For those that know Marg, here's some details so far. Exact details and staff names are not given. There are other personal details and events and so on not mentioned or discussed here as its not appropriate, but there is a lot more going on than is listed here! It will be updated regularly. Phone if you want the latest! Click images for larger versions. Life has changed forever. This is authored by me, Nic (her husband) and edited and approved by Marg.
On holiday Marg noticed the lump getting bigger. Marg also having sweats and feeling very lethargic (classic symptoms). Nonetheless we had a good holiday, met dolphins, but the weather could have been better! We saw the Pirates Show in Magaluf, bartered at markets and an involved trip over precarious mountains.
Mr H. at a private hospital 4 pm. After taking some symptom notes and having a good prod, he performed a needle biopsy, put a camera up Marg's nose and down her throat, sent her for chest x-ray, and told us to come back later that evening for an ultrasound scan. He said he wanted us back the next Monday but as Nic pointed out it was a bank holiday, he made it the Friday 22nd for results. Seeing his secretary he got her an appointment pushed late into his schedule. We attended for the ultrasound at 7 pm in the evening.
At 4.30 pm she was coming round and I went to see her, late in the afternoon, Mr. H came to see us and told us that he had also done additional investigation using a camera as far as he could get it down lung airways and up in all the passages in her head and it was "clear". Marg came home a bit groggy. We got appointment for Monday 1st September to have the stitches removed and wound checked. I changed the dressing a couple of times but no other ills. The lump itself was very tender and swollen and painful. Marg was started to have difficulty sleeping due to the size of it and it now having been disturbed.
An agonising wait late in the afternoon to see Mr. H for the results. Squamous non small cell lung cancer (SNSCLC), right lung, chest, and she'd had it for "a few months". The lump in the neck was a secondary so rendered it inoperable but he made appointment to see a Dr. W at Bolton on Friday 8th September. We left rather upset, shocked, stunned. Sleepless nights and the news filtered to friends, colleagues and loved ones. Many gifts too, and thank you to each and all, it means so much.
In layman's terms, cancer is where the cells that reproduce to replace the worn out cells in the body, make a mistake (in the DNA), then start to reproduce uncontrollably. Those cells are useless, they don't perform any useful function but take away vital cell space from the good and normal cells, eventually invading the good cells. There are over 200 types of cancer.
Met Dr. S. and specialist nurse H at the Thoracic Department at Bolton. (Oncology). They talked in some detail about what they had found and how they were going to treat it. Very straight talking, but again felt a lot better after talking to them. I had to use my computer expertise to help get the CT scan images up on his computer! They were copied from the private hospital as we waited. He told us they were going to hold a detailed MDT where Mr H, Dr S, Dr. W, nurse H, the CT scan analyst Dr S would be present to discuss treatment but they were expecting it would start with chemotherapy and possibly use radiotherapy. We were told about chemo and the effects on the immune system, and general side effects. Nurse H took some bloods, made an appointment to see us to go through additional details of the treatment. We would receive notification when to attend Christies for clinic and start treatment in the post. They would be holding a detailed MDT to discuss a treatment plan. Dr. S wanted to be certain exactly what he was treating. He was suggesting that maybe another scan or more tests should be performed.
Between 3rd September and now we had no end of visitors and phone calls, thank you for making the effort to see us, for the gifts, all as shocked as we. All very touching.
After some initial map research only satnav will do and we arrived in Oak Road. We felt very strange, parking up in a very crowded car park and walking in through the main entrance of Christies, a frightening yet welcoming place. Young and old, many with scarves on their heads, but so many people. A large place, we found our way to outpatients and queued up. Told to sit on the blue chairs, we waited about an hour. LCD TV displays telling us pharmacy waiting times were 90 minutes, various clinics, most running over an hour behind. We were called into a consultant area and waited another 45 minutes. Height and weight were taken (for BMI dosing) and eventually Dr. S came to see us.
He checked we understood about the chemotherapy, told us in some detail what they were using. He initially did hint that they may try a new drug in an earlier consultation, however he said with the lump in her neck they weren't so keen to use it and instead was going to apply a very strong regime, two drugs in combination on a 3 week cycle over 4 cycles, starting today. The bloods taken in Bolton would be used, we had to go for baseline chest x-ray, and take our security sealed papers up to Ward 3. We had been given a prescription which we dropped at pharmacy which would be ready in 90 minutes or so. Marg signed the consent forms and we started the next stage of the journey. We also spoke about Astragalus that a friend had told us about, but he preferred we avoid it as he did not know how it may affect the toxicology of the chemo.
At 3.30 we reported to Ward 3, people sat in chairs with drips in their arms and a small army of nurses checking and changing bags. It was almost surreal. We got a sense that they would never turn anyone away, just make a bit more room.
At 4.25 we were called into a side room where an intravenous device was fitted (canula). Name and date of birth confirmed, and reconfirmed at each bag change, then she was injected through the device with anti sickness and a steroid then a small drip flush and finally the first bag of drugs. Gemcitabine. This was to take around 30 minutes, then changed to a saline for 1 and a half hours, then another large bag over an hour, Cisplatin, then another large saline over an hour. When you went to the lavatory you wheeled your stand and drugs with you! Unfortunately we got a couple of flashbacks (loo trips at the wrong time) so additional flush had to be used. The nurses commented how busy it was and we may have to be moved to another ward as this one closes at 7 pm!
While on ward 3 we got taking to a few people. Marg talked to T, I talked to another chap in his 80's. No matter who you talked to they were so friendly, positive, warm. We found out that we'd also started our cycle when the hospital had decided to change the rota system to fit more patients in. I called down to pharmacy for the prescription, and the on ward nurses prescribed some additional drugs, and a dropped off that prescription and collected it after the 90 minutes.
It's hard to describe how you feel when seeing the bags of drugs, some covered due to light sensitivity. These miracles of research preserving and extending life, you feel in awe and gratitude at the miracle modern science brings. At 8 pm we were taken up to ward 5. Others had electronically driven chemo systems which binged and bleeped. A sound we were to be come very familiar with.
Chemotherapy is effectively a poison, a cocktail of drugs which target cancer cells. Unavoidably they also kill off normal natural cells in the (immune system in particular) but the normal and natural cells can recover, the cancer cells do something called a "programmed cell death".
