a company and the Calendar sales. So it’s all systems go with the planned visit to the Isle of Wight, the agreed treatment break but with BHS aware that I am going away, and will be continuing with my blog.
I’ve also just had confirmation that the new bed will arrive on 25th November and the new fire will be installed on 27th November.
So there you have it complete transparency and honesty with everyone.
Final thanks to Rita who upon hearing all the good news has gone to church to say prayers of thanks. Thank you my Angel.
Okay so hearing about the experience of the past two weeks and seeing it is completely different, so here we go with the experience of the horror on Ward 10.
Firstly this noise went on all night long
Seeing how I am now in terms of the Lymphedema and the state that I was in whilst in hospital, again very different to see.
Just to cheer you up
Now this post maybe short in terms of length but it’s all about the experience. The sounds that went on throughout the night that meant that apart from the bed I couldn’t actually sleep. The visual look of my body and what state I’ve been left in.
I hope that the short post will again back up the need for me to withdraw from you all for those few days.
I have also been now signed of sick for a period of two months from work with a review period so that if fit and well whilst on Chemo I may be able to commence project work at home. If not then this sick period will be extended.
Whilst on my treatment break I will be taking a long weekend break with my Mr Wonderful and you never know I may turn up in a store near you
If Chemo is going well then at some point the extra KRAS gene funded treatment will be given and this could extend my prognosis by up to 2 years.
When I say that I’m doing things properly this time, I mean that I will take responsibility for my recovery and for once I’m putting myself and my loved ones first. A cleaner started today and this will mean that neither me nor my mom nor Rebecca will have that extra pressure and we will be taking more of those picking daisy moments when we are together as a family.
Internet orders for food shopping will be placed weekly so that this takes away the stress to Steve of yet another job that he was doing.
Changes to our home are nearly complete so that I can manage the best that I can at home whilst recovering. Pictures to follow.
I will be following up the estimated delivery times of the Calendars tomorrow and I will post up when they will be available at the chosen 11 BHS Stores.
I will continue to raise awareness about Bowel Cancer with your help and support by sharing my blog but not at the expense of my health any more.
I will attend Parliament and continue to challenge the unequal funding between Scotland England and Wales. Do whatever charity work I can do, to include interviews, press and any other form of media but again only if it isn’t putting my health at risk in any way at all.
So there you are ‘Wart’s and All’ as normal and that was always the deal with my blog. I hope that you will now understand the whole picture.
My BHS Family have been so supportive and I am so pleased when I read the comments left on my blog on how you now see BHS in a completely different light as the fantastic company that I know them to be and love them for everything that they have done for me, for fund raising and for the massive amount of love that they have given me. So many people facing this awful disease lose their homes or are dismissed as part of the process of employment rights, for example a contractor would just have their contract ended and this happens to people. I could have been facing all of this, losing my home but instead I consider myself very blessed.
The next iBook will be free as this was never about making money for us. Your words via the comments pages will form part of that book, I have already had fantastic reviews left on iBooks regarding this so thank you for leaving your reviews.
And finally thank you to you all who have sent me extra soft furnishing presents for Daisy Den. Karen Brindle AKA Potter sent me today the most amazing hand made bunting which is just beautiful, again photos to follow when it’s up. And I have also received a handmade Daisy Den sign that is already in place, photos to follow.
And really really finally I must thank my Angel Rita Jackson who championed me for the SOS fund that has provided the NASA state of the art bed that will change my life with Steve and again this has been given to me by my BHS family. Sometimes there are just never the words to say thank you but I am as is my family eternally gratful for what my BHS Family have done for me.
Well hello to you all and I’m so sorry that I haven’t been blogging but I’m back and ready to go.
I have missed you all and I just want to thank you for all your comments and good wishes. I just needed some time to get my head around the last week or two. What a whirlwind of emotions and trauma we have had. My poor loved ones have suffered so much and seen me so ill. We went on Friday the day of the Abseil from at 10.30 to you can go home at midday to a Doctor coming to see me at 12 o’clock and saying forget cancer if this infection and the abcesses are around your heart you won’t survive two weeks, emergency scans followed and I’ve got the all clear. How do you process all of that?
Sepsis is awful and I was paralysed, I couldn’t move my body at all. Being in hospital was just terrible and I didn’t sleep at all whilst in there, or eat.
I love being at home with my loved ones and behind all the trauma they have been working so hard on Daisy Den and so that I’m happy when I get home. I am so blessed, I’ve cried so much, been through so much and yet at every turn there just seems to be a lucky angel looking after me. I think I was within hours of death with sepsis and when Steve called the Ambulance. Apparently our house was full of medical team within 4 minutes and can you imagine Steve standing and looking at all of this this unfold. I was out of it and as they suffer you don’t remember just flashbacks. The stress and worry day after day has taken it’s toll on us all.
