Tell us your story

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Your details

First Name Sophie grace Family Name Griffin

Date of Birth 06/01/88 Male Female yes
Ethnicity (to help us be representative of the UK) White British
Address
23 Stuart Way, East Grinstead, West Sussex
Postcode RH19 4RR

Telephone Mobile 7808006032

Email sophiegraceconnor@hotmail.co.uk
Are you: Cancer Other
Carer Wife of Patient
(please x) patient (please state)
Please tell us a bit about any
family that you have
(spouse/partner, children,
grandchildren).
Employment status/Occupation : Part time drama teacher

What type of cancer were

you/they diagnosed with?
Bowel Cancer
Date of diagnosis
Type of treatment Radiotherapy and Chemotherapy tablets with possibility of further
Chemotherapy
Have you been helped by Macmillan? Yes X No

Please continue over sheet

 If yes (eg nurse, Support
Line, Macmillan Grant, We were given a Macmillan Grant that we had been allowed to split into two
Community forum on web, separate grants. One of which was 200 for post-operative clothing and the
information centre at other being 177 for travel expenses for a short break away.
hospital, etc.) please give
details of what and how they
helped. You can expand box
if you need to.

Have you done any

fundraising for Macmillan,
or plan to do so? If so,
please give some details, &
continue onto extra space if
needed.

Whats your story? Also, please tell us about any problems or issues you may have faced, too, such as:

- How was your aftercare (if appropriate)? Did you feel supported physically and emotionally?
- Have you experienced side effects or late effects from your cancer treatment?
- Have you ever had difficulty being prescribed cancer drugs or treatment?
- Did having cancer and going through treatment have an impact on your finances?
- Fuel poverty - have your bills gone up and you are struggling to cope?
- Did you get state benefits - if so, which ones. Were there any difficulties in
getting them or later appealing against decisions?
- Do you (or did you) pay for hospital car parking during treatment and follow
ups? If so, does this cause you extra financial pressure?
- Insurance have you had problems with any type of insurance (critical
illness, travel, etc) as a result of a cancer diagnosis
 Please continue on next sheet .

./
The upsetting negligence we have experienced now spans two hospitals and our Doctor's Surgery, (Judges
Close of East Grinstead). This all started in early January of this year. My husband was going back and
forth to our local surgery after suffering pain in his lower left abdomen, seeing several different doctors, all
of whom diagnosed my husband with severe constipation. As time went on however an my husband
worsened, they considered the possibility that it could be diverticulitis. The possibility was also briefly
spoken of that it could be cancer; this was dismissed however due to my husband's age (33). A hospital
outpatient's appointment was made for a month later, and my husbands symptoms continued.
Upon attending the outpatients appointment at East Surrey hospital the Dr was so concerned by my
husbands symptoms that he was admitted to hospital for CT and x-ray testing. He was placed in XXXXX
ward and was eventually given a formal diagnosis of diverticulitis and treated with painkillers and
intravenous antibiotics. After a stay of XXXXX days he was discharged with weeks worth of oral
antibiotics to finish the course. After a short period with only limited symptoms the pain and full
constipation returned in full.
My husband returned to Judges Close Surgery and was given painkilers and when the 100% constipation
continued a home-enema that did not work, He was then in so much pain that I rang the 111 medical
service. I was shocked and appalled to learn that they would not send a doctor out to see my husband
unless, and I quote he was on his death-bed or needed palliative care even though I explained that he
was in too much pain to be moved.
John was now so ill that my stepdad, my mother and I rushed him to Crawley A and E where we were
seen by a very concerned doctor who, after examining my husband, was so concerned that he drew a
cross in black marker on the exact area he believed to be a danger to my husband on his lower left
abdomen and called Redhill hospital to immediately attend to him.
After being seen briefly on the presurgical ward my husband had to wait for a bed in East Surrey hospital A
and E where his symptoms worsened and he began vomiting. We were then given a bed in the presurgical
unit and further tests were run. After xxx days the decision was made to operate on my husband to
potentially remove the portion of bowel thought to be damaged by diverticulitis. In an operation that they
felt would take an hour and a half.
The surgeons found more problematic tissue than they expected and had to perform a full Hartmans
procedure to remove a portion of my husbands bowel (later referred to as like concrete) over the course
of 5 hours and requiring my husband to use a colostomy bag. Following his operation my husband went to
ICU and then to Copthorne ward to rehabilitate.
Folowing his operation we were casually informed through nurse hand-over rounds as the nurses were
discussing amongst themselves and I happened to luckily overhear, that my husband had contracted
hospital based pneumonia. In the same vein, we were casually told during doctor hand-over rounds
during that test results showed that the section of bowel removed had come back as benign and was
reassured prior to this by my husband's surgeon that it was extremely unlikely that any cancer would be
detected.
My husband remained in hospital for a number of weeks, and half an hour before my husband was meant to
be discharged from hospital and I was waiting for him in the discharge lounge, I was called onto his ward where
we were informed that further to some more involved tests of the piece of bowel my husband had to have
removed, they found the material they had removed was a cancerous tumour and cancerous matter still
remained within my husband and thus chemotherapy may be required. This news at such a late stage naturally
left myself and my husband in a state of upset and shock. East Surrey hospital have unofficially apologised to us
for this distressing news being broken to us in such a manner and at a time in which we were finally happy to
have my husband home.
After this we were assigned an onocologist and at our first meeting were informed that my husband would
need a PET Scan and radiotherapy also and we then signed the consent form for such. Due to the area that he
is having radiotherapy in, my husband was then offered the hospital's Sperm banking facilities of which we
took up the offer of. However the way this was all broken to us was so incredibly casual, my husband had
just signed his consent to the radiotherapy and then our assigned Oncologist, Dr Cummings, literally
poked his head back around the consulting room door and casually mentioned that we might want to
think about sperm banking and that he would add this onto the form my husband had already signed
later!!
Being newly married (10 months ago today) , my husband is only 33 and I am 26 years old with no children, you
can see how all this was a great shock to us and very distressing news. We were then sent home with a
booklet informing us all about sperm banking.

