Allpeachy's blog

Getting involved - new Hertfordshire women's cancer group

2009-11-28T16:39:18Z

I gave a talk last Thursday, at the launch of a new group which I have been helping to develop from an existing Breast Cancer Support Group. My part was to illustrate how all cancer patients need support, irrespective of their prognosis or type of cancer, and told my personal story. It was the first time I had spoken the words Anal Cancer out loud, and I told them about the refusals of support based on the 'good' clinical prognosis - that they should take into account a patient's support system and make sure they get the best advice, not just medical. It seemed to go down well, and many of the Cancer Nurses are going to come to the group. We are now called the 'Hertfordshire Cancer Support Group for Women' - and the colorectal patient features very highly! (Can't think why ....!). It's very brave of the breast cancer ladies, who've been running it for 12+ years, and it was quite traumatic to speak on their, and my own, behalf, but I think it is well worth it. I'm going to write about it somewhere within Macmillan's media, so watch out for it. This is an excerpt:

"I believe my story represents many women, whose lives and possibly relationships too, are changed through a cancer diagnosis, and whose type of cancer is less common, or has a ‘good prognosis’ clinically and therefore are not offered support. I hope that in its telling, it will enable you as the professionals to change how such patients are treated, and to look at the wider picture of their support network and circumstances that may affect their clinical outcome.

"At our recent meeting with some of the Cancer Nurse Specialists it was pointed out that our group would be particularly helpful for rarer cancers, such as endometrial for example. I am speaking as a patient who has experienced a rarer cancer. I was diagnosed in May 2007, with Anal Cancer. I then had little experience of cancer, and as her sole parent I was frightened not for me but for my 12 year old daughter.

I was just finishing a University degree, I had hoped to go into teaching, but the diagnosis halted all my plans. I had to wait for 9 weeks after diagnosis until my treatment started, and during that time I was unable to go to work, or socialise, due to pain and the constant urge to ‘go’ caused by the tumour. This left me very isolated at home with noone to talk to about my fears. I had a limited support network - I had lost my mum to Alzheimers, and she had died in the December, 5 months before. When I went for my first CT scan I wept, I had had to miss the scattering of mum’s ashes and I hadn’t yet told the family of my cancer. We were already a family in grief and I felt very alone.

Searching for support, I left a message on the Breast Cancer Support Group answerphone. I was so relieved when I received a call from them, who listened and really understood. Subsequently she phoned me again to say that the committee had unanimously agreed that I ‘was a woman living with cancer’ and should be able to come to the group.

"Apart from the loneliness, and the fear for the future, the financial implications also caused me huge anxiety. I didn’t qualify for any financial support, and had to use my small inheritance to pay for all our living expenses for over a year, until I could return to work. I had been an independent woman, changing career, but with the cancer came a loss of confidence and self esteem, and the loss of the ability to care for myself or my daughter for the 2 months treatment and struggled afterwards for months too. .....

"During my treatment I was referred twice by nursing staff to Macmillan and twice I was refused, as my prognosis ‘was too good, I wasn’t ill enough’. I was told I could use a Macmillan centre, but an hours drive away, it was impractical with the fatigue, side effects and distance.

"I understand now that my prognosis was better than some, but I experienced the same anxiety and uncertainty, and almost stopped my treatment due to extreme distress. The effect of what seemed constant dead-ends when I tried to ask for help, was to make me feel like a fraud – that my feelings about my cancer weren’t valid, that I didn’t somehow ‘belong’ or deserve to be heard in the same way as perhaps a bowel cancer or breast cancer patient."

The message was that there should be far more resources for all cancers, not only the most common, and that our group was a step in the right direction and should be supported by the clinicians.

My personal experience of Anal Cancer

2009-11-14T14:48:09Z

In case it's of any help to those newly diagnosed, here's my personal experience - though everyone's is different, and hopefully without my little blip through my ignorance/subsequent neglect in hospital the first week!

November 2009

I was referred by my GP on a Thursday in May 2007, and saw the Consultant Colorectal Surgeon the following Tuesday. I was convinced it was IBS or a bad case of piles, I had no idea it was cancer. As I lay on the couch, she examined me and announced ‘there is definitely a sizeable tumour’. I went into meltdown, all I could think of was that I needed to live for my daughter, then only 12 – I knew nothing about cancer, to me it meant death. I had a biopsy the following week and was telephoned by the colorectal nurse specialist to advise me that it was squamous cell anal carcinoma. I was home alone, and as a single mum spent the next two months very isolated. I waited from mid-May to 23^rd July 2007 to start my treatment, when I had to get myself to Mount Vernon (an hours drive each way) for my 5 days stay, and subsequently every day for 28 days of radiotherapy.