After 5 and a half hours, just after 9 pm, we left ward 5 for home. Manchester Utd was playing at home and we got caught in the traffic on the motorway back. Our daughter Molly was staying with a school friend so picked her up on the way back.
Yet another restless night but apart from feeling drained otherwise OK.
Marg awoke with a start and shivering. Taking her temp it was over 38, we called the Christie emergency line. They took a few details then called back, please bring Marg in to admissions. We had to get our daughter up but we arrived at Christies to an empty car park at 5.30 am. Her temp was taken it was still over 38, bloods were taken for analysis and I left her to take Molly to school driving through thunder and extremely heavy rain that made driving difficult. Returning through heavy traffic, we were told she had an infection and had started giving intravenous antibiotics. Marg's temperature came down and remained stable and by 5.30 Marg was allowed home with strong antibiotic tablets. Dr S our consultant came to see us on the ward, also sent us for x-ray as this was supposed to be clinic day. Marg was immunosupressed. Outside of the standard treatment this was our first experience of the care and dedication of the Christies staff. While the team giving chemotherapy are very good in themselves this side of the care was also exceptionally good. On admission Marg was seen by 2 doctors, the registrar and being looked after by a dedicated staff nurse. Even our own consultant came to see us.
Marg was in Christies, her temperature kept spiking (going over 38) several times a day, and exceeded 40 a few times for the first 4-5 days. Various medication given, one she was allergic to (meropenam). Given something to boost up the immune system which start to return to normal. However sodium was low. She was fluid balance monitored. Blood pressure was periodically low. The first 5-6 days Marg was very ill has little recollection of that time. They brought a couple of fans to cool her down but they were also blowing her hair out, thinning quite a lot now. From day 7 to being let out feeling much better but blood cultures were growing nothing so the temperature spikes were a mystery. Tested for everything they could think of, including meningitus. Marg went for intensive CT scan at the Pat Seed centre on 15th October. Good news was nothing anywhere else, and found a pocket of air where gall bladder was removed a year ago. Marg had an allergic rash all over (meropenam) and joints swelling, difficult to walk. By the 20th October feeling a lot better but still spiking. They ran extra additional tests to be sent off to other hospitals and booked heart tests at Bolton but they did not have any bed space. This was subsequently booked as an outpatient appointment. Steph and Nic visited alternately, and together, visiting is a risk factor where infections are involved, up to the point she says that's it get on the road, so she could watch her evening TV.
All of the staff on the ward were exceptional, the level of care was outstanding. They had a system, they were quite strict, for example when giving out medicines, they wore different coloured aprons and interaction was not permitted. Visitor numbers and ages were limited and hand hygiene was paramount throughout the hospital. Marg had some company people with the same, some illness brought on by chemo. Then there was the night (in the first week) when there was the grey rat lying on a bed next to a bald headed alien. When Marg was more of this planet she realised it was the lady's wig! We cried laughing, we made so many trips and with her eldest daughter too. Several times even at 7 pm or 7.30 Dr S would call to see how Marg was and what changes there were. One such Friday evening the nurse in charge of Marg said all clinics had finished and consultants had long gone home, but Dr. S arrived much to the nurse's amazement.
Marg made some friends on the ward, and had a stream of students brought by the consultants all playing "find the lump". It was also very sad, one of the friends she made was spending his last days there, and he was mid 30's.
Molly's school had to continue as normal so I spoke to the school family liaision so they knew what was going on, but the domestic side of running a home was added to my role with only me to rely on. Routine helped. Walking the dogs, washing, answering corespondance, household chores, and working of course! I find I am waking early, in some ways a lot on my mind, in others from pain as the painkiller's effect wears off.
On October 10th, Ian Botham started his 12th leukaemia walk. I saw an interview on GMTV and it moved me like never before. Now I understood cancer, it affected me more knowing that children had to endure this, as indiscriminate as cancer is. I started to feel a huge amount of respect, and totally understand why so much fund raising is performed, Pat Seed, all the others, and I vowed to join them in my own way.
On October 14th (Tuesday) Molly started to complain of a sore throat. While normally its nothing much to worry about, with Marg it was not worth taking risks and the doctor we saw agreed we did the right thing. Molly's temperature went above 37.5 a quick prescription and she was getting back to normal. 21st October dentist for routine check up. Dr. S also gave her the all clear to go home, but as it was after 7 pm, the pharmacy was closed so it would have to be tomorrow! Dr. S remarked that Marg was just one step ahead.
The district nurses called to pick up the ongoing case. Had a long chat about how we got here. Molly and Nic went for flu jabs, we qualified and were recommended as carers. Daily pill patrol jumped! Some of the regular dosages were changed, paracetamol for bringing temperature down, anti sick, anti heartburn, anti fungal, sodium, plus the regular stuff.
Marg used this as an excuse to go trick or treating, she walked a reasonable way before losing breath but came back with a good haul of sweets. We had our own fair share of visitors to the decorated house.
![[ ] marks the spot](radiotarget.jpg)
Radiotherapy, first day long appointment, remaining 7 days shorter appointments. We met Dr S. He had some good news it was clear from the CT scan and the x-rays that the tumors had been reduced by the chemotherapy although it was only a single session. Marg saw what looked like a carpet tacker, "this will hurt but you'll get over it" they said (and it did), then set up on a simulator, marked up with a tattoo pen and we have to attend now on the next 7 days. It wasn't possible to include the tumor in her neck so that may be done at a later date. After that we had an appointment with Dr. B (GP). We got some liquid paracetamol as we were told about the pain and side effects, E45 was advised but we are thinking more aftersun! A lot of people being marked up or awaiting treatment to all parts of the body, head was quite obvious, and what looked like severe sunburn. We were given a code to the radiotherapy car park and instructions. While Marg was being marked up the mains power failed in that section, equipment and energency lighting was on, but we left the place in some level of darkness.