I found all of this quite devastating as we were receiving one shock after another; we had only originally
expected for my husband to be having Chemotherapy not radiotherapy as well. We came to the mutual
decision once we had read through all the information for me to accompany my husband and make use of
the room on the Onslow ward at Guildford Hospital for him to make the 3 deposits (that we were only
given a week to sort out as he was due to start radiotherapy the very next week and there has to be two
days in between each specimen in order for it to be viable! So we felt really rushed into all this massive
decision making that could effect our whole lives).

It explicitly states within the information booklet that the use of a collection condom could be obtained if
we so desired. Not only were we denied this, but we were then questioned as to the validity of this
request and asked to present the booklet to a lead nurse called Liz Baverstock , who I felt mocked us and I
quote "Hadn't been asked for the use of this in all her 6 years of working there!"

We were only given access to this room between 9 and 10am (and we live in East Grinstead in West
Sussex) and Liz proceeded to remain within the room speaking about the fact that this wasn't available to
us until 9:20am.

Following the commencement of my husbands radiotherapy at Guildford Hospitals St Luke's Cancer

centre, my husband and I attended a consultation before my husband's radiotherapy session. We were
under the impression that Dr Cummings would be leading this meeting as we haven't seen him for several
weeks (our first encounter mentioned above) even though he is our oncologist. We were informed by a
registrar who was taking Dr Cumming's clinics that day, that Dr Cummings was on holiday. The registrar
proceeded to tell us that further to my husband's PET scan, there was more distressing information
regarding a possible further operation after chemotherapy treatment. The reason this is unacceptable is
that we were told by Dr Cummings during our first consultation in Crawley hospital, that if there was
anything detected from the PET scan, we would be notified immediately. So much so in fact, that we were
lead to believe that there was the possibility that my husband may not have even been able to receive
radiotherapy due to the position of his post-operative Stoma, and that the PET scan along with a
conversation that Dr Cummings was due to have with the surgeon who operated on my husband would
indicate if the radiotherapy treatment could go forward.

We had heard absolutely nothing from Dr Cummings and so just had to proceed with the radiotherapy
appointment that had been booked in advance of this alleged conversation, regardless of having no
knowledge of it's , or the scan's outcome.

In addition to this, we came home from this meeting at the hospital to find a letter from Dr Cummings to
our local Doctor, informing them of his pre-ordering the radiotherapy and PET scan. This letter was dated
as being over a month old, and as I have previously stated, my husband was now three weeks into his
radiotherapy treatment. Why this letter has been so long in getting to us, I have no idea. It would appear,
as this is not the first letter to be held onto my Dr Cummings and his secretary, that time and again, letters
and results that are urgent are not sent out to patients and other doctors when they should be.
We have since spoken directly to Dr Cummings and have been informed that following his communication
with the surgeon that it is highly unlikely that a further portion of my bowel would need to be surgically
removed. He then did apologise for the breakdown in communication.
We have also had a great deal of problems in regard to patient transport. I know that most of these
drivers are volunteers and am very grateful for all their service but I feel I am doing this a disservice by not
including the following; as we live in East Grinstead and don't own a car, we require the use of the patient
transport service.
After a session of radiotherapy my husband was getting changed ready for the return journey when I was
rudely approached by our driver, who loudly enquired as to the length of time my husband was taking in
the toilet facilities. I wasnt aware of this at the time but he needed to change his colostomy bag, a process
that can sometimes take a while, especially as this is a very new adjustment my husband as had to make.
I reassured the driver that my husband would be along presently and not to worry. The driver then
proceeded to badger me a second time as to why my husband was taking such a long time in the toilet,
and threaten that if he did not hurry up then he would be forced to leave without us. This is unacceptable
behaviour, surely drivers need to be made aware that a great deal of patients that they are transporting
are suffering with bowl problems if not indeed, like my husband, actual bowel cancer?! The radiotherapy
alone can cause distressing changes in bowel movements, and I feel that a great deal more sensitivity is
needed when dealing with patients and their families and careers.
This is a very distressing time for everyone involved with the battle against cancer, and the lack of maturity
and sensitivity in this instance, I find astounding and would not want this to happen to anyone else, much
less some of the more frail passengers that the drivers are transporting.
My husband and I have made our recent complaints more formal and wished for them to be seen at a
senior level through the PALS service within the hospital.
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Please return this form to:

Alison Davies by email to: aldavies@macmillan.org.uk (020 7840 7806)
Alternatively, you can post it to: Freepost RLZT-TZLJ-RUYK, Alison Davies, Communications Team, Macmillan
Cancer Support, 89 Albert Embankment, London SE1 7UQ
Registered charity number 261017. Isle of Man charity number 604. Welfare rights team,
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