Remember I'm not medical, just a patient sharing the little I know about squamous cell anal cancer and the chemo-radiotherapy treatment. The thing you will get fed up with hearing is that everyone reacts differently, both to the tumour and to the treatment. The best thing you can do is write everything down in a note book and take it with you when you see the consultant. I also had a nurse I could phone whenever I had a worry (a research nurse as I was on a clinical trial- ACT II) over the 6 weeks of the treatment. However, after that there was only the GP for support between monthly clinics with the Consultant. I was referred twice by nursing staff to Macmillan for support, as my support network was limited (during the treatment and for some time after my family found it hard to support me and my daughter) and I was having difficulties, but was turned down as my ‘prognosis was too good’ and they only treated palliative/terminal cases in my area. The one good thing that did happen was, after phoning a local breast cancer support group helpline, they have supported me ever since – and I am now helping them evolve to full inclusion for all women with any cancer.

You will be given a ‘stage’ of T1 to T4, and an M no for spread, and an N number for any lymph nodes affected, following the results of your MRI. T1 is less then 2 cm, T2 is less then 5 cm, T3 is 5cm+ , any lymph node or other spread will give higher than T3, with N# and M# to show the spread.

For me, the tumour (T3, 5cm+ no spread) caused a blockage, restricting the canal and therefore all its muscles, fibres and blood supply. I had very painful, nervy sensations and very swollen piles inside and outside. My consultant advised against local anaesthetic creams as he preferred to leave the site well alone, especially with radiotherapy. I did not need surgery, or a stoma, either before or after the treatment. I survived on Movicol to make it easier to ‘go’ before treatment, but I had to always be near a loo and continual feelings of needing to go meant the only relief was to lie down.

Usual chemo is a combination of Mitomycin and 5FU. I was given Cisplatin in stead of Mitomycin, together with 5FU. This is a combination used in the States and being trialled here - the Clinical Trial I was on is ACT II. I had four hours of Cisplatin and 4 x 24 hour bags of 5FU. This was given in hospital intravenously, continuously for nearly 5 days. Cisplatin does make you sicky, but they give you anti sickness tablets. I had an adverse reaction to the anti sickness, Metaclopramide, which made my first week very difficult and I was left very weak. My hair only thinned with the chemo and the sickness wore off after a week or so.

On the day it starts, if it's like mine, you will be connected to the chemo as soon as they have blood test results and usually 'protocol' (you will hear that too quite a bit, it's jargon for doing things by the book) means radiotherapy won't start until later in the day, once the chemo starts

If you stay in hospital, the main point is - with the number of staff available they are stretched, it is up to you to voice your needs to get help, I learnt this the hard way - my second stay in hospital was much better than the first. The first I was in a side room, largely ignored which was not good - it will be better in the main ward where the nurses can see you if you have to stay in. Some people are given a pump/bum bag for their chemo at home, attending daily during the weekdays for radiotherapy and monitoring.

Radiotherapy begins on day one of your chemo, and continues for 28 days for 5 1/2 weeks. When you are having the treatment you need to have cleaned the area with plain water at least an hour beforehand. Any creams or residues of soap can cause burning. After each radiation, apply large amounts of aqueous cream (or the cream the radiologist gives you) to the whole area. When, after about two weeks, the skin began to become sore I switched to Emulsifying Ointment (available in tub from Boots) which is very pure, thicker than aqueous and does not sting - you can wash with it under the bath water. Side effects of radio - gradual redness of area, loss of pubic hair, eventual lifting of upper layers of skin, possible blister/ulcers, peeling leaving raw and sore areas: coat these with emulsifying ointment in the bath and pat dry very gently. The skin will continue to peel until about two weeks after treatment, keep up the moisturising with the emulsifier, or aqueous where skin has healed. Some people are offered a silver based cream. I would avoid steroids if at all possible as the skin grows back very thin.