Parked up and reported to suite 5. We thought the appointments were quick, well relatively speaking they are. We sat in a waiting area, all of the areas having red warning lights, some having a complex arrangement of automatic sliding doors. Lying on a bed to a different looking machine (from the simulator), they told her not to move as they lined her up, viewing the results on a screen. She was told don't panic or try to get off because the floor would 'drop away' as they radiate from the front and back in two bursts. In fact the bed rose quite a few feet into the air. Marg describes the sound like the automatic bin lorries, two bursts each 25 seconds. Within 2 hours she's feeling very tired and lethargic, and starting to feel burnt, so out came the after sun! We also briefly met up with T who was on the second session of the third cycle, up on ward 3. She was telling us she was being injected with immune booster (her husband J had been taught by the district nurses how to give them) for several days after the chemo. Her schedule had been knocked back 3 weeks due to the low immunity episode she had.
Our second radiotherapy session, and a little over a week to the end. Today we arranged with Molly's school that she come along with us to take the mystery out of Marg's treatment. This was the first time Molly had seen the hospital from an outpatient point of view. We took her on a little tour, the admissions ward she saw so early one October morning, the various waiting areas and clinic areas, for a bit of lunch in the Wilmslow dining room, then for our appointment. When we were called we explained that Molly was here to see what has happening to her mum.
He allowed us to go into the machine room of suite 5. He told Molly what the parts were, where her mum would be, then handed the controls to Molly and let her move the machine around, how it would move to line up before delivering the dose. We thanked him and left as Marg got ready for dose number 2.
They put three discs on Marg's chest over the targets already marked. They switch off the lights and lasers guide the machine to the right angle and location. "Don't move!" They exit the room then check. Next they come back in and remove the discs, and leave to operate the equipment. The bed rises the machine blowing air comes very close and a 25 second burst from the linear accelerator high pitch buzzing very loud, then it moves under the bed, and delivers another 25 second burst of targetted energy. All done. Until tomorrow...
We arrived to a notice that said there were delays on the machines, as two were currently out of service. It is Children In Need day (run by the BBC) and the radiotherapy staff are dressed as pirates and princesses. I thought it was remarkable, that these people looking after cancer patients, were raising fund for a completely different cause. The same procedure, lining up the three beams on the discs, removing the discs then firing the beams. There are three beams, they converge on the tumor, each single beam not strong enough to cause significant damage, but where they cross (and meet) burning into the tumor,damaging the DNA of the cancer cells. Marg mentioned she had been feeling a little light headed, also short of breath, but this was largely normal, and drink plenty of fluids. The tiredness came on after 3 or 4 hours, and more pain than of late. We also called into the surgery for Marg to have her flu jab.
Not a good day today, may elaborate later. We had a discussion with Dr. S who said that he would be cautious using more chemotherapy sue to how Ill Marg got so basically there was nothing left if the second round of chemo didn't work.
We arrived for the morning appointment, following the diversions to the special reserved car park for radiotherapy patients, the machine was running late, but the staff friendly as always. I had been up very early in a lot of pain from sciatica so dealt with a couple of work issues, one of which followed me here on the cell phone. After treatment we waited, and waited for Dr. S. He was running very late, he was the only consultant in, working on "sims" (simulations where radiotherapy targets are marked) and clinics. When he eventually saw us we had a brief but frank talk about future directions. Beginning 2nd December we would use radiotherapy on the lump in the neck, and look to restart chemotherapy in the first week of January. We have found the past week extremely tiring, and virtually impossible to manage much normal life, things on the list of things to do remain uncompleted. Tomorrow looks like another busy day that not much else will be achieved, apart from our attendance for treatment. Later tuesday we called at the doctors for a scheduled test, and to pick up repeat prescription.
Our waiting time wasn't too bad today. Last night "Holby City" on TV featured someone having radiotherapy, this is a screen capture which shows laser being used to line up the target for radiotherapy. Feeling a fair amount of burning today, and very tired. Nic arranged an appointment with a neurosurgeon for sciatica, and I expect I'll be scanned. If I need to be operated on, it'll have to fit in with everything else, somehow. A notice pinned to the wall said that Radiotherapy department had raised £676 for Children In Need. Another notice informed of the expected delay.
Let it snow? The previous nights temperature dropped to -6 C, this morning a generous dusting of snow greeted us. Molly went to Morgans to go to school, we started out at 8.20 and arrived at 10.25. The East Lancashire Road (A580) full of pack ice, the motorway was moving. Met Dr. S and discussed things so far, in particular the indigestion and hearburn which was being caused my the cocktail of painkillers we were using. So the ibuprofen (and the alternative diclofenac) is off the pill menu, and he's prescribing some other stuff, including more of the Christie's special stuff. He also offered to start the chemotherapy but we declined to leave it until the new year.
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Marg went for another simulation with radiographer A and Dr. S, using fusewire to mark out the areas to be radiated. They made a reference to the existing tattoo and added another. We asked if it was possible to give us a session today, and said there would be a bit of a wait, but we would have 5 sessions, not 4, so we have to come here on Monday 8th anyway (and my 9.45 at Cheadle on that day). We took lunch in the Wilmslow restaurant (Apple crumble!) then Marg went in, Suite 2 this time, was set up, for a 40 second blast. Pharmacy was on 1 hour 20 minutes wait so we decided to leave it until the morrow.
Horrendous! Molly came with us because there was no practical way she could get to school today. Leaving early in the morning we still got caught up in a tailback that made the 25 mile journey take 1 hour 30 minutes. We had breakfast at the Alex, then snaked our slow way into The Christie. We had been to the Alex for my MRI scan, detailed here.
Pharmacy was the first port of call, 1 hour 20 minutes was written on the board but we had a 10 minute wait before we were seen to. As we had some controlled drugs and some new drugs we had to be seen and sign for. We arrived at Suite 2 for our appointment and waited a short while, there seemed to be a lot of maintenance going on so the adjacent machine was taking some of the load. Another 41 seconds then it was all finished for that day, after lunch and post the traffic rush. Nonetheless part of the M62 was closed due to a serious accident and we were delayed getting back.
"I've got sunburn in the middle of December and I've not been over the door!" said Marg. I'm applying the aloe vera to the redness caused by the x rays. We had a long wait today, machine was running behind, but we had some interesting conversations, and one with a lady telling us about these jars of honey which helped boost immunity, at 37 pounds a jar, small jars. But she did say her immunity was better with it. Walking down the fishes corridor we passed a toddler being wheeled on a bed who could have been no more than 2 years, no hair, obviously having had radiotherapy. It put into context a little that we should be grateful for the life we have so far. I also had a chat with the radiologist who was telling me that the energy of the machine on Suite 2 was 6kv and they used photon energy. But they were busy so we left.
Switching on my cellphone, I had 2 messages, one from a friend and former colleague, the second a call from the Alexandra, they had the MRI results could I call them by return. So I called, and they asked me to go immediately to see Mr. L. We snaked our way down to Cheadle, and the detail is in Nic's story.
The day did not start well with the prospect of both of us hospitalized. A few phone calls in the morning, and I was told that I am booked into pre op today. We went for Marg's radiotherapy, it was starting to hurt more now. We met the honey lady again but we weren't too late today. Monday's final session is on suite 12, due to a service on suite 2. T and J said they would be in for their final session of chemo so we went to see them and had a chat about how they were getting on, comparing notes. J and I had a discussion about the congestion charging and how we both vehermently disagreed with it, and thought some of the proposals were utterly ridiculous. We were stood near a couple who were obviously on their first session and I think they were slightly stunned that in the light of what they were there for, we were just being normal, but that is what it is about. We left the Christie and made our way down to the Alexandra where I had to call in for some paperwork and some detail about what was being done to me (basically a hole in the spine and the bad disc dragged out bit by bit) It didn't mention what they were going to replace it with, if anything, and this was a point of clarification for the parties involved, and I'll find out Monday. I had my pre op, ecg, water, bloods, MRSA screening, medical history questionnaire, discussion of pain control, height and weight, blood pressure and oxygen level, then sent on our way at 5.45 to sit in rush hour traffic back home. Monday will be the last entry here for a few days...
I got all my paperwork for my admittance for next week. Everything has now been finalised, no lifing needed now, and the finishing touches were the lights to the outside of the house, a red white and blue theme this year, as a change to blue which everyone else seems to have. Marg's eating is getting a lot better the coating medicine is working well, still in a lot of pain and the lump has swollen so much that it's making her wake up. Since I started taking the consultant's advice about bending and so on, I'm starting to have better nights. I cancelled my acupunture session, I felt that pain was my warning sign that I was overdoing it, so I will live with it for now. The rest of this weekend will be spent preparing for my hospitalization, I'm thinking of renaming this page to reflect that! The lump is swelling up a lot.
We called at the doctors to pick
up the repeat prescription with hopefully enough painkillers to get Marg through my time in hospital. I gave the repeat prescription in first thing in the morning and I was asked if we'd got through all the co-codamol, and I said, you gave us the wrong one, we need the effervescent! A check on their system revealed their error and they handed the prescription over, but we've pretty much drunk the pharmacy dry of the MS solution, they owe us a bottle! It may be my turn during the next few days on the strong painkillers...
We spent another Christmas dinner at Steph's, too much food but it was good, with them in their new home, just a year ago they were in but living out of boxes.
Ironically Christmas 2007 we went to lapland, a dream place I had always wanted to go to and we took Molly and Megan for 4 days. Absolutely magical. This christmas we pushed the boat out with gifts but lots of people had to do our running around.
Clinic at Bolton to see Dr. S. He said that the radiotherapy had been effective, but there is no more to be had. We enquired about the cyberknife recently mentioned but he said it is only effective on small tumours that have not spread, and unfortunately does not count in this case. However he did say that there are some new chemotherapy treatments he can use, but he'd like to resume the cisplatin and gemcitabine, and complete the three remaining cycles. We're booked in on January 23rd at Christies. The pain that Marg is in is probably scarred muscle tissue so he prescribed something for it (yet more for the pill patrol!) and we have an appointment with a pain control specialist next Tuesday. We left feeling pretty positive about it all.
To Bolton to see Dr. D the symptom control doctor. She calculated the amount of painkillers being taken, and also asked about various things. She advised a few things to try, using heat pads, but recovery from this would take some time. The pain is nerve pain, both from the cancer and as a result of the radiotherapy. She said Marg would be worse in the mornings, so use something to boost then we left with a prescription, and an appointment for another two weeks. Later that day we saw GP Dr. B who put the items on their system for repeat ordering, as well as us bringing him up to date.
A slow crawl along the M61 and M60 into Wilmslow. The car park was relatively empty, but also partly closed off for the building work. We arrived at 9.25, discovered our way to the annex, went for bloods, but it took until 10.25 until we were seen by Dr. B (not Dr. S) He went though our notes then we went for a baseline X ray. We are to be on ward 5 so we headed up there, they chased us up on their system while we went for something to eat. We passed what was obviously an organ transplant transportation box being taken out through the ambulance bay. One life lost grants another a better life. When we came back we discovered there would still be a one and a half hour wait so we went down to the conservatory where it was cool and quiet. Finally at 3 PM we were called to start.
A cross check of name and date of birth, and the standard anti sickness and steroid was given through the cannula then the first large bag of saline was given (over an hour). Next the Gemcitabine over 30 minutes, then the Cisplatin over an hour, then the final litre of saline over 90 minutes. Unfortunately someone on the ward was in a lot of discomfort and was being attended to by the nurses and a doctor, and we had to wait a little longer before we got uncoupled. We had a little flash back so needed an extra flush, and finally left the ward at 7.55.
We had some extra pills to take and added to the sheet so we don't forget them, we awaited the district nurses to call to administer the immune booster. Given in the belly, it wasn't too painful and we queried should it be one or several. She told us it varied. They were experienced in giving this to a number of patients. Marg was in a fair amount of pain that seemed to have come on more as a result of having the chemo and had to supplement the MST with more painkillers.
Day 8 and second week of chemo. Today the antibiotics start. We arranged with Molly's school for her to come with us to take the mystery out of what happens. We arrived after a journey of an hour at 10.15 (on time) and we collected our security sealed notes from the annex and queued up for bloods. We were 77 with 10 in front of us. At 10.50 we made our way up to ward 5 where they said they would have to wait for the bloods to come back. They also chased up our medication prescription. We went to get a snack to eat and returned at 11:30 our quoted "chair time". They told us it would be at least an hour before we could get a slot so we went down to get something to eat in the restaurant. It was Friday so fish (cod) was on, but there was a fight as I was pulling my plate as the server pulled it back to pile more mushy peas on it!
We went back up the to ward only to be told that they had a rush of people and we would be waiting another 2 hours. We went down to sit in the conservatory, passing a small child being wheeled back to the a main ward, and wait... Marg got a call on her mobile at 2.40 to go up, they were ready. We had explained why Molly was with us so she went into the treatment room to watch. At 3 pm Marg finally wheeled out of the treatment room and onto the main ward to a chair. First the anti sick and steroid, then the saline, then the Gemcitabine, then the Cisplatin, then the last litre of saline. As we were on ward 5, our drugs had been sent up and left in the refrigerator (immune booster) and we collected a compelted authorization for the district nurses to give this the next day. Marg's immunity was 13 (out of 20) so although lowered was not at a dangerously low level. At 4.20 it was decided to remove the first cannula, and replace it with another in a different vein as it was taking too slow. We talked to a few people, we were one of the longer treatments, first a couple, then a lady who had to remain under supervision for 5 hours after treatment with Trastuzumab in case of any adverse reaction.. This finished at 8 pm and we left (and left the lady under supervision) for home. So, just as slow as last week.
District nurse called to give the immune booster, update the notes and leave Marg feeling much more lethargic. Marg starting to crave a number of food, but the "danger" ones are off the list, prawns are not allowed, live yoghurts (probiotic types), un washed and most salads, anything uncooked, most chilled! We're temperature checking but its all in the safe range. We're continuing the course of antibiotics but with no temperature they are probably doing little?
If Candelmas day be clear and bright... It wasn't it snowed, with the promise of more? Our GP is finding it a little tricky to keep up with all the medication and missed something off the list. Marg feeling quite sickly which is the expected side effect of the immune booster. Marg saw what she thought was her hair on the kitchen floor, but it was in fact deposited by the cat! The snow picture had gone by the evening.
Clinic day! We finally got here, where we should have been on the 1st October last year, it came as quite a relief, temperature was all OK, in pain, but not in hospital. We arrived at 10.15, went for bloods and x-ray (to XRD1) and waited. It was very warm, due to the building work for the new trials unit, all windows had to be kept closed. At 11 we were shown into room 6 of the annex, and at 11.30, in walked Dr. S. He reviewed the drugs we were taking and suggested increasing the MST, and the nerve drug. He was as usual impressed with the organised record keeping and made some notes. We are currently on 46 mg Cisplatin, we started (last September) on 57 mg, so it was only a 20% reduction (Gemcitabine unchanged). Bloods were showing 6 so above the "danger" level of 3. However the platelet count was low so we have to come in at 8.30 on Sunday to Ward 1 to be checked and if it is no different or lower they will arrange a platelet transfusion next week. Nurse E had let the cat out of the bag about him moving on, and he told us he was going to start working out of Hope Hospital so the next clinic would be the last with him. We left with a new appointment card, x-ray card, and prescription. With a 90 minute wait we left it for that day and merely went from outpatients reception to chemotherapy suite to ward 5 to make all our bookings. The building work is progressing. We got home in enough time to meet Molly coming out of school!
Chemotherapy Christies 3rd cycle, session 1 (Gem/Cis). On our way we heard that Jade Goody had been given her prognosis which upset us. Arrived at 9.45, got our bloods done and went up to Ward 5 with our notes. They were waiting for the doctor's OK for the bloods so we had a little delay, then they told us all was OK, our chemo was ordered, we handed in the prescription and we waited... The we were called at 2 pm and by 2.10 the process had started. Bloods had come back OK, immunity had increased, as had the platelets, so we were all set. Dr. S had changed the MST to a higher dosage, we picked those up, and the two weeks of courses. Building work was progressing outside... We were sat next to someone that was having a litre bag over 3 hours, and she would be in long after we left, which we did at 6.45, getting home at 7.30
Chemotherapy Christies, 3rd cycle session 2 (Gem/Cis). Arrived at 8.30 quiet run in. Bloods done at 9.50, arrived on ward to be told they were short of staff. Hooked up at 12.00, the Chemo nurse commented that the bloods came back high, the white cell count was well up (everything else OK too) but that indicated infection. Temperature was normal then Marg told the nurse she'd been having the injections, and she said that was it. Also with regard the swelling, it was the effects of radiotherapy. She checked with our consultant if we needed the injection planned for tomorrow, but no we didn't. We finished at 4.05 and went home in daylight. Wooden batton had been erected around the construction site and were being painted green.
Christies clinic (x-ray, bloods, consultation). We arrived, got bloods and xray done, then had to wait quite a while to see Dr. S. It is the last time we'll see him looking after us as he is moving on and we thanked him for everything he'd done. The blood counts showed Marg was anaemic and platelets were low again, so we have to come in Sunday for a check, and he arranged for Wednesday for Marg to have a 2 unit blood transfusion. He offered it to us today but she'd probably have to stay in overnight, and it has been a long day already. We also asked, and were told that the cancer is at stage 3B. On getting home the date does not match the day on the midweek forms so we need to confirm that. He said that he was not thinking of another cycle, he would leave it at the end of this one, and arrange for a scan. The wooden battons around the construction site were now painted blue! This was Dr. S last clinic for us so we asked him the life expectancy. He told us the average was 12-15 months from diagnosis, our cancer is stage 3B. With the lump found in April and diagnosis in September last year, which clock shall we use?.
Marg got the taste for Harry Ramsden's fish and chips, and the nearest we could find was Stretford, so off we went. On the way back we called in at the supermarket for some clothes.
Admissions unit 9 am for blood test and cross match for the transfusion. Junction 5 on the M60 was closed so we fudged our way to the hospital, and got there a little late. Bloods were taken on the 3rd attempt at 10 am. The results were back at 11. "Every time I go shopping for clothes, the day after I have to stay in!" Marg's blood counts had dropped so the doctor did a good job of persuading her to stay in for a transfusion. Up to Ward 11 (bed 5) for 2 units plus platelets. There was some excitement with a bell ringing and a fire engine turning up, but it was a false alarm. I left for home to do some chores and bring her some overnight stuff. The first bag was put on at 3.30 pm and her blood pressure went high. That was over 2 hours. The second bag was slowed to 3 hours and I arrived part way through with her overnight things. I left just before 9 to pick up Molly for school tomorrow. On the way out I passed and spoke to our consultant Dr. S who had seen the results on the computer. Is he ever away from the hospital?!
Chemotherapy Christies, 4th cycle session 1 (Gem/Cis). Ward 3. We dropped Molly off at breakfast club at school at 8.05, we arrived at Christies main car park at 9.10 and were sitting in the blood waiting area and had bloods taken at 9.35. We made our way to reception of Ward 3, and gave our notes to the scheduler. We went for a bit of breakfast then called back on the ward who told us there was a delay on the blood results so down to the conservatory we went. The phone went at 10.45 to call us up, and by 10.50 the canula was in and the steroid and anti sickness was given by bolus. At 11 we started the chemo drugs. As this was Ward 3, we had to hand in the prescription and looked forward to the usual 1 hour delay. First the 1 litre saline, then the Gemcitabine, then a small flush, then the Cisplatin, then another 1 litre of saline to finish off, and we ended around 3.50, canula out, we collected the prescription drugs held in the fridge, and headed home through slow traffic, the usual POETS day rush. (Push Off Early Tomorrow's Saturday).
Chemotherapy Christies, 4th cycle session 2 (Gem/Cis). Ward 5. Dropping Molly off at breakfast club at school, we arrived at 8.55. We had the bloods done and arrived on ward 5 at 9.20. The pharmacist checked the treatment was ready, and started to chase our prescription. We headed down for some breakfast then waited... At 10.45 we got a call back to the ward and treatment began. Blood results were good, so we did not need the neulasta to be given tomorrow. By 11.10 we were out on the ward, wheeling the drip to one of the chairs. The medication arrived and at 3.15 we were unhooked and left. We joined the POETS traffic again... (The picture shows a heat pack applied to her arm, the Gemcitabine stings as it goes in). We called in at the doctors for repeat prescription and the pharmacy gave me a bit of a grilling over what I was picking up! It reinforces that cancer symptoms and treatment really aren't publicly discussed often. Someone recently commented that Jade was walking around with a themometer in her mouth, when it is actually a pain reliver dispenser!
Christies clinic (x-ray, bloods, consultation and discussion about possible additional cycle). We arrived at 9.40, got our bloods done, no x-ray today. While waiting a handcuffed person was led into one of the other blood rooms. Saint or sinner, cancer is indiscriminate. went for some breakfast then saw a specialist nurse who told us the blood counts were all low, platelets and red cells, so he wanted us to get another blood sample for cross match for a transfusion, and recalling what happened last time, we didn't argue. Dr. B saw us (new permanent consultant) and he said that they should stop now as he reckoned Marg's body has had enough battering by the chemo, we told him of the scan date and said he'd see us shortly after that. He reviewed the pain relief and said he'd leave that in the hands of the specialists. Meanwhile the transfusion was arranged, 2 units of blood and platelets. We went to the day case unit on Admissions and waited, they estimated we'd start at 2.30 so ought to be finished by 9 or so.
The Day Care unit was more or less full of people having blood transfusions, mot sat around with glum faces, probably for precisely the reason the transfusion was ordered. I left them the list of medication so that she could recieve what she needed for her stay then went home to get Molly to the Party. "Do you know how to Iron things?" Molly asked as I got her clothes ready for the party...!
Marg's first blood went up at 3.30 and goes through one of the intravenous pumps, the famous bing bing bong. They regulate and set the flow. I watched as Marg had the cannula put in (first attempt hit a valve in the vein and was very painful) and the device with a twin chambered arrangement was threaded into the pump ready for the transfusion. The platelets are given just as a normal drip. We both wondered whose blood it was, but it is at times like these that you wonder at the skill and creativity of preserving human life. The garden area in the middle shows that life continued, I recall last year when we first started how the flora looked so calming, and through the depths of winter some greenery remained, but now there was a clear rebirth of the colour. The second blood finished at 8.40, then a small flush is applied to set up for the platelets. Marg's blood pressure was 196/100 at one point so they were skeptical of letting her home, however I said that we'd seen the GP and recorded such high values before, so they let us home at 9.40
March 30th 2009, Monday
My employer has been very supportive allowing me to work from home. This involves mostly early starts and late finishes with breaks betweek to attend to domestic matters, as well as caring. This afternoon there was a phone call from my Dad to say the neighbours' construction workers were cutting down his fence and did I know a good solicitor. Marg on hearing this jumped up from her TV chair and demanded we went round immediately to see the damage and discuss. The picture is of Marg, still in her pygamas top, but walking back having examined the evidence. This is so typical of her, caring and concern for others. Marg asked me to call the GP for oxygen Later that evening I paid the deposit-balance for Steph's Mexico wedding for Marg, Molly and me. We sat and watched Crimewatch on BBC before going to bed.
After yesterdays episodes of Marg putting fingers up at people (!) and criticizing the fact that I had not put the front curtains straight (several times), in a house with several oxygen generators and several backup bottles, Marg is feeling and looking a LOT better. While I tried to get some sleep, Steph helper her with daily ablutions and she flipped up and down the channels on the Sky TV and we're fairly sure it was Jeremy Kyle that brought her round! She's had some of her regular medication. The machines are not too intrusive and are doing their job. Dr B our GP called and review everything and gave us liquid antibiotic to help, and requested I contact the oncologist consultant at Christie. Later that evening she tried to have a walk without her oxygen, it didn't help. Some medication and she slept from 11pm. The nurses who called more or less ordered me to bed!
At 5.45 am I was woken by Pat who was sitting in, she wanted a brew and the TV on. After a night of deep breathing I also got some sleep for the first time. Marg started taking most of the regular medication, so starting to get back into the regular routine. Some family went home and we had a "shift change" to allow another sleep session tonight. The pain control team from the hospice (J and colleague) came to visit to review how things are going so I explained the story over the two and why we'd changed back, and discussed the record of the constant / time release and break though, as well as gave them the story so far. The said they could arrange trained medical sitters but I think family are best. The drier had packed in (no heat) so I went with Steph to pick one up as we'd be doing lots of washing now. Fried rice and curry, appropriately constructed tea (strong, not much milk, no sugar) and Marg settled. Yesterday I had phoned our specialist nurse H from Bolton who had been heeping updated with progress and took a message to speak to Dr. B our consultant oncologist and he phoned and I told him what had gone on. He was happy that Marg was stable and wanted to keep her scan date later in April assuming she is well enough to travel. He had seen the x-ray taken at Wigan and said we should carry on what we are doing. Jason gave her a tip for the National on Saturday.It is bad enough with one family member having cancer, however Cathy's better half Carl, his mother so sadly passed away in the early hours due to the same, words cannot express how much you feel for her son and understand. Marg was so sad to hear but it was right to tell her. Typical she had more concern than for herself.
This is turning out to be a rather long 'hour' since Tuesday morning. At 7 am most were sleeping and we're 24 hours without any marked clammy hands or mottles. Fatigue is obvious and Marg is resting, but breathing deeply.
The grey machines whose filters are checked and cleaned daily are generating oxygen, buzzing puffing and clicking, and if the mains fails we have a total of 8 hours supply through the cylinders (2 hours per cylinder).
I went up to the GP and pharmacy to pick up some prescription drugs, plus additional medication in vials for the nurses to be able to keep her pump going over the weekend. The called round shortly after to refill the pump and check it, and her! Her temperature is hovering around 35.8 C. Time for a shift change and I took Marie and Cathy home, and I dropped off the loaned pump back to Wigan hospital and I met Nurse D and I told him of the progress so far. I put down Marg's tip for the Grand National When I came back Pat had arrived for the night shift! I also put some batteries in the wireless door bell I got so that Marg could summon us / me without shouting. Steph has been with her all the time and the only one trusted with her ablutions!
Marg had some of her "usual" special orders from one of the local Chinese takeaways (King prawn and chinese cabbage with spring onion). They make a meal to her specification (!) Marg eat most of the prawns but not much more. The district nurses phoned to ask if we wanted a night visit, we decided that we did not need one but they said use the emergency numbers if we needed them. With the mass and constant stream of visitors, this was welcome relief that at least they gave us the choice. I had a good night, the first since Tuesday. This is also the 4th night that we have had the central heating switched off. The heat given off by the oxygen generators is keeping the whole house warm.
If proof were needed that the more you have the more likely you are to see a failure, one of the machines has a yellow light and is beeping. At 12 I called the 24 hour number and I have replaced the machine with a cylinder set at 4 l/m. Someone is coming out this afternoon. I told them it had been unplugged and plugged back in again but they said not to worry. It is surreal today, Jade's funeral is being televised, if ever you needed a reality check of mortality.
Oxygen engineer called at 2.30, 5 minutes after the nurse arrived! She made up the 24 hour driver and went through the usual checklist while I asked the gas man to move the machines into the adjacent room. It was Pat's idea and he agreed and basically put an extension on the pipe. I told him and he was happy about the UPS. He checked the machine and he said that it can alarm due to back pressure caused by the other machines or working just that little bit too hard. It did not alarm after he reset it but I told him it was the machine that went clunk, so he said he'd change it anyway. He also said that we should have had two high pressure machines, and they are due Monday. Oh joy, another visitor! With the nurst finished and the oxygen man done, I quickly went to the local supermarket for some odds and ends and returned to watch the National. Pat stood on the newly extended pipe in her heels and Marg started squashing the oxygen reservior bag as I ushered Pat to not stand on the pipe!
Our tip "Darkness" came in 13th, at least it didn't fall! The 100-1 winner Mon Mome, well, at least it was a real outsider, we've been gutted if it was a favourite! I went out to a place in Bolton that has set daily meals, Saturday is always Biriani day, one of Marg's favourites. She didn't eat much and slept. Marie is on the overnight (with Steph), she'd earlier been to Hope Hospital to visit a girl who had been pretty badly injured in an accident. Nora called in earlier and was going out for her birthday meal, 70 tomorrow!
A quiet night and Marg woke at 8.30 and took all her medication. The oxygen company rang to say they had none of the high flow units in stock presently but we were top of the pile, as the existing units are providing the prescription dose. Dr B called as I arranged a home visit and we discussed her being quite sleepy all the time, temperature and so on. We are going to keep the room warmer than it has been and a couple of hours later her body temperature had risen by a few points. GP will call again Thursday to review and prescribe in view of the Bank Holiday for Easter. District nurse called and changed and reloaded her pump. We'll need to review the medication required on Wednesday for ordering Thursday. Dr. B called back to tell me her bloods taken last Tuesday indicated she was fighting an infection.
District Nurse A called to reload her driver at 2.30. At 4.15 Marg decided to take a walk to the WC, which she managed, however the driver fell and pulled the newly sited butterfly needle out. I gave Marg some tablets and called the nurses, who called out within 30 minutes to refit the driver. They have to reload it. Early evening Marg got quite agitated and when the evening shift nurses called at 10 pm, they noted that the needle fell out again, so get the next shift we resite it (11.30 pm) as we were out of butterflies. They also added a secretion supressor to the sedative, and increased the dose of sedative. As they had to make it up again from scratch, I have to go to the Doc's tomorrow to re-order everything.
I also had to chase (ring) around pharmacies to see who had in what was required in the correct sizes, then pick up that medication. The District Nurse also spoke to our pain control specialist to get her advice and the sliding scales on the other sheets were adjusted, the nurse took the sheet and got the GP to counter sign that, and I returned home with it. She was more settled now, and we also found a cold damp flannel on her forehead was helping. Steph was cooling her off and making sure her lips were moist using some of the things we'd been given.
Her body temperature had now risen to something more like a normal figure, and I guess this was why she was more bothered. Throughout the day it was "normal" so bringing up the room temperature has worked. Pat went home, Cathy too, and Marie is on tonights shift. Steph was here too, she never really left her side apart from errands. The evening staff called at 8.30 and gave Marg a subcut of pain relief and the calming. They also offered to give her a wash down and we changed the bedding over too. Then settled to watch Shameless. It has been a VERY long day. Nonetheless from time to time Marg did respond to questions.
I tried to bring energy and light to her, I held a mirror outside and reflected sunlight onto her. "Step by Step" Whitney Houston was playing, this was her song, her tune.
Throughout the day she has responded to visitors and this evening remains calm and mostly sleeping. Earlier the district nurse calculated the medication Marg would need over the bank holiday and I mentioned it to the Pharmacy. Meanwhile Dr. B the GP called to explain he was hoping a colleague would attend with him tomorrow to hand over as he was on holiday next week, and he wrote up the scripts for Marg's medication. Pain relief was added to the driver. The evening nurses saw she was settled. During the night I was up every hour (setting my alarm) to check on her, or when I just seemed to wake. Steph and Pat were with her all night.
The one true love of my life I will miss you so much, you gave so much to many, you did not deserve this. All you have ever done is care for people and be selfless. You have taught me so much. Coming into my life was the point I started to be a better person, but you always gave far more. She was such a unique woman and loved me in a way I did not believe possible.
Marg really didn't like flowers too much (and most plants didn't last long either) so rather than flowers I am asking for donations. I am primarily considering Christie Hospital and Cancer Research. The Christie use money to fund additional equipment and resources for patient care, Cancer Research obviously we hope can find a cure for this and other cancers to stop others going through the pain we are. The work undertaken by the Christie is shared globally. Marie one of our neighbours has suggested to some of her friends that they could give blood (Marg used 4 units during her journey) so that is another option. Please consider giving via Gift Aid which allows the charities to reclaim the tax paid on any donations.
I will be putting details of her final arrangements on here, it will be at St Edwards in Scott Lane, Newtown, Wigan, a crematorium TBA, and I am wanting to arrange a wake most likely at The Wakes in Hindley, venue and timing to be confirmed. I expect this will all be after Easter week 20th April onwards. I also want a book of rememberance, rather than just names I want the stories, of which there are many to tell, many I know, many I don't know, because I think we should remember her as she was, her humour, wit, the loving things. It will be a loose leaf book so if you write on your own paper, then we can insert it in the book. It'll be a living book and I will add to it as more stories come in.
To give you an idea most of our neighbours have nicknames and apart from the neighbour concerned usually kept them to herself (and other neighbours!). I will never forget the day I got the text "can we have a little dog", and after several of these I sucummbed and we got Jack, a rather overgrown Shi Tzu. Of course he needed a friend and along came Sally. We had baby monitors when she was in pup so we could help with the birth, and we did. The only time my bags were packed (and I was out) was when the dogs went missing through the open side gate. I spend all day looking and a neighbour Julia cornered and got Sally, as Marg returned from a night shift the next morning, after my many hours searching and calling between Ince, Bickershaw and Westleigh, he was carried on a bike into our street with the words "anyone lost a dog?". Miracles do happen.
We had to get a nice wooden bench for the front of the house (replacing the others in turn), so I put up a scale of charges for people using the bench, most charges written off for good gossip. Marie one of our neighbours told me some while ago that Marg and her were sat on our bench discussing what the lump in her neck could be (pre diagnosis) and they decided it wasn't cancer and both lit up a cigarette to celebrate!
The stories surrounding all her cars warrant a book in themselves but when she ran into the garage wall, she said she forgot to brake. Briefly from when I started getting her cars, the first one was joyridden and written off, the second had a knackered engine and we got a towing bill for it where it was abandoned by the new owner who'd not completed the V10 slip. The next petrol got in the oil and the engine exploded, the next had an unexplained incident resulting in a bucked wheel rim, and extensive damage underneath ansd the loss of the passenger wing mirror. Her Fiesta the pride and joy had a smashed back window due to loose roadworks, was nearly stolen but the immobilizer saved it, burnt out interior when it caught fire during welding for an MOT (By the Horwich arsonists as she called them) and the little ZX has mostly behaved itself, apart from duff heater plugs and wonky sound system. Oh and the power steering pump breaking.
In the early days of knowing her she tidied up my batchelor pad, and in doing so unplugged a computer I always left switched on. She sat down with the cats and discussed what to do, plugged it back in and (it) carried on!
Having our child was quite a battle and it took a while. We went for fertility and so on consultations and we treasured the memory of the Chinese doctor getting his laptop out to try to explain something to us, then say "uh, no battery".
I lost count of the number of times she brought washing home. Patients she had befriended during the night with no close family and she'd wash, dry and iron their clothes ready to take back on her nightshift.
Chocolate was one of her downfalls. The drawers at the sider of her bed were always filled with the evidence, and she'd often hunt around the house, particularly in places I thought I had hidden things well. She denied all knowledge and when accomplices were involved she created an elaborate story.
Birthdays for kids in the street were never forgotten.
Please anything you want to type or hand write bring along or send and I can include it. Single or many stories and I will keep collecting.
You can also email your stories to Marg's email address (just click it) and I will print them out.
Funeral details. Margaret will be home in an open coffin Monday 20th. She will start from her home at 11 am on Tuesday 21st April (after Jeremy Kyle) and go to St. Edwards in Scot Lane, Newtown, Wigan WN5 0UA for 12:00 (dedicated car park). This is RC and it will be a requiem mass to allow something more personal to her. From there it will be to Wigan Crematorium, Cemetery Road, Ince, WN3 4NN for 1.30 where the music she requests will be played. "Step By Step" Whitney Houston (words Annie Lennox). Following from that I am arranging a Wake at the Wakes in Hindley Lancaster Road / top of Borsdane Avenue, Hindley, WN2 4JA. I will have a book and sheets for you to write, please come along and share your happy memories of her.
Notices are going in the Wigan Evening Post, Wednesday 15th and Friday 17th, and in the Wigan Observer on Tuesday 21st.
Thank you to everyone that came there were so many of you, very touching and it has made things easier.
The crematorum and gardens of remembrance looked nice in the sunshine with the cherry blossum.
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We had only family flowers, and we picked colours and designs she would have liked. Total donations recieved to us was over £300 and The Christie could also see other gift aid donations in Marg's name, thank you. I know many of you are giving blood too.
Her ashes have been laid to rest and adjacent to her mums (Catherine) which were part of her final wishes, the turf which was raised can be seen in the larger picture (click the small one).
We will be celebrating her 50th in her spirit.
We have the deepest respect for someone so brave, the journey, even to here, has not been easy, life is a precious thing too short to spend on material things and petty arguments. We only need to think of what she would have done to know what to do.
Ongoing visits from district nurses.
(That picture is of the car park and the Oak Trees in autumn 2008)