Three years later.

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Hello fellow bum chums,

                                       It's three years now since I was diagnosed, T4 N2 M0, after being fobbed off with piles ointment for three years.

I had the treatment at Guys in London, chemo and radio, during lockdown on me own . It was dreadful, but it's history now.

I went for a follow up today, its been organised for six months and I have had umpteen reminders. I drove up from Devon.

All the computer systems at the cancer centre were on the blink except the one in actual outpatients department. There's a white grand piano in the foyer which has never been played while I've been there. There's scaffolding up to the top of the new super architectural building, it has balconies on every floor which never get used except by pigeons, to windy, too cold, to high etc. there's films of jungle in the lifts which no longer work, all this flashy stuff and gestures which don't work. It must be costing an absolute fortune for the scaffolding and repairs.

There's literally hundreds of people with cancer milling about, receiving treatment. I'm empathic, and get quite overwhelmed by them all. Today I was very overwhelmed and had a meltdown, it must have been 28 degrees, hot ! that didn't help.

I'd driven a long way, the first thing, in fact the only thing they did was measured my height, in my shoes to see if I had grown or shrank.

I waited and waited, I saw my doctor was dealing with a case with three concerned relatives, I waited, the relatives were talking about the Devil getting into people, Then I became emotionally disregulated and saw the doctor in the corridor an hour after my appointment time and said "when can you see me ?" she said I'd have to wait, or I'll call you after clinic, I had to leave, I was flapping, people were staring and I was triggered. She did not call me after clinic.  It's not her fault. But why cant they tell you there's a delay ???  why couldn't a nurse see us scheduled appointments if the doc was called off on another case during clinic ?

I have been trying to get some kind of aftercare for two years, I have asked and asked for a phisio for my anal sphincter, birth canal and urethra probs but the urologist bloke said, general anasthetic, we want to look in your bladder. I think my bladder is fine. He gave me hrt ointment for my now tiny birth canal and told me to use the dilator 20 mins a day every day ! yeah right. I cancelled the appointment, I want a phisio not a surgeon. Its impossible to deal with the system, you cant talk to anybody. I'm so glad of this forum.

So today I looked through the entries on here and it seems I've done alright so far, no fissures at any rate. What I have is a fat pubis, no hair on it still, a delve in my bum place which is a bit hard to keep clean, must be where the tumor was. I get pins and needles in my lady bits if I sit, still need the donut cushion. My birth canal is small and does not reach my cervix and my urethra is strangulated but works, it has a thin flow. I poo 5 or 6 times a day and recently i'm waking and needing to go straight away, I soil myself but not often. Urgency indoors in my house but fine away from home (there must be a phsycological aspect to it)

I ask for help, for a phisio or something, I ask what to expect as I get older, will it get worse ? better ?   My muscles are wasted in my bum and I cant lift my legs to the side very well to climb walls or get on my bike but im adapting, the bones one sits on still hurt. My oncologist is only concerned with her specialism, I have not got cancer, I had the gold standard treatment, that is as far as it goes. Next !

I'm glad I found about pelvic radiation disease and will call my gp tomorrow and go through this with him, there needs to be some follow up after this heavy duty treatment and the nhs is just too exhausted to do it.

Last time the surgeon saw me he was rough and made me bleed.

If anyone has any recommendations for aftercare please let me know.

Is anyone being treated at Exeter,? I'm moving to Lyme Bay in East Devon so will be moving from Guys hospital to there I suppose.

I'm having a vent here, I feel better now.  Thankyou gang.

Twigley.