You may be able to drive for the first three to four weeks, but should arrange for help in driving if at all possible for when the fatigue sets in, and very sore too. You will want to go ‘carefree’ under a long skirt (or boxer shorts for the boys, and a cricket box) I should think!. The first week of radiotherapy is likely to be the most dramatic - I found. By the 4th day I had diarrhoea, mixed with blood clots - I was told this was very likely the actual tumour breaking down. Hoorah for that - but quite alarming and I began to feel quite weak - at the same time as the effects of the chemo put me off eating too. Radiotherapy makes you very tired - after each dose I managed a drink and a slice of toast (lived on toast and cornflakes, and Ensure build-up drinks from the GP throughout) then a few hours sleep every day, as an outpatient too. You might want to stock up on Tesco Freestyle pads or similar incontinence pads, which protected me in the car, or out shoppin,g from 'accidents' - also sitting on a towel was reassuring and softer. Once the tumour begins to shrink, it will feel sore inside but although not pleasant when going to the loo (sometimes described as going with glass shards), it will be easier. When it begins to burn when you wee, keep a jar of vaseline next to the loo and smear it on thickly all round before going - it really does help. Also helps at night when things get a bit hot. You can also ask the hospital for some gel pads that you put in the fridge, marvellous for night time or during naps in bed.

Chemo after a few days makes you tired, and feel sick - it puts you off your food. I drank plenty of water, but still was dehydrated at the end of the week and hurt myself when I blacked out - if you feel weak and faint, ask them to check if you need saline for dehydration. The GP is the one for the rest of your needs as you will find the hospital treats you for chemo and radio, but it's very much up to you to find help for the side-effects and general well being. My GP gave me a prescription for paracetamol, ibuprofen, and Ensure build ups. Later, post-treatment depression set in – when all hospital visits become much less and family and friends think you should be okay – and she prescribed anti-depressants. I didn’t want them but they have helped over this first 18 months.

I went back to work last June, 9 months after finish of treatment, 6 months after 'no evidence' - firstly for 18 hours a week. I slept a lot in the afternoons at first! This June, 2009, I increased to 30 hours a week, got promotion, and haven't looked back. I manage any side effects, recognising when I need to be sure to be near a loo, and limiting my diet to fairly bland food. I don't eat much in public due to potential urgent need and/or gas(!) but have found that pelvic exercise, since treatment ended, and Pilates has helped enormously.

Next check up in January - I'm now on 6 monthly clinics after two years.

Always keeping positive, keeping any anxieties down that surface when some of the symptoms get worse (rich food, red wine, don't help!).

Looking forward to chatting with some of the 'new' people on here

- very unusual to find so many in the Anal Cancer forum.

I made sure my daughter, now 15, has had the HPV Cervical Cancer inoculation - apparently Anal Cancer is linked to HPV as well as

cervical.

What does 'remission' really mean?

2009-03-22T21:36:11Z

Hi all There's been some discussion recently about the meaning of remission, and Ray's blog about the AA man has made me think too about it. Like Ray, I have also been in 'remission' for coming up for 15 months. But I have a problem with that word, rather loosely used in public circles. My own oncologist doesn't use it, he says he is pleased that currently there is 'No Evidence of Disease' (NED as it is known). Remission - sounds to me like a retrospective term, to describe a period when you were NED. Or is it a time when you are NED but waiting, anticipating ED? I find myself oscillating between feeling lucky and feeling anxious. Lucky that the treatment worked, anxious that with no treatment for 15 months that it may be growing again. Whichever I am feeling I still try to make the most of every day, and have enjoyed huge personal growth through and after my experience. But I also wonder sometimes if I am realistic or pessimistic (maybe even disturbed?) to be anxious that it may return. Problem is the medics don't know. We attend the monitoring clinics (mine are now every three months, and will decrease to 6 months, then to nothing after five years - if I am one of the 70% disease free, (or is it 70% survivors?). Or is the % different because I had a different chemo from the norm on a trial - now not thought to be as effective as the UK standard - though full results have not yet been published. I don't like to ask my oncologise outright, as I am afraid of the reply. Last time I asked for reassurance, he said as a rare cancer its activity was unknown and they preferred to monitor closely because of that, and to collect data no doubt. I'm not sure if this should have been a group message, or a blog, or what. But I just felt a need to debate it. I am so glad I am in 'remission', don't get me wrong, but what does it mean exactly? For all of you awaiting results, I hope you get to hear the NED result. This must seem pretty stupid to those of you still striving for 'remission', but hope you'll forgive me for indulging the anxiety of uncertainty it brings, out of the system for most of the time. Best wishes Peachy x

