The good, the bad and the downright ugly!

FormerMember
FormerMember
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Hi folks, lamb here after an absence which has literally turned my life upside down. If anybody told me how this was going to pan out four weeks ago I would not have believed them. I have not been around for a bit as you may remember my daughter was expecting a second baby. So duly returning from abroad at thirty four weeks hubby and I set off to Sussex to look after my granddaughter  who is into everything to give my daughter some much needed rest and to help prepare for the new arrival by washing clothes, sorting bedding etc..you know the drill. We thoroughly enjoyed the days and picnics in the garden, trips to the park and I am pleased to say my daughter gave birth by caesarean in early October to a healthy baby boy so we are very blessed in having not only a wonderful granddaughter but also a grandson now. My parents, who are both terminally ill are still trundling along and although the news was a bit much for my father to take in my mother knows she now has two great grandchildren. So far so good. Baby arrived home, we had our cuddles and photos taken and prepared for the busy weeks ahead. As some of you may know I have been experiencing niggly pains since January which I have mentioned to the consultant and the radiologist doing the scans. I had a very bad infection after my operation which had to be packed and vacuum  cleared which finally decided to heal on my wedding anniversary past year..a total of six months. Anyway the radiologist was very good on both occasions when having my scans and had a good look but couldn't see anything so we came to the conclusion it was adhesions from the surgery pulling. I had a telephone consultation with my consultant when I was at my daughters and as the pains were particularly bad as I thought from lifting my granddaughter I mentioned them again only to be told that all that should have cleared up by now and I should be doing cartwheels. She did arrange for me to have an appointment in a month's time if it was still going on though . In the meantime I was in agony and experiencing vomiting and diarrhoea and had no option but to call my sister to collect us and take me back to London so I could contact my own gp, who promptly sent me to hospital on blue lights with a sepsis diagnosis. In these times of covid there is no information in or out of anywhere and your relatives only see you wheeled into the back of the ambulance. Thank goodness the paramedic reminded me to take my phone and charged with me, the last thing on My mind at that point but they took me thankfully to the hospital that I had my surgery in a year and a half ago which, after numerous arguments between departments, proved a blessing in disguise. Countless tests a followed in resus and despite my clothes having to be cut off as I had swollen to double the size of a beached whale they decided to feed me into the c.t. Scanner to examine my abdomen although there was,an argument about that as I hadn't been proven covid free which in a way was where this whole sorry saga decided to take a different direction. I was found to have a bowel obstruction and was full of infection. Questions followed. Who did my surgery, when was it done, you are nil by mouth from now not that I wanted to eat anyway. When you are struggling to remember your name, let alone your date of birth it all becomes a bit much. Then to top it all along comes a breezy nurse just on shift with the news that the ward doctors were coming round tomorrow and I may be going home so that was something to look forward to wasn't it! I didn't want to go home..I felt so flipping Ill so that was a sleepless night in the making. To round it off in comes a gynae consultant at 10 at night to give me an internal examination which put me on the roof, announcing all scans had previously been clear at the top of her voice and it was nothing to do with gynae. By now I was really worried as to what was going on and terrified of being sent home which is unusual for me as normally I am quite calm about these things. I dissolved in tears the following morning when the doctors turned up and begged them not to send me home only to return hours later in the same state. They told me they couldn't send me home until they had sorted this problem out and who had told me I was going home anyway. That was momentary relief to my ears until they asked me what I knew about my scan which apart from a bowel blockage was nothing. Now, this is not how it's supposed to be done, they were junior doctors I think but I was told bluntly that the cancer had returned, the same endometrial cancer and there was a tumour the size of a grapefruit entwined amongst everything and there were signs of spots on the liver and elsewhere. Then they left and I literally howled into the pillowin complete shock and not knowing what to tell my family. I had two biopsies under local anaesthetic, the crash trolley came out twice in the next few days as I took a turn for the worse and the family were called in. My poor husband was himself in hospital By Now having had a complete breakdown. Various tubes went in and out, nebulizers deployed. How on earth can you go from being fit and well three weeks before to this doubly incontinent wreck who has now been told I need to build myself up as I am too weak to undergo surgery under general anaesthetic and far too weak to undergo  chemotherapy, have been discharged from hospital because immune system is trashed by all the antibiotics which I am still on and covid cases are being admitted so I'm at risk. I can barely walk, have no energy and am now seriously wondering who is going to win this battle..it or me? Me of course..i don't give up that easily. But I'm struggling with this intense anger ladies which is unusual for me. To the point of yelling,throwing stuff. My husband and I had our ruby anniversary, couldn't celebrate it as we were both in different hospitals but we had plans to enjoy retirement, our grandchildren, the garden. I hope that is all still possible in the future and i know I have the prayers of those who know me to strengthen me. But what I suppose I am trying to say i s, and I digress from my normal advice here through this experience is please, any abdominal pain mention to your doctor unless you know what is responsible for it because we are alltold to look out for bleeding, discharge etc and this is by and large an easy cancer to cure. My pain was in my belly , well it ended up pushing all my organs out of place. The scans would not have detected it as they were too low down but you know your bodies ladies and without wishing to panic anybody if you feel something's not right get it checked out. So there you go, good news,bad news and ugly news but this lamb isn't done yet..it's a fighter even though it may be u upside down in its Ditch again. Thank you for listening..I feel much better now for that rant. God bless everyone. Love lamb.xxxx

  • I do hope you get to the coast soon, I too miss the sea and am plotting a move there soon! Hope all goes well for you with results. Thinking of you. Dx

  • Hello Little Lamb

    glad to hear you ok and finished chemo.  Such good news!

    good luck with tomorrow.  I am sure it will be good news! Pray tone2Pray tone2Pray tone2Pray tone2

    Sending you lots of good wishes xxxx Heart️Heart️

  • FormerMember
    FormerMember in reply to Lucki2021

    Botheration....well that didn't exactly go according to plan..not my plan or the consultants anyway. That bloody little critter has got the upper hand again and wrecked everything! I feel that before I proceed any further I ought to issue some sort of Lamb health warning in that if you feel down or depressed please spare yourself further anguish. What has happened has happened to me and doesn't dictate what normally occurs within various treatments. It is unfortunate but not the normal turn of events so please do not start to think this will automatically occur within your regime. The majority of treatments are very successful but there is always a small possibility that things won't turn out well. Am I sad? Yes. Have I given up? Most emphatically NO.  As most of you know I was on a trial to test out if adding a new immunotherapy drug to a gold standard chemotherapy regime had any benefits in tackling advanced endometrial cancer. This trial had good feedback, the immunotherapy drug has had success in its own right but the thing with trials is that you or your doctor always have the right to withdraw if you/they feel this is not having the required effect.  Initially the results were good..tumour shrinkage and everything seemed to be going tickety boo. Apart from my nhs holidays I felt better in myself and finished chemotherapy in early May, having had the last infusion of the trial drug only a couple of weeks ago. I was awaiting the results of the latest CT scan which was delayed due to the bank holiday and I finally got the results in Tuesday. Bit of a strange meeting if I'm honest and certainly not what I was expecting. Started off normally..whiling away time in the waiting area trying not to eavesdrop on people's conversations when this tall dreamboat suddenly appears on the scene and suddenly calls out my name. Oh goody..May not have to share Mrs BJH's consultant after all now! After introducing himself I didn't catch his name (mind elsewhere...well truth was I'd forgotten it it I'm honest!) All I caught was professor somebody so I asked him to repeat it. Oh don't worry...You can just call me the professor! Well if we are playing this game you can refer to me as my lady and courtesy please. One brownie point docked for arrogance....nothing annoys me more than a man with his head stuck up his own..well you know where so I won't say it. If you don't know it's bottom but that wasn't the word that originally sprang to mind! So into the little room we go . Hadn't even sat down before he boomed "I have some bad news for you"  Look mate( fast going off this bloke)...don't you ever watch TV? Macmillan advert with yellow dress woman? I have good news is what you are meant to say. What painkillers have you got at home?..I need to know. Well at this point, after picking my jaw up off the floor and scanning the room for the contraption he had used to extract his head from aforesaid orifice I kind of twigged that this was going to be one of those meetings. I reeled the list off. Before he could get another inane question in I offered up the fact that I had been feeling a bit off colour the last couple of days and I didn't know if it was the heat or if I had been bouncing around a bit too much. I had pain. Well that's your bowel blocking up was the rep!y. Whaatt? It's going to block again you know which is why I need you to take...blah blah blah. Right i've had enough...somebody get me out of here. Have you seen your CT scan? Er..no. And that's when i came face to face with it. The horrible, nasty huge blob engulfing my abdomen, twisting round and encasing my bowels and intestines. I knew what it was doing but I'd never actually seen it. He showed me the previous scan and how much it had increased in size. But I don't understand...they said it was shrinking. Yes well the chemotherapy shrank it but now you've stopped its grown back rapidly so the chemotherapy didn't work. I checked with the trial and you were on the drug not the placebo so no point in continuing that any more so I've taken you off the trial. Nice to be consulted I thought to myself. Now what? I know my options are limited. Well I'm changing your immunotherapy if I'm allowed to and we've got to start chemo again. But I need to recover don't I...have a break? Well no time for that..it's aggressive. I want you started weekly next week if I can get you in on a different regime. One will flatten you completely so I don't want to try that. In the meantime if you get more symptoms you need to come in so we can make a stoma. But you said last time I hadn't any healthy bowel. Yes well we will do it somehow...too much of a risk before. I must say you are taking this all very well. Haven't overloaded you have I? Gobsmacked mate...gobsmacked! By the way you know we can't cure this don't you? Yes I do actually....may as well have a t shirt emblazoned with it on. But come back next week and we will have plan B in place....big cheesy grin. You know the temptation to personally place his head back up his posterior did occur to me but I must be grateful for small mercies. There is a plan, I am going to continue the fight but Mrs BJH....I'm on my way!  To be continued next week hopefully! Take care ladies. God bless and good luck in your journeys! Remember this is a one off not the norm. It could only happen to a batty lamb. Right out of the ditch you come, stand up straight, turn round and onwards you go!xxxxxx

  • Oh , i am sorry that you didn’t get better news and what a ? Well you know what I want to say about said Professor. I often wonder if they are taught how to speak to people, however I have also some experience that sometimes when they are a complete..... ? they can also be fantastic at the Doctoring side of things. Although i must say the little critter is definitely not doing as it’s told, i told it to do one but its got terrible manners, and doing too much back chatting and being stubborn, and deciding its staying  where it is and has been inviting friends around too, who are very messy and don't clear up after themselves . Its good at least they have some sort of plan for you, even if sadly it’s got to that stage of being incurable but its got one hell of a fight on its hands if it thinks it can mess with the lamb. 

    Sending you some gentle bear hugs and prayers Bear 

    “let hope be your lighthouse beckoning you though stormy seas" - Jessica de la Davies

  • Wow, that must have been hard to take. After everything you’ve been through you don’t expect things to get worse. So sorry you had such an arse of a doctor. There I said it! Hoping you can get through like you always do. Stay strong! X

  • Gosh, what an insensitive B*******! However, horrific the experience, I can see from your positive words that you have risen above his insensitivity and are remaining positive. At least there is now a treatment plan in place and,hopefully, you won't have to cross paths with the callous prof again. Keep going. Big hugs xxxx

  • Oh, Little Lamb!

    I am so sorry you were spoken to like that. He sound like someone who is very uncomfortable about difficult conversations but that is no excuse.

    I’m also sorry that you face another hurdle. You have been, and are, incredibly brave. keep up the fight and your selfless message to others at this time is inspirational. You live with cancer with amazing attitude. Go girl!

    I think everyone who has experienced this b&£@“”y disease knows that the whole thing never really leaves you completely. You always wonder if it’s completely over. Your courage and insistence on staring it in the face with an evil eye is wonderful.

    None of us knows how our lives will pan out in the end and I really believe we should live in spite of that  The proverbial (or literal!) bud could run any of us over tomorrow so keep living. You are proof that it can be done and careless words from health professionals are truly missing the point in your case! 

    Gusbunxxxxxxxxx

  • I mean bus - bloody predictive text …….,

    Gusbunxxxxxxxxx

  • So sorry to hear this Little Lamb. 

    I had an awful comment from a nurse once, for which I never forgave her. It happened 40 years ago when I was just about to lose my first baby. I had been rushed into hospital with a bleed and was on bed rest. After a couple of days they let me get up to go to the loo. Whilst there I passed an awful lot of water and realised my waters had broken. I went back to bed and rang for the nurse. I began to shake uncontrollably. Whether that was something physical, or whether that was phycological, I will never know. A nurse came and said' Well, you can stop that. It won't help anybody'. I'll admit I was petrified.

    I think it must be difficult to give bad news, I know I couldn't do it. But, you would have thought it was part of their training. I'm afraid in any job you get 'bad eggs'.

    Keep fighting xxxxx

  • Oh . I can't believe how people can be so insensitive. Why oh why wasn't there a CNS present with him if he's going to give you news like that. He's obviously so far up his own orifice his brain doesn't connect to anything.

    But you, a fabulously brave lady, tackle it head on and want to kick his butt. Well I want to join the queue forming to give him a good pasting.

    Stay strong my love, I'm rooting for you.

    Gentlest hugs, Barb xx Hugging


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