So where am I now? Well grateful to be at home. The whole experience has left me in a bit of a sad state, I’m bruised and battered physically but that will get better every day. I’m left with a very attractive set of legs. My right leg has lymphedema which is where lymph nodes are removed and your body is fighting an infection it can swell up, very sexy and I have to wear a special stocking all day. I can only fit into my UGG boots so it’s a good job winter is here. The nurses come in everyday and I’m hooked up to a drip of antibiotics and then that’s it for treatment at home until 6th November.
Steve and I saw the Oncologist on Friday and we have a plan. They need me to be fit and well enough before we start Chemo again so I get a treatment break which I’m both happy and concerned about as the longer I’m not on chemo the risk of the cancer getting into my organs is higher however they are the experts and they say if I start chemo again too early I may get sick again and I don’t want that. So the plan is that I start chemo again on Wednesday 18th November and this will be cycle 5. That’s the normal chemo and then they will layer the extra chemo on top of that. The KRAS test being returned to me as having the Wild type of cancer which is good for me as I can have the extra treatment that may extend my life by up to 30% and not good for Richard and Rebecca as I have left them with the potential to have the inherited gene. Now I have told them that annual paid for tests is the only way to go. They have to be aware of the risk to them and their children. This is no bad thing actually as we all take are health for granted too much and think bad shit will never happen to us but it does and if you are aware of the risks you have control.
Now I’ve got to say how overwhelmed I have been by my BHS Family. They are paying for me to have a ultimate, state of the art Superbed which will mean that after months of not being able sleep with my Mr Wonderful I will be able to. How on earth do you ever say thank you for that? The price is unbelievable for a bed but like the hot tub it’s a life changing piece of equipment for me and Steve.
The other thing that they have done is to agree to distribute the Calendars to all stores from our house as we were going to have to do this ourselves to save you all the cost. How fantastic is that? Plus they have agreed to Merry Hill being an extra store so this takes all the pressure off my mom. How wonderful is my BHS family? They are just so fantastic and I can’t begin the thank them enough, sometimes there are no words big enough.
So I’m back to you all as I get so much love and support from you all, and it’s slowly but carefully fightback time
I’ll be blogging again every day, don’t you worry with photos of Daisy Den. Thank you all for your love and good wishes.
Firstly apologies for the lack of my posts over the past few days. I was allowed home just yesterday and I can’t explain how happy I am to be home after such an horrific time in hospital and the roller-coaster of the past 8 days.
I appreciate the concern and love from you all but I need to just focus on getting well again and so after today’s post I will aim to be back blogging again by the weekend. I’m sure you will all appreciate my need for doing this.
Please share this update on Facebook as I will appreciate it so much. I will get through all of your emails and good wishes but I’m sure that you can appreciate that looking at an email in box of over 200 is just too much for me to cope with at the moment.
Please don’t contact me for a least two/three days I just need to just focus on getting well again, thank you.
Okay so I have been overwhelmed again by the support from my BHS Family and to stop my mom’s house becoming a distribution centre, BHS have agreed for an extra store to stock the Calendar and this will be in Merry Hill (Sorry Kaye as this maybe the first time you have heard of this). I will let you all know when they are in stock in this store.
And finally I promised you the back page of the calendar where we have placed some of the lovely shots that were sent to us but sadly didn’t make it into the final edition, so here it is for you as promised.
Okay so I’ve been hiding away from you all but there is a very good reason and I will explain. Before I do all that I just need to explain what has happened today, meaning Friday 23rd October.
This post is going to be a long one so get your tea/coffee/wine nibbles etc ready. Kirsty don’t read this is the bath and all of you toilet readers please don’t read it there as your bum will get cold. Runners and commuters make sure your commute is long enough to be able to get through this epic post. Okay so are we all clear? Then I will begin, I will start with today’s events about the Abseil.
So the plan prior to getting septicemia was that Steve, Rebecca and I were going in the morning for the Church Service to mark the opening of this years Poppy Appeal. Now last year we didn’t go in to the service and both Steve and I regretted this. Steve had agreed to being there in the morning but he had to start work at midday so after the service he was going to return home. I didn’t know but I had won an Award and Peter Wakeman had written a beautiful address as part of the service and I’m honored. Rebecca accepted the award on my behalf and I know she would have been proud and sad. Had I of been there I would have cried like a baby. Thank you so much Peter.
Don’t forget that Daisy Den was due today also between 2 – 4. So he needed to be there for that too. I was secretly hoping to be told that I could be going home today as Friday is kick out day prior the the weekend. As they operate on reduced staffing due to most departments not functioning like they do Monday – Friday with booked appointments etc etc over the weekend in all hospitals.