A poem 'Journeywoman' - travelling through the unknown landscape

2009-03-02T15:04:59Z

I would like to share with you a wonderful poem, by an equally wonderful lady who has been fighting bowel cancer and secondaries for the last 6 years. JOURNEYWOMAN I hadn't planned to go travelling when - without warning - they sent me on a journey to a land with no maps. Sometimes I go on foot, climbing slow stairs to the top of towers. On other days I find myself blurring through stations with unreadable names. The lack of a guidebook disturbs me at first. I want to know my destination, time of arrival, will there be a bed? But I've grown to like the unexpected: a butterfly resting on a blue-painted door, a walk on sand and seagrass. Once I saw an eagle soar. (Copyright: 2009) The poem has been published in her first collection (please note that it is subject to copyright permission for reproduction) with all proceeds to Beating Bowel Cancer. If anyone would like more information about the collection, please send me a PM. I hope you enjoy it as much as I have - I think her insight, use of metaphor and beauty of writing encapsulates what many of us have struggled to explain in plain speech. P xxx

The importance of correct punctuation and meaning in written communication ...

2009-01-19T14:10:09Z

I thought this might tickle you, especially tongue in cheek following a recent spate of misunderstandings in the written word! Dear John: I want a man who knows what love is all about. You are generous, kind, thoughtful. People who are not like you admit to being useless and inferior. You have ruined me for other men. I yearn for you. I have no feelings whatsoever when we're apart. I can be forever happy--will you let me be yours? Gloria Dear John: I want a man who knows what love is. All about you are generous, kind, thoughtful people, who are not like you. Admit to being useless and inferior. You have ruined me. For other men, I yearn. For you, I have no feelings whatsoever. When we're apart, I can be forever happy. Will you let me be? Yours, Gloria

One year's remission!

2009-01-16T12:41:07Z

Just got back from my now three monthly clinics - it's officially ONE YEAR TODAY since the consultant told me there was no evidence of disease - it doesn't seem possible. I am elated and vow not to worry so much next time the clinic comes round - in fact I suggested my Onco pre-fills in my forms with 'NED'! He was kind enough to laugh .. I have yearly CT scans, my next isn't until July. I asked him if he was confident in the 'inspection' he gives me between times. Full marks for diplomacy - 'we are interested in the area local to the primary site, but if you should feel unwell or experience further symptoms then of course we will investigate'. Very polite way of saying anything is still possible. But you can't take away my bubbly this weekend and it's such a good feeling. Anyone for champers? Thought you'd all enjoy some good news, Love Peachy xxx

Fears

2009-01-01T19:20:40Z

Full of hope on this new years day, but reflecting on the fact that I am one of only a couple of people I have met through here and Macm that have not had recurrence of some kind from anal cancer. The prognosis was extremely good and I hold onto that, but sometimes the odds seem to be building up. Another check up at the clinic in two weeks' time, probably why I'm starting to worry again. Trouble is people I've got to know seem to be falling around me, I'm so there for them but can't help feeling anxious for myself. I don't suppose I'm by any means the only one who feels like this. One year in remission at the end of January!

Time for celebration, and a new year

2008-12-22T16:10:17Z

I would like to wish all my Buddies, and all those who I have had the great fortune to meet these past few months, a wonderful time over this holiday period. It has dawned on me as we reach the closing of this year - achieving almost a year of remission - how lucky I am, and all of us are, who have this time to celebrate our lives with our family and friends, and especially our children. Time with my daughter is a celebration of itself, no matter what the new year brings or how many more Christmases, this time will be a precious gift. I have lost two of my close family this year, one at it's eve and the other a few weeks ago, to cancer, and also a special friend Maggie, and another who has just been told she is terminal - a mother too. I hope you will join me in celebration of their lives. Also in thanks for our time with our loved ones. Wishing you a very Happy Christmas time and may the New Year bring happiness and health, and for many years to come. All my love, P xxx