  • Oh Twigley you have been through it and feel your frustration and wonder if all this so called advancement they keep telling us is the future. I suppose I have only really had one really bad experience with my hospital at Addenbrookes when I went for my tattoos by a particular cold stand offish nurse and her two impressionable co workers who seemed to be following the same path on how to treat patients. I was actually shouted at by one of them because I thought I was helping when I moved my arm when I was to she would do it. I’m profoundly deaf so didn’t hear her the first time. Before that I had to strip off with an attached tube in my arm which no modesty curtain whilst the three stood and watched and the chubby one stood there with his arms folded. Not a smile was attached to their faces the whole time or a word of reassurance. I told my specialist nurse what happened and she was mortified and told me to put in a complaint to PALS. They responded but I never had an outcome and I had contacted them twice! This was 28 months ago and a friend of mine has ongoing cancer treatment and has had to put in a complaint about her and her oncologist knew exactly who she was talking about so she is still there. Apart from that my care has been very good. I had bowel issues after treatment and they referred me to a dietitian who put me on the FODMAP diet for three months which massively improved my frequency and I have learned that it’s never going to be the same as before and I juggle the diet now according to my plans for the next day. For instance if I know I’m going to be out the next day I will eat the day before that is not going to make me go too often the following day. I had spinchter issues and urgency and have only had two minor moments when out walking and that was early days. I would go out on my daily routine walk and when I was coming home I would get so far and it was like my brain would say to my spinchter you can let go now! I really tried to control myself and started spinchter exercises. If your bowels are loose then like with most people it’s hard to control them. My local hospital have a self referral pelvic physiotherapist whom I have seen and actually have a appointment this morning. I used the dilators under her instructions after her examination and managed to get the largest pink one in but then had surgery again in August to remove a perineal lump which set me right back to square one. When I use them I have a kind of orange discharge from inside but my scans in September have not shown anything up so hope this is just dead blood cells from surgery as it only started happening after that. So it might be worth contacting your physio department to see if they can help. I also had a late effects telephone call but for some reason they don’t do that anymore. I do feel you really have to fight to get help with aftercare and although I am very appreciative with what they have done and proud of what I have achieved in my healing you never feel you will go back to normal and live with a new normal. We also have a local charity that provides health and social activities with gym sessions at our local gym and Pilates and tia chi, yoga and chat groups. I find them invaluable for gaining confidence in a secure empathic environment with competent trainers. I now have osteoporosis due to treatment in my spine so have to be aware that I can not do certain things which is hard as I used to be very fit. We need this group here for sounding off as I have met no one in my area who has had anal cancer and most of the people in our groups are breast cancer patients. I cannot talk to them about my personal journey as I don’t think they would understand. Three years post treatment is a good goal and just keep pushing and learning how you can improve yourself. I told my oncologist I want to get back to how I was as much as possible and most of all need her help to do it! Fight on Twiggy!

  • thankyou JCee,

                           that really means a lot to me, thanks, one cant talk to many people about it can you ?

    now where is this self referral pelvic phisio in Lambeth I wonder ?

    Have a great day xxx

  • Oh Twigley, this is terrible! All of my fond notions of how marvelous it must be to have NHS just evaporated!

    I felt a bit bad for 'wishing' I had a different sort of cancer, one that wouldn't make people flinch away and doctors avert their eyes and shrug their shoulders. But there's something to it. Anal cancer is just not sexy enough to get the money and research people involved, I guess. 

    Aftercare for any kind of cancer is hard to find here, there IS none for anal cancer. 

    But somebody needs to give you some help. This is not okay.

    Hugs

    Suz

  • Hi Suz, yes the NHS is good but the conservatives have run it down over the last 12 years, they are privatising everything so they can make more money to put in their offshore accounts. Hopefully we will vote in a new more middle ground gov next year and go some way towards undoing the damage the Conservatives have done to our NHS. 

       Anal cancer is rare, caused by hpv virus apparently which teens are vaccinated against these days. 

    I will make my way somehow . . . .

    thanks for your support and I hope your treatment goes or is going well.

    Sarah

  • Hi  , 

    I don’t have much to add as you’ve had a couple of great responses already, I just wanted to say how sorry I am that you haven’t had the care & compassion from those that are in charge of your aftercare. It’s so disappointing as these are the people that should understand that finishing your treatment is sometimes only the beginning & it’s the time when you need their support more than ever. 

    Nicola 

  • Twigley, I am so sorry that you haven't had the follow-up treatment that you need or much empathy shown to you.  Unfortunately most of us have been left with various aches and pains and other side effects that take some no small effort to overcome.  I have learned now just to go to my excellent GP when I have side effects that the hospital doesn't treat and every single time he has referred me for further treatment elsewhere.  But that is no comfort to you, I am hoping when you move to a local hospital your aftercare will improve or at least your new GP will take better care of you.

    And we are all here any time you want to vent.

    Irene xx

  • Thanks Irene,

                           yes I think the gp is the way to go. I have had a look at surgeries in my new town and it looks good.

    Thanks for taking the time to respond to my rantings,  this forum and its membership is the only thing keeps me on the level sometimes.

    Sarah  xx