All of this was fine apart from the fact that on Monday I was so ill and ended up not being with everyone but stuck in hospital with septicemia. So the new plan is that throughout the day the photos and updates could come through to me here so I could feel part of the day. Leanne BFF had arranged to get Rebecca to the venue and we had a plan to get her home. This freed up Steve to come to have an hour’s breakfast with me prior to starting work. All plans so far going well and apart from the wrong post code being entered into Sat Nav which made Rebecca worry that she would be late everything else was going to plan. Rebecca was eventually delivered to Guildford Cathedral to join the BHS family members and do the Abseil. I just want to be at home watching Daisy Den going up with Steve and Richard working together on his labour of love for me. I want so much to be at home to be with my best mate, to watch him work with Richard having fun together doing man’s stuff together as I watch on with pride, making cups of tea, cold drinks lunch, looking after my men. So I’m dreaming of all of this secretly behind his back as I don’t want him or I to get too excited and then it all goes wrong. As it has with the Abseil, I wanted to be with them so much to see Linda, Rebecca, Janine and Emma do the Abseil and be there to cheer them on but I’ve already lost hope of that happening so now I just want to be at home watching Steve and Richard.
So Steve leaves me after our hour’s breakfast together where in parts it all went wrong I have spent the night planning to do out the loft so that we have a room with a fantastic view, just for us but I hadn’t told anyone before and I now regret even suggesting converting the loft too, as I can see in his eyes the upset, stress and worry that I have now caused him again, shit shit shit shit and bloody shit why didn’t I just leave it? I repeatedly said to him that the plan had never changed that the works over the next 4 weeks would be a little mad and disruption but for me that then ends and it’s all about calm peace bad planning for Christmas but he just looks at me and looks so sad, I can’t seem to reach him, I don’t think he believes me shit shit shit shit. I did all that work last night thinking he would go, wow what a fantastic idea and all just fell flat between my heavily laboured words as I struggle to talk for more than say 10 minutes.
Steve returns me to the ward and he leaves, I had visions of him driving home excited about phase 2 the final wow factor for in the new year a room with a view that we have always wanted but this mega room, a real wow, that contains a bedroom, bathroom, kitchen area, disabled shower thing everything we would need all in the loft conversion, but Steve didn’t like the idea and I’ve made him sad.
So Steve returns me to the ward and leaves. The doctor approaches me and says that if he can get the antibiotics into tablet form I can go home today. I’m in floods of tears with gratitude tears flow as I can now see Richard and watch with pride as Steve builds his labour of love for me, my Daisy Den.
Mom is due at midday for lunch. So I am watching the clock as I can’t wait to tell her I’m coming home, I haven’t texted Steve as I don’t want to get his hopes up as they have to get the tablets first, it all hangs on that. The doctor returns to me and says that he has passed it to another doctor as they have a fantastic relationship with the pharmacy lab and he would get the results that we need. So I’m playing the waiting game and I’m dreaming of being back at home with my loved ones and seeing Molly moo again, I miss my home so much.
All the while this is going on I am thinking of the team, the abseil and how much I wanted to see Rebecca, Linda, Janine and Emma complete this abseil, I have dreams of pulling together videos for them to share with their loved ones and I cry that I can’t be with them for this day had been planned around me being there with them for the full week prior, all based around me being well enough after chemo on the Monday and yet again I had screwed it up, shit shit shit shit. what a fool I have been.
At around 11.30 the doctor came to me, he said that they can’t get the antibiotics into tablet form and that the infection in my blood is so serious that they need to get me straight away to the echo department for an emergency scan on my heart as if the infection is in my heart I will be dead within 3 weeks, there is a team waiting now and I have to go. Forget cancer and chemo this infection is too serious.
Mom is due any minute and so I ask for 10 minutes for my mom to arrive before we go, they agree. Mom is running late but arrives at about 12.10. I say hello and explain that we have to go now to the echo unit and that I will explain everything after the scan on my heart. Calls have been put in for a porter to take me but no one is coming as echo is a long way from where we are and it’s hard to find the ward sister is frantic to get me this porter. Mom must have been thinking what on earth is going on all this mega panic about getting a porter, everyone trying everything to find someone who knows where he is. We start asking around the ward and we find a nurse who knows where echo is, we have a member of staff who has the card to get us through all of the back areas as she knows a short cut through the hospital. So all ready we set off at break neck speed with my poor mom behind us trying to keep up with the speed of the team pushing me for about a good 5 -7 minutes to get to echo without a clue as to the panic and importance of this heart scan cos if it’s around my heart I won’t even be here to launch the calendars shit shit shit shit what a fool I have been.
We arrive and the team are waiting for me, It’s a special ultrasound scan just for the heart, I get on the bed and I’m covered in jelly, I have to just lie flat and still and let her do her stuff. I don’t dare look at the screen. She takes video footage of the heart too, measures it like they do with a baby if this scan is bad I’m dead within weeks and if it’s okay then we have hope again. After about 5 minutes of letting her do what she needs to do and as I have to ask, I explain that I know why I’m having the scan and how important it is. That I know that she can’t tell me as a full report has to be completed and verified etc etc but could she please tell me upon what she has seen so far are there any signs of abcesses around my heart?
She knows that I understand the importance of the emergency scan and how she can’t really comment, and I don’t want to look at the screen but she tells me that as far as she can see there is no signs of any abscesses forming around my heart.
Scan complete I then return to my mom and I have to tell her what the panic was and that it’s okay as the heart at this moment is fine but they have to get the drugs into me four times a day and we have to get back to the ward for a the agreed time. So we all as the emergency echo team have to return to the main hospital but you can go a really really super quick way across the road so we take this route with mom and we are sat at a table with two pieces of cake and a hot chocolate as planned within about 10 minutes. Mom than tells me how much I have upset Steve and how stressed out he was when he returned home hence mom being late I suppose.
Hospital life here is a real mixture and before I explain here are some photos for you
So there are 6 beds in our bay on Ward 10
The beds are laid out in twos opposite each other. Now to understand my explanation of the people on the ward I have given them names from the classic sit com Faulty Towers and if you haven’t seen this sitcom then I’m sorry and you may not understand my logic.
Right hand Side first
Bed 1 – Mrs Hall Bed 2 – Raylene Miles Bed 3 Cybil Fawlty
Left Hand Side
Bed 1 Miss Tibbs Bed 2 – Mrs Richards Bed 3 Me
Mrs Richards has questioned my entertainment license cos she is not sure that I am qualified for entertainment. This is whilst I was singing the Dad’s Army theme tune to Miss Tibbs on night. Mrs Richards, when speaking to medical staff always reminds me of the classic lines:
Mrs Richards: “When I pay for a view, I expect something more interesting than that.”
Basil: “But that is Torquay, madam.”
Mrs Richards: “Well it’s not good enough.”
Basil: “Well may I ask what you expected to see out of a Torquay hotel bedroom window? Sydney Opera House perhaps? The Hanging Gardens of Babylon? Herds of wildebeest sweeping majestically across the plain…”
Mrs Richards: “Don’t be silly. I expect to be able to see the sea.”
Basil: “You can see the sea! It’s over there between the land and the sky!”
Mrs Richards: “I’d need a telescope to see that.”
Basil: “Well might I suggest you move to a hotel closer to the sea. Or preferably in it.”
Today – Saturday 24th October
Daisy Den – Steve’s labour of love. Built by Steve, Richard, Toon and Seward
Rebecca is having a fun day too shopping with her Aunty Nicky :-))))
So What’s happening here with my results
Echo results are still not available to read
Blood cultures take up to 5 days to grow and no results as yet.
Blood tests – inflammation markers were at 193 (high) now 27 and in a normal person it’s less than 5. So all the results so far are going in the right direction.
Talk about save the best for last, well sadly you all have my bum and the Christmas back drop from conference but for me this is my favourite. I wanted it on the front cover but Steve was the final editor so he has the final say.
This is the Big Man himself, Juddy and he now only agreed to do the shot for me he hired all the costumes and had the version of doing the YMCA dance which we did endlessly whilst we worked together at Gatwick Airport. I am so proud of him for doing this as we don’t have perfect bodies and that’s what this Calendar is all about ‘Real People, Real Bodies, Real Cheek!
SO it gives me great pleasure to give to you Mr November, my Juddy.
Final shot of December I’m sorry but you have me again, Mrs December
I don’t know a copy of the back page so I’ll put that up tomorrow for you all.
Come On Peter on Strictly, can’t wait to see you dance tonight
And finally Rita prayers for tomorrow are for Karen, Frankie and all in Ward 10 here out on location and for all loved ones caring for people in hospital as I see the sorrow and sadness just in my little world so to think of that suffering up and down the country is hard to think of. For also all medical staf attending to everyone’s needs.
It has been a whole day of tests for me today, whilst my daughter joined my BHS family and abseiled of Guildford Cathedral. Photos and video footage are still flowing in so I am hoping that tomorrow we can celebrate their achievements together.
Back to your daily tease on the calendar:
This is Karen, which regular readers will know is my chemo bud who I met on Ward 12 at Wycombe Hospital. I understand what a massive ask it was of me and I know that she has only done it to support me. I am proud to give you Mrs September.
J – the Isle of Wight Secret Biscuit Agent was one of the first to volunteer her bum for the cause. She loves a good laugh and took great pleasure in watching the Isle of Wight bus tours faces as they drove past her house and saw her half naked. I can imagine her smiling as if this was everyday behaviour on the island whilst her husband took the photos. I give you Mrs October.
Enjoy your Friday night. The weekend starts here. Full update and the final two bums very soon.