Facing new challenges

2008-11-21T13:17:22Z

I need to write this down to 'debrief'. Today I faced what felt like the hardest challenge I have every had. It was my cousin's funeral and the family who have alienated me through directing their anger wrongly at me were going to be there. Since the rift I am totally alone as a single mum, with no other family nearby. I knew I wanted to, had to, go to his funeral for him, and his family, and for myself as we have shared such comfort in both experiencing cancer at the same time - it meant so much that I was able to be there when he died last week and I want somehow to fight on for him, and for me. I was trembling when I awoke after a bad night, but saw my daughter off to school with a smile, showered and breakfasted at leisure. Once I was driving I stopped shaking. I arrived in the car park to the site of my two 6' nephews glaring at me, but I merely nodded and walked to greet some cousins who had arrived and walked in to the waiting room with them. I spoke to several members of the wider family and found relief that, if they knew about the problems, they still treated me well. My sister arrived with my niece and so she had brought all of them. I could have been intimidated but I continued to speak to other people around me, and received one or two anxious looks from older cousins - but I held it together. Just before we went through to the chapel, I stepped forward next to my sister who had not looked at me at all and I said 'How are you?'. She looked at me and just shook her head with stony expression. I turned to my niece and said hallo, and she had a little warmth in her eyes. My brother arrived too, but unusually he didn't come and give me a hug, and he sat away from me in the chapel - so I sat alone. I focussed on my cousin's family at the front, and the reverend's sermon, I sang the hymns and relaxed in prayers - I was giving thanks that I had the strength to carry on and send him off able to celebrate his life and memories, despite the fear and anxiety around meeting my own sister's family. I asked an older member of the family if in the circumstances she thought I should continue to the reception afterwards - she said quite firmly that my cousin would be upset if I didn't and that I was important to them. My confidence has taken such a knock that I find it hard to believe that I am still a source of love and support, and I must bear that in mind. I went to the hotel for the reception, and was really worried about walking in there - my brother was keen not to be seen giving me support it seemed, which I found quite hurtful but I am unable to explain to him either if he has heard the distorted perspective of my sister. There was no sign of any of them, they had chosen not to come. Then I worried that I might be blamed for them not feeling able to come, but it didn't seem to be the case. I was welcomed and enjoyed the warmth and company of my cousin's family and friends, who interestingly have been the only people this year who said how well I looked and wished me well after what I had been through - so how can they show such understanding when my own close family can't? I said my goodbyes and was thanked by my cousin's son in law for everything I did to support them last week, and I was truly comforted by that, and he told me to look after myself. So here I am not at home, the shaking has mostly stopped and I have rambled on about today's experience - really for myself, but also to thank everyone who has helped me this past couple of weeks and given me the strength and courage to get through this. This was one of the greatest challenges and I have survived, again. Lots of love to all who face their own challenges, you are not alone, P xxx

Remission and depression/cont'd

2008-11-14T16:24:46Z

I received amazing support from my post about depression after remission. Most importantly I found that my feelings were 'normal' and shared by many of us who have experienced cancer and despite the 'no evidence of disease' still are left feeling anxious and at times very depressed. I have been applying lots of thought from the advice and experiences of everyone and have tried to explain my situation to my closest family, to explain why I have been unable to cope with their own grief and anxiety whilst trying to deal with my own with little support, other than friends and from here. Today has been terrible - I arranged to meet my sister and very calmly explained my feelings, and how the verbal attack of one of her grown up children (because I have apparently not 'stepped in' as expected) has led to deep depression and anxiety attacks. She accused me of coming for a row and criticising her son and asked me to leave. The thing is, I had arranged to meet her on neutral territory, but when I visited my cousin this morning (as I had all week as his lymphoma had finally beaten him) he passed away while I was there, so I changed it to her house in case she became upset at the news. I am feeling fairly numb now - I have as yet been unable to cry for my cousin, he had been in hospital for chemo at the same time as me last year and we have become a great comfort to each other. And I have had to explain to my daughter that it is likely we no longer have close family, but we do have uncles further away who we will visit. So I have tried to do my best again, trying to make things up even when I have been the one wronged, and failed miserably. I have been unable to make her or them understand how it is after cancer, even in remission so they could understand that I have done my best to support her in her loss, whilst coping with my own grief and loss. I hope noone else judges me so badly, I am losing faith even in myself and wondering if maybe I have been at fault - but I can't remember a lot of this year in recovering my strength myself, and I am sure I have